# Extreme Fatigue Support Group



## RosieM

I am so tired of being tired!! I know that fatigue is a symptom of crohn's but why? What is the reason or cause? I have had many blood tests from doctor visits to being admitted to the hospital (for crohn's, in general) and no one has ever said that I'm anemic, or anything like that. It makes me think I'm crazy...I have such low energy and can sleep just about anytime of the day. I want to be motivated to do things and enjoy life but it's so hard when I'm exhausted everyday...are there certain medications and/or treatments that would help me?


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## Josephine

Hi Rosie,
          I am flaring since March minus 16 weeks steroids which work short, current on prednisone foam we can all guess where go. 

I am mother 3 girls and have partner. I wish get energy just do something with out stop or finish girls bedroom.


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## 33WIV

I Know how you feel, my body just doesn't want to do anything and its hard trying to keep all my homework or go to those late night classes. I do have anemia and acid Reflux which doesn't help, but I think that same things that helped me will help you. Getting into a set routine helps, and truing to go to sleep the same time every night and waking up the same time every morning, and drinking water through out the day and staying supper!! Hydrated. It helps to try to walk in the mornings or some easy yoga then again later in the day. I was jogging for 30min each morning everyday and though it was hard I found that I had more energy in the day.... and just making sure that I was drink water and keeping everything as consistent at possible.... I took about a week before I noticed a difference but once you get into a habit and a set routine, it makes a hug difference..... and include pampering yourself  even though its hard as a parent try to do something that brings you joy and relaxation everyday.....For me it was yoga or enjoying my favorite food, or even sunbathing. I hope that this helps.


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## Essieluv

The fatigue I get from my Crohn's is so crippling. I cannot do much, and when I do finally muster up strength to accomplish something, I have to rest for days after. It is so annoying, especially because people just assume that I am lazy. I am not lazy, I'm just so exhausted!


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## Josephine

Rosie, can I join please?


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## jsesaic

Does anyone else still suffer from tiredness when they're in remission? I have had two operations in the last 10 months and the doctors think i am ok at the moment but i am unbelievably tired! So i was wondering if crohn's sufferers are tired just when they are flaring up or all the time haha


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## costina

Can't speak for everybody but whether I'm flaring or not I'm extremely tired so can't say it's just a flaring issue.  I was talking with a nurse friend and she suggested that maybe it's because my body just doesn't absorb the nutrients my body needs because of having crohn's...


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## Essieluv

costina said:


> Can't speak for everybody but whether I'm flaring or not I'm extremely tired so can't say it's just a flaring issue.  I was talking with a nurse friend and she suggested that maybe it's because my body just doesn't absorb the nutrients my body needs because of having crohn's...


I think this can be the cause my fatigue, too.


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## Goddess

While they were still working on a diagnosis, I went to see my GP because I was so tired.  I was only awake 6-7 hours a day. And I had real trouble concentrating to even read.  She sent off some blood for testing and suggested I see a psychiatrist to rule out depression.  Well, I told her that neither my psychiatrist nor my therapist thought it was depression, and that in fact they'd said that the medication I was on should prevent that anyway...and that they had advised me to see my GP!!!!

She just said to come back when the bloodwork results were in.  In the interim my GI diagnosed me with Crohn's, and ordered a series of iron infusions because I was severely anemic.  I went in to see the GP the next day.  She'd gotten the results.  She was fawningly sympathetic, like she expected me to die tomorrow.  "Oh, if it's CROHN'S no wonder you are feeling tired...and depressed."

LOL!  I was moving away anyway, so I didn't bother with it.

But I did do the iron infusions.  They did make me feel better, and not as weak, but the sleepy-fatigued-lack-of-concentration really didn't abate. So I really don't think it was just that.

I only worked for 6 weeks in the past year.  That job was (supposedly) half-time, with a 1-1/2 hour commute each way.  I'd come home, eat, walk the dog, and go to bed.  Weekends were sleeeep.  I finally got a clue and quit.  And slept for a week.

So, IMO it wasn't anemia.  My disease is limited to my colon, so absorption issues are not so likely.  

The whole time, I was in remission.  Still fatigued, but better.  

BUT, I now feel hesitant to undertake anything biggish for fear I won't be up to it. That's the scary, worrisome part.

Never did find anything that helped with the fatigue, but I thought it was gradually getting more energetic. Recently I had another flare, and I'm back to Square One.

Lifestyle changes are all well and good, but what if you're doing all that already?  Just seems like a waste to have so many people functioning at a low level when it's obvious we're not just lazy.  Should I just suck it up and push on through (but then not much quality of life when the price is being asleep the rest of the time), or do as much as seems doable and hope it's temporary...when I'm now pretty sure that it's not?


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## cca2013

I'm currently in a flare right now and I'm exhausted. I was so frustrated while I was hospitalized because I would tell the docs how tired I was and they would just shrug and look at me as if I were crazy. A nurse brought me a walker, because they assumed from my complaining that I couldn't walk. I had to explain to them that even if I used the walker, I would still walk like a zombie with my head down. In my brain and my entire body, I feel like a limp noodle...like I'm being held up by a string...it's hard to explain. 

I should be catching up on homework and papers but I'm so freaking tired. 

And I start work Dec 13th. I'm praying that I have half of my normal energy levels by then. There's no way I will be able to get to work by 7:30...stay until 5 and then drive through horrible traffic to get home. Ugh. 

I've been taking vitamin d3 and calcium and that helps A LOT. Just a few weeks ago, I couldn't even hold my head up or even complete a sentence without getting winded.


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## HorseLover!!

I'm currently still in a flare of 6 months and I'm absolutely exhausted its horrible I can barely do anything because I'm so tired sometimes when someone is asking me to do something I fall asleep in the middle of them telling me what to do. There has been a time where I was on the bus on my way home and I fell asleep and missed my stop so I ended up in London .


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## Essieluv

The fatigue is starting to affect my attention span. I cannot seem to concentrate on anything. I can't read for very long, the sentences get all jumbled. And it's so hard to partake in conversations....


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## HorseLover!!

Essieluv said:


> The fatigue is starting to affect my attention span. I cannot seem to concentrate on anything. I can't read for very long, the sentences get all jumbled. And it's so hard to partake in conversations....


I'm having the same problem


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## UnXmas

I think I belong in this group. Does anyone else sometimes just want to cry when they know they have to go out somewhere when your body is desperate for sleep? Even social things that are supposed to be fun, they're such an effort.

And sometimes I get to the point where I can't even think straight, and I know I _need_ to sleep, right now. And then I'll nap for an hour and feel so much better.

I can sleep anywhere, any time, no matter how noisy it is, how light it is, or what else is going on around me. The only time I couldn't sleep and wasn't terribly low on energy was on prednisone. I'm underweight, so my doctors think that's why I'm so tired, but they don't seem able to grasp it when I tell them I was just as tired when I was a healthy weight. I don't know the cause. It just comes with being ill. 

Getting a good night's sleep is essential, otherwise I can't function the next day. I never stay up late unless I'm certain I will be able to nap loads the following day, though I like to get up early - I'm a natural early riser, a lark - so I go to bed early too, generally. Evenings are the worst time of day for me, energy-wise. It was terrible trying to have a social life when I was at uni; most students think the late in the evening, just when I'd be going to bed, is the time to _begin_ social activities.

I find eating makes me sleepy, so I plan it so I can have a nap after a meal or eat right before bedtime. Also, for some reason in Winter, I find that keeping warm helps me wake up a bit. I think possibly because you lose energy when your body's struggling to heat itself. If a put a heater on or get a hot water bottle, it can help me stay more alert.


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## UnXmas

jsesaic said:


> Does anyone else still suffer from tiredness when they're in remission? I have had two operations in the last 10 months and the doctors think i am ok at the moment but i am unbelievably tired! So i was wondering if crohn's sufferers are tired just when they are flaring up or all the time haha


I do! How long ago was your last operation? A big operation can take months to recover from completely, it can take a lot out of you, so you may still be tired from that.


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## HorseLover!!

UnXmas said:


> I think I belong in this group. Does anyone else sometimes just want to cry when they know they have to go out somewhere when your body is desperate for sleep? Even social things that are supposed to be fun, they're such an effort. QUOTE]
> 
> I hate getting that feeling when you just want to cry knowing that you have to go somewhere and do something, your so tired you brain and your body just goes ugh really do you have to go out. social evening I definitely agree they are an effort to get up and go to, in fact everyday life is an effort :lol:


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## MarieClaire

Hey I'm newly diagnosed with Ulcerative Colitis, leading up to being diagnosed and even after I would sleep all day and all night only getting up to use the bathroom. My flat mates also think I'm lazy and claimed I'm over sleeping that's why I'm so tired. Ahh the joys of living with people that have no clue what you are going through. Right now I'm not tired only due to the fact I'm on prednisone.


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## UnXmas

MarieClaire said:


> Hey I'm newly diagnosed with Ulcerative Colitis, leading up to being diagnosed and even after I would sleep all day and all night only getting up to use the bathroom. My flat mates also think I'm lazy and claimed I'm over sleeping that's why I'm so tired. Ahh the joys of living with people that have no clue what you are going through. Right now I'm not tired only due to the fact I'm on prednisone.


Hi MarieClaire, welcome to the forum. It is hard when people don't understand our disease and mistake it for personality failings like being lazy. How much have you told your flatmates about your illness? Prednisone is great for boosting energy, even though it's a kind of fake energy in a way. But hopefully if prednisone can get your disease under control, you'll be feeling energetic for real soon. 

Btw. you might want to post an introduction in the Your Story section here: http://www.crohnsforum.com/forumdisplay.php?f=5 It's a good way to introduce yourself to the forum, if you'd like to.


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## MarieClaire

Thank you I might just do that  Yes I have told them about as much as I understand. I guess its just as new to them as it is to me.


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## Goddess

Even during remission I'm fatigued.  I thought back to the last time I felt normal and, voila, it was when I was on Prednisone.  So maybe "normal"isn't normal anymore.  I'm very worried that the "fake" Prednisone energy is the only kind I'll have anymore.

Stepped down the Prednisone from 40 mg. to 30 mg. a couple of days ago, and slept 22:00-7:00, 9:00-6:00, which is fine right now, but not exactly conducive to having a life.


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## steelerfan

I would also like to jump in on this conversation.  I had surgery in May of 2012 and have since experienced extreme fatigue.  Never have I been sure if this was from the condition or my imagination.


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## hingrum

I have also been experiencing extreme fatigue!  More so than ever before!  I have always had a energy problem.  I am anemic, etc.  It has gotten so bad I can't even keep my eyes open AT WORK! I have found myself nodding off and this used to never happen.


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## Dackelmann

Essieluv said:


> The fatigue is starting to affect my attention span. I cannot seem to concentrate on anything. I can't read for very long, the sentences get all jumbled. And it's so hard to partake in conversations....


Same- I'm usually an avid reader, really having trouble reading more challenging books.It tires me really easily. Studied for and sat a 3 hour exam as part of an arts degree yesterday (history and politics), swatting was a nightmare and trying to write for three hours I found more difficult than before. Because I tire easily I've taken up graphic novels for a wind down- it keeps up my lit' habit and have found a new source of enjoyment.

I get up at 4.30 am for work and I'm kaputt by 10am when I'm usually on the go till well into the afternoon. Like a lot of others I'm tired of being tired.


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## Earthsoul

I am getting extreme fatigue after eating solid food, and now on the NG, fed up


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## UnXmas

Earthsoul said:


> I am getting extreme fatigue after eating solid food, and now on the NG, fed up


Eating makes me tired too. You know how you hear about people getting sleepy after eating a big meal? Like taking a nap after Christmas dinner or whatever. I seem to feel exhausted whenever I eat, even small amounts. I always get desperate for a lie down or nap after lunch, and I take advantage of this sleepiness in the evening, by eating right before I go to bed - it ensures I'll fall asleep pretty much as soon as my head touches the pillow. I hate it if I have to stay up after eating an evening snack. I guess digestion is hard work for me.


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## Earthsoul

I am not a good person when I am lethargic, I ended up rowing with my husband and being truly foul  he has been really good in all honesty, but I wish so much I had more energy!


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## hamster139

I definitively belong here.  My fatigue has really destroyed my life.... it started up when the Crohn's started... and hasn't let up.  I've done every test under the sun... including sleep testing... no issues... just my body attacking itself and causing me to feel tired/sick all the time.   Its definitely worse during flareups....right now  but it persists afterwards...  I am maybe at 30% energy level between flareups... and 5% energy level during.

a few things that might help between flareups (assuming you've done blood testing first)

1) don't let your sleep get below 8 hours.  (9 is best) This may involve lifestyle changes
2) consider wakefullness drugs ( I use vyvanse... it doesn't give me energy... but keeps me from being a vegetable, and its well tolerated by me.
4) economize everything... don't ever over-exert yourself. You may get 'fake' boosts of energy for an hour... don't use that time to exert yourself.... it will come back to haunt you for the next couple days.

If you are having a flareup.... not much can be done.... the fatigue becomes so strong that its nearly impossible to manage... just do what you can to manage your life during this time.... let people know that things are unusually bad for you. Sleep sleep sleep!!  For me... Prednisone helped... initially, almost like a miracle... but it never really got me into remission... it just kinda 'paused' the flareup.... but I may be immune to it now... not sure.


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## hamster139

Goddess said:


> Even during remission I'm fatigued.  I thought back to the last time I felt normal and, voila, it was when I was on Prednisone.  So maybe "normal"isn't normal anymore.  I'm very worried that the "fake" Prednisone energy is the only kind I'll have anymore.
> 
> Stepped down the Prednisone from 40 mg. to 30 mg. a couple of days ago, and slept 22:00-7:00, 9:00-6:00, which is fine right now, but not exactly conducive to having a life.




Wow..  you sound like me.... exactly.


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## Spooky1

This is definitely the group for me. Not only is it my mind that is absolutely knackered, but my whole muscle system and the bones seem to be so painful and exhausted.  Moving them is just extremely hard work.  But at least I see many of you understand this extreme fatigue.  Sometimes I wonder if the high white count that I always have is causing this tiredness so that the body can relax and heal.  But I'd so rather be doing something.


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## kauffman08

Don't know what to do with a 40 hour plus work week and a cleaning job while all I want to do is sleep!

Started seeing a GI doctor for the first time in 7 years after diagnosis of Crohn's Disease. 

Take all the right natural supplements, foods, and sleep habits. Any type of help for this chronic tiredness??


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## Spooky1

None of us seem to have a cure, we're all suffering.  The fatigue seems to be one of the worst symptoms of crohns.  We are all suffering with you, Kauffman.


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## hamster139

kauffman08 said:


> Don't know what to do with a 40 hour plus work week and a cleaning job while all I want to do is sleep!
> 
> Started seeing a GI doctor for the first time in 7 years after diagnosis of Crohn's Disease.
> 
> Take all the right natural supplements, foods, and sleep habits. Any type of help for this chronic tiredness??


Start with the complete blood check... as a precaution.  I had my doctor test anything and everything...  I even had a sleep test... but no dice.

If it turns out to just be the exhaustion we all experience from our bodies constantly attacking ourselves... it really becomes more about sleeping and rationing energy... its no fun at all.. but that's what I've had to do.

Eating well helps me mentally a bit..., but the fatigue just doesnt go away... it just always lingers... its only gone when Im on prednisone.


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## Spooky1

I was on steroids for 9 years solid many years ago.  I had no fatigue issues as far as the whole mind and body is concerned. I cannot shift the complete lack of muscle energy. I have issues just doing anything physical and my mind is objecting to thinking correctly and at a normal speed to keep up with what people are saying to me.  But I'm pleased I'm not the only one.


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## spinbot

Newbie here, but not with respect to my Crohn's (30 years of dealing with it, since Age 12).   I've read through everyone's personal experience, but mine seems to be somewhat different.  I never seem to get enough restful sleep.   My average is 4hrs 5mins and I wake up about 10 times per night, a couple times I get out of bed to urinate as I drink so much (no way to stop it due to dehydration issues).  I have no large bowel, but do have an ileostomy that usually carries me through the night.

My issue is that I am falling asleep while driving now, which scares the heck out of me.  When I get that feeling of extreme fatigue, I try pulling over, napping on the side of the road or walking around the car to get blood flowing.  It seems to help sometime, however other times its a 5 minute fix and then I return to my previous state.   The sad part is that I live in a small rural town and commute an hour+ in to work and an hour+ home each day.  My days are long, as my alarm goes at 5:30am, I leave for work at 6:15am and usually get home between 5:30pm-6:00pm.

I have osteoporosis (thanks to 20 years of prednisone use) and take morphine to deal with constant discomfort in my spine.   I find lately that things are getting worse as I have nights with net sleep of 2.5 - 3.5 hours now.  I even took Friday off this week for fear of dying (worried I would fall asleep and run off the road or in to someone).

I'm now in somewhat what of a dilemma.   If I talk to my doctor about my sleep issues and how its affecting me, I run the risk of losing my license, which in turn prevents me from working.  If I don't tell her, I may end up losing both my life and someone else's if I get in an accident.

I'm in Ontario, Canada.   I'm trying to decide what I should do, bearing also in mind I have a mortgage and car loan that needs to be paid.    One option is to take sick leave and collect Employment Insurance, then I would have up to 15 weeks of paid leave to get my sleep issues sorted out.  This is assuming my doctor provides the necessary note.

Am I alone in my fatigue issues or are their others that just don't sleep enough and that, combined with Crohn's nutritional issues is tough to deal with?

Thanks!


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## Write2bheard

I know exactly how you feel. I can't seem to ever get enough sleep. I too live in a rural area. I am fighting to get disability because of the fatigue and concentration issues. I rarely drive, having my spouse or daughter take me where I need to go. I was telecommuting, but my company moved its HQs and is not permitting telecommuting anymore. It is a 2 1/2 hour drive each way. I have been without pay since November, adding more stress as I juggle payments with just spouse's pay (a fraction) of mine) and help from my kids as they can. Since I don't know the Canadian system, I can only commiserate and not advise. Just know you're not alone.


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## UnXmas

spinbot said:


> My issue is that I am falling asleep while driving now, which scares the heck out of me.  When I get that feeling of extreme fatigue, I try pulling over, napping on the side of the road or walking around the car to get blood flowing.  It seems to help sometime, however other times its a 5 minute fix and then I return to my previous state.   The sad part is that I live in a small rural town and commute an hour+ in to work and an hour+ home each day.  My days are long, as my alarm goes at 5:30am, I leave for work at 6:15am and usually get home between 5:30pm-6:00pm.
> 
> I have osteoporosis (thanks to 20 years of prednisone use) and take morphine to deal with constant discomfort in my spine.   I find lately that things are getting worse as I have nights with net sleep of 2.5 - 3.5 hours now.  I even took Friday off this week for fear of dying (worried I would fall asleep and run off the road or in to someone).
> 
> 
> I'm now in somewhat what of a dilemma.   If I talk to my doctor about my sleep issues and how its affecting me, I run the risk of losing my license, which in turn prevents me from working.  If I don't tell her, I may end up losing both my life and someone else's if I get in an accident.
> 
> I'm in Ontario, Canada.   I'm trying to decide what I should do, bearing also in mind I have a mortgage and car loan that needs to be paid.    One option is to take sick leave and collect Employment Insurance, then I would have up to 15 weeks of paid leave to get my sleep issues sorted out.  This is assuming my doctor provides the necessary note.
> 
> Am I alone in my fatigue issues or are their others that just don't sleep enough and that, combined with Crohn's nutritional issues is tough to deal with?
> 
> Thanks!


I think you know that the short-term solution has to be to stop driving. Whatever financial problems it brings, they will not come close to being as bad as you will feel if someone else is injured or killed if you fall asleep while driving.

I know it's not as simple as that - the fact that it's possible you may continue driving without hurting yourself or anyone else means that in reality it's not a clear-cut choice.

Maybe you should investigate with a doctor whether something else can be done to manage your discomfort and pain. You won't necessarily have to broach the driving issue right away, just explain the pain and the resulting insomnia. 

You have two options to approach this, though you can try both: tackle the pain or try to sleep through the pain.

There are some great meds to help you sleep. Usually I'm the opposite - I can sleep anytime, anywhere, but prednisone, when I was on it, caused me awful insomnia (though not with any tiredness - I had more energy than at any other time since being sick when I was on pred). After some unsuccessful attempts at trying out sleep meds, my doctor prescribed me Amitriptyline which gave me the best nights' sleeps I ever had, even while still taking the prednisone, and it got rid of the restlessness pred caused me too. Amitriptyline helps me so much with sleeping through most pain and discomfort and I continue taking it now I'm no longer on pred - and it's still helping me sleep, I've not become tolerant to it.

There are many options for meds for sleep, if you talk to your doctor you may find something that helps you, and it may be that it is easier to find a solution this way than to try to find ways of controlling the pain itself.

You really should stop driving if you can't trust yourself - even if you're not actually falling asleep, if you're tired your reactions will be off and your timing slower.


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## Spooky1

I also have these issues. I am trying Melatonin as a sleep aid.  I also read somewhere many years ago that it does help something to do with Crohns.  I must reinvestigate that.  But I'm sleeping more fitfully when I do sleep.

I too live in rural areas and find a long drive incredibly tiresome and muscle fatigue and joint issues also mean I take my time on any journey and take breaks whenever I need to.  I am wondering if moving nearer would compensate for less use of petrol.


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## spinbot

I think my concern about taking any medications to aid in my sleep is I don't want to miss getting up when I really need to (bathroom).   Before I got my ostomy, I never slept well either, but that was because I was going to the bathroom 30+ times a day.   I did not want to force myself to sleep as I know the results would have been messy.

I take hydromorphone for the chronic pain, which I have long grown use to, in that there in no fuzzy head effect.  I can't take any more than I take now, as my digestive system slows down/stops if I do , which just leads to pain.

I have to explore my options with respect to employment insurance, as its hard to just not work and not have any income coming in.   Despite being at the same job for 16 years, it might be time to change.   The hour+ commute just isn't working for me anymore.   I can't move closer, as I a partner and her two kids to consider and its not fair to uproot them from all their friends and family.   She does work, so fortunately she had an income, but we also carry two mortgages so mine is needed as well.


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## courtney422

I hate to read all these stories of people being so tired - fatigued!!  I have felt like such a slacker - lazy bum for so long thinking it's just in my head.  Sorry we have this to deal with on top of Crohn's!!  I wish there was a better word to explain the fatigue.....  horrible mental & physical exhaustion.... but sometimes you're so tired you can't even sleep.  I feel your group's pain!!  makes me feel LESS CRAZY!  The Crohn's "related" issues are as bad as the disease itself!!


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## spinbot

Do many people also suffer from depression, as lets face it, life could be better.  I do, thus my reason for asking.  I never felt my depression caused fatigue, but it may contribute to my body aches.  It seems ok, but I guess asking a crazy person if they are crazy, doesn't always get the true answer     I take Cymbalta to help me witn this.


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## hamster139

spinbot said:


> Do many people also suffer from depression, as lets face it, life could be better.  I do, thus my reason for asking.  I never felt my depression caused fatigue, but it may contribute to my body aches.  It seems ok, but I guess asking a crazy person if they are crazy, doesn't always get the true answer     I take Cymbalta to help me witn this.


Depression and anxiety can make crohn's worse.  Even the most skeptic doctors will tell you to manage your emotions.. and change your lifestyle as best you can, to cope with it... and will even suggest anti-depressants and anti-anxiety medication for short term relief.

And yes... stress and depression can cause fatigue... even if you don't have Crohn's.    

My sleep therapist even said they can cause sleep dissorders.

But, on the other hand.... even when I am as happy and relaxed as can be (which is rare)... my fatigue still doesnt go away... But I have DEFINITELY noticed a pattern between crohns flareups and stress.


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## rubberduckie1313

I can't even survive my day without a nap anymore! It is so hard to balance 
Crohn's and life. I have had Crohn's all my adult life and it affects everything. In order to go to school I have to work, but it's not easy with Crohn's. Setting new limits for myself has been especially challenging because I don't want to give anything up, but also don't want to feel icky all the time.


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## Jimena

This 40 hour a week job is just not for people who have crohns. It crazy that all your energy goes to your work and then you just sleep when you get home and try to eat something and be like zombie rest of the evening. I go to bed 9pm every night and sleep like a baby to 8 am. And i am still soo exhausted.


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## hamster139

courtney422 said:


> I hate to read all these stories of people being so tired - fatigued!!  I have felt like such a slacker - lazy bum for so long thinking it's just in my head.  Sorry we have this to deal with on top of Crohn's!!  I wish there was a better word to explain the fatigue.....  horrible mental & physical exhaustion.... but sometimes you're so tired you can't even sleep.  I feel your group's pain!!  makes me feel LESS CRAZY!  The Crohn's "related" issues are as bad as the disease itself!!


I tried to explain that to my doc... and he didn't seem to understand.  If I had the choice between the stomach pain and the fatigue... I'd pick the pain in a second.   I can manage pain and frequent bathroom visits... but fatigue is a complete and total life-changer.... and what's worse... its not easy to explain to a healthy person.

40 hour/week jobs...  I guess that depends on the severity of the fatigue and the type of job. 

I used to teach... I can't anymore, since I can't stand for any amount of time.  Most of my work I do is done at home lying on the couch... and only during strategic periods of time when I am not vegetating.


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## Spooky1

I totally identify with all of you.  This is the only place I actually get some genuine understanding.  I've got the flu on top of everything too.  That's what I get for a visit to the GP surgery!  Soooo exhausted.


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## nogutsnoglory

Just getting around to joining this group. I suffer from extreme fatigue and dizziness and it's very disabling. I mostly can't go out and when I do it's scary and I often cancel plans. It's very depressing but when you feel like collapsing, going out is not a good idea. It doesn't matter what I eat, how much I sleep, I never feel refreshed. A good day is one where I'm exhausted but have a tiny bit of energy to go out.


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## tots

I have been out of remission for about three years. I have had varying degrees of symptoms in that time. Fatigue has been a constant though. I work retail- its hard physical work. My husband is not so patient, his answer is don't work so hard at work so I can get all "my" stuff done at home! Easy for him to say! I just do the best I can.

I have had my Vit D and B checked- I take 50,000 of Vit D a day to get my number from 18 to 89. MY B is normal at 450, Thyroid normal. I still feel like I am dragging my way through the day.
I would dearly love to give up CD so I could feel "normal"!

Any suggestions? Anything I may be over looking?



Lauren


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## Babypink

Oh wow I'm so glad I read this, I have posted in another thread.

My panic has been difficulty reading at times the words will just not go in, the fatigue too its extraordinary and I can just drop asleep at the drop of a hat.  Today I nearly fell asleep in a meeting and was yawning my head off.  I'm so exhausted.  I have difficulty concentrating then suddenly I sort of pick up, my head clears and then it clouds over.

My lower abdomen has been upset a bit, especially passing mucus as I have a stoma.  I was told that my body does not absorb nutrients as well and I could feel tired.  Now there is tired and there is tired, and when I feel exhausted I become upset and can't believe how tired I do feel.  I still don't understand a flare up at all. My hubby has noticed I've become very forgetful and it feels like my head is full of nothing like cotton wool.  Then there are days I'm back to normal and switched on.  It's all quite weird.


----------



## Spooky1

Fatigue is a constant with me.  Maybe there needs to be some proper focused research into dealing with this and then maybe the crohn's itself would not be so bad or exhausting to deal with.  

I am exactly the same as nogutsnoglory.  What a horrible life it is.  I always end up so disappointed with my day because doing something takes so much physical effort and muscle pain, and yes the nausea means we can't even get one chore done without having a sit down break.  The worst of course is that people just don't understand what we are actually experiencing and having to go through and live with.

One day we will all be better and then maybe we can laugh at the bad old days.

Keep cheerful, keep reading the joke thread and the officially funny pictures thread.  If you can't be healthy have a good sense of humour available to you and others.


----------



## NatashaChampion

Hi, I have only been diagnosed with Crohn's for 3 weeks now but the tiredness is definitely getting to me. 

I have to commute by train and bus in the morning in order to get to college but by the time I get there I feel like I could collapse, curl up in a ball and sleep until home time! Let alone try and concentrate on my work!

I am yet to really get my head around crohns and find a routine but I want to look into doing some yoga to try and get me going in the mornings. 

Does anyone have opinions on whether a change in diet would make a difference to how tired we get? 

Even through all the pains I have been getting, I feel really pathetic being so tired all the time! Im only 19 years old and I can literally fall asleep anywhere and trying to find the motivation to do anything at the moment is becoming harder and harder!

Reading this support group is giving some encouragement though that im not going through this totally alone


----------



## wildbill_52280

tiredness is from a few possible causes-

iron intake- not all supp are same quality try a few.
b12 status- if you take a supplement take 2 forms metyhylcobalamin and adenosylcobalamin
oxidative stress- try green tea, coffee, vitamin e supplements, chocolate, high antioxidant fruits. i wont explain how here, but yogurt that is fermented for 24 hours get also help restore energy, and soluble fiber in take to produce short chain fattys acids as crohn's patient are low due to abnormal fermentation but our intestinal bacteria.


----------



## UnXmas

NatashaChampion said:


> Hi, I have only been diagnosed with Crohn's for 3 weeks now but the tiredness is definitely getting to me.
> 
> I have to commute by train and bus in the morning in order to get to college but by the time I get there I feel like I could collapse, curl up in a ball and sleep until home time! Let alone try and concentrate on my work!
> 
> I am yet to really get my head around crohns and find a routine but I want to look into doing some yoga to try and get me going in the mornings.
> 
> Does anyone have opinions on whether a change in diet would make a difference to how tired we get?
> 
> Even through all the pains I have been getting, I feel really pathetic being so tired all the time! Im only 19 years old and I can literally fall asleep anywhere and trying to find the motivation to do anything at the moment is becoming harder and harder!
> 
> Reading this support group is giving some encouragement though that im not going through this totally alone


I don't find that what I eat makes a difference. However, if you are not eating enough and are underweight or losing weight, that could certainly make you more tired. Many people with Crohn's can end up with low iron levels, which is a cause of tiredness. Low iron can't always be helped with diet if your absorbtion isn't good - if your blood tests do indicate low iron you might benefit from a supplement.


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## Zeppy321

I am so tired all the time. Don't know if it's the disease or the meds. I have 3 teenagers and a great husband so things are pretty much taken care of around my home but I don't want to live in bed and miss out on things at my kids schools. 

I take : Imuran 50 mg daily and Entocort 3 mg x 3 daily


----------



## jdpar

I have 4 daughters (ages 13, 9, 5 and 5 (twins)) and work full time as a nurse.  Because of my recent diagnosis and 2 trips to the hospital on top of being sick and seeing my GI, I've missed a bit of work lately.  My boss is threatening to "put me in a different position" instead of my office job that I have.  She wants to move me out to work on the floor, which means I'd be on my feet more.  (She knows this is difficult for me right now because of all my swelling not only in my abd. but my lower extremities too due to my 40mg of Prednisone daily.)  I think she's doing this because she's angry and she thinks this will make me quit.  Even though I'm not able to go to work as much as I want/need to, I still get more work done than the 2 other people that have the same "job description" as me.  I'm so frustrated with not feeling well and then having to put up with this all the time too.  I'm wondering about doing something that I can work at home instead, or maybe even trying to get on disability (althought I REALLY don't want to do that!).  
Does anyone else have problems with keeping up when it comes to work?  I would love to hear what other people have done in similar situations.


----------



## Spooky1

Zeppy and Jd,
I know how you feel.  In a way it's easier for me as I never had children.  I just wouldn't with this health.  Work is nigh impossible as I am so depleted of energy and I'm on a liquid feed through a pump for 20 hours a day.  Living anything of a normal life seems way out of my league and leaves me quite disappointed in life in general.  Sometimes I wish I just had people at home to chat to, on the other hand though, as you both probably know, it's hard work just keeping up focus and concentration on anything, even a loved one.
Jd, I'm on disability.  I hate to say it but employers don't want those with lifelong illnesses.  Sounds to me though, you are doing a good job.


----------



## jdpar

Thank you Spooky.  I try to keep up.  Luckily I'm fairly fast and accurate at what I do, so when I am at work I do a good job.  I'm supposed to be full time (40 hours/week), but I haven't been able to work a 40 hour week since at least November 2013.  My boyfriend lives with my children and me, but he also works and his is a physical job so he is tired at the end of the day too.  The only reason I am against disability right now is because 1) I don't think we could financially survive on it and 2) I also suffer from bipolar disorder and my psychiatrist thinks that it's good for me to be at work because that's how I get out of the house and in a social situation.  Unfortunately though my Crohn's diagnosis has seemed to taken a big toll on my bipolar diagnosis and I am having more and more "bad" days mentally.  
But there I go rambling...  Thanks for the welcome and the encouragement!


----------



## jillybkul

Essieluv said:


> The fatigue I get from my Crohn's is so crippling. I cannot do much, and when I do finally muster up strength to accomplish something, I have to rest for days after. It is so annoying, especially because people just assume that I am lazy. I am not lazy, I'm just so exhausted!


This doesn't help, but I know EXACTLY how you feel.  Other people really don't get it!  

jill


----------



## Spooky1

JD, I am quite shocked that you are trying to hold it together.  It's really sad you have to work a 40 hour week.  I'm not awake much more than that, let alone care for kids, be a mum to them and your boyfriend.  In a way I think they might be the biggest stabilising factor in your life.  But, my, that's really pushing it with what you have wrong.  I am so sorry for you.  I sincerely hope both illnesses heal soon.


----------



## jdpar

Spooky - "Holding it together" seems to be what I am struggling to do most days.  Not only do I feel tired a lot but I also haven't really gone into remission since being diagnosed and put in the hospital the first time in December, so I feel very unaccomplished by the end of the day/week/whatever...  I know I get very "short" with my kids and my boyfriend and other family members because of my fatigue and pain too.  Then I feel really bad because I know it's not their fault I feel so bad either.  It's so hard!  I'm sorry to be venting so much.  I litterally just found this site today and I'm just so excited to find other people who "get me"!


----------



## Twbuto

Hang in there jd. Fellow Crohns friends realize the frustration from those whom think we are imagining our fatigue and pain.  But eventually those around you will provide support. My fatigue improved once my iron levels improved and B12 numbers rose through supplements and injections.  Keep in touch.  Take care.


----------



## Spooky1

Actually, iron is one supplement I don't take.  I know the tablet form feels like it's burning a hole in my stomach but I think these days its possible to get it in liquid form.  I will give that one a go.


----------



## UnXmas

Spooky1 said:


> Actually, iron is one supplement I don't take.  I know the tablet form feels like it's burning a hole in my stomach but I think these days its possible to get it in liquid form.  I will give that one a go.


I had similar problems, even vitamin pills without iron upset my stomach. I believe you can get iron injections as an alternative.


----------



## Twbuto

Hi spooky,  like many folks, irons pills were very disruptive.   Can not take them. So I took Iron Chewables. They were much better.  But still not enough absorption . So currently I am in the middle of 10 iron infusions. It's a pain, but this the only way to get iron up,,,and provide me with energy.  Hope this helps


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## Spooky1

I think I might look into the injections.  Thanks all.


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## durwardian

I have had some luck with supplements like Propolis, bee pollen. And keeping up the energy vitamins, like C, D. B series. Also, bone broth helps. I do think it is a matter of the damaged intestinal walls not absorbing anything, so the more you can get into the blood the better. Liquid vitamins are not as important as the absorption catalysts, like fatty compounds. Some are water and some are fat or oil items. I can tell I am getting nowhere when I'm still tired and my urine is dark and smells like the vitamins I'm trying to absorb. Shots really help, get the B-vitamin shots, they do wonders. It actually helps to do anything you can to repair the walls of the intestines, and be aware that you probably don't produce the right enzymes any longer. Also try taking Mucinex, or guafinesin, about 800 mg per day. It is hard on the tummy, so take it with a meal. My neurologist is not sure why it works, but it does. Try taking enzymes to help break down the foods, and don't hesitate to try baby food or liquid nutrition supplements.


----------



## Twbuto

Interesting.   Bee Pollen.   Anyone played around with Bee Pollen??  I've always thought of trying it but always hesitated.  Any thoughts friends??? As always, this site allows me to give input and receive it.  You friends give me MORE than My GI Dr.  Bee pollen anyone??


----------



## durwardian

Twbuto said:


> Interesting.   Bee Pollen.   Anyone played around with Bee Pollen??  I've always thought of trying it but always hesitated.  Any thoughts friends??? As always, this site allows me to give input and receive it.  You friends give me MORE than My GI Dr.  Bee pollen anyone??


http://www.webmd.com/balance/bee-pollen-benefits-and-side-effects


----------



## fayee

Always tired. I was once active and always out n'n about, and now I'm having a hard time just getting from the couch to my bed…

I went grocery shopping today and had to have a cart (though only need a few things) just to support me from not falling over.

I'm a 22 year old female! Being inactive is making me miserable but I just don't have the energy 

(Aslo my resting heart rate is sitting around 116…ugh)


----------



## Babypink

I've just started using liquid iron supplement which us apple flavoured see how that goes


----------



## nogutsnoglory

I have been trying D-Ribose to try to gain energy. It has shown promise in small studies. Day 3 and no change yet. I'm not too optimistic after trying everything but what the hell.


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## Spooky1

Fayee,
I use a cart/trolley as its my glorified zimmer frame.  I just can't manage the supermarket without one.


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## durwardian

I love holding the cart, less pain shopping. I try to pull off that "I'm just real casual" lean using both arms.


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## Spooky1

Ha, that's exactly what I do.


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## jdpar

I am feeling drained today!  I've been working all week and filling in for someone else while also trying to do my job.  My house is a horrible mess!  It looks like a tornado has gone through it.  I don't think I've done any laundry since last weekend.  And I haven't been to the grocery store at all this week.  I feel horrible that I'm not being a very good mother/girlfriend by neglecting things at home.  But it seems like if I want to have the energy to work, I don't have anything left when I come home.  Oh, and I work tomorrow (which means 6 day work week with 1 day off before I go back).  Ugh...  Thanks for letting me vent!


----------



## Goddess

Well, you impress the heck out of me!

The flylady.com website does a good job with the "exhaustion + housework" combination, breaking things down into targeted spurts of 15 minutes.  And reminding you to take care of yourself first.  The time when you've got absolutely no time to rest is the time that you most need to.

Hang in there.


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## LemSat87

the fatigue is ridiculous!  it's worse when as a manager at my job I have to cover a callout and work an 18 hour shift...when a 9 is tough enough sometimes...and they wonder why I get the way I do sometimes.


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## Chaddi_man

hi, 
i can't seem to stay awake! my sleeping patterns all over the place. i usually sleep at around 6am waking up at around 1 in the afternoon and when i try to do an all nighter to sort it out i can barely make it past 9am and then make it even worse! the fatigue is making it harder to concentrate and is therefore having a huge impact on my work which in turn is increasing stress. 
any advice?!


----------



## UnXmas

Chaddi_man said:


> hi,
> i can't seem to stay awake! my sleeping patterns all over the place. i usually sleep at around 6am waking up at around 1 in the afternoon and when i try to do an all nighter to sort it out i can barely make it past 9am and then make it even worse! the fatigue is making it harder to concentrate and is therefore having a huge impact on my work which in turn is increasing stress.
> any advice?!


A good sleep routine is so important! There have been a couple of times in my life where my sleep has been so messed up, and it makes such a difference to how I feel mentally and physically. I sleep so well now and I'm careful to make sure it stays that way!

Staying up all night like you've tried is one option, if you can do it. Have you tried staying awake through the night (as you currently are) then making sure you're outside somewhere throughout the day to ensure as little sleep as possible until you make it through to the evening? It will be an awful day (and definitely not a day for doing anything requiring attention - no driving!) but if you can hold out you should sleep through the night. 

What helped me so much with sleep has been taking Amitriptyline. I had been sleeping well, but then I had to take prednisone, which caused severe insomnia - it was awful. My doctor prescribed Amitriptyline which cured it immediately. And I don't seem to have built up any tolerance to it - it still knocks me out, well over a year later. I guess you could try taking a strong sleep med in the evening, something that will make you sleep even if you haven't been awake for a full day.

So perhaps you could try something like the following: fall asleep around 6am as you're currently doing. Try and get up earlier than 1pm if you can, so you haven't had much sleep. Then the following evening, rather than staying awake until 6am, take a strong sleep med in the evening at a reasonable bed-time. Amitriptyline in a high enough dose should cause you to sleep when you wouldn't naturally be tired. There may well be other sleep meds - different ones work for different people - I'm using Amitriptyline as an example because that's what causes sleep to come for me. It helps me sleep through pain and discomfort, and if it works for you it should help you sleep even when you otherwise would not be tired.

Once you are in a good routine, don't break it! Make sure you don't give in to temptations to lie in in the morning. Make yourself get up early to stand the best chance of getting to sleep at a good time in the evening.


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## NatashaChampion

I was doing so well this morning! Travelled in to London by train and bus for college and have managed to get on with my work really well and get a decent amount done for a change. But then BAM! I suddenly feel like Im gonna fall asleep on the table! I have got too much to be doing to stop but my concentration is disappearing!

I have stopped for a break, eaten and had a drink but somehow I don't think I'm going to get much more done today! agh its so annoying!


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## nogutsnoglory

Natasha I have episodes like that too. What is that? I feel better and embark on a task and out if nowhere I feel like my legs are going to cave on me, I get weak and my body aches and I want to just lie down.


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## NatashaChampion

I know its so annoying! Im stopping for lunch soon so I'm hoping I will have more energy after but I doubt it! Its stressing me out thinking that I have still got a few more hours here and then got an hours journey home! Im so gonna fall asleep on the train!


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## JoFowler

I take Remicade and anywhere from 1-4 weeks before my treatments I suffer from fatigue.  Two days after my infusion, I get out of bed and immediately notice that the "fog" is gone.  It feels like a miracle every eight weeks.


----------



## NatashaChampion

What is Remicade? Is it something that you go on after steroids? x


----------



## JoFowler

Yes, if you click on it in my post, there is a proper explanation, but basically a medication that gets administered through an IV, for me every 8 weeks.  It is used for moderate to severe Crohns - I have it in small bowel and had a perianal fistula and abscess when I was diagnosed in Sept 2012.


----------



## Essieluv

I have recently started magnesium, vitamin B, and iron supplements as my levels were low. I am surprised that I can tolerate iron supplements as I am very sensitive to those type of things. The one I take is Mason Natural Sugar Free Ferrous Sulfate.


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## lils

I need to join this support group. I can hardly stay awake--I actually need ADHD medicine to keep me from falling to sleep, which does not always work.


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## Spooky1

yes, i just got soluble iron and will start taking it today.  Must say, it's a bit expensive but i want to give it a try as i cannot cope with the extreme fatigue.  Life is a disappointment when you haven't got the energy to complete any one task, let alone live normally.


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## jillybkul

lils said:


> I need to join this support group. I can hardly stay awake--I actually need ADHD medicine to keep me from falling to sleep, which does not always work.


This is interesting, I am on ADHD meds for the same reason.  I can't stay awake, even to drive sometimes.  I'm glad I'm not the only one~
jill


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## Fla

I have had a mild case of Crohn's since 1998.  In 2009, I developed a tingling in my feet and fatigue with no other symptoms and no flare ups.  I spent the next 3 years trying to determine the cause.  No doctor said it could be Crohn's.  Last year, I felt much, much better.  I didn't know how much better until the beginning of this year when the tingling and fatigue set in again.  The fatigue is more of a light-headed feeling, a little dizziness, and a foggy head.  If I get 8 hours sleep, I am not sleepy during the day and I can stay up until 1 or 2 in the morning.    I am not on any medication for the Crohn's as I find it does not prevent the one or two flare ups that I may have a year.  If I feel a pain, I can take a couple of prednisone to stop it.  Has any one else with mild Crohn's experienced this and what supplements or treatment have helped?


----------



## jlf

My sleeping patterns are no patterns at all. Most nights, I fall asleep around 9:30, wake up about midnight, fall back to sleep at 4:30 a.m. or 5 a.m., before waking for work. Sometimes I am so tired I stay in and sleep all day. I've tried meds for depression and insomnia, get B 12 injections and take a prescribed Vitamin D, but I just stay tired. I hate it. I've had Crohn's since 2004.


----------



## Babypink

I have episodes sat at work all fine then wham I just want to sleep. I work full time five days a week, my weekends consist of waking up, taking dog out, coming home go to bed and sleep most of the day.  Occasionally I have really good days and I so miss them!  I am struggling also with sever sinus problems, very bad too.  Waking early, blocked nose, sneezing and the pain in my forehead, temples and neck can be awful


----------



## jillybkul

Spooky1 said:


> yes, i just got soluble iron and will start taking it today.  Must say, it's a bit expensive but i want to give it a try as i cannot cope with the extreme fatigue.  Life is a disappointment when you haven't got the energy to complete any one task, let alone live normally.


Spooky,  will you keep me posted on how the soluble iron works for you.  I am curious if it's easier on the tummy too.  
Thanks!
Jill


----------



## girlygirl

Hi All!

I too suffer from extreme fatigue. Mine comes with muscle and deep bone pain at times. Today it's extreme fatigue, pain, and nausea.

I was DX w/CD in 2010, and since there's been one thing after another. Now I'm on tons of meds and the Dr.'s say that can contribute to the fatigue as well.

Some items to think about:
Hypothyroidism: (and thyroid nodules) Taking Levothyroxine (helps with fatigue)
Low Vit-B12: I give myself monthly injections (helps with the fatigue)
Low Vit-D: Rx replacement/supplements
Methotrexate: Newly taking - was told it can cause serious fatigue as well

It would be nice if there were more awareness of the physical effects associated with UC/CD and the other manifestations it can bring once the IBD is active in your body. I've read other posts and it upsets me too that no one seems to understand what you go through unless they have UC/CD, or some other inflammatory disease and at least somewhat understand. I have more Dr.'s than I ever imagined I would and it's hard to explain why you have to go to the Dr.'s all the time.. and there goes your sick time, and vacation times from work. But it's a daily struggle. And as far as remission.. yea ok. remission is great, however, IMO that doesn't mean you're temporarily healed! The side effects still come and go as they please.. as do flares. 

My Endo had me take labs recently that had to do with the pituitary gland, and mentioned if certain levels are off it can also cause the fatigue. So, I'll wait and see how this turns out. 

Hope everyone is doing great today! And hope one day that there is a cure! <- for CD and the other Immunity issues it activated.. 

Hugs to all
Monica


----------



## girlygirl

Babypink said:


> I have episodes sat at work all fine then wham I just want to sleep. I work full time five days a week, my weekends consist of waking up, taking dog out, coming home go to bed and sleep most of the day.  Occasionally I have really good days and I so miss them!  I am struggling also with sever sinus problems, very bad too.  Waking early, blocked nose, sneezing and the pain in my forehead, temples and neck can be awful


Hi BabyPink,
I work 5dys/wk as well. the fatigue is brutal. I also have allergy problems. I was taking Clarinex and my Dr. recently switched me to Xyzal, it seems to work much better. As for the pain in my forehead, temples.. etc.. I thought it was all allergy related, or working at the computer all day, and no big deal. But my Endo had me run some recent tests, and apparently the pituitary gland - can cause those too if not functioning just right. She said if you've ever been in a bad car accident, accidently hit your head, or played rough sports as a child - you could potentially have injured something.. Here's one article I found online with a tad bit of info. http://www.womensinternational.com/newsletter/article_braininjury.html
And here are a few tests the Dr. had me run: I'm really unsure of what they are just yet.. I literally took them the other day.
Insulin Like Growth Factor I (IGF-1)
Estradiol, Level
Follicle Stimulating Hormone
Luteinizing Hormone Serum
Cortisol AM Serum
Prolactin
Hemoglobin A1C
I hope this helps some. And hope you start feeling better soon!
Kindest Regards,
Monica


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## Spooky1

@Jilly, i certainly will let you know about the liquid iron.  So far i haven't got the burning hole in stomach feeling.  As for fatigue, well no improvement yet, but it has only been less than a week.

@girly, i have also had two head injuries so the article is very informative with me suffering many of the listed side effects of the injury.  So i think i might get that progesterone on the go.

Thanks.


----------



## hamster139

Dangit... Im going back into the severe fatigue mode again.... not only does it make me a zombie... but it makes me want to stay away from anything and everything.  I literally can't even open my emails because it involves contact with the outside world... I am wasting nearly all my hours on the couch again.

Outa frustration, I took huge amounts of coffee this morning... what a stupid move that was.  But I always seem to do this when I hit rock bottom.


----------



## Spooky1

Yes, the body seems to know to beg you to try and give it energy, or any kind of boost.  Unfortunately, with Crohn's it just doesn't help much.  I feel my life has been wasted.  I have realised i'm not so alone now i have this site with all the understanding people here.  We aren't alone and we are all awaiting that amazing cure.

There is no forcing the body to find energy when you're that fatigued.  It just doesn't happen.  I have got to collapsing point on so many occasions.  It's not worth forcing yourself.


----------



## mdd

Hey their! I had a hard time telling  my husband  a few years ago .I'm tired. I had to tell my GI doctor. To tell him. She's tired because of the Crohns. Fatigue . So he had to deal with it.


----------



## hamster139

Spooky1 said:


> Yes, the body seems to know to beg you to try and give it energy, or any kind of boost.  Unfortunately, with Crohn's it just doesn't help much.  I feel my life has been wasted.  I have realised i'm not so alone now i have this site with all the understanding people here.  We aren't alone and we are all awaiting that amazing cure.
> 
> There is no forcing the body to find energy when you're that fatigued.  It just doesn't happen.  I have got to collapsing point on so many occasions.  It's not worth forcing yourself.



Yes, I couldnt have said it better myself.  There is just no way to force your body to get more energy... and once you go over the limit (which is very low for us)... your body punishes you big time.

I did find something interesting that may help others... I tend to expend a lot of energy in the first 2 hours of the day... since getting breakfast, kids ready etc.  I almost don't notice it at times, a lot of it is just habits... so, especially during flareups... I am useless by 10:00 am.

But the last 2 morning, I have made a point to be as economical as possible.  I've prepared things the night before.  I have dropped off my daughter instead of walking her to class (she was ready for that anyway).  I have minimized standing, and been really conscientious about moving.

And the results are quite amazing.  I am not 'full of energy' or anything, but I am not a zombie at 10:00am.... I can do basic sit-down work. I still have to be economical for the whole day... but I put more emphasis on those first two hours it pays off for me.


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## Spooky1

Hamster, it's great someone else is just like me.  I always said I am fit for two hours and then, yes, it's definitely zombified.  I hadn't realised that others are like this, just the two hours.  I think we are very, very much similar with our fatigue.


----------



## IRescueU911

Wow, I read through all of these and feel as part of a real crowd now... instead of alone. I'm sorry for you all having to live with this debilitating fatigue. I am new here. I was dx with severe IBS with a "Crohn's component" in 2010. I lost 80 lbs. Eventually, I did manage to control the diarrhea... thank God. I went from going 10-20x a day to just a normal twice a day. I did this all through diet and Pentasa and years of healing. I gained back 40 lbs.

Though, if I stray in my diet or eat something tainted or eat too much, I enter into a state of paralysis (That's what it feels like) where it starts with bloating, pain, sleeplessness from the pain, then extreme exhaustion and I can sleep for 12-16 hours. When awake, Like somebody else put it, I am like a limp noodle. I try to walk up stairs and I feel like a puppet, having something pulling on the strings to make my legs move. Hard to describe.

Looking at me, one would think... no way... hes fine. When down about it, one recently told me "You need some PMA!!" (Positive mental attitude) Ha! I thought. No PMA will make this feeling go away. 

Is it normal for any of you to feel the bloating come on, get kind of sleepless (Though exhausted), then exhausted and crash hard, and maybe a day later experience diarrhea?

Another thing I get that I never used to is extreme exhaustion from exerting myself. I'm a firefighter. When I really exert myself (Which I can at times when the timing is right), I am knock down, flat out unable to function the next day. I work out but even that has been scaled back because of how it is starting to slow me down the next day. 

I take Pentasa and Cymbalta. Cymbalta to deal with physical arthritis in my neck... not depression. If I had depression, I would imagine it would make me more energetic? I'll admit, the whole "Gut Thing" doesn't ring bells of joy with me, but I'm not thinking the mental aspect is causing the fatigue... especially since it's induced by food I eat. Though many "Well" people always like to think you're just depressed or Lazy. (Coming from a formerly VERY ambitious/ hard working guy... I hate that) I have taken Prednisone in the past for sinus issues. It helped me feel normal overall. My energy level went back to normal. Maybe that's my ticket?

I "Pray" that you all regain energy soon!


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## Spooky1

Hi, Rescue, and welcome.  I also have arthritis in the neck and found memory foam pillows to be a godsend.  I also cannot exert myself.  I am always almost paralysed with extreme muscle weakness if I do something.  That is what I find so disappointing in life.  I have a sporty nature but am unable to do anything, even walking is difficult.


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## nogutsnoglory

I just want to break down and dry from the horrible fatigue some days. Even laying in bed is tiring and my body aches. Doctors have no clue why so they think I'm just probably a crybaby. Let them try being too exhausted to even walk stairs or do the simplest things!

I wish there was a reason for this extreme weakness then I can understand where it's coming from and begin tackling it. My bloodwork is fine with the usual weakness suspects.


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## Spooky1

I'm feeling like that right now.  I really need to drive out and see my mum with dementia, but I know I can't drive the 25 mile journey.  I'm just too exhausted.  By the way, my white cell count is normally very high when I feel like this.  I just need a cure too.


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## yosemitegirl

45 years with Crohn's and one thing I know absolutely... I have been tired since 1970. I don't remember what "normal" is.

Doesn't matter what meds, surgeries, flares or no...
ALWAYS tired. But not the kind of sleepy tired described by most here. In fact, if I slept 4 hours in a row I would have to be unconscious or dead. Just unbelievably exhausted.

A lot of my labs are off from malabsorption issues (10 surgeries), but no anemia.

Crohn's is an auto immune problem, and as such, with the body attacking itself, and chronic inflammation, maybe the question is why wouldn't we be tired? There is so much they don't know. 

Everyone must find their own pace and what works for them. Please do not question your sanity.

Take care...        Michele Lea


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## Allison M

Wow! I was just beating myself for laying on the bed all day.  I'm not alone. Thanks.


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## yosemitegirl

Allison M... No beating allowed. You're tired enough.

I think that expectation of ourselves, maybe unconsciously felt from others (but you don't look sick), is a double-edged sword. 

Every one of us struggles with pushing ourselves, yet knowing when you've hit the wall. And trying to explain to others sucks the life right out of you. So I don't do that anymore. They either get it or they don't. 

Lay on your bed when needed, just don't get stuck there. 

Wishing you more energy, or an awesome bed.

Michele Lea


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## badbelly

Hi Everyone,

I have been dealing with bad fatigue issues for over a year since diagnosis. I feel so worn down, tired and in a "fog" most days. Except when I'm on high doses of pred of course lol.

I also suffer from anemia brought on either by Humira or just small amount of internal bleeding/can't absorb enough iron. My HGB right now is in the 10s (13s is normal for me) and it has been as low as 9s. I have had 1 blood transfusion so far and may be setting up another soon. Taking iron pills hurts my stomach really bad, so I try to get iron rich foods. Also experimenting w/ a new liquid supplement. 

Rest of my blood tests are OK. Mainly it's an iron issue and just generally worn down by my body fighting Crohn's almost non stop for really over a year. 

Exercise is also pretty hard with a low red blood cell count! But I try to take walks every day.

Since my fatigue has started to really affect my work life (I work at a computer all day), my doctor prescribed me some modafinil to try at my request. I'm getting pretty desperate at this point. Unfortunately it's known to have some GI side effects (diarrhea/upset stomach) and other scary side effect for some, so I'm going to be keeping an eye on that. 

There's an old thread on it here: http://www.crohnsforum.com/showthread.php?t=11572
and I've read about some people who take it w/ Crohn's and other autoimmune diseases.

I don't plan to use it every day, but I'll let you guys know how it goes overall!


----------



## Allison M

Thank you yosimitegirl! Good advice. I hope things go well for you too. And no beating, lol! Allison


----------



## Allison M

Good luck to EVERYONE, btw! This is really a crazy mix of symptoms! I just never had this on my radar, and I was a nurse! I admire those who have fought this for a long time, I know how frightening it is for us newbies, and my heart breaks for the children and you parents...but, you're amazing! You all inspire me.


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## yosemitegirl

Thank you, Allison M... and remember, no beating on yourself for laying down. It just makes you more tired.

I was in health care, also. My 45 years with Crohn's taught me early on there are two sides of the bed. No matter how compassionate you are and whatever your technical skills, it is different when it is you. Something that 95% of the medical profession seems to forget.

We'll be here... take care.      Michele Lea


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## Allison M

Hope you feel better, badbelly! It can be rough, can't it?


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## KLynVin

Hey there friends! I'm new to the fourm and happy to have a means to learn and gain tips from others who "feel my pain"... With that being said, I need your help! My question isn't specifically about stomach issues but more about the immune system. Since becoming diagnosed with Crohns in 2011, I thought that id only be struggling with digestive proplems. The last 3 years though I have been introduced to even more problems!...

I'm never well. I catch colds left and right, and no matter how much I sleep, how many vitamins I take, or medicine I drink, my colds ALWAYS turn into infection. I get Strep throat, sinus infections, ear infections, and bronchitis regularly. (Not to mention headaches, extreme tiredness and fatigue are an everyday occurance as well!) My doctor knows I have an autoimmune disorder but isn't giving me many preventitive measures to ward off illnesses or boost my immune system. I am constantly sick, and its getting to a point where I am becoming overwhelmed. I don't want these problems to rule my life or cause me depression. I have always been an upbeat person, but this disease and all of its side effects are changing me for the worse. 

Any help on preventitive measures, medications, immune boosters, and ways to fight fatigue would be GREATLY apreciated!

kristy


----------



## Ali29

KLynVin - welcome to the forum, I'm newly diagnosed but I feel your pain on the immune system, I seem to catch everything and antibiotics make my Crohn's issues more severe and cannot tolerate them.  I'm sure a someone will be along to offer some advice.  I was taking many supplements from my Natureopath but my doctor had me forgo them to make modifications to my treatments.  Sometimes, I feel isolated trying to stay away from sick people.  Friends/family now come bring me/us dinner/lunches so to minimize the exposure to illness limited.  I have now started drinking Macha Green Tea, so far so good, but I did a lot of homework on the best quality/taste I'm hoping this will lift my immune system but we will see.

Good luck - I've had down times also but this forum has lifted me so much knowing others with the same issues and the different Support Groups on the top tabs have helped me so much!  Everyone has a different story and different things that have worked for them.


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## Zeppy321

Well I'm sitting here getting my first iron infusion - hopefully this will give me back some energy !


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## Cioccolata

Let us know Zeppy. Last week I has vitamin b12 injections every morning and by day 2 I felt great. Waking up at 5am full of energy. As soon as injections stopped back to extreme tiredness - I wonder if it was all psychological. Next step for me is the iron infusion so I really hope it makes a difference for you.


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## Twbuto

Fatigue, in my opinion, is just a Crohns symptom, no matter what you do.  Our lack of absorption is my primary issue. B-12, D, Folic Acid, Iron, C,,,always lacking. Supplemts are only a minor band aid,,stay well friends.


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## Zeppy321

Cioccolata said:


> Let us know Zeppy. Last week I has vitamin b12 injections every morning and by day 2 I felt great. Waking up at 5am full of energy. As soon as injections stopped back to extreme tiredness - I wonder if it was all psychological. Next step for me is the iron infusion so I really hope it makes a difference for you.


Thanks, The doc said it will be a few weeks before I  "feel " anything. I need 10 doses of weekly infusions - so 1 down 9 to go. They would like to see my iron stores in the 200s and I'm at a 10 right now. I'm so very tired today more so than normal. It was a very busy weekend and I am currently in a flare but this exhaustion is ridiculous ! I switch the laundry - I need to lay down, Make a cup of tea - I need to lay down, Sweep half the kitchen floor - You guessed it I need to lay down ! My arms and legs feel so heavy. I really hope this iron will help . I will keep you posted.


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## Spooky1

I'm definitely one for a bit of a chore at a time.  Everything simply takes me five times longer.


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## chicky402

Hi everyone. Glad to see that I am not the only one with this problem. I work two jobs and it is so hard to keep myself going. I can barely wake up in the morning and I am exhausted all day. Unfortunately coffee goes right through me so there goes that. I feel like at times I Just want to give up and sleep for a week. I hope everyone feels better and has less fatigue.


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## chicky402

courtney422 said:


> I hate to read all these stories of people being so tired - fatigued!!  I have felt like such a slacker - lazy bum for so long thinking it's just in my head.  Sorry we have this to deal with on top of Crohn's!!  I wish there was a better word to explain the fatigue.....  horrible mental & physical exhaustion.... but sometimes you're so tired you can't even sleep.  I feel your group's pain!!  makes me feel LESS CRAZY!  The Crohn's "related" issues are as bad as the disease itself!!


Yea I feel this way too and it is horrible. I think people look at us and think we are tired for no reason. There needs to be a way to get around this problem.  :-(


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## hamster139

I found something that has helped a little... hope this helps someone. 

Like any Cronh's sufferer... lack of sleep causes me issues... I try to get 8-9 hours a night... but I always end up having issues waking up and not going back to sleep.  I tried all sorts of things, sleep tests, OTC drugs, prescription drugs.... none seemed to genuinely help.. and the drugs caused other issues.  I also tried melatonin... it didnt help.

So I tried do-it-yourself light therapy for the last 2 weeks... I bought an inexpensive light. ( Nature Bright SunTouch Plus Ion/Light SADTherapy ) and I used it about an hour after waking up for about 15-20 minutes at a time.  It doesnt give me energy afterwards... but I think its kept me from producing melatonin during the daytime because I am suddenly sleeping much better and my sleep cycles seem to be more natural.

The improved sleep has translated to slightly more energy in the daytime.... so on a scale of 1 to 10... I am at about a 3... which is an improvement from being at rock bottom.

It could be a coincidence... but I dont think so... because I havent had normal sleep for quite a while... so its a very unusual change for me.


----------



## Fla

Today, I went to a holistic dr for the first time to see if he could help my fatigue and neuropathy.  He suggested a fecal transplant.  My first thought was the he was weird.  When I got home, I checked the internet and found that it is an accepted procedure that even the Mayo Clinic has done.  It has a success rate of 90-98% for C diff and might be good for Crohn's.  Even the Crohn's & Colitis Foundation is hopeful that it can work for Crohn's.  Is anyone familiar with it or has had it done?


----------



## hamster139

Fla said:


> Today, I went to a holistic dr for the first time to see if he could help my fatigue and neuropathy.  He suggested a fecal transplant.  My first thought was the he was weird.  When I got home, I checked the internet and found that it is an accepted procedure that even the Mayo Clinic has done.  It has a success rate of 90-98% for C diff and might be good for Crohn's.  Even the Crohn's & Colitis Foundation is hopeful that it can work for Crohn's.  Is anyone familiar with it or has had it done?


Yes, once you get passed the yuck factor... it has really positive results from what weve seen.  But It may be a while before its something our GI can set up for the average cronh's sufferer... but hopefully soon.

There is even a 'do it yourself' website... which kinda shows you how crude and simple the whole process is.

From what I hear... they are working on mimicking the results in pill-form, etc.


----------



## Ozark Hill Billy

chicky402 said:


> Yea I feel this way too and it is horrible. I think people look at us and think we are tired for no reason. There needs to be a way to get around this problem.  :-(


I told my GI last week that one of my major issues was fatigue and wondered if I should be taking a supplement. He said my blood work didn't indicate a need for anything and he seemed to not be interested in my concerns. Out of desperation, I stopped by a nutrition store and picked up an energy vitamin supplement for "metabolic energy and adrenal support". Guess what....it worked within 2 days. It is high in all the B's, pantothenic acid, iodine chromium, potassium and a bunch of herbal supplements. What I was low on and what component of this supplement worked may never be known. All I know is that it took me out of the funk I have been in for months.


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## Spooky1

Hi, Ozark.
hope all is well and you're out of the tornado zone.
Does the pill have a brand name or anything.  I'm in Britain and I'd like to try this.
thanks


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## Mrs_R

Hi everyone. Reading the posts on this forum was like reading my own thoughts! I was diagnosed with Crohn's less than a week ago but have unfortunately been battling the symptoms for many years. Fatigue is definitely one of my most severe and debilitating problems. Some days, I sleep 18+ hours straight. My tiredness naturally gets worse during a flare but even when the rest of my GI symptoms calm down, the fatigue is always with me. I will be in bed willing myself to move and get going but it feels like a lead weight is on top of every muscle in my body stopping me and without even realising, I will fall back asleep and wake up hours later. I never know what to do for the best because half of me thinks I should listen to what my body is telling me and rest but then I don't want to spend my life stuck in bed just sleeping the days away. Fatigue has such an impact on your life and there is nothing more upsetting than other people just thinking you are lazy and can't be bothered. I've even been accused of this by my own family which was heart breaking but unfortunately just goes to show how much more education is needed in relation to IBD. I used to work full time but have recently made the decision to give up work until I am on a suitable treatment plan and my symptoms are under control. A full day at work used to absolutely wipe me out and I would quickly find myself losing concentration in the tasks I was doing. I feel like sleeping is all I do lately and I can't wait for the day where I feel like I can spring out of bed and take the day on full of energy and life!


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## Ali29

I too am extremely tired, when I go to the GI this week, I want to go over my last test results and check all my levels Vit D, B12, Folic Acid, Iron (which I know has been low but not severely low but obviously enough to make a huge difference in my energy levels).  If the other blood work hasn't been done - I'm going to request it.

I was on FLMA which just ran out and GI says I'm in no condition to return to work with chronic nausea/pain, etc.  I too lost concentration and couldn't think straight at work and I had a job that required decisions that involved significant amounts of money and management.  Once we can get the meds, etc. correct - I hope to return to the land of the living.  I lay on the couch a lot.  So sorry your family isn't informed - my family is one that researches everything going on with everybody.  Maybe you could share some of symptoms and they can begin to research and learn and give you some support -:ghug:


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## Mrs_R

Ali29 said:


> I too am extremely tired, when I go to the GI this week, I want to go over my last test results and check all my levels Vit D, B12, Folic Acid, Iron (which I know has been low but not severely low but obviously enough to make a huge difference in my energy levels).  If the other blood work hasn't been done - I'm going to request it.
> 
> I was on FLMA which just ran out and GI says I'm in no condition to return to work with chronic nausea/pain, etc.  I too lost concentration and couldn't think straight at work and I had a job that required decisions that involved significant amounts of money and management.  Once we can get the meds, etc. correct - I hope to return to the land of the living.  I lay on the couch a lot.  So sorry your family isn't informed - my family is one that researches everything going on with everybody.  Maybe you could share some of symptoms and they can begin to research and learn and give you some support -:ghug:


Hi Ali. I am sorry to hear you are so tired as well. Sounds like a good plan to have all your vitamin levels etc checked if your energy levels are so low. I assume my low Vitamin D is the reason behind my fatigue but am I also right in thinking that CD in your Terminal Ileum affects absorption of all vitamins? If that is correct, I think I will request mine are checked again, especially my B12. 

The extreme fatigue just makes work even harder than it already is due to all the other symptoms doesn't it. I was really determined to try and sustain my job but eventually reached a point where I knew it was not good for my health. I figure there are always going to be jobs out there but you only get one chance with your health. It isn't ideal as we have a mortgage and bills to pay and my husband's wages alone aren't quite enough each month but we will have to find a way to make it work. The couch is almost an extension of me these days I feel. I think there is a permanent imprint of my bottom on here now :lol: It is hard with my family not really understanding just how debilitating this illness is. I am trying to talk to them about it more and explain the details so that they can gain more understanding. They are very much a 'come on, chin up' type of family but unfortunately this advice isn't always helpful. I hope society in general becomes more aware of IBD issues and the impact it has on our lives. Take care and best wishes for you blood tests x :hug:


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## Vickyt

Hi everyone,
You all sound like you are in the same boat as me!
This is my first time on a Crohn's forum. So far, I have been trying to deal with my Crohn's alone, and advice for people who are going through the same thing would be so helpful.
After 2yrs of trying to control my disease through diet and supplements alone, I have recently had to start Pentasa.
After 3mths on it, I am still experiencing regular flares and overwhelming fatigue. Not sleepiness but every muscle in my body feels so weak, especially thigh muscles, that it aches and is a massive effort to walk up stairs. I also feeling faint and dizzy sometimes too, and like my heart is beating faster than usual.
I am training to be a yoga teacher, but struggling to go to anything but the most gentle classes, and am exhausted after demonstrating when teaching a class myself.
Does this sound like a Crohn's symptom? I am waiting for more blood results, but all levels were normal a couple of months ago. I am also very anxious at the moment, so any advice would be so, so appreciated!


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## JenLyn

Yes that sounds like typical symptoms. I get fatigued all the time as well. Its a battle everyday.


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## Vickyt

Thanks JenLyn. I do wonder if the fatigue is actually a side effect of the medication itself, though my specialist says he has never heard of fatigue being a side effect! I am on Pentasa 4g per day, and feel like the fatigue has got a lot worse since I started the medication. Does anyone know of other drugs from the same family as Pentasa that don't cause fatigue?


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## Write2bheard

I'm always trying to figure out how my symptoms (fatigue, foggy brain, arthralgia) are related to the disease vs the treatment. I've done B12 shots and that helped some, so I'm thinking it may be related to nutrient depletion.


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## Fla

I have been reading this forum for the last few weeks.  One thing I have learned is how different we all are.  Almost all of us have fatigue, but some have much more serious internal issues.  Therefore, my case can be much different from another.  Nonetheless, I will share my history if it can be of help to anyone who reads this.

I was first diagnosed with CR in 1998 due to periodic stomach aches with accompanying vomiting.  I started taking Pentasa, imuran and sometimes prednesone.  I still would have several flareups per year , but felt fine otherwise.  After a few years, I quit all drugs.  I still found that I would only have the same number of flareups.  I discovered if I would take a couple of prednisone when I first felt pain, I would be okay.  Before, I would wait to see the doctor and then have to take a full pack of prednisone.  

Until 2009, I felt that I was fortunate that I only had a mild case.  But then, I started feeling tired, foggy headed and had a neuropathy in my feet.  I spent the next three years going to doctors to find the cause.  I was treated for lyme disease, yeast, glutten, metals, etc., all to no avail.   Never did anyone say it could be Crohn's.  Around 2011, I started Entocort to see if it would help, but it had no effect.

In 2012, I went to the Mayo Clinic for a week.  They found nothing wrong except for Crohn's.  The internist advised me of a study done in 2005 that found some people with Crohn's could get a neuropathy.  My gastro dr never told me that.

I moved to Florida in 2012 and felt much better until the beginning of this year.  Now, I have the brain fog and more intense neuropathy.  A couple of months ago,as I still had some Entocort, I restarted it with no improvement.  Two weeks ago I went to a gastro dr for the first time in a couple of years so I could try 40mg of prednisone to see if it would help.  So far, nothing.  He suggested Remicade and then surgery.  Since I am not aware of any serious internal issues, I can not even consider surgery.  Remicade can have serious side effects.

I eat about everything including spicy foods.  I may have several drinks of alcohol every week.  The only thing I don't eat is corn and celery unless in modification.  Over the last 15 years, I have never been able to equate my diet to my flares.  I am sure this is not the case for many.

From reading this forum, I give thanks that my CR has not been as debilitating as many in this forum.  I can really feel for the many who go through the constant pain that I only periodically experience.  I wish we all could be free of this horrible disease.

In 2 weeks I go for an MRI.  My plans are to start doing a diy Fecal Transplant at the beginning of July.  Some evidently have been cured, but it is not proven.  I will not take Remicade or have surgery unless it is a medical emergency.  My quality of life right now, with the fatigue, is intolerable to me.   I will try FT first. I want to try to prevent more serious problems in the future.

To answer your question as to whether it is the medicine or the Crohn's, I don't think anyone can answer that as we are all different.  In my case, it seems to be strictly CR, but I know some people have severe side effects from some of these drugs.


----------



## MrsDay

Has anyone else found that you have a lot of energy some days, and other days you could just stay in bed all day? Yesterday I had energy and got a lot done, but today I just feel like going back to bed for a few more hours...I have a vitamin B12 deficiency and iron deficiency, so that doesn't help the tiredness either...


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## Spooky1

I can sympathise with you there.  I know exactly what you mean.  I always write a list and get so disappointed when I fail to achieve because I can't stay awake during the day.


----------



## BlackButterflies

I feel like I am on a fatigue roller coaster all of the time as well.  Some days I have decent energy - usually the beginning of the week.  Then I get worse as the work week progresses, sleep once I get home Fri, sleep and recover all day Sat, same thing Sun.  I can fall asleep the second I get home too on good days so I can't let myself settle in to relax until done what I need to do.  I have no vitamin deficiencies and sleep well throughout the night, just exhausted all of the time.


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## Plsti

I feel pretty energetic in the morning, but by the end of the day I am exhausted.


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## hamster139

I have a question for everyone, I am tempted to make it a poll, but maybe not.

Q:
Has anyone shown improvement with their fatigue from treatments other than the temporary relief some of us get from prednisone/encorte?


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## Ali29

When I started the Prednisone 4/14 - I saw a little boost of energy shortly after taking the Pred but that faded.  I'm tired all the time with brain fogs, but the GI is still messing with my meds and trying to find all the underlying conditions so my answer for now is 

No.


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## Spooky1

Not found anything yet.  still exhausted, but i'm up a lot at night too.


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## Roy1989

I've been struggling with bad fatigue and cognitive deficits for the past 3+ months. So much so that I have had to take a substantial amount of time off work.

My gastro is unsure if it is a side effect of the Methotrexate. However he has now had me stop this as I also got a horribly sore throat. I have experienced similar side effects to azathioprine too.

My GP referred me to a sleep clinic, a sleep test was performed, and I was subsequently diagnosed with idiopathic hypersomnolence. 

An overnight polysomnograph returned all normal results, with no apnea, restless legs etc identified. The following day, a multiple sleep latency test was performed. An average sleep latency of 10 minutes is considered normal. below 8 is of concern. My sleep latency was 6.

If you'd like more info about the sleep tests and how they work please let me know. Or alternatively, try this link (will open/download a PDF): http://static.squarespace.com/stati...02931040/Fact Sheet - Sleep Studies pages.pdf

My sleep physician has subsequently prescribed me Modafinil, an alertness promoting medication which is NOT in the same category as amphetamines such as Adderall/Ritalin. Again, if you'd like more info about Modafinil please ask! .

It's still early days to know if the Modafinil will be effective. However, so far I have only noticed a small and short increase in my mental alertness and acuity. I am now no longer able to nap when I'd like (and I'd REALLY like to). I'm hoping that as my body adjusts to the Modafinil I will return to some sort of normality. Otherwise, it's back to the drawing board.

Has anybody else had any similar experiences with medication to help combat the fatigue?


----------



## Madmouse

Hi Guys,

I am new to this particular support forum, but have been reading your posts. It is great to be able to talk to other people having the same problems.
My fatigue is so disabling that I am unable to work, and on most days, unable to do even simple housework and essential tasks like shopping. I am trying to get my GP and my GI to explore this further, but they are not being very supportive - they have checked I am not anaemic, thyroid function and inflammatory markers are ok and that is it. I will continue to battle because I cannot stay this dysfunctional...
Hope you all get some answers soon


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## nogutsnoglory

I am so fatigued that I too am unable to currently work. I'm trying a medication for fibromyalgia now and hoping that by targeting that illness that I will have increased energy and stamina because right now I'm a hermit.


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## Spooky1

My only consolation is that you Crohnies on here understand what the unbearable fatigue is like.  I too am hermit like and have started to feel i'm in crisis.  I don't want a life like this any longer.  I have spoken to people about this but they don't understand that having no cure is unbearable.  I have had no real life to speak of and I don't see any change.  I too cannot manage housework, wet washing, hoovering, showering, trying to heave my liquid feed pump around with me when its just too heavy, and the actual pain in all the muscles/joints is too much, and with painkillers doing nothing to help life is soooo difficult. thanks for being there for me.  I so sympathise, especially as I know that family and medically qualifieds don't know what to do to remove the fatigue.
:ghug:


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## nogutsnoglory

Has anyone tried stimulant drugs like provigil or nuvigil with success? They are designed to increase alertness but are also used for chronic fatigue. That might be my next stop med wise.


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## Spooky1

Many of us have issues with stimulants as it can stimulate the whole body including the digestive tract.


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## nogutsnoglory

Ugh so you mean stimulate it to poop? But not like create inflammation hopefully?


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## becls

I too am new to this support forum.  I have read your posts also and it is so nice to know I am not the only one that is feeling this way.  I am so tired all the time and often miss work.  I will occassionally have a few moments where I have some energy, but overall I am usually feeling fatigued.  I have been experiencing this for the  3 years since I was diagnosed.  I try to explain it to my doctors and they are usually non-responsvie about it and give not explanation or assistance..  My internal medicine doctor put me on Vitamin B-12, I asked my GI and he said that it was not that low.  I think that has helped  a little but not alot.  I am on Entocort but I don't seem to notice much different in my energy.   I have tried different things in my diet to increase energy and nothing there either.  If anyone knows of anything please share.


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## Ali29

Here is some drink for thought - I have started drinking Organic Macha Green Tea (Powdered form) from Japan a couple of months ago.  I can tell it gives me some energy (does have caffeine), not sure if that is great for some of our tummies.  It did not make any changes to my symptoms, except a little more energy.  It comes in a powder (or dried) and has to be mixed properly in the hot water (there is a specific range of temperature which the directions are clear).  I have 2 different types I order online - one directly from Japan (away from the area affected by the radiation & one I order from Amazon also produced in Japan away from the Nuclear Reactor).  Once you receive it you sift it - I just use a hand sifter so it mixes easily and place it in a cool, dry, dark place.  They usually come in a tin can.  It does not give me any jitters and you can make it as weak or strong as you like.  It has a lot of antioxidants and anti inflammatory properties in it, I like the ceremonial grade but there are a lot of them out there.  I only order ones that are grown only in Japan.  You can also use it in cooking - put it in muffins, etc.  There are recipe books and recipes online.  I usually drank regular tea and could go right back to sleep so caffeine never affected me either way. Except I can't drink coffee now due to D.  This does no give me the urgency to go to the restroom like coffee did.

When I drink a cup in the afternoon - I can't go to sleep at 9-10 my usual time so helps to stay up if need be (I was able to stay up for Fireworks!!).  I drink one cup in the morning - no other caffeine all day.

Take a look online and see if it might be beneficial for you.  I did a lot of research before I started drinking it just to be sure it wouldn't magnify any of my symptoms.

Good luck!


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## scooby2651

I feel tired all of the time. On Wednesday I was back in bed 3 hours after getting up. Couldnt be bothered to do anything, didnt have the energy. Am awake so much during the night though. My rheumatologist said that I needed 8 hours continuous sleep. In last 4 apparently is when the body repairs itself. I nearly laughed in his face, would be  a miracle to get 4 hours uninterrupted sleep.


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## nogutsnoglory

Even when I sleep 8 hours it's like I didn't sleep 10 minutes it's not rejuvenating at all. I'm going to possibly try sleep meds and stimulants.


----------



## razz2525

So glad I found this forum yesterday and this group today!  I have been diagnosed with IBS and have been trying the low FODMAP diet although it's been terribly hard to find recipes tailored for US users so I've had to do a fair bit of translation and customization.  I've minimized the bloating A LOT but there's still pain. I'm waiting for the results of biopsies taken during my colonoscopy/EGD on Wednesday so we'll see what happens but so far gastritis and no sign of diverticiultis which I was so sure of, given the location of the pain (lower left abdomen for months now).  Bloodwork all fine too.  Ack.  But I've been tired for YEARS, even when I was doing Paleo and CrossFit years ago after the birth of my 2nd child... I had more energy but still could always sleep.  Now it's really bad, my stomach gurgles and movement keep me awake until the wee hours of the morning since I can't get comfortable, Tylenol doesn't help, I'm resisting taking the hydrocodone my GI gave me since I don't want to be dependent, and then I finally fall asleep with only a few hours until alarm time.  I simply cannot sleep anymore.  

I'm going to force myself to get back into exercise tomorrow so maybe that will help, but with the stomach issues, weight loss, and all these CT scans/exams I've been doing and the toll the drinks have made on my stomach, I'm weak as a kitten.  I really wanted to sleep another few hours today but I had to drag myself into work.  And even now here, I can barely focus.  I've had to eliminate all the supplements that kept my energy going, coffee, my AdvoCare Slam/Slim that was a gut irritant, and even my Alpha GPC for my memory... even Vitamin B complexes seem to give me issues.  *sigh*.  This chronic fatigue is taking its toll. I honestly believe that I have Crohn's but since the tests say I don't, I apparently don't! 

I'm badgering my poor husband to make our bedroom light tight at night since our blinds don't shut much out.  I need an eye mask STAT lol!


----------



## krika

I am also fatigued and no matter how much rest I get, it dosent really help. When is it time to rest and when is it time to accept that I will always be achy and exhausted and just do stuff? Its not easy to do stuff when fatigued all the time. I find it hard to find any sort of balance when it comes to this and I notice how much it botheres me in the summer and the weather is nice.


----------



## DJW

I'm going to try taking my azathioprin before bed to see if that helps.


----------



## Roy1989

Sorry, I would have been back on here responding and staying involved a lot sooner. However, got a bit side tracked with a few more hospital visits, day procedures, and moving house! Needless to say, the fatigue didn't help too much ;-).



nogutsnoglory said:


> Has anyone tried stimulant drugs like provigil or nuvigil with success? They are designed to increase alertness but are also used for chronic fatigue. That might be my next stop med wise.


The Modafinal that I mentioned in my previous post is the Provigil that you mentioned. I've been using it now for a couple of months. My experience may not be typical. However I haven't found any great success with it. I'm going back to my sleep physician in 3 weeks for a review. Hopefully he'll have more of an answer and a plan. Definitely feel free to let me know if you want more info about my experience though.

You also queried the impact on the gut? I definitely noticed an adjustment period in the first few days of starting the Modafinil where I'd have urgent D and be running to the toilet... more so than usual.. It was also accompanied by some horrible headaches/migraines that completely wiped me out... That all settled down after three or four days though.

Let me know if you start anything, I'd be really interested to hear your experience! What you've reported sounds just like how I've been feeling.. Wiped out even after a full nights rest, not rejuvenated at all etc.


----------



## Roy1989

DJW said:


> I'm going to try taking my azathioprin before bed to see if that helps.


Did you try this? In the past I had increased symptoms of fatigue due to Azathioprin. My gastro had me stop it, the fatigue symptoms recovered within 46 hours so he switched me to Methotrexate. 

Subsequently the fatigue has returned, and it now doesn't appear to be related to a side effect of any of the meds (I have now been off the methotrexate for 5-6 weeks and the fatigue has only gotten worse).


----------



## DJW

I have tried it but its not made much difference. I'm also in a flare so there is a lot going on. 
Also battling anxiety and ddepression.  I was also tested for multiple myaloma. Thankfully it was negative.

I did read a study in the last couple month (didn't think to write it down for future reference) that showed as crohns patients age about 20%-30% experience fatigue even when not in a flare. I hope I don't get that.


----------



## Roy1989

DJW said:


> I have tried it but its not made much difference. I'm also in a flare so there is a lot going on.
> Also battling anxiety and ddepression.  I was also tested for multiple myaloma. Thankfully it was negative.


Glad to hear the test came back negative. Unfortunately trying to find a cause for fatigue becomes a process of elimination.. On the plus side, you end up getting tested for so many things that you can eventually rest assured that the rest of you is keeping up ok (hopefully!).

Have you discussed alternative meds such as the Methotrexate?

I've certainly had to start taking steps to fight the depression. Which again does not help any symptoms of fatigue. In my opinion, it really becomes a bit of a "chicken or the egg" scenario. Which came first? Losing my income, my savings, my friends and my apartment (a rental) certainly have contributed to me feeling pretty bloody lousy about the whole situation. But, was it possible that I was slowly slipping in to depression without realising? .. Who knows.

But, on that note, I am certainly open to trialing some anti-depressants soon to see if that works.

I'm also just starting to wean off a long course of Prednisone... Which is definitely causing my mood to get even worse... Oh the joys!


----------



## DJW

I hear you on the pred. The tricky thing with depression in males - it can manifest itself in ways that don't look like depression at all. Difficulty concentrating. Short tempered. Restless. Insomnia, fatigue, etc. The ONLY reason I sought help was because my major was psychology.  I new something was up. 

I am due to start remicade in the next few weeks. I don't want to make any med changes until I see how it works.


----------



## Roy1989

DJW said:


> I hear you on the pred. The tricky thing with depression in males - it can manifest itself in ways that don't look like depression at all. Difficulty concentrating. Short tempered. Restless. Insomnia, fatigue, etc. The ONLY reason I sought help was because my major was psychology.  I new something was up.
> 
> I am due to start remicade in the next few weeks. I don't want to make any med changes until I see how it works.


Fair call on the medications. I'm trying to decided weather or not I start the anti-depressants that were given to me a few weeks ago now, or wondering if I should wait another month when I've finished the pred and see how I'm travelling. .. Idunno, maybe one to discuss with my doctor again.

I've always been one to avoid any meds unless absolutely necessary. But it's reached the stage where I'm now basically asking any and every doctor to throw anything at me which may work.

What you say about males and depression is very true. This isn't the first time in my life that I have been diagnosed with depression. And It's amazing to see exactly how the symptoms present themselves. 

Certainly anyone who is feeling tired and fatigued needs to consider if they are depressed. Again though, they can both feed off each other in such a vicious cycle.


----------



## Madmouse

I completely agree with you guys about depression and fatigue, always worth considering. However, I have been having a battle with my GP whose immediate response was 'you must be depressed here are some anti-depressants' without even acknowledging the fact that 40-46% of IBD patients have fatigue even when not flaring...
here is a great new fatigue link, from the UK charity http://www.fatigueinibd.co.uk/


----------



## Roy1989

Madmouse said:


> I completely agree with you guys about depression and fatigue, always worth considering. However, I have been having a battle with my GP whose immediate response was 'you must be depressed here are some anti-depressants' without even acknowledging the fact that 40-46% of IBD patients have fatigue even when not flaring...
> here is a great new fatigue link, from the UK charity http://www.fatigueinibd.co.uk/


This is great, thanks for sharing! I'll definitely be showing some more people.

Wish they'd do something like this in Australia too. I won't hold my breath, but hopefully this is a sign of more research and more to come.


----------



## lisakuney

I am seeing a new doc soon who is board certified in Internal Medicine, Rheumatology, and Immunology. I have high hopes for addressing the fatigue and pain. My Crohn's doesn't really bother me much, although recently have had a resurgeonce in reflux much worse than usual. I am gathering my records from all my docs and all diagnostics over the last 8 years, putting them in a binder, and creating a timeline. Tired of this horseshit fatigue. Diagnostic shit better get real lol.


----------



## darlenesart

cca2013 said:


> I'm currently in a flare right now and I'm exhausted. I was so frustrated while I was hospitalized because I would tell the docs how tired I was and they would just shrug and look at me as if I were crazy. A nurse brought me a walker, because they assumed from my complaining that I couldn't walk. I had to explain to them that even if I used the walker, I would still walk like a zombie with my head down. In my brain and my entire body, I feel like a limp noodle...like I'm being held up by a string...it's hard to explain.
> 
> I should be catching up on homework and papers but I'm so freaking tired.
> 
> And I start work Dec 13th. I'm praying that I have half of my normal energy levels by then. There's no way I will be able to get to work by 7:30...stay until 5 and then drive through horrible traffic to get home. Ugh.
> 
> I've been taking vitamin d3 and calcium and that helps A LOT. Just a few weeks ago, I couldn't even hold my head up or even complete a sentence without getting winded.


 What did the Vitamin d3 and calcium do for fatigue. My daughter hurts all over and just wants to sleep.


----------



## Ali29

I don't get that the fatigue is not more recognized even when blood work shows lower ends of normal (what ever that is) - I believe each of us is different in our blood work and lower levels (even in the normal range) can cause severe fatigue - which I think is dismissed by our GI's.  I sleep, lay on the couch, watch TV and am so exhausted all day long.  My blood levels are always on the low end or a couple of numbers below their normal so it is always dismissed.  I think this should be reevaluated especially for those of us who are tiny.  

I don't have any depression just bouts of crying occasionally just because where my life is now.

Good luck to you all!!


----------



## Crohnsforever

I know this may sound completely crazy BUT, I too was exhausted all the time.  After 2 resection surgeries it only got worse.  I was diagnosed with chronic anemia ( not from blood loss but due to malabsorption) and now go in for iron infusions every 3 months.   That's not the crazy part...lol.  I was seeing a "shrink" (long story short...divorce after 30 yrs of marriage)' anyway, I told him about the fatigue and lack of concentration and he suggested a low dose of adderall.  I figured, what the heck, at this point I would try just about anything.  I now take 5 mg. of adderall at 9am every day.  I can't believe the difference.  I am still a little tired at the end of the work day but my ability to stay focused and have the energy to complete a full work day has made a world of difference in my mental health....  
I've been dealing with this disease for almost 40 years...I've been on just about every treatment for Crohn's that has come out....some worked for awhile, some made no difference.  I'm about to start Cimzia injections.  I'm keeping my fingers crossed.


----------



## nogutsnoglory

Roy I'll post about what the doc says next week but probably provigil I'll ask about adderal and LDN. In the meantime I'm increasing b12 and magnesium to see if that helps and removed all distractions from my bedroom so I sleep better.


----------



## Laughngirl

Essieluv said:


> The fatigue I get from my Crohn's is so crippling. I cannot do much, and when I do finally muster up strength to accomplish something, I have to rest for days after. It is so annoying, especially because people just assume that I am lazy. I am not lazy, I'm just so exhausted!


I know exactly how you feel!  I feel incredibly guilty because I can no longer do the things I used to and it gets quite depressing.  My hubby is very supportive but I'm new to Crohn's and I'm sure over time, he'll start feeling like I'm just lazy.  It takes all I've got most days just to get out of bed.  Very confusing because my blood work doesn't indicate anemia. :confused2:


----------



## Laughngirl

Ali29 said:


> I don't get that the fatigue is not more recognized even when blood work shows lower ends of normal (what ever that is) - I believe each of us is different in our blood work and lower levels (even in the normal range) can cause severe fatigue - which I think is dismissed by our GI's.  I sleep, lay on the couch, watch TV and am so exhausted all day long.  My blood levels are always on the low end or a couple of numbers below their normal so it is always dismissed.  I think this should be reevaluated especially for those of us who are tiny.
> 
> I don't have any depression just bouts of crying occasionally just because where my life is now.
> 
> Good luck to you all!!


I agree! I too have those bouts of crying - those suck - I really hate to cry! :yfrown:  I still work - which in itself is extremely difficult because I can't concentrate very well and feel like I could just put my head on my desk and sleep all day.  When I'm off I have NO energy and so have to really push to get even the basics done.


----------



## Laughngirl

lisakuney said:


> I am seeing a new doc soon who is board certified in Internal Medicine, Rheumatology, and Immunology. I have high hopes for addressing the fatigue and pain. My Crohn's doesn't really bother me much, although recently have had a resurgeonce in reflux much worse than usual. I am gathering my records from all my docs and all diagnostics over the last 8 years, putting them in a binder, and creating a timeline. Tired of this horseshit fatigue. Diagnostic shit better get real lol.


Good luck to you!  Please keep us up to speed about how it's going!


----------



## Oxycontin

Hello, 
If it's not to much of a hassle could I please join this support group ?!

Kind regards Nathan


----------



## nogutsnoglory

Everyone is welcome oxy. 

Has anyone tried Ritalin or Adderal for energy? I'm hearing people with chronic fatigue syndrome have benefited from it.


----------



## DJW

nogutsnoglory said:


> Everyone is welcome oxy.
> 
> Has anyone tried Ritalin or Adderal for energy? I'm hearing people with chronic fatigue syndrome have benefited from it.


Its something I'm going to talk to the doctor about.


----------



## nogutsnoglory

I have to look into it more. Since I was a kid I have instilled in me that only "crazy" people take Ritalin. Like really crazy. I'm sure that's not true but that's what people said. I also heard it has serious side effects. It really might all be misinformation as I do take Prozac and many said Prozac is for the crazies and I'm not nuts but I do have depression.


----------



## UnXmas

I remember when I took prednisone and I had so much energy, and a boost in mood (though I knew at the time it was artificial), and I wondered why it wasn't prescribed for fatigue and depression. Then I began experiencing more of the side effects and could see why there were good reasons it shouldn't be given out liberally. However, some side effects affect people more than others, and if fatigue or depression are as debilitating as Crohn's in some cases, I think there's an argument in favour of prescribing it for these conditions. I thought the same when taking prednisolone recently, and was reminded what it's like to have energy.

I've not heard of Ritalin or Adderal being prescribed for fatigue, but if you can find a doctor who will, but who also takes side effects seriously and is advising you properly about the pros and cons, I generally think a lot of medications have multiple uses, and (careful) experimenting can help find solutions.


----------



## nogutsnoglory

Pred is way too dangerous to take consistently and also not everyone gets energy. I hate pred it ruined my bones. It just made me a hungry bloated monster.


----------



## hamster139

Vickyt said:


> Hi everyone,
> You all sound like you are in the same boat as me!
> This is my first time on a Crohn's forum. So far, I have been trying to deal with my Crohn's alone, and advice for people who are going through the same thing would be so helpful.
> After 2yrs of trying to control my disease through diet and supplements alone, I have recently had to start Pentasa.
> After 3mths on it, I am still experiencing regular flares and overwhelming fatigue. Not sleepiness but every muscle in my body feels so weak, especially thigh muscles, that it aches and is a massive effort to walk up stairs. I also feeling faint and dizzy sometimes too, and like my heart is beating faster than usual.
> I am training to be a yoga teacher, but struggling to go to anything but the most gentle classes, and am exhausted after demonstrating when teaching a class myself.
> Does this sound like a Crohn's symptom? I am waiting for more blood results, but all levels were normal a couple of months ago. I am also very anxious at the moment, so any advice would be so, so appreciated!


Yes, this sounds like me.  The aches in the thigh muscles is a big issue for me, and I take a topical cream, like Bengay/IcyHot.  It helps.


----------



## hamster139

Roy1989 said:


> I've been struggling with bad fatigue and cognitive deficits for the past 3+ months. So much so that I have had to take a substantial amount of time off work.
> 
> My gastro is unsure if it is a side effect of the Methotrexate. However he has now had me stop this as I also got a horribly sore throat. I have experienced similar side effects to azathioprine too.
> 
> My GP referred me to a sleep clinic, a sleep test was performed, and I was subsequently diagnosed with idiopathic hypersomnolence.
> 
> An overnight polysomnograph returned all normal results, with no apnea, restless legs etc identified. The following day, a multiple sleep latency test was performed. An average sleep latency of 10 minutes is considered normal. below 8 is of concern. My sleep latency was 6.
> 
> If you'd like more info about the sleep tests and how they work please let me know. Or alternatively, try this link (will open/download a PDF): http://static.squarespace.com/stati...02931040/Fact Sheet - Sleep Studies pages.pdf
> 
> My sleep physician has subsequently prescribed me Modafinil, an alertness promoting medication which is NOT in the same category as amphetamines such as Adderall/Ritalin. Again, if you'd like more info about Modafinil please ask! .
> 
> It's still early days to know if the Modafinil will be effective. However, so far I have only noticed a small and short increase in my mental alertness and acuity. I am now no longer able to nap when I'd like (and I'd REALLY like to). I'm hoping that as my body adjusts to the Modafinil I will return to some sort of normality. Otherwise, it's back to the drawing board.
> 
> Has anybody else had any similar experiences with medication to help combat the fatigue?


I did the exact same thing.  Went though a sleep study, doc said something similar.  I tried Modafinil, it seemed similar to caffeine, and whenever I act on having energy, I always crash severely.  I tried ritalin, very limited effect, also similar to caffeine.  I tryied vyvanse, it seemed to be a bit better...  less of a boost/crash... a bit more focus....so I've been on it ever since.

However, it doesnt give me 'true' energy, it gives me the illusion of energy and motivation, energy that I don't truly have.  So again, if I react to it, and use it for chores, etc I will crash in the most severe way, feeling horribly sick, fatigued, run-down.  BUT if I use it very strategically, it can help give me times of the day when I am more focused, so I can do certain things, like check emails, work on the computer, and do phone calls (sit-down tasks).  As a side note, I have pretty bad ADD, so maybe that is why it has this benefit.

The only suggestion I would make is, make sure you drink plenty of water if you go on these stimulants.   Otherwise, they can make things worse.


----------



## hamster139

Madmouse said:


> Hi Guys,
> 
> I am new to this particular support forum, but have been reading your posts. It is great to be able to talk to other people having the same problems.
> My fatigue is so disabling that I am unable to work, and on most days, unable to do even simple housework and essential tasks like shopping. I am trying to get my GP and my GI to explore this further, but they are not being very supportive - they have checked I am not anaemic, thyroid function and inflammatory markers are ok and that is it. I will continue to battle because I cannot stay this dysfunctional...
> Hope you all get some answers soon


Sounds identical to my situation.  My GI is not very supportive either, and my GP is supportive, but he is not knowledgeable in the area, so all of his tips are for non-Crohn's pateints, so none of the tips have worked.

Yes, working outside the house has become impossible for me.  Housework is near-impossible.  I now do all shopping online.  I use amazon fresh to order groceries.  But its only available in certain areas.


----------



## hamster139

nogutsnoglory said:


> I am so fatigued that I too am unable to currently work. I'm trying a medication for fibromyalgia now and hoping that by targeting that illness that I will have increased energy and stamina because right now I'm a hermit.





Yes, its very very sad becoming a recluse.  And its something I can't explain to others about.   Its very tough to visit anyone.   I have stopped vacationing, which is really ruining the family life.


----------



## hamster139

Roy1989 said:


> Glad to hear the test came back negative. Unfortunately trying to find a cause for fatigue becomes a process of elimination.. On the plus side, you end up getting tested for so many things that you can eventually rest assured that the rest of you is keeping up ok (hopefully!).
> 
> Have you discussed alternative meds such as the Methotrexate?
> 
> I've certainly had to start taking steps to fight the depression. Which again does not help any symptoms of fatigue. In my opinion, it really becomes a bit of a "chicken or the egg" scenario. Which came first? Losing my income, my savings, my friends and my apartment (a rental) certainly have contributed to me feeling pretty bloody lousy about the whole situation. But, was it possible that I was slowly slipping in to depression without realising? .. Who knows.
> 
> But, on that note, I am certainly open to trialing some anti-depressants soon to see if that works.
> 
> I'm also just starting to wean off a long course of Prednisone... Which is definitely causing my mood to get even worse... Oh the joys!



Yeah, definitely a chicken and egg thing.   Losing everything takes a horrific toll on your mental state... but then.. we would have never lost anything had it not been for the fatigue.

I am trying to battle the depression through goal-making.   I have never tried anti-depressants.  I tried anti-anxiety pills, and they were a disaster... I would have outragious anxiety when I was off them.  At least now I know not to use them.


----------



## Solidsam

nogutsnoglory said:


> Everyone is welcome oxy.
> 
> Has anyone tried Ritalin or Adderal for energy? I'm hearing people with chronic fatigue syndrome have benefited from it.


hey.... Ritalin is the official drug prescribed for adhd.... One of the side affects of ritalin is that u can't  fall asleep whilst under the influence.... I doubt anyone would prescribe it for u without being diagnosed with adhd coz i know in uk it is hard to get even with adhd! I deff. Like the idea that if u could get it, it might help for fatigue but then mayb get a similar drug called concerta which is similar just slow release and helps for concentration. I will point out though that both have powerful side affects and is known to be even worse for those that don't officially need it.... Either good luck and keep up updated!


----------



## UnXmas

hamster139 said:


> I did the exact same thing.  Went though a sleep study, doc said something similar.  I tried Modafinil, it seemed similar to caffeine, and whenever I act on having energy, I always crash severely.  I tried ritalin, very limited effect, also similar to caffeine.  I tryied vyvanse, it seemed to be a bit better...  less of a boost/crash... a bit more focus....so I've been on it ever since.
> 
> However, it doesnt give me 'true' energy, it gives me the illusion of energy and motivation, energy that I don't truly have.  So again, if I react to it, and use it for chores, etc I will crash in the most severe way, feeling horribly sick, fatigued, run-down.  BUT if I use it very strategically, it can help give me times of the day when I am more focused, so I can do certain things, like check emails, work on the computer, and do phone calls (sit-down tasks).  As a side note, I have pretty bad ADD, so maybe that is why it has this benefit.
> 
> The only suggestion I would make is, make sure you drink plenty of water if you go on these stimulants.   Otherwise, they can make things worse.


I tried modafinil also. It definitely improved my concentration (apparently a lot of students use it - not necessarily obtaining it from a doctor). I'm not sure it improved my energy for physical things though. I didn't like it because it gave me insomnia, so I only used it a couple of times. This was a while ago, before I was taking Amitriptyline (which, for me, cures most types of insomnia), I don't know what my sleeping would be like if I took both together - Amitriptyline cured the insomnia I experienced on prednisone, and when taking prednisolone recently I slept very well still. 

Codeine improves my energy levels a lot.


----------



## nogutsnoglory

I'm also going to ask about LDN because that helps people sleep better and with improved rest, energy levels should increase.


----------



## Fla

nogutsnoglory said:


> Has anyone tried stimulant drugs like provigil or nuvigil with success? They are designed to increase alertness but are also used for chronic fatigue. That might be my next stop med wise.


Another drug mentioned previously is Adderall.  Provigil & Nuvigil are very expensive, but I believe there is a generic for Provigil.  My family doctor prescribed Venlafaxine for more energy, but I believe one of these other ones may be better.  I hope to switch this week to either Adderall or Provigil and post results.


----------



## UnXmas

Fla said:


> Another drug mentioned previously is Adderall.  Provigil & Nuvigil are very expensive, but I believe there is a generic for Provigil.  My family doctor prescribed Venlafaxine for more energy, but I believe one of these other ones may be better.  I hope to switch this week to either Adderall or Provigil and post results.


The generic of Provigil is modafinil, which was also mentioned above.


----------



## nogutsnoglory

Going to start Nuvigil, I'll let everyone know if it boosts my energy.


----------



## Roy1989

nogutsnoglory said:


> Going to start Nuvigil, I'll let everyone know if it boosts my energy.


At what dose?


----------



## nogutsnoglory

150mg is that standard? I have no clue.


----------



## IofNewt

UnXmas said:


> I think I belong in this group. Does anyone else sometimes just want to cry when they know they have to go out somewhere when your body is desperate for sleep? Even social things that are supposed to be fun, they're such an effort.


I have been feeling this way for years and it's gotten worse since my resection because I can't stop going to the bathroom.

I phone it in everyday.. I run on habit mostly but I'm sure I'm moving at half speed most of the time.

It's depressing.


----------



## leezapeza

Hi guys yeap I've had that work in the arvo 4 days on 2 days off before I was diagnosed I would sleep on my days off an and not get out off bed before lunchtime on my work days I'm on predisone now I find it hard sleeping there's never a even keel.


----------



## Roy1989

nogutsnoglory said:


> 150mg is that standard? I have no clue.


I believe so. I'm taking Modafinil 200g twice a day. I believe 150g Nuvigal is the equivalent of one 200g dose of Modafinil. 

Nuvigal and Modafinil are very similar in their composition and their effects... I'm not entirely sure WHAT the difference in, but perhaps I'll consult with Dr Google a little bit more.

How are you finding it?


----------



## nogutsnoglory

I didn't start yet. How do you find yours? Isn't twice a day keeping you awake at night?


----------



## Roy1989

nogutsnoglory said:


> I didn't start yet. How do you find yours? Isn't twice a day keeping you awake at night?


I thought it would, and I can easily keep myself up for a few hours longer than normal. But if I do try to to fall asleep at a normal time I usually can without difficulty. Perhaps a symptom of the levels of fatigue.

I find it helps a little, but not nearly enough. I'd still want to take it, but it doesn't really give me the kick I need.

I'm seeing my sleep doctor in a weeks time. I'll report back here if there are any significant changes/recommendations (I'm not leaving that room without being given a new treatment method).


----------



## BlackButterflies

Good morning everyone

I am needing a moment to vent my frustration. I am so tired of being tired. It's all I have become, the sleepy girl.  Not only sleepy but wholly and completely lacking energy.  How can I hope to have a family one day when it's a struggle to take care of myself and even go to work?  I'm feeling very upset by this today.


----------



## Spooky1

I chose not to have children.  I know how much energy they take as i'm a qualified nanny and Montessori teacher.  I'm always totally worn out to the point that even driving anywhere is extremely hard work.

You have my sympathy.


----------



## Adam1971

Hello everyone. I just signed up for this support thread because I am also pretty much always tired. I have to push through it most of the time for work and family, but I find that my mental fog is the worst of it. It leaves little mental steam for dealing with life's problems and making decisions. Its not something my GI doc would even consider. He's likely to think mental health problems. I am technically in remission after a surgery in 2012, but I have frequent "little flares", and an almost constant fatigue and fog. Though I know that depression and related irritability has a part in it, it feels like chicken and egg stuff with crohn's. 

Thanks.  I guess I needed to put it out there.


----------



## Solidsam

BlackButterflies said:


> Good morning everyone
> 
> I am needing a moment to vent my frustration. I am so tired of being tired. It's all I have become, the sleepy girl.  Not only sleepy but wholly and completely lacking energy.  How can I hope to have a family one day when it's a struggle to take care of myself and even go to work?  I'm feeling very upset by this today.


just wanted to give my support for wat its worth... I was chasing a music/singing career and atm i've had to stop that amongst many other day to day things! Its hard yes, but i hope we'll b strong abt it and hope u get help! Don't give up and the main thing.... Keep the smile on the face! Don't think too much abt the future it'll only make things worse and hopefully tomorrow will b a better and easier new day!


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## Ann Morgan

I was writing a post and then I clicked on the wrong thing and my post went away. Ahhhhhhhhhhh!   I have been what I call "tired" for years. Some folks say tired. Some say exhaustion. Some say fatigue. I have not slept well for years. I sleep in a recliner because of my hip arthritis and my shoulder joint disease. I am sick and tired of being sick and tired. I was journaling for a while and the first thing I wrote in my journal every morning was......I'M TIRED. I took Lunesta for sleep for a few years but that is a dangerous drug and I would not recommend it. I tried Melatonin. I have never had a sleep study, but I would like one, as I have found myself occasionally waking up with a snoring sound and my mouth open. I live alone so I have no idea if I snore. I take Seroquel ( a psychiatric drug ) every night before I go to bed and that makes me tired and really helps me get to sleep. But I wake up at least twice every night. And recently, in the early morning hours I am waking up with arthritis and joint pain and so then my mornings suck. Doctors always ask me how many hours of sleep I get a night....I DON'T KNOW !  Maybe some folks have a form of narcolepsy ?  I don't know anything about that condition, but I saw a commercial on television recently about it. I have been "tired" since at least 1996, that is when I went to my PCP and told her "why do I feel like a 96 year old when I am only 36 years old". The last 20 years have really been downhill for me as far as my health. One person on here wrote about participating in activities and being tired. I agree, it is hard to participate in ANYTHING when your body is so tired which makes your brain drained of energy too.


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## DJW

Yesterday was the first day in several years that I felt normal. It was great. Maybe I've turned the corner. Well today turned out to be a do nothing but sleep kinda day. Disappointing.


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## UnXmas

Ann Morgan said:


> I was writing a post and then I clicked on the wrong thing and my post went away. Ahhhhhhhhhhh!   I have been what I call "tired" for years. Some folks say tired. Some say exhaustion. Some say fatigue. I have not slept well for years. I sleep in a recliner because of my hip arthritis and my shoulder joint disease. I am sick and tired of being sick and tired. I was journaling for a while and the first thing I wrote in my journal every morning was......I'M TIRED. I took Lunesta for sleep for a few years but that is a dangerous drug and I would not recommend it. I tried Melatonin. I have never had a sleep study, but I would like one, as I have found myself occasionally waking up with a snoring sound and my mouth open. I live alone so I have no idea if I snore. I take Seroquel ( a psychiatric drug ) every night before I go to bed and that makes me tired and really helps me get to sleep. But I wake up at least twice every night. And recently, in the early morning hours I am waking up with arthritis and joint pain and so then my mornings suck. Doctors always ask me how many hours of sleep I get a night....I DON'T KNOW !  Maybe some folks have a form of narcolepsy ?  I don't know anything about that condition, but I saw a commercial on television recently about it. I have been "tired" since at least 1996, that is when I went to my PCP and told her "why do I feel like a 96 year old when I am only 36 years old". The last 20 years have really been downhill for me as far as my health. One person on here wrote about participating in activities and being tired. I agree, it is hard to participate in ANYTHING when your body is so tired which makes your brain drained of energy too.


Hi Ann Morgan, when I experienced insomnia as a side effect from prednisone, the _only_ med that sent me to sleep was Amitriptyline (also an antidepressant). When I was on prednisone was the only time I wasn't fatigued - prednisone gave me a ton of energy, but awful, awful insomnia. 

Now I'm no longer on prednisone, and so I'm back to suffering extreme fatigue. I'm still taking Amitriptyline, and it allows me to get a very good night's sleep every night, and I wake up early in the morning feeling like I've had a good rest - first thing in the morning is the only time of day I feel I have some energy. Unfortunately sleeping so well doesn't mean I don't get tired, though. Being ill means I'm tired in the day, no matter how well I've slept.

I just mention Amitriptyline because one of the reasons it's so helpful to me is that it allows me to sleep even though I have extreme discomfort and sometimes pain (stomach pain, discomfort due to bladder problems, and cramps in my legs). I haven't found anything to actually stop the discomfort and pain, but Amitriptyline allows me to sleep through it. So it may be something you want to look into if it's pain that's keeping you awake. If you're on another psychiatric med you may not be able to get a prescription for it though, as they may cause problems if taken together, but I thought I'd mention it.

You mention narcolepsy - I believe I have a form of narcolepsy, though it's never been problematic for me, so I've never sought a formal diagnosis or medical help for it. My whole life I've had weird sleep behaviours - walking and talking in my sleep, and more unusual activities, such as getting dressed, moving the furniture around, taking showers, etc. in my sleep. I also have night terrors occasionally. And I can sleep absolutely anywhere, any time of day, no matter how noisy it is or what else is going on. Once I actually fell asleep during a rectal examination - there were no sedatives involved - and that kind of confirmed for me that there was something very abnormal about the ease with which I fall asleep! 

I'm not sure about the connection between narcolepsy and fatigue though, as the sleepwalking has been with me all my life, whereas the fatigue came only when my health started failing, which was in my teens.

I do know that there are many forms of narcolepsy, and that there are other sleep disorders. But I'm not sure you should suspect you have narcolepsy if your only sleep-related symptom is fatigue, and the fatigue has only come on since you've had other illnesses. The illnesses you have and their interference with your sleep is bound to make you exhausted.

Don't give up on seeking a way to get a good night's sleep. There are a lot of remedies out there, and there may be one that can help you.


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## nogutsnoglory

Day 2 of Nuvigil update. No energy but more diarrhea. If the diarrhea doesn't stop I may need to stop this trial. Most people seem to respond within a few hours on the drug so the fact that I don't feel anything is upsetting.


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## DJW

Sorry to hear that NGNG.


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## nogutsnoglory

Thanks, I'm just going to stop for now and resume it again in the very near future. See if it's a culprit.


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## they call it a come back

Essieluv said:


> The fatigue I get from my Crohn's is so crippling. I cannot do much, and when I do finally muster up strength to accomplish something, I have to rest for days after. It is so annoying, especially because people just assume that I am lazy. I am not lazy, I'm just so exhausted!


I know the feeling I just want to do something without it being such a chore just to do it, I hate when everyone says you just need to rest I am over resting, I dont know about you


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## Ann Morgan

Hi UnXmas: Thank you so much for your input. I WAS on Amitriptyline in the late 1990's. My PCP gave it to me and I did not know it was also a psychiatric drug ( my doc never told me THAT part ). Anyway, I was on Lunesta for about five years. Lunesta, as far as I know is supposed to only be used short term.  Lunesta is a very powerful drug and I am glad I am not taking it anymore. I had night-eating while on the Lunesta and what also I call "sleep driving" while on my way to work ( the medicine was STILL in my system ).  I don't ever want to take Lunesta again.  I AM currently taking some psychiatric drugs and one of them is Seroquel. I take that RIGHT before I go to bed and it helps me get to sleep. I don't know why I wake up every two hours at night. It could be my bladder. It could be sleep apnea too because I have caught myself a few times waking up with my mouth open and a snoring noise. I live alone so I have no idea if I snore. The other day I had a busy day and I was exhausted. I also went to bed later that evening than normal. I actually slept five hours in a row !!!!!!!!!  I don't remember the last time I slept five hours in a row. I sleep in a recliner because I have hip arthritis and I have joint disease in my left shoulder. Someday I would like to take a sleep apnea test. I have only taken Prednisone once in my life and that was when I had Optic Neuritis in 2001. I took it for two weeks. I had NO diarrhea and NO pain, it was the best two weeks of my life !  But it did cause insomnia and it did make me have quite an appetite. As far as sleep goes, I have some headphones and a portable CD player that I can use when I go to bed in my recliner. I have eight different relaxing music CD's and this helps me get to sleep too.  I can manage to get to sleep without Lunesta, but I cannot stay asleep very long. The Seroquel and the music help me get to sleep. Thanks for your help. Sorry this post is so long.


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## Ann Morgan

Sorry I repeated myself in my above e-mail !    I am a bit crazy on the keyboard today.


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## Roy1989

nogutsnoglory said:


> Day 2 of Nuvigil update. No energy but more diarrhea. If the diarrhea doesn't stop I may need to stop this trial. Most people seem to respond within a few hours on the drug so the fact that I don't feel anything is upsetting.


In my experience with Modafinil, I felt WORSE for a few days when I started due to the side effects. However, once my body adjusted and the side effects went away I did find a small benefit within an hour or so of taking it.

The important thing to remember is that you aren't going to fill drugged up. You won't experience a "high" or a "rush" so the effects of the drug _can _ be very slight and therefore some people who don't actually have fatigue, and take it recreationally or as a study-aid report that it hasn't worked for them. The reason I mention this is just so that you are aware of what to expect . And apologies if I'm telling you stuff that you already know.



nogutsnoglory said:


> Thanks, I'm just going to stop for now and resume it again in the very near future. See if it's a culprit.


How did this go? back on it yet? Again, in my experience the greatest benefit was gained after an extended period of time. Perhaps give yourself a trial period of a week or two, see how it does go.

For myself, Modafinil has limited effect. It doesn't really give me the push I need. There's some effect, but not enough.

However, I need to also mention (which I think I may have done already either in this thread or elsewhere on the website) that I have been diagnosed with Idiopathic Hypersomnolence (IH). Just to muddy the waters a little bit. Essentially it's a known sleep disorder, there's an imbalance in the GABA system, and Modafinil often isn't sufficient to treat the symptoms of I

With that in mind, and after my consult with my sleep physician yesterday, it may not be very useful for me to keep talking about fatigue and Crohn's in the one sentence, as it would appear that now we are more certain than ever that my fatigue isn't solely Crohn's related.


----------



## Ann Morgan

roy: How did you find out you had IH ?  Did you have a sleep study ?   I was just wondering because I have not slept well in years and I am always tired. I have always wondered if I have sleep apnea. Doesn't the body heal while it is sleeping ?  I took Lunesta for five years previously. I would never take that again. I tried Melatonin a long while back. I now take Seroquel for my mental health issues, and it makes me tired after I take it at bedtime and I fall asleep, but I cannot stay asleep. I wake up at least three times a night.


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## nogutsnoglory

I started up on nuvigil again yesterday. So far don't feel a difference. I'll give it a little trial though. 

I was also debating a sleep study Ann, but wouldn't any sleep study be abnormal considering we are in a lab, and someone is watching us while we have wires on.


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## Ann Morgan

nogutsnoglory:  I have been sleeping in a recliner for over 7 years because of my hip arthritis and problems with both of my shoulders and my back isn't in the best shape either. So, if I DID have a sleep study, I would have to sleep in a recliner. Also, if I had wires and such attached to my head I would not be able to go to the bathroom to pee ( I get up twice a night ). I don't think I could ever do a sleep study unless they accommodated me. My insurance probably wouldn't cover it either ?


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## nogutsnoglory

Yeah didn't even think about running to the bathroom. Maybe that's ok? I don't know about insurance.


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## Dolphin

Ann Morgan  you can ring a bell and they will let you go to the bathroom. It's part of the study Sleep disturbances . I am pretty sure you can call your insurance company and ask them if they will cover it. 

hope this helps


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## Ann Morgan

At the beginning of May of this year I started to become very exhausted. It was something I really noticed. I even marked it down on my DayPlanner. Then the next day I wrote it down again. Then the next day, and the next day. Finally I just quit writing it down. After I started to become exhausted I started to have a major change in my bowels. I went from having diarrhea for 17 years to being constipated. The first two weeks I had one bowel movement a day and it was very firm and I had to push. Then the third week into May I had constipation so bad that I had to push very, very hard and the stool would barely come out of my body. Around that same time I took four Ducolax laxative pills. NOTHING HAPPENED AFTER TAKING THE PILLS !  I really knew something was wrong after that. From the beginning of May to around June 20th I lost 20 pounds. I had a loss of appetite. I was scared to eat, I think. I mean, why eat if it isn't going to come out of your body without pushing so hard you might just have a heart attack doing it. My hemorrhoids were not too happy with this constipation thing either. I finally got in to see a new Gastroenterologist and I had a colonoscopy recently and I am waiting for the biopsy results. But a lot of other things started to happen around the same time. I have arthritis in my neck, well THAT started to really bother me and I could hardly move my neck. I have problems with the shoulders too, and my left shoulder started hurting like hell. Even my hip arthritis was hurting me in the early AM hours each day, it woke me up and I could not get back to sleep. So all these things are connected. The exhaustion, the change in my bowels and the arthritis and joint pain. My feet even hurt, and now I have custom orthotics in my shoes ( I had never had my feet hurt before ). So, since May my health has been really changing. I was always tired anyhow, before the exhaustion started, but my tiredness was something I had been able to manage each day. But the exhaustion that I started to feel in May was something different. I am going to PT for my neck and shoulders. I really want pain medication but my doctors are not the kind to give me any. I sort of want the pain pills because I get grouchy when I am in pain. Some folks get the opiates prescribed to them so easily, but I never do. I was on hydrocodone for three months once and I really liked it. I took prednisone once too and I was in heaven for two weeks. Thanks for listening. Gotta go to bed now. Spending too much time on this computer, no wonder I cannot sleep !


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## StarGirrrrl

I'm so glad I found this group.

I developed mild fatigue, diagnosed as CFS following probably glandular fever just before I was 16 (I am now 27). Despite what happened next I still think it's a separate issue to my subsequent problems.

It was mild and manageable with a little care.

When I was 19 I developed the bowel troubles and the fatigue worsened. Got signed off sick for work. Usual battles on and off to get disability benefits.

Then when I was 22 I got joint problems/pain and again the fatigue worsened.

Now i'm at a point where I can do very little. I actually fantasise of going to bed for a whole week! I hate getting up in the morning for a few hours then having to spend the afternoon asleep.

In June i was found to be suffering from severe anaemia, so I now have that to contend with. I am on iron tablets (also had two transfusions as an emergency it was that bad) which are helping. I am no longer dangerously anaemic I have been downgraded to significant and I am now getting more tests to diagnose my issues on that basis at a new Hospital. I feel they will not give up on me unlike my previous one who declined to try and diagnose me any more, and declined to monitor me, hence the emergency situation!


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## sk12383

nogutsnoglory said:


> Day 2 of Nuvigil update. No energy but more diarrhea. If the diarrhea doesn't stop I may need to stop this trial. Most people seem to respond within a few hours on the drug so the fact that I don't feel anything is upsetting.


Hi all -- I thought I'd share a couple experiences I have had taking medicines and supplements to help fatigue brought on by Crohn's. 

First, I inject of B12 subcutaneously once a week.  Since B12 is absorbed in the ileum, our odds of absorbing it are near compromised.  And since B12 is required for the proper metabolism of ferritin/iron, it's a must.  I'm also currently evaluating whether to do an IV infusion of a whole cocktail of vitamins because consuming them orally just doesn't have the same punch for us.  

Then I have my ferritin and iron storage panels checked every 6 weeks (including iron binding capacity & transferrin) and evaluated by Hematology.  They give me an infusion of Iron dextran as needed to keep levels high enough.  
Many times doctors will look only at your hemoglobin, which may be fine, even though you have almost no ferritin storage.  The result is you have enough red blood cells but they are smaller than they need to be. 

I have taken both Nuvigil and Adderall.  Nuvigil is the new kid on the block and has gotten a lot of attention, but it did not pack the punch of Adderall, which does usually give me a real jump start.  However, Aderall causes rapid dehydration soon after ingestion, so it must be used strategically, preferably after a full meal and 3 huge glasses of water, with fluids being used continuously after.

I don't love the idea of taking Aderall, and I don't take it every day, but on the other hand, I also believe in using every single tool we have at our disposal to improve our quality of life.  I hope these thoughts are helpful.


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## they call it a come back

Essieluv said:


> The fatigue I get from my Crohn's is so crippling. I cannot do much, and when I do finally muster up strength to accomplisgeh something, I have to rest for days after. It is so annoying, especially because people just assume that I am lazy. I am not lazy, I'm just so exhausted!


I feel ya, I just started entyvio about 9 weeks ago, and it has makes me so tired i just dont want to do anything, and i feel too like people judge you and just assume your lazy. My crohns has always made me so tired, but this is worse, it has seemed to take my desire away for just functioning like a somewhat normal person. But I have an awesome doctor who really listens to me, he has had no idea what to do and told me to see what the people on forums like this may suggest, and someone gave me a great lead, to try adhd meds and I found it crazy but after alot of research, and some talk with my doctor he thought it was a good idea to treat my extreme fatigue, and I do mean this is nothing a nap or good night sleep CAN fix, and I a sure you feel the same, as narcolepsy and wanted to start me on provigil, the lowest dose and ajust as we go, but of couse my insurance needed approval because it is so expensive, and the said ritalin is way cheaper, even on the $4 walmart perscription with no insurance. I took ritalin 5mg twice a day, it worked great for a couple of days, but I thought the mg needed to be stronger, but found that adderall is better and had less side effects so long story short I am now on adderall 10mg twice a day, and I feel so much better. It is not like I am jittery and buzzing around like a crazy person , but a normal functioning person who can actually accomplish a days tasks. I have not tried to do anything to crazy, but I am good till around 7:00 at night starting taking around 7am. I have been on this one for about two weeks. So if you are willing to look outside the box one of these meds might be a good option to try.
provigil 200 mg
ritalin 5mg or 10mg 2 times a day 
adderall 5mg or 10mg 2 rimes a day
      The adderall and ritalin you have to start with a lower dose and adjust to what you need



I hope this helps, sorry to go on for so long just wanted not to leave out anything


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## they call it a come back

tots said:


> I have been out of remission for about three years. I have had varying degrees of symptoms in that time. Fatigue has been a constant though. I work retail- its hard physical work. My husband is not so patient, his answer is don't work so hard at work so I can get all "my" stuff done at home! Easy for him to say! I just do the best I can.
> 
> I have had my Vit D and B checked- I take 50,000 of Vit D a day to get my number from 18 to 89. MY B is normal at 450, Thyroid normal. I still feel like I am dragging my way through the day.
> I would dearly love to give up CD so I could feel "normal"!
> 
> Any suggestions? Anything I may be over looking?
> 
> 
> 
> Lauren


Dont think I am crazy but provigil, which is used for narcolepsy a lower dose of course, but it s expensive, so ahhd meds are about the same when you dont have adhd it has the opposite effect working as a stimlant, ritalin 5mg twice daily was my first dosage, but didnt work so well after about a week so I found that adderall is stronger an works quicker, and I love it, I am not jittery and buzzing around but I feel like a normal functioning person. I started with 5mg twice a day and after a week moved up to 10mg twice a day, this seems to do the trick, you can go higher, but I dont want t feel high just normal. So here you go my suggestion, I hope this helps, it helped me


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## nogutsnoglory

I got a b12 shot the other day and wonder if dr will prescribe for me to do them at home more often.


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## Ann Morgan

nogutsnoglory said:


> I got a b12 shot the other day and wonder if dr will prescribe for me to do them at home more often.


A few years ago I had Optic Neuritis in my left eye. I started with Solumedrol for three days ( IV ) and then I took Prednisone for two weeks. My eye improved significantly after that. My Specialist Doctor started me on B12 injections after that. I did them at home, I believe, once a month. I did not continue to see that doctor and then I also no longer took the B12 shots.

A few years later my B12 was really low. So my Primary Care Physician sent me to a Hematologist. I went to the Hematology office one a month for year to get the B12 shots there. I still don't understand why I could not do the shots myself at home. Why go to a Hematologist !

Then I had no insurance for a year. So, no B12 shots then.

Well, I got a new Primary Care Physician recently and he checked my B12 and said I needed to start taking B12 again. I told him that in the past I had given myself the shots at home. For some reason I contacted my Pharmacy and they said that the B12 shot medicine was going to no longer be available ? So, now I am taking over the counter B12 vitamins from the drugstore, per my Primary Care Physician. I still think the shots are more effective and I think I will call my Pharmacy again to see what is going on with the B12 medicine.

I believe I have been B12 deficient for quite a long time and I should have been continuously taking it during the past few years. Well, I will see if the over the counter B12 vitamin pills really work the next time I get my blood checked. My Primary Care Physician is monitoring my B12 levels.:Flower:


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## Ann Morgan

StarGirrrrl said:


> I'm so glad I found this group.
> In June i was found to be suffering from severe anaemia, so I now have that to contend with. I am on iron tablets (also had two transfusions as an emergency it was that bad) which are helping. I am no longer dangerously anaemic I have been downgraded to significant and I am now getting more tests to diagnose my issues on that basis at a new Hospital.
> 
> 
> Welcome StarGirrrrl. I am a new member here too and I have learned so much since I have joined.
> 
> I have iron deficient anemia also and I have had it for a while. I don't know exactly when I was diagnosed with it. In 2009 I had a routine blood test at my current Primary Care Physicians office. A few days later they called me at work and told me that I needed to go to the hospital as soon as possible to get a blood transfusion because my iron levels were very, very low. Inside of my head I was thinking "SAY WHAT ? ". After work I had to pick up my vehicle at the garage, then I had to go home to feed my cats. After that I drove to the hospital. I was admitted overnight and I was given two units of blood. And then after that was all done I started taking two iron pills every single day for the past five years. I have a brand new Primary Care Physician now and he gave me a blood test when I first saw him. He told me that I no longer needed to take my iron pills every day. I was a bit hesitant to stop taking the pills, but I trust him so I quit the iron pills. My iron had better not get low again because he decided to take me off of the pills !  It will make me mad if I have to have a transfusion again.
> 
> I am also taking a B12 vitamin and a D3 vitamin.
> 
> :bigwave:


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## Polaris

Does anyone else feel guilt over their fatigue? I've worked about 4 days the past 2 weeks and I'm feeling so guilty even though my boss is understanding. 

I also can't remember what it feels like to feel well, to have energy. How do people get up, get ready, go to work, etc? I used to be one of those people!


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## Ann Morgan

dear stelarjess: I totally understand where you are coming from. I used to have a job 5 1/2 years ago. I worked at a bank for 24 years. I could meet deadlines, I could multitask, I could handle millions of dollars every day, I worked well with others, I cross-trained other employees, I knew how to do almost everything in the department I worked in. I could think and concentrate and focus and had a great memory. Now that is all gone. Between my mental illness issues and all of my physical health issues I am now on Disability. Right now there is no way I could get up at 5am every morning and work an 8 hour day. If I leave my apartment for a few hours to go to doctors appointments, classes, or run errands I feel like I have ran a million mile marathon !  I will feel physically and mentally empty. I am 54 years old now. 

I cannot believe that when I was about 33 years old I was a vegetarian, I rode my bicycle about 15 miles every weekend, I walked 20 minutes every morning before work and I lost about 50 pounds. Wow, I actually felt good and I had energy then. What the heck happened ? I wish I was that person again.


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## Polaris

Ann Morgan said:


> dear stelarjess: I totally understand where you are coming from. I used to have a job 5 1/2 years ago. I worked at a bank for 24 years. I could meet deadlines, I could multitask, I could handle millions of dollars every day, I worked well with others, I cross-trained other employees, I knew how to do almost everything in the department I worked in. I could think and concentrate and focus and had a great memory. Now that is all gone. Between my mental illness issues and all of my physical health issues I am now on Disability. Right now there is no way I could get up at 5am every morning and work an 8 hour day. If I leave my apartment for a few hours to go to doctors appointments, classes, or run errands I feel like I have ran a million mile marathon !  I will feel physically and mentally empty. I am 54 years old now.
> 
> I cannot believe that when I was about 33 years old I was a vegetarian, I rode my bicycle about 15 miles every weekend, I walked 20 minutes every morning before work and I lost about 50 pounds. Wow, I actually felt good and I had energy then. What the heck happened ? I wish I was that person again.


Big hugs to you. I wish I was the person I used to be, too. The highlight of my day is taking a shower, changing into fresh pajamas, and getting back in bed.


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## IofNewt

stelarjess said:


> I also can't remember what it feels like to feel well, to have energy. How do people get up, get ready, go to work, etc? I used to be one of those people!


I vaguely recall what that feels like... which is odd since I don't generally remember much.

Once you kind of accept the situation, it's as if you go on autopilot. That's how I manage anyway.. it's habit now. Half the time I have a really hard time getting my day done and I end up sleeping like a stoned person, but I do it. Other than the habit feeling, I have no clue how I manage.


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## Ann Morgan

I took Asacol a while back, and then was changed to Lialda, which I am taking now. Plus I have been taking Questran for several years. These are the only medications I have been prescribed for my Ulcerative Colitis. A lot of folks here have been prescribed quite a few medications, but I have not. I am tired today as always. I think I woke up at 4am and never got back to sleep. Bummer. I rarely sleep more than 2-3 hours in a row. I am up at least twice every night.


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## nogutsnoglory

Stopping the nuvigil for now. Did nothing for me. Maybe the dr will want to try again at a higher dose. 

Interestingly I got a b12 shot and felt pretty good for one day a few days after but that didn't last. I want to see if they will give me several.


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## Madmouse

being exhausted all the time sucks - but at least the cats get it...
http://www.buzzfeed.com/kaelintully/z-z-z-z-z-z-z-z-z-z#102f5c6


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## they call it a come back

Madmouse said:


> being exhausted all the time sucks - but at least the cats get it...
> http://www.buzzfeed.com/kaelintully/z-z-z-z-z-z-z-z-z-z#102f5c6


Too funny my cat fully understands too, :hang:


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## hamster139

stelarjess said:


> Does anyone else feel guilt over their fatigue? I've worked about 4 days the past 2 weeks and I'm feeling so guilty even though my boss is understanding.
> 
> I also can't remember what it feels like to feel well, to have energy. How do people get up, get ready, go to work, etc? I used to be one of those people!


Yes, more than you can imagine.  I feel guilty, especially towards my family.  We had so much planned... and I am the constant wet blanket.   We did nothing over the summer break.  I can never go anywhere with them... I don't like missing out on everything, but I feel even worse if I force others to miss out because of me.


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## hamster139

Ann Morgan said:


> At the beginning of May of this year I started to become very exhausted. It was something I really noticed. I even marked it down on my DayPlanner. Then the next day I wrote it down again. Then the next day, and the next day. Finally I just quit writing it down. After I started to become exhausted I started to have a major change in my bowels. I went from having diarrhea for 17 years to being constipated. The first two weeks I had one bowel movement a day and it was very firm and I had to push. Then the third week into May I had constipation so bad that I had to push very, very hard and the stool would barely come out of my body. Around that same time I took four Ducolax laxative pills. NOTHING HAPPENED AFTER TAKING THE PILLS !  I really knew something was wrong after that. From the beginning of May to around June 20th I lost 20 pounds. I had a loss of appetite. I was scared to eat, I think. I mean, why eat if it isn't going to come out of your body without pushing so hard you might just have a heart attack doing it. My hemorrhoids were not too happy with this constipation thing either. I finally got in to see a new Gastroenterologist and I had a colonoscopy recently and I am waiting for the biopsy results. But a lot of other things started to happen around the same time. I have arthritis in my neck, well THAT started to really bother me and I could hardly move my neck. I have problems with the shoulders too, and my left shoulder started hurting like hell. Even my hip arthritis was hurting me in the early AM hours each day, it woke me up and I could not get back to sleep. So all these things are connected. The exhaustion, the change in my bowels and the arthritis and joint pain. My feet even hurt, and now I have custom orthotics in my shoes ( I had never had my feet hurt before ). So, since May my health has been really changing. I was always tired anyhow, before the exhaustion started, but my tiredness was something I had been able to manage each day. But the exhaustion that I started to feel in May was something different. I am going to PT for my neck and shoulders. I really want pain medication but my doctors are not the kind to give me any. I sort of want the pain pills because I get grouchy when I am in pain. Some folks get the opiates prescribed to them so easily, but I never do. I was on hydrocodone for three months once and I really liked it. I took prednisone once too and I was in heaven for two weeks. Thanks for listening. Gotta go to bed now. Spending too much time on this computer, no wonder I cannot sleep !



This sounds identical, EXACTLY identical to me.  I also had moderate fatigue... which changed to extreme/severe fatigue when I had my BM change from diarrhea to constipation.  It switched over completely about 10 months ago.  I have had to quit nearly everything since then.

Again, I definitely had fatigue before... its gone on for 10 years or so, but now... after the BM change, everything is impossible.  Even showering.  I walk in slow motion now.  I can't go shopping or do much of anything.  Standing is a big no no for me.


----------



## hamster139

I noticed a few posts above about sleep studies.  I too had one done.  It didnt help me, since they basically just said... you have problems sleeping and staying asleep, and we dont know why.

I have since found out (on my own) that the Cronh's drove me to become a vampire, and that has caused my internal clock to go a bit crazy.

I've since done light therapy in the morning, and I have found it much easier to sleep at night. This won't fix the fatigue, not even close, but its one more tool... a really nice way of ensuring that I feel sleepy at the right time.   If I do it consistently... I can go from a 1 (on an energy scale of 10) to a 2.

If others here have similar issues with odd sleeping behavior, I would suggest trying out the light therapy.  Again, it won't cure the fatigue... but it makes it more manageable.


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## girlygirl

I wish more people understood Crohn's and the fatigue associated with it, and all the other manifestations it brings... like arthritis, pain, insomnia, vitamin deficiency, etc... I feel like a let down sometimes because the ones around me just don't understand. There's no faking it. And putting your best face forward all the time just doesn't seem good enough at times. If they only knew how bad you really felt. Hugs to all!


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## Ann Morgan

girlygirl: Your post mentioned thyroid nodules. Is that part of Crohn's ?  I have three nodules on my thyroid and they have been there for a while. One of the nodules is growing, so I had a recently biopsy. The biopsy did not show anything bad. I am going to have regular ultra-sounds to monitor my nodules. I like my Endocrinologist. I just started taking thyroid medication ( Levothyroxine ).


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## D Bergy

Here is a resource for CFS.  I came across it on a Lyme site.  It's quite extensive but maybe it can help somebody. 

https://sites.google.com/site/cfstestingandtreatmentroadmap/

Dan


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## laura75

Hi all
This is my first post here, I've been having this flare up for approx 9 months now. Due to start my first infliximab infusion next week ... don't know what to expect but willing to try anything at this point. Above all the other symptoms of crohns and many side effects of medication, the fatigue is crippling me. I can't get through a day without having to go back to bed at least once. The reaction of some  people has upset me today, people who I consider good friends questioning why I've been napping and commenting I still look half asleep. How do others handle their fatigue and how can I make others understand that  I have no control over it?? Feeling so fed up right now and judged because of my illness.:sign0144:


----------



## DJW

Hi and welcome. 

I've just started Remicade. I too hope my energy comes back. My progress is measured in months and years. 

Hope you start feeling better soon.


----------



## hamster139

D Bergy said:


> Here is a resource for CFS.  I came across it on a Lyme site.  It's quite extensive but maybe it can help somebody.
> 
> https://sites.google.com/site/cfstestingandtreatmentroadmap/
> 
> Dan



Nice site.   I think its important for everyone here to at least look through this.  It is possible there are a minority here that may have compound issues... Crohn's and something else.


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## D Bergy

I have personally only attempted to treat three diseases.  Crohns, which I have.  Lyme disease, which my wife has, and Hidradenitis Superrativa, which one of my sons has.  

I am in remission, my wife is cured of some infections and Lyme is dramatically reduced to the point she has a normal life.  

I have not found the cause of the HS yet, but have found that he is heavily infected with Herpes Zoster, the chicken pox virus, in his intestinal tract.   May or may not be related to his disease. Too early to tell.  

From this I have gathered that many diseases are complicated.  My wife's Lyme disease is a complex of at least five pathogens.  My Crohns seems to be a complex of at least four pathogens, possibly five or maybe even more. 

That's just my interpretation of the results so far.  Of course I could be wrong. 

If the disease is not easily treated or cured, it is likely a complex of pathogens.  

Dan


----------



## Kit

Hi all.  I just found this thread.  I would call myself in remission, but fatigue is a huge issue for me.  There is nothing medical to explain it that I know of, except maybe medication, but my physical and mental capacity is about 2-4 hours depending on what I am doing.    If I do a lot one day I need to rest the next.  I am currently not working.  Thanks for letting me talk and know that I am not alone.


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## Laughngirl

:bigwave:  Kit, We all feel ya when it comes to fatigue!  Hang in there - I wish I had better advice, but just wanted to send a note of support.


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## nogutsnoglory

Kit said:


> Hi all.  I just found this thread.  I would call myself in remission, but fatigue is a huge issue for me.  There is nothing medical to explain it that I know of, except maybe medication, but my physical and mental capacity is about 2-4 hours depending on what I am doing.    If I do a lot one day I need to rest the next.  I am currently not working.  Thanks for letting me talk and know that I am not alone.


It sounds like you suffer from post extertional  malaise such is a strong sign of chronic fatigue syndrome/myalgic encephalitis (ME/CFS) usually blood work comes back normal but there are key symptoms for a diagnosis.


----------



## Kit

nogutsnoglory said:


> It sounds like you suffer from post extertional  malaise such is a strong sign of chronic fatigue syndrome/myalgic encephalitis (ME/CFS) usually blood work comes back normal but there are key symptoms for a diagnosis.


Thanks for the info NGNG.  Do you have a good place to go for information, or just Google it?  I have heard of CFS, but not ME.  Thanks


----------



## nogutsnoglory

ME is just becoming the more politically correct term for CFS because nobody takes chronic fatigue seriously, it sounds lazy or hokey when in fact it can be completely disabling. Phoenix Rising is a great resource http://phoenixrising.me/mecfs-basics/an-overview-of-chronic-fatigue-syndrome-mecfs-2


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## Madmouse

Hi guys, hope you are all well. If you have been diagnosed with IBD, then you cannot be diagnosed with CFS/ME is it is a diagnosis of exclusion and the symptoms must not be explained by any other condition (which it can be with IBD) - this is from UK practice and personal experience. Not trying to be discouraging and many of the techniques for CFS/ME might be of help (my brother suggests massage for muscle pain, and careful planning of activities but unfortunately when its at its worst, he has found nothing that can help the physical symptoms), but I don't want you to be chasing a false diagnosis. However, because there is no test for it, it may be that the diagnostic criteria vary across the world, so I stand very much corrected if others have a different experience. Please speak to your doctor about mental health support for ongoing fatigue, because depression is very common and if treated (through talking therapy (such as counselling and CBT) and medication) can be managed, and untreated can make the fatigue worse. Remember, mental health problems are NOT a sign of weakness, and are as important as physical problems.
Hope you guys and gals are managing ok. hugs x


----------



## nogutsnoglory

Madmouse you are incorrect, many with ME suffer multiple health prob. Yes it's a diagnosis of exclusion but just because you have a condition like crohns doesn't mean you can't have another condition. That's like saying oh you have crohns so you can't have GERD. If your tests come back normal for deficiencies and your inflammation markers are low, crohns cannot explain bedridden fatigue. That's where a diagnosis like ME can come into play. Also, depression does manifest in physical symptoms but most with chronic illness like ME and crohns are depressed because of their condition. The depression comes after the debilitating aspect of illness. The medical community has a lot to learn, just because they can't explain things  doesn't mean the person is depressed or crazy. Look at IBS, it's real but they don't know why.


----------



## Madmouse

nogutsnoglory, that is not what I was saying, and I am sorry it has come across in a way I didnt mean it. The diagnostic criteria for CFS/ME in the UK includes that if you have an inflammatory condition (even if it is in remission) you cannot get a CFS/ME diagnosis. I am not saying that people are not having symptoms and I certainly know you can have multiple conditions - I have never said otherwise. I only commented because I believe the aim of this forum is to share our knowledge and experience (mine being from personal experience with the condition, speaking to experts in more than one field about this very subject and my own professional education) and I have found it frustrating to be led down a path that is not accurate (such as the IBS issues many of us face). I acknowledge again that this may be different in different countries, and welcome any alternative knowledge and experience. 
Edit - I have just found the following information and wanted to add it in. I have been doing from further research into the topic of CFS/ME as it would appear that practice (including diagnosis) differs dependent on where you live. The Centre for Disease Control website states "Be aware that a patient can have CFS as well as a co-existing illness that cause fatigue or other CFS symptoms – for example, depression or low blood pressure. If treatment of those other illnesses does not resolve the symptoms, then the person can still have CFS." which is a very different stance from UK practice and may explain why we have differing experiences. I never intended to cause offence, and I apologise again if I have. As I said, my experience is from a UK perspective and it is interesting to see not only how things vary, but how they can be contradictory depending upon country of practice (and in some areas, region or clinician).
The medical profession do have a lot to learn, and its an art not a science. There is a lot of funding in the UK (and I am sure elsewhere) into finding the cause of fatigue in IBD, especially in those where no physiological cause can be identified. For many, myself included, it is an ongoing daily battle and hopefully we will get some answers and support soon.
With regards to depression, I am aware it causes physical symptoms and that it is often linked (or rooted in) to other ongoing chronic conditions. I mentioned it because I was talking to friend with IBD who is now being treated for depression, but said they felt 'ashamed and weak minded'. I am not saying the root of the problem is depression (I have had to battle with my own GP who refused to explore any other avenues because she was convinced I was depressed), but I wanted to make sure people don't feel unable to discuss it, or feel like my friend did. I am sorry, I should have made it a separate point and made it more clearly.


----------



## nogutsnoglory

Thanks for clarifying. It's of course sensitive since so many of us chronic sufferers often get dismissed since our disabilities are invisible. You are absolutely right that ME/CFS criteria varies by country. Here in the US we take it a lot less seriously sadly. But I see a world renowned CFS doctor who has diagnosed me so I suppose depending on where you are and the philosophy one can be given different info.


----------



## nogutsnoglory

Done a couple of b12  injections now and still don't really feel any different. Anyone else try the injection route with success? How long? How much? 

I'm on 1,000 ml of cyanocobalamin weekly.


----------



## Ann Morgan

laura75 said:


> Hi all
> This is my first post here, I've been having this flare up for approx 9 months now. Due to start my first infliximab infusion next week ... don't know what to expect but willing to try anything at this point. Above all the other symptoms of crohns and many side effects of medication, the fatigue is crippling me. I can't get through a day without having to go back to bed at least once. The reaction of some  people has upset me today, people who I consider good friends questioning why I've been napping and commenting I still look half asleep. How do others handle their fatigue and how can I make others understand that  I have no control over it?? Feeling so fed up right now and judged because of my illness.:sign0144:


I will use this as my example. I suffer from Major Depressive Disorder. I have tried over and over again to educate my sister about my depression.....the symptoms, my feelings, the support groups, the doctors, all of my medications. I just want her to "get it". Well, after several months of trying to get her to "get it" I discovered that I was wasting all of my physical and mental energy on my quest for understanding and I was getting nowhere. Instead of using my energy to improve my health, mentally and physically, I was wasting my energy on trying to communicate to her about everything that was going on with me. Finally I just quit trying. I need all of the little energy I DO have to help myself stay healthy. I am tired all of the time too. I have been tired for years. I get all sorts of advice from every one of my doctors about what I can do about my fatigue. None of it works. I think my Endocrinologist is waiting for me to say that " I feel good " during each appointment that I have with her. But my answer is always the same " TIRED " !!!!!!!!!!


----------



## Ann Morgan

Kit said:


> Hi all.  I just found this thread.  I would call myself in remission, but fatigue is a huge issue for me.  There is nothing medical to explain it that I know of, except maybe medication, but my physical and mental capacity is about 2-4 hours depending on what I am doing.    If I do a lot one day I need to rest the next.  I am currently not working.  Thanks for letting me talk and know that I am not alone.


My mental and physical energy is only good for a few hours 

at a time during the day. "Normal" people can multi-task

by holding a job, raising kids, going to college all at the same time.

If I go to a doctors appointment, then go to the grocery store,

and then maybe pick up a prescription at the Pharmacy all

on the same day that is pretty much all I feel that I can do

that day.  Sometimes I go to workshops, support groups,

or "classes" and just driving there and participating and then

driving back home is enough for one day for me. I have

participated in two "field trips" at one of the facilities I 

attend and the "field trips" each lasted five hours !  I was 

so fatigued after those five hours.  Thanks for listening. :ysmile:


----------



## Ann Morgan

nogutsnoglory said:


> ME is just becoming the more politically correct term for CFS because nobody takes chronic fatigue seriously, it sounds lazy or hokey when in fact it can be completely disabling. Phoenix Rising is a great resource http://phoenixrising.me/mecfs-basics/an-overview-of-chronic-fatigue-syndrome-mecfs-2


I agree, nobody takes chronic fatigue syndrome seriously.
People just think you are just "tired". It is way more
than being just "tired". I don't think that this is something
that can easily be "cured" by just a good nights sleep,
a healthy meal, and some robust exercise. Do you think 
CFS could be environmental ?  I have not read up on CFS yet.
There are so many toxins in the air and the water and in our food,
how can those toxins NOT affect us ?  There are so many
inflammatory and auto-immune diseases out there now.
My sister and I have way more illnesses than our own parents had.
I am 54 and she is almost 64.

Thanks for listening.
( I have not been diagnosed with CFS).


----------



## Ann Morgan

Madmouse said:


> Hi guys, hope you are all well. If you have been diagnosed with IBD, then you cannot be diagnosed with CFS/ME is it is a diagnosis of exclusion and the symptoms must not be explained by any other condition (which it can be with IBD) - this is from UK practice and personal experience. Not trying to be discouraging and many of the techniques for CFS/ME might be of help (my brother suggests massage for muscle pain, and careful planning of activities but unfortunately when its at its worst, he has found nothing that can help the physical symptoms), but I don't want you to be chasing a false diagnosis. However, because there is no test for it, it may be that the diagnostic criteria vary across the world, so I stand very much corrected if others have a different experience. Please speak to your doctor about mental health support for ongoing fatigue, because depression is very common and if treated (through talking therapy (such as counselling and CBT) and medication) can be managed, and untreated can make the fatigue worse. Remember, mental health problems are NOT a sign of weakness, and are as important as physical problems.
> Hope you guys and gals are managing ok. hugs x


I guess I have a "double whammy" on me.............
I suffer from IBD and many other physical illnesses AND
from depression and anxiety. Haven't slept well
for years. Tired all of the time.


----------



## Ann Morgan

nogutsnoglory said:


> Madmouse you are incorrect, many with ME suffer multiple health prob. Yes it's a diagnosis of exclusion but just because you have a condition like crohns doesn't mean you can't have another condition. That's like saying oh you have crohns so you can't have GERD. If your tests come back normal for deficiencies and your inflammation markers are low, crohns cannot explain bedridden fatigue. That's where a diagnosis like ME can come into play. Also, depression does manifest in physical symptoms but most with chronic illness like ME and crohns are depressed because of their condition. The depression comes after the debilitating aspect of illness. The medical community has a lot to learn, just because they can't explain things  doesn't mean the person is depressed or crazy. Look at IBS, it's real but they don't know why.


Yeah, I agree, the medical community has a lot to learn. Sometimes I think that WE know more than our doctors !
Hey, hasn't aspirin been around for over a hundred years and they 
STILL don't know how that works ?


----------



## Kit

@ann morgan:  Thank you so much for posting and letting me know I am not alone.  Sometimes I feel like a wimp and lazy.  Sigh.  Fortunately my husband understands my limitations and can plan accordingly.  He has been a fantastic caretaker!


----------



## wellen1981

Hi i'm wellen and i am extremely fatigued...

This reads like an AA meeting and i really dont know if i should actually be here as i am completely knackered all the time and mentally i have brain-fog as thick as pea-soup. I cant say that it is at exactly the same level as there are times when i just feel weak but the mental side seems to take a temp break for an hour or 2 and i can try to focus on tasks but it never stays like this for long and then its back to brainfog.

I dont think i can 100% say i should join this group and i'm not even totally convinced i have exactly this issue - i feel like crohn's coupled with the fact i have reduced the types of food i consume to try and work out what is safe to eat has left my body lacking some key elements of nutrition but then again, we all know with IBD even if you put the correct food types in our body often is worse for it!

Sometimes i can be sat in a total stupor, like a zombie kinda doped... is that what it's like for others in here?


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## Twbuto

Just a quick post on fatigue. This can be dehabilitating, as you know. In my circumstance sodium replenishment is like a B12 shot. A bag of chips, small bag, or Gatorade or even a quick palm of Sea Salt helps. I do not have an issue with high blood pressure , actually it's always on the low side.  I'm anemic as well, so I always think iron depletion.  But a quick salt hit is my band aide.


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## Kit

@TWbuto thanks for the information.  Do you think you get dehydrated easily and that is some of the cause of fatigue?  
@Wellen Welcome and there are no guidelines to call yourself fatigued, we just share our issues with lack of energy, physical and brain.   I hope this group can support and help you.  Sometimes it is just nice to vent!  As for brain fog, yes I get it too, but I think I am learning my limits and rest when I need to.  I used to get that at work, something I have done tons of times I couldn't think of what I needed to do next.  I am best in the morning, but only for a limited time.  I can get limited physically as well.  Hang in there and try to find what works for you and your body.


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## Ann Morgan

Hi wellen: I suffer from Major Depressive Disorder and Anxiety. I had a very bad breakdown in 2007. My brain has never been the same since. I know for a fact that my brain will never be able to operate at the same level as it did before the breakdown. I just cannot get all of my old abilities back. I have a lot of problems with focus, concentration and memory. I just recently finished reading a book, the first book I have read in three years because I just cannot focus or concentrate enough like I used to. My anxiety keeps me from going places and doing things, even going to the grocery store. I cannot even drive more than ten miles from my apartment. There are so many foods that I cannot eat. Right now I have a very limited diet. I have lost my appetite and I have lost my taste for most foods. I have lost 30 pounds. Keep in touch here, there are a lot of folks here who are very educated about Crohn's and Ulcerative Colitis and they should be able to help you.:rosette1:


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## Madmouse

Hello everyone - I hope everyone is feeling a bit better. I just want to write a quick personal update on my own fatigue issues in the hope someone else might find it helpful.

Fatigue stinks, its a real pain in the backside and can be completely debilitating, taking over your entire life, dominating every minute of every day and prevents anywhere near normal function. This is tough, and I found myself desparing and heading rapidly towards a dark place - the fatigue seemed total and never ending, requiring hours asleep and when awake I was totally non functional. Even small improvements after months seemed of little value as I still felt wiped out and not able to live a normal life. During this whole time there was nothing anyone could do to help - my bloods were ok and my GI symptoms were relatively controlled. HOWEVER, things did slowly start to improve, and I was able to push myself to undertake small amounts of activity, still feeling unwell, achey, brain foggy and fatigued (that beyond tired feeling) but on reflection - better. I am now at a point where I am trying to return to work - its not easy, I find myself relying on caffeine and sugar some days, but it is now at a point where I have SOME normality back. Its not great, but it is something.

As I said, I wanted to post this in the hope it might help someone - not because I have any magic tips or cure (I wish) but to give them some hope. The very worst of my fatigue lasted for months and I was essentially bed bound - it was relentless and I simply could see no end EVER no matter how hard I tried. I hope that putting my experience that it can get better might give someone the hope that I didn't have, and acts as a reminder to me that things are better than they were, and this gives me the strength to fight each day.

Have a lovely day everybody x


----------



## Ann Morgan

Madmouse: Thank you for sharing your story. 

I have been "tired" for a number of years. I have trouble sleeping and I have been sleeping in a recliner for 8 years because of arthritis in my hips ( and neck and shoulders ). I have a lot of physical health issues ( other than my Ulcerative Colitis) and I have mental health problems too. Starting in May of this year I started to feel "exhausted" and I had changes in my Ulcerative Colitis symptoms. I now have been having a terrible time sleeping and I wake up in the early morning hour and I have what I think is hip pain. So now I am "fatigued". The kind of fatigue, like you said, takes over your life. Today I was thinking that I just don't want to do anything anymore, I just want to stay home and rest ( I'm too tired to go anywhere ). I have been overwhelmed with many doctors visits this year. But I have been attending, regularly, workshops/classes/support groups. I don't even feel like I have the energy, right now, to continue these activities. And I need these activities for socialization so that I don't become isolated again. I am in the "brain fog" stage now. I am hoping that this current extreme fatigue is a somewhat temporary situation and that with time it will improve. I know that depression can make a person tired and hormone problems too. I am taking a very important workshop every Thursday evenings and it means a lot to me, I cannot miss these classes at a local Women's Center here. 

Since I suffer from anxiety, I would not recommend drinking coffee and eating sugar. These are stimulants and can cause anxiety. I gave up coffee and candy in May. But I still can't stay away from sugary cereals. I don't miss the coffee. But I don't seem to be able to live without the sugar. And since my Ulcerative Colitis symptom changes in May, I don't have much of an appetite for a variety of foods at all. I have lost 30 pounds in the past 6 months.

I have found myself only being able to go out every other day, and then on the middle days I stay home. I have to get out of my apartment. The weather is good. I started to read a book and I would like to do that every day. I have a vehicle, so I do have transportation of my own to go places. Yesterday I was "busy". I had a Catscan and I had to lift my arms up during the Catscan. I have arthritis in my shoulders. It was very painful to lift my arms up, even a little bit !  So, today the right side of my neck hurts a lot because I have bad arthritis in the right shoulder. Today was a wasted day at home. By 5pm I shut all of my lights off and took a two hour nap in my recliner. I must feel better tomorrow because my sister is visiting from out of town for 2-3 weeks and I would like to see her as many times as I can while she is here. We got together on this past Saturday and we had bagels and a nice two hour chat.

Thanks for listening.


----------



## AnimalLover

Hi! First time here. 
Decided I would talk to people who are in the same boat instead of those who don't understand because they don't have Crohn's.
Was diagnosed in 1997 and have only had 1 major flare up about 7 years ago. Disease is pretty well managed with Asacol. I still have pain and diarrhea at times when I eat something but overall my situation has been pretty mild. Have recently developed acid reflux and have had a couple bouts with kidney stones as well.
My biggest issue is the fatigue!!! I get so frustrated and depressed because I am so incredibly tired all of the time. I used to have fun be involved in family and friends. Now I have no desire to go out and do anything because my energy level is nil. All I want to do is sleep. There are days when it is all I can do to stay awake at work as well as driving to and from. Caffeine doesn't work, B12 doesn't work, energy bars don't work, energy drinks just make me jittery. I try different exercise options but after 2-3 weeks I don't feel any better and by then I am bored with the routine so I stop.
I am so tired of feeling this way. I want to go out and have fun and enjoy life again! Anybody have advice????? Please help.


----------



## Kit

@annimal lover-- I am so sorry!  We know how you feel and i wish I had some good answers for you.  I am impressed you can still work.  I finally had to leave my job.  I was only working 4 hours and I couldn't cut it.  My job was physical and mental so it took a toll on me.  I am blessed to be able to not have to work for now.  I don't have any wonderful solutions, except I have learned to pace myself and get at least 9 hours of sleep at night.  If I do something one day, then I stay home and rest the next.  I don't go out late at night except on rare occasions.  I have been pushing that some, but it always let me know that I overdid it.  As my husband says balance.


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## AnimalLover

It's so good to read through these stories and hear my story!  I was starting to think that I was going crazy because nobody had an answer or even acted like they cared. It does make sense that it could be caused because our immune system is constantly fighting itself. It terrifies me to think of what I am going to be like when I am older. Right now I am 44 and feel like I'm moving at the pace of a 90 year old. I could see where depression would come into play. There are days where I am in tears because I am so tired of being this way.


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## IofNewt

It's a major pain the the ass, for sure. Even when I start to feel better, I am still so tired all the time.

I went and shopped for boots tonight for me and my BF, but I was so tired I didn't get to do my other messages.

Last night I went to bed at 7:00p.m. I had a colonoscopy earlier, so that may have played a part (though I was given the bare minimum of meds)... but now it's 8:17 p.m. and i am ready for bed again.


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## AnimalLover

I sleep in on the weekends which you would think would help but about 3 hours after I get up I am ready for a nap. 
I never go out with friends any more. I think they have stopped asking me because I have turned them down so many times.


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## lisakuney

AnimalLover said:


> I sleep in on the weekends which you would think would help but about 3 hours after I get up I am ready for a nap.
> I never go out with friends any more. I think they have stopped asking me because I have turned them down so many times.


It's how chronic illness is so isolating. Most people give up on us, and we stop putting ourselves out there because we feel bad about letting people down so often. It all just kind of dries up and peters out.


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## hamster139

AnimalLover said:


> I sleep in on the weekends which you would think would help but about 3 hours after I get up I am ready for a nap.
> I never go out with friends any more. I think they have stopped asking me because I have turned them down so many times.


That's me, on both accounts.  The sleeping-in just doesnt make me feel well-rested at all.  And I pretty much lost all my friends, and am spiraling towards becoming a recluse.   But at least I have my family to keep me sane, but I feel like I am the constant wet blanket in their lives.


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## hamster139

AnimalLover said:


> It's so good to read through these stories and hear my story!  I was starting to think that I was going crazy because nobody had an answer or even acted like they cared. It does make sense that it could be caused because our immune system is constantly fighting itself. It terrifies me to think of what I am going to be like when I am older. Right now I am 44 and feel like I'm moving at the pace of a 90 year old. I could see where depression would come into play. There are days where I am in tears because I am so tired of being this way.


I was thinking the same thing.  I move like a sloth now...and it keeps getting worse every year.  How am I going to manage when I am 80?  I guess I will be a sloth stuck in molasses.


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## hamster139

AnimalLover said:


> Hi! First time here.
> Decided I would talk to people who are in the same boat instead of those who don't understand because they don't have Crohn's.
> Was diagnosed in 1997 and have only had 1 major flare up about 7 years ago. Disease is pretty well managed with Asacol. I still have pain and diarrhea at times when I eat something but overall my situation has been pretty mild. Have recently developed acid reflux and have had a couple bouts with kidney stones as well.
> My biggest issue is the fatigue!!! I get so frustrated and depressed because I am so incredibly tired all of the time. I used to have fun be involved in family and friends. Now I have no desire to go out and do anything because my energy level is nil. All I want to do is sleep. There are days when it is all I can do to stay awake at work as well as driving to and from. Caffeine doesn't work, B12 doesn't work, energy bars don't work, energy drinks just make me jittery. I try different exercise options but after 2-3 weeks I don't feel any better and by then I am bored with the routine so I stop.
> I am so tired of feeling this way. I want to go out and have fun and enjoy life again! Anybody have advice????? Please help.



Since you sound identical to me in every way (I literally think I am reading my old posts when I read yours)... I will give you a few little bitty tips that have helped me stay sane.  I hope they can help you a little bit.

1) MORNING IS KEY!!!!!  do NOT use your energy then!!!  If you do, you will be almost useless by 11:00.   Basically economize everything in the morning.  Don't stand at all.  Don't move unless absolutely necessary.  If you have to prepare breakfast, make it minimal or pre-prepared.

2) If you become an indoor vampire, use light therapy at around 9ish.   Light will boost your mood slightly, and will set your internal clock so you will at least be able to predict your ups and downs.

3) Consider cutting back on work.  I know this may not be an option for you, but if it is at all possible... do it.

4) Consider a prescription focusing stimulant, NOT with the belief that it will give you energy, but that it will keep you from becoming a zombie.  I use Vyvanse, at around 9:00 am, but I still minimize energy when I am on it.  Also drink tons of water, since stimulants can cause dehydration, which can potentially make Crohn's symptoms worse.

Other than those 4... I also am trying desperately to battle constipation.   For me, constipation signals the worst possible fatigue... as well as a constant sick feeling.  At times, I literally have to put ice bags on me, even though my temperature is normal.  Its been a horrible cycle, but I feel like extreme dieting, basically pure liquids, is helping.  Not sure at all of the science behind any of this though, but I thought I'd at least put it out there.


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## Kit

Fatigue is so hard to deal with.  The holidays are hard.  A lot I want to do, but no motivation or energy.  How does everyone keep up with life (cleaning, bills, laundry, cooking, dishes)?  Even taking a shower can make me want to sit for a while.  I feel like sometimes this consumes my energy and then I don't have energy to do anything fun, just want to watch TV.
Happy Thanksgiving to the people in America!


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## AnimalLover

Hope those of you who celebrate Thanksgiving have a wonderful holiday!
 I use to really get into holidays, making stuff and being with family. Now I could care less if I go to a family function or not. I would rather stay home cuddled up on the couch with my (four legged) kids!
 I hate this disease!!!!


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## hamster139

Kit said:


> Fatigue is so hard to deal with.  The holidays are hard.  A lot I want to do, but no motivation or energy.  How does everyone keep up with life (cleaning, bills, laundry, cooking, dishes)?  Even taking a shower can make me want to sit for a while.  I feel like sometimes this consumes my energy and then I don't have energy to do anything fun, just want to watch TV.
> Happy Thanksgiving to the people in America!


Happy Thanksgiving!!

I can't clean, do dishes, or laundry anymore, so I have had to get a cleaning lady.  Its expensive, but have no choice.

All my shopping is done online now.  I used to love Costco, but now I can't go anymore.  Most areas have grocery delivery of some sort.  I use amazon fresh.

Cooking is very tough...especially for a family. I just can't stand for long enough.  I'd love to have a chef  (wayy to much money).

Showering is tough... but cold showers help.


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## aleshanicole

Extreme fatigue is a new thing for me. The last four weeks my whole life has been torn upside down. I feel like emotionally being extremely fatigued is hard as well. Anyone else feel frustrated and depressed that you don't have energy on top of all the other symptoms.


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## durwardian

Yes, to the extreme. And none of my practitioners get it. I had to listen to the rant about other disabled people pulling it together, blind and crippled, so you can too. I called her an ignorant B%tch. I get very short-tempered with it, and every night I wish I would just never wake up again. I am so done with this struggle and the lack of care.


----------



## Ann Morgan

AnimalLover said:


> It's so good to read through these stories and hear my story!  I was starting to think that I was going crazy because nobody had an answer or even acted like they cared. It does make sense that it could be caused because our immune system is constantly fighting itself. It terrifies me to think of what I am going to be like when I am older. Right now I am 44 and feel like I'm moving at the pace of a 90 year old. I could see where depression would come into play. There are days where I am in tears because I am so tired of being this way.


l can really relate to your post.
When I was 36 years old, in 1996, I went to my Primary Care Physician and I told her that I felt like I was 96 years old instead of 36 years old :frown:
I am now 54 years old.


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## durwardian

53 going on 106


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## Ann Morgan

Hamster: You mentioned that your constipation and fatigue happened at the same time ? I had diarrhea for 17 years and then all of a sudden in May of this year I started to get severe constipation !  As soon as the constipation started, the "exhaustion" started. I have been "tired" for years, but it was manageable and I could lead a "normal" life. But in May I started with the "exhaustion". I even wrote it in my Day-Planner. In May I just wrote "exhausted" on every single day of my Day-Planner Calendar. I am back to diarrhea now ( could be from the fact that I took antibiotics in November ). But now I am at the "fatigue" level. In 2014 I had a lot of stress and worries and I just got so tired mentally, physically and emotionally. 

I have so many things wrong with my physically and then I have Major Depressive Disorder. Some things that probably make me tired are: menopause, hypothyroidism ( I just started on medication this year ), B12 deficiency, iron deficiency, depression, Ulcerative Colitis, arthritis and medications.


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## Ann Morgan

AnimalLover said:


> Hope those of you who celebrate Thanksgiving have a wonderful holiday!
> I use to really get into holidays, making stuff and being with family. Now I could care less if I go to a family function or not. I would rather stay home cuddled up on the couch with my (four legged) kids!
> I hate this disease!!!!


I suffer from Major Depressive Disorder. I know what deep depression feels like. I know all about isolating. I was just in the hospital a little over a year ago because I felt totally helpless and totally hopeless. I have come a long way since then. But I now know the symptoms and signs to look out for so that I don't end up in the hospital again. If you feel that your isolating is really affecting your life and your relationships, don't be afraid to ask your Primary Care Physician about it. I am not a doctor and this is not medical advice. I am just sharing my story. 

I think that our four legged friends understand us so much more than the two legged kind !  Our "forever friends" do so much to enhance our lives. Nobody gives us unconditional love like they give us. I had two "forever friends" for 12 years, my cats. They are gone now.

I hope you feel better soon and have a great December.


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## Ann Morgan

aleshanicole said:


> Extreme fatigue is a new thing for me. The last four weeks my whole life has been torn upside down. I feel like emotionally being extremely fatigued is hard as well. Anyone else feel frustrated and depressed that you don't have energy on top of all the other symptoms.


Do I feel frustrated and depressed that I don't have energy on top of all the other symptoms...........yes.
I don't even work any longer. I have been collecting SSD benefits for the past two years. I have mental health issues and physical health issues as well. I have been tired for years. When is the last time I felt good ?  I don't remember.:frown:


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## durwardian

Recently I was doing research on the Internet for what causes energy to drain, mood problems, and other combinations like fibromyalgia. Interestingly enough, my recent gene mutation results matched what I was looking at. Both my folation and methylation systems are damaged at a DNA level. These can be complicated by foods and bacteria. The enzymes and amino acids are not present or not in large enough quantity, or too much in some cases.
The important point being that dopamine, adrenaline, epinephrine, norepinephrine, serotonin, and many other body chemicals are totally out of balance, will not reabsorb, or not transform.
This leaves me looking for answers that I don't have yet, and am often too tired to chase after. But I am getting closer. 
My doctor called it esoteric, even though it is a science. Since they are DNA mutations, i see a light but can't quite reach it. Still looking for a genetic specialist and nutritionist to help me find the best treatment.


----------



## UnXmas

Ann Morgan said:


> I suffer from Major Depressive Disorder. I know what deep depression feels like. I know all about isolating. I was just in the hospital a little over a year ago because I felt totally helpless and totally hopeless. I have come a long way since then. But I now know the symptoms and signs to look out for so that I don't end up in the hospital again. If you feel that your isolating is really affecting your life and your relationships, don't be afraid to ask your Primary Care Physician about it. I am not a doctor and this is not medical advice. I am just sharing my story.


Just a word of warning: having mental health problems on your medical record can open the door to all kinds of discrimination. Think carefully before disclosing any mental health symptoms to a doctor.


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## Kit

Interesting Duwardian.  How did you get the gene mutations diagnosed?  I hope this pans out for you!  

Questions to everyone:  Who is still working and if you are how many hours a week?

I am not working, but at times feel like a whimp.  I feel like I just need to buck up.  I need to find a new line of work, but don't have and motivation/energy to think of what that would be or what I could do.  Thanks for listening.

Wishing everyone a wonderful Christmas season.


----------



## Kit

aleshanicole said:


> Extreme fatigue is a new thing for me. The last four weeks my whole life has been torn upside down. I feel like emotionally being extremely fatigued is hard as well. Anyone else feel frustrated and depressed that you don't have energy on top of all the other symptoms.



I am so with you.  As stated before, I finally quite my job, so I could have some of a life.  I have noticed the more fatigued I get then more headaches, muscle pain and sad I get.  What is weird, I will be really tired and have a hard time getting back to sleep once I sleep for a while.  Any suggestions to calm down and get back to sleep?


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## durwardian

Hi Kit, the test was a MAPP test from MillenniumPGT. 
I worked on and off for years with the surgeries. I find this comes and goes. This is so far the longest stretch without a break, and with the most side issues requiring medications. Probably all triggered by a root canal.
I go days without sleeping properly. Sweating or other detox helps me. But mainly avoiding all ups or downs is best.
Benedryl as a sleep aid.


----------



## Spooky1

I'm taking 3x3mg of Melatonin in place of temazepam these days.  I do find it helps.  I also am awake a good few times per night, that's Crohns and loo visits and just waking and getting angry with myself for not having a normal routine, let alone a normal life.  I am so exhausted all the time I get very little done.  It's a physical and mental thing too.  I'm so with understanding and identifying with you all.


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## aleshanicole

Ann Morgan said:


> Do I feel frustrated and depressed that I don't have energy on top of all the other symptoms...........yes.
> I don't even work any longer. I have been collecting SSD benefits for the past two years. I have mental health issues and physical health issues as well. I have been tired for years. When is the last time I felt good ?  I don't remember.:frown:


I also have major depression and am not on medicine for it so i should work on that. I am coming to the realization that i will most likely not work again for a long time. Hopefully not forever. I did file for disability during my 10 day hospital stay recently.However i know this can take months even years if they approve it.  I am just taking it all in and one day at a time. Entiviyio is kicking my ass with side effects and gi issues not really improving. Im not very good at being patient and i know this all takes time. Glad i have family who are helping me and supporting me. I wish you the best of luck. If you have any suggestions with SSD  please let me know.


----------



## aleshanicole

Kit said:


> I am so with you.  As stated before, I finally quite my job, so I could have some of a life.  I have noticed the more fatigued I get then more headaches, muscle pain and sad I get.  What is weird, I will be really tired and have a hard time getting back to sleep once I sleep for a while.  Any suggestions to calm down and get back to sleep?


I also think that the headaches and muscle pain all go together with the fatigue. melatonin and hot tea are good for sleep. Currently on steroids so they  make it hard for me to sleep. Since my most recent hospitalization due to a flare up i have been on Ambien. I feel like it helps but i am still up several times a night. Sleeping was never an issue for me until the steroids. I was always so exhausted i just fell asleep. Now i physically feel exhausted sometimes even my eyes hurt because i cant sleep, but my brain wont shut off. Often feel fidgety and that i can't relax. Catch myself grinding my teeth a lot which is something new.


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## Ann Morgan

aleshanicole said:


> I also think that the headaches and muscle pain all go together with the fatigue. melatonin and hot tea are good for sleep. Currently on steroids so they  make it hard for me to sleep. Since my most recent hospitalization due to a flare up i have been on Ambien. I feel like it helps but i am still up several times a night. Sleeping was never an issue for me until the steroids. I was always so exhausted i just fell asleep. Now i physically feel exhausted sometimes even my eyes hurt because i cant sleep, but my brain wont shut off. Often feel fidgety and that i can't relax. Catch myself grinding my teeth a lot which is something new.



I have been totally hyped up recently. A few years ago I took Lunesta for sleep but I would never take it again because of the side affects. I have been grinding my teeth more recently. And like you said, my brain won't shut off. All my psychiatrist did is increase my dose of Seroquel that I take at night from 100mg to 200mg. I don't sleep any better and now I feel all drugged up in the morning. I have only been taking the increased dose for one week. I am going to start taking 150mg starting tonight. I see my doctor again in 4 weeks. Anyhow, don't use Lunesta. I ate every night in the middle of the night....I called it Sleep Eating. When I had to drive to work in the morning I felt like I was, what I call, Sleep Driving. I was still drugged up on the Lunesta when I had to drive to work. Remember that Impaired Driving does not always mean alcohol or street drugs, it can include prescription drugs too. I wanted more medication for anxiety, but my doctor would not give me any more. I don't take any steroids, but my sleep sucks. Awake every two hours. Then I may wake up from arthritis pain too. And these construction workers at my apartment complex don't help either.....they start working at 7am !


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## Ann Morgan

aleshanicole said:


> I also have major depression and am not on medicine for it so i should work on that. I am coming to the realization that i will most likely not work again for a long time. Hopefully not forever. I did file for disability during my 10 day hospital stay recently.However i know this can take months even years if they approve it.  I am just taking it all in and one day at a time. Entiviyio is kicking my ass with side effects and gi issues not really improving. Im not very good at being patient and i know this all takes time. Glad i have family who are helping me and supporting me. I wish you the best of luck. If you have any suggestions with SSD  please let me know.


There is another support group here for disability. If you want more info on SSD and stuff like that, I would go to that thread.  You will get lots of info there. Have a great Christmas.


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## AnimalLover

I work 40 hours a week 0700-1530. I have to get up at 0530 so I can leave at 0630. There are many times that I will also have overtime. It is all I can do to drag myself out of bed, especially in the winter when the mornings are still dark. Some mornings I find it hard to keep my eyes open driving to work. I could easily doze off at the stoplights. During the day at work actually isn't too bad because I am so busy. The drive home on the other hand sucks! Talk about struggling to keep my eyes open. I find that if I do any sort of exercise after work the harder it is for me to get up in the morning. Also I can fall asleep in the recliner at the drop of a hat. I have read exercise can help with the fatigue but all it does for me is help make it worse. I think my husband is finally starting to understand what I am going through after reading some of the threads.:ysmile:


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## UnXmas

AnimalLover said:


> I work 40 hours a week 0700-1530. I have to get up at 0530 so I can leave at 0630. There are many times that I will also have overtime. It is all I can do to drag myself out of bed, especially in the winter when the mornings are still dark. Some mornings I find it hard to keep my eyes open driving to work. I could easily doze off at the stoplights. During the day at work actually isn't too bad because I am so busy. The drive home on the other hand sucks! Talk about struggling to keep my eyes open. I find that if I do any sort of exercise after work the harder it is for me to get up in the morning. Also I can fall asleep in the recliner at the drop of a hat. I have read exercise can help with the fatigue but all it does for me is help make it worse. I think my husband is finally starting to understand what I am going through after reading some of the threads.:ysmile:


I wouldn't call that extreme fatigue. Working 40 hours a week would be beyond impossible for me - I couldn't even consider it, I couldn't even consider half that. Extreme fatigue is something else altogether.


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## durwardian

aleshanicole said:


> I also have major depression and am not on medicine for it so i should work on that. I am coming to the realization that i will most likely not work again for a long time. Hopefully not forever. I did file for disability during my 10 day hospital stay recently.However i know this can take months even years if they approve it.  I am just taking it all in and one day at a time. Entiviyio is kicking my ass with side effects and gi issues not really improving. Im not very good at being patient and i know this all takes time. Glad i have family who are helping me and supporting me. I wish you the best of luck. If you have any suggestions with SSD  please let me know.


Hi Aleshanicole, I was surprised at how fast my SSD went this time. I have applied twice before and never got anywhere with a Crohn's diagnosis or the depression that goes with it. A surgery every year, sitting on a donut at work within days, suffering...
Finally my immune system crashed and I got an ICD for that. I reapplied again, using a lawyer, and my primary immune deficiency disorder got me disabled within 4 months. I would like to say that Crohn's is not something that SSD offices recognize as debilitating, even if it is. Maybe due to the flare part, since they rarely last longer than 6 months at a time.
My advice is to push the reason you can no longer work or function. Work was torture for me for the last 14 years. I missed more than I was there, burned through vacation, sick days, and was on unpaid leave most of the time. I had at least one surgery every year. It was a huge financial burden and I was very sick. Since the system doesn't support you while you wait for the Government to figure out what is what, you go back and torture yourself with work, and are now disqualified because you can work. It makes no sense, it is a survival thing and shouldn't be like that. If you stop working, you get punished and can't have unemployment, and have to be willing, ready and able to go to work to collect, as well as actively looking for a job. Insane system...
Anyway, I was done, dying and helpless. Finally they approved me. By that time I didn't care and just wanted to curl up and die. Since then many things have fallen through the cracks and the debt collectors won't leave you alone. So, welcome to hell. Luckily, with extreme fatigue, I don't care and I don't answer the phone. I don't do paperwork, I don't clean, I don't cook, I don't shop, I rarely leave the house. But I don't care, I can't. I don't have the energy 9 days out of 10. When I do have energy, it is certainly not going to be wasted on the wrong things. I try to make it to my doctor's appointments, and to counseling. I am mainly trying not to leave a mess for somebody else to clean up when I'm dead. And with extreme fatigue, it feels like it may be anytime now. I keep opening my eyes and thinking "Damn, I'm still here."


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## Ann Morgan

durwardian: I am so sorry that you have had to suffer physically, mentally and emotionally for so long. I have not had any colon related surgeries myself. My sister has many things wrong with her health too, but she still is able to live her life. I believe she takes Prednisone and methotrexate for her RA ?  She is tired all the time too. Why can't I function each day like she can ?  I think the big difference between her and me is that I suffer from Major Depressive Order and Anxiety. I had a life changing  major mental breakdown in 2007 and was hospitalized 3 different times that summer. I was even in the hospital for 14 days last year. I had an attorney when I applied for SSD the second time around. I had to wait 21 months for my hearing. I won my case and started to collect benefits in January 2013, along with a good chunk of backdated settlement money. My case will get reviewed every 3 years. I am already having severe anxiety about the review. If they take away my benefits I will be homeless. Thanks for listening. This post is too long.


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## Ann Morgan

duwardian: I feel the same way. I want to die peacefully in my sleep. Well,when I wake up every morning and I am still alive I  pretty much say to myself "bummer" and I am quite dissappointed. I would rather lead a short, great quality of life, than a long suffering quantity of life. I don't want to live until I am 90 years old and suffer that whole time. I already feel like I am a burden to my family.


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## durwardian

No, not too long. Sorry for the suffering and the ignorance this Nation's rediculous systems impose on us.
Body chemistry plays a huge role in fatigue and depression. As does any illness.
I hope that in 3 years you will be doing great. Then it won't matter. But it is of utmost importance that you know what documentation and of what issues will be important for them. Keep good records and copies, don't trust or count on the system to keep up your data.
I hear talk that the whole social security system will cease to exist in the near future. So perhaps using this time to setup a better social safety net of your own would be a positive project?
I find that solutions help put my mind at ease. Fighting the unfair and inhumane treatment is my cause and keeps me alive.


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## Ann Morgan

duwardian: Yeah, medical records are what won my SSD case. My attorneys requested every single medical record from every doctor I was seeing. I have seen 6 Specialists this year plus two PCP doctors and my Psychiatrist and was hospitailed just last year for suicidal thoughts and feeling hopeless and helpless. Thanks for your insight on the "system".


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## durwardian

Not to mention that the waiting list for most specialists is months. Current waiting time for my next appointment is 5 months. By then who knows what will happen...


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## Kit

@durwardian and annmorgan:  I am so sorry you have to deal with all the depression, pain and other symptoms.  I wish sometimes I had a magic wand that would take away all the problems we have.  Please enjoy the Christmas season and your family.  

Merry Christmas my fatigued friends!!


----------



## fewdalord

Was fine in terms of energy until I started the azathioprine. Since then I've been very fatigued most all of the time.


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## nogutsnoglory

Fewdalord how long have you been on it? You may adjust or maybe can ask Dr to tweak thy dose.


----------



## josepilove

i was on Aza 150mg for 6 weeks and it was terrible. I was so tired, I couldn't make it through the day without a nap. It probably didn't help that my Hemoglobin was 6.8 when i started (and still hasn't improved).

Doc decided to pause the aza for a week (i'm also on Humira) to see if my hemoglobin would increase. I have been off the aza for 6 days now and have had the best 6 days I can remember! Looking forward to seeing what tomorrow's blood draw reveals...but I can FEEL the difference already. I really hope I can stay off the aza without any significant negative effect on the Humira.


----------



## Ann Morgan

Josepilove: I had a blood transfusion in 2009 because my hemoglobin was very low. ( I think it was 5.6 ). My Primary Care Physician sent me right to the hospital. I was only in the hospital over night and I was given two units of blood. After that I started taking 2 iron pills a day for 5 years ( ferrous sulfate, over -the-counter from the drug store ). I took the iron pills until April of this year, when my new PCP said that I did not need to take the iron pills any longer....so I guess he feels that my hemoglobin is fine now. I hope he is right and that I don't have to get another blood transfusion. I get blood draws on a regular basis from ALL of my doctors.


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## hamster139

durwardian said:


> Yes, to the extreme. And none of my practitioners get it. I had to listen to the rant about other disabled people pulling it together, blind and crippled, so you can too. I called her an ignorant B%tch. I get very short-tempered with it, and every night I wish I would just never wake up again. I am so done with this struggle and the lack of care.


I kinda feel the same, but rarely express it... explaining it is pointless.  And what they don't understand is what helps others battle fatigue will NOT help us.... believe me, we've all tried it.


----------



## hamster139

Kit said:


> Interesting Duwardian.  How did you get the gene mutations diagnosed?  I hope this pans out for you!
> 
> Questions to everyone:  Who is still working and if you are how many hours a week?
> 
> I am not working, but at times feel like a whimp.  I feel like I just need to buck up.  I need to find a new line of work, but don't have and motivation/energy to think of what that would be or what I could do.  Thanks for listening.
> 
> Wishing everyone a wonderful Christmas season.



I went through the same thing.  I had to change jobs a few times.  Ultimately, I had no choice but to figure out a job I could do at home.  That has kept me going for the last 8 years, BUT...  now the fatigue is so intense, it causes severe reclusiveness.  So I have to keep tweaking my job to minimize interaction with people.  That really paints me in a corner... but the alternative of not working would cause far too much depression.

But I can do about 25-30 hours of work a week, at home, lying down, on my computer, and stay off the phone for all but 10 minutes of the day.   This is definitely not how I saw myself when I was younger, and fresh out of school with all the energy in the world.  But its all I can handle at the moment.


----------



## hamster139

Ann Morgan said:


> Hamster: You mentioned that your constipation and fatigue happened at the same time ? I had diarrhea for 17 years and then all of a sudden in May of this year I started to get severe constipation !  As soon as the constipation started, the "exhaustion" started. I have been "tired" for years, but it was manageable and I could lead a "normal" life. But in May I started with the "exhaustion". I even wrote it in my Day-Planner. In May I just wrote "exhausted" on every single day of my Day-Planner Calendar. I am back to diarrhea now ( could be from the fact that I took antibiotics in November ). But now I am at the "fatigue" level. In 2014 I had a lot of stress and worries and I just got so tired mentally, physically and emotionally.
> 
> I have so many things wrong with my physically and then I have Major Depressive Disorder. Some things that probably make me tired are: menopause, hypothyroidism ( I just started on medication this year ), B12 deficiency, iron deficiency, depression, Ulcerative Colitis, arthritis and medications.


Thanks for sharing that.  I did have an a lotta stress right before the switch as well... and I almost was 'expecting' the cronh's to go in overdrive (which it did).  However... I have since done everything I can to minimize stress... but I'm still stuck at this bad place.  But other than that, not much else has changed as far as diet or drugs.  It just kinda happened.


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## Kit

*Working*

Hamster said:
"But I can do about 25-30 hours of work a week, at home, lying down, on my computer, and stay off the phone for all but 10 minutes of the day.   This is definitely not how I saw myself when I was younger, and fresh out of school with all the energy in the world.  But its all I can handle at the moment."

So what is your profession Hamster and what ideas do you have for types of jobs that are easier when fatigued?  I have been in the healthcare field for a long time as Physical Therapist Assistant.  I don't have many ideas and not very motivated to look.  Thanks for sharing


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## ChristieJP

I'm glad to find this thread even though I found it late!  Thanks to everyone who has shared your story.  It's helpful to know that I'm not alone and to have so many data points about fatigue in Crohn's in spite of numbers that seem in the normal range.  We can't measure everything, and there's something about this disease that leads to fatigue.  It is NOT our fault and we are NOT lazy.  

I started having digestive problems in 2001 after chicken pox at 23.  Nobody could figure it out, I cut out gluten and was mostly okay.  Through the years since then, I've dealt with increasing fatigue with no explanation.  The digestive problems got slowly worse, too, until I had cut out more and more foods and then had lots of pain and some bleeding two years ago.  I was surprised to be diagnosed with Crohn's Disease after a colonoscopy.  Even though my bathroom symptoms are comparatively mild, the fatigue is NOT mild.  It is my most difficult symptom to manage.  In order to help myself feel a little more in control, I created a rating system (green, yellow, red) and I rate each day, then act accordingly (exhausted, crying, and irrational = red day = TV or reading . . . fatigued but reasonable = yellow day = quiet work, limiting exertion as much as possible) . . . spunky and happy without discomfort = green day = do whatever I want!)  I keep reminding myself that my husband benefits from me resting wisely (I am more fun, I am able to speak clearly and think better, I am nicer to be around).  I FIGHT every day the idea that I am lazy.

Over the past few years, I have slowly backed out of a normal job (first to part time, then quitting altogether) and I work for myself now, but our family is supported by my husband (I don't really make money with my business yet, but I'll get there!)  I have a great husband.  I also have a couple friends who deal with the fatigue of auto-immune diseases, but it's best not to talk about it with my family.  They don't want to know.  In fact, just yesterday, when I mentioned that my overwhelmed and stressed-out Mom (who has just been diagnosed with cancer) might want to think through her activities and rate them based on importance (i.e. save energy for the most important things and choose to let the less important things go), my Dad stabbed me in the heart.  He decided to tell me all about his aunt, who was "sick all the time," but bravely kept forging ahead because she was a farmer's wife and she didn't get to rest just because she was tired.  That marked the end of sharing my health journey with my family.

I get that it's hard to understand this illness without experiencing it, but what are the chances that a focused and driven woman who was very successful in life early on and who got lots of joy from learning, traveling, and experiencing life (including two graduate degrees even while I was getting sicker) all of a sudden decide to be lazy and rest all the time rather than doing fun things?  Answer: she wouldn't unless she couldn't do otherwise.

Best wishes for health and energy to you all!


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## Kit

Thank you so much Christie for putting that into words!  Your story makes me feel understood.  hugs!


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## Ann Morgan

Christie thank you for sharing.

I wrote a long reply but erased it because I felt like I was whining. My sister has many heath issues but she gets things done and goes places and leads a normal life. If she can do it then why can't I ?


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## spingirl

Because everyone is different...and this inflamation is internal and can really do a number on us!!!


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## Kit

Ann Morgan said:


> Christie thank you for sharing.
> 
> I wrote a long reply but erased it because I felt like I was whining. My sister has many heath issues but she gets things done and goes places and leads a normal life. If she can do it then why can't I ?


I hear you!  I feel like that all the time.  Comparing myself to others.  I finally realized I can push and do more than I should and then am no good for days.  I have decided I can't create energy that isn't there. I will literally stop functioning mentally and physically.  

Has anyone ever seen the spoon theory?  It is a wonderful visual for explaining limited energy/fatigue.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/


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## UnXmas

Ann Morgan said:


> I wrote a long reply but erased it because I felt like I was whining. My sister has many heath issues but she gets things done and goes places and leads a normal life. If she can do it then why can't I ?


If you could lead a normal life, Ann, you would be doing it! If it were just a matter of will power, or effort, or desire, we'd all be living happy, productive lives. There are clearly far more complex things going on. Don't blame yourself for the things you can't manage. Your sister doesn't have to cope with the same things you do, and it's not just physical symptoms that differ. She may have different people supporting her, different experiences to draw on, different emotional responses and ways of thinking. These are not things we can just control how we like. We can usually make some changes, but working out how to do so is very difficult.

You're allowed to whine, as long as the whining doesn't include you blaming yourself.


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## Ann Morgan

UnXmas: Thank You.


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## ChristieJP

I completely relate to this talk about comparing myself to others!  I struggle against it every single day.  Grr!  I think about the spoon theory frequently - my husband and I use it as a "secret" code: "How many spoons would that take?"  

It's especially hard to keep the right mindset (that I'm not lazy and bad) when my parents are in town (they spend the winter in Arizona, where we live).  I feel negatively judged for *being* sick in the first place (I must be doing something wrong if I have a chronic disease) and then judged for not getting better and judged for not being more productive (my house is not maintained or cleaned to the standard my parents think is ideal - though I think my Mom probably has some OCD in this area).  I've been what I would consider successful in my life and I still am slowly accomplishing the mission I believe I was placed on Earth to do, and it's extremely hurtful that they focus on what I am not doing rather than what I *AM* doing.

I was busy being sad and discouraged the other day on this topic when I had a little vision.  I envisioned myself being an expensive and valuable low-miles-per-gallon-of-gas luxury car.  God was telling me that I'm not a lemon or a junker; I am created for a different purpose and my life (at least right now) has a slow pace, but it doesn't mean I'm faulty.  A Rolls Royce only gets a few miles per gallon - so do I!  A smart person wouldn't waste gas in the Rolls Royce running all over town - and I don't want to waste my fuel, either!  My husband took the metaphor farther and said that we don't expect a pick-up truck and a Mini to serve the same purpose, but somehow we wrongly expect people to all have the same capabilities.  He prefers it if I save my fuel for the most important things: God and him!  And then a friend (who also deals with fatigue) said maybe we're the expensive restored vehicles that are mostly owned for joy and love rather than hauling dirt or groceries and maybe most of our purpose is to be beautiful and inspiring - ha!


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## Ann Morgan

Christie:
I loved your post. I live in Glendale, Arizona. My sister and brother-in-law retired last year and purchased my dead mothers condo in Sun City. They will be here in January, February and March of every year. They have only been here one month and I already have a lot of stress. I have mental health issues in addition to my Ulcerative Colitis, and arthritis in my hips, shoulders and neck. I have tried to explain to my sister that I cannot physically do all of the traveling and going to events and festivals she invites me to. I keep telling her that I have a lot to consider before I go anywhere. Like: bathrooms, how long is the drive, is walking involved, is standing involved, will I be exposed to direct sunlight, what will the temperature be. They just bought a new fancy car, I am afraid to ride in it because I would not want to have diarrhea in her car. My mental stress has escalated since she arrived.

I live my life very simply. In my life going to the grocery store takes effort because of my depression. Going above and beyond my regular life things messes me up. I want her to go home NOW, but she will be here 6 more weeks. I love her, but I still want her to go home. I am tired all of the time, I can't take on any extra activities. 

Well, that is my rant for today. Hopefully I can see a doctor on Monday or Tuesday because I need a game plan to jump start my "recovery" ( mental illness). Thanks for listening.


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## Spooky1

Christie, that post was lovely!  Thanks, I shall apply it to me too.  Life is unbearably hard at times.  The fatigue, along with all the other health issues are a nightmare.

Ann, I know exactly how you feel.  I can't be dealing with visitors for long either.  The hardest part is telling her how you feel, just so she goes and you can feel less stressed.  It won't do you any good to be made more stressful.

I know exactly how you feel about going out, or in the car.  I'm exactly the same.

You all have my deepest understanding and sympathy.


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## spingirl

Just a quick note about car rides. I have taken to wearing adult diapers - Depends are a little thinner and pretty discreet.  At first it was hard to do (emotionally) but now I have come to really appreciate them.  I have not pooped in them but just knowing I have it on seems to take the stress off of me.  I know if I do have an issue I have some protection on.  When I get close to where I am going if we stop somewhere I will take it off and toss it away in ladies room.  I highly recommend them.  The hard part is trying them for the first time. It was a little hard for me to wrap my head around but now its really fine.  Nobody can even see them.


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## FrozenGirl

I rarely complain about the fatigue but it really hit me how noticeable it is when my mom stated she was tired and I agreed. My brother then chimed in with "you're always tired". Ugh.


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## UnXmas

spingirl said:


> Just a quick note about car rides. I have taken to wearing adult diapers - Depends are a little thinner and pretty discreet.  At first it was hard to do (emotionally) but now I have come to really appreciate them.  I have not pooped in them but just knowing I have it on seems to take the stress off of me.  I know if I do have an issue I have some protection on.  When I get close to where I am going if we stop somewhere I will take it off and toss it away in ladies room.  I highly recommend them.  The hard part is trying them for the first time. It was a little hard for me to wrap my head around but now its really fine.  Nobody can even see them.


I second this. I have an ileostomy now, which I love, as it means I don't have this problem anymore, but when I did I used Molimeds (the brand the NHS uses - like most things, they're free on the NHS for people in the UK). I still use them for my bladder. They give you piece of mind and spare your clothes. Draw sheets work as protection for car seats, etc. too. 

I still carry a change of clothes and everything I'd need to change my stoma bag while out in public in case my bag leaks, but that hasn't happened yet (though I don't go out in public nearly as much as I used to now as my other medical condition worsens). If I'm just out walking my dog and won't be out very long and nowhere very formal, I don't take anything with me now I've got the stoma.

To anyone who has continence problems, most important is often the stress and worry of what might happen. Although I know my bag could leak, I don't feel the same way about it as I did with incontinence, but some of that is a change in my thinking rather than just the physical change in the nature of the accident. Take clean clothes, wipes, etc. with you, try wearing an incontinence pad, and then try and put the fears to the back of your mind. If something does go wrong, deal with it when it happens, it won't be the end of the world. If you feel it may help, explaining the problem to whoever you'll be with from the start (if you're with friends or family) can make it much easier. If you're worrying about an accident, you at least won't be worrying about how you'll explain it to them or dealing with their surprise. They may also provide moral support, and practical help if you need someone to run and get you loo paper, clean underwear, or whatever.

And to bring this post back on topic to fatigue, worrying is exhausting! So I'd count incontinence pads as something that helps make going out not quite so overwhelmingly tiring.


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## hamster139

Kit said:


> Hamster said:
> "But I can do about 25-30 hours of work a week, at home, lying down, on my computer, and stay off the phone for all but 10 minutes of the day.   This is definitely not how I saw myself when I was younger, and fresh out of school with all the energy in the world.  But its all I can handle at the moment."
> 
> So what is your profession Hamster and what ideas do you have for types of jobs that are easier when fatigued?  I have been in the healthcare field for a long time as Physical Therapist Assistant.  I don't have many ideas and not very motivated to look.  Thanks for sharing


Sorry, it takes me forever to respond.  Programming and Web design/maintenance.  But that's certainly not for everyone, it's a bit on the nerdy end for most; but I like it.

But I can't really get myself to do any marketing/sales/support for my services, so I have to 'buddy up' with a 'talker' to handle customer interaction.  I've also had to drop pretty much every client that causes any amount of stress.  My body just can't handle it.

I can't really think of a lot of other jobs like this.  Energy and interaction seem to be a prerequisite for almost everything; and I am sure that includes healthcare.


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## hamster139

If anyone suggests that its lazyness or that its a 'choice', why on earth would anyone choose to lay-down, all day, do nothing, go nowhere?

There is no upside at to this at all.  And its not a consequence of anything we are doing or eating, that we can 'turn off'.  Nobody in their right mind would purposefully be choosing this type of lifestyle, and we've all been to hell and back trying to combat it.


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## Ann Morgan

Yesterday I went out for coffee with my sister. The coffee shop was nice and we chatted for a long while. Then we visited some antique-type stores. The stores were all connected in a small strip mall. I had a good time at the coffee shop and the stores. 

Before I even went on this coffee/shopping trip I had told my sister that I did not want to be gone for more than 5 hours because I get tired.

I arrived home at an appropriate time. I ate something and watched TV. One hour after I got home I became extremely tired. I could not keep my eyes open. I ended up turning off my TV and all the lights and shut my drapes. I slept for 4 hours in the middle of the afternoon !  I mean, I really slept like I do at night time. Except at night time I take a medication that makes me sleepy, that is a side effect of that one medication.

I am glad that my sister respected my limitations and I arrived home before my 5 hour limit. A while back I went to some Thrift Stores with my sister and Auntie and after 2 hours I was exhausted ( those stores were all attached in a little strip mall ).

I want to do other things, but I am pretty limited on the length of time I am gone because of the exhaustion I wxperience. With my sister or Auntie I can go to coffee shops, breakfast, lunch, dinner, to some Thrift Stores or Antique Stores. I did go to Costco with my sister one day to buy some things, but I had a short and detailed list of what I wanted to buy. I got the things on my list and then got out of there ! My sister likes to roam around the store and eat food samples. I just get what I want and then go home. : - )

Thanks for listening.
I am going somewhere 4 days a week now on a regular basis. I have to get up at 6:30am ( ugh). Then I get home by 3pm. I will see how the 4 day a week thing goes. If I get too tired I will cut down to 3 days a week.

: - )


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## Kit

@Ann.  I feel you!  I don't like to even plan 2 days in a row doing things (and that is 2-4 hours at a time).  It will definitely catch up with me.  My mom is very supportive, but I think she finally realized how severe the fatigue can get when I visited her.  She saw first hand when I just shut down.  She says she sometimes gets that way too, so she knows the feeling.  
It is a daily struggle and I need to watch how I plan things.


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## UnXmas

Kit said:


> @Ann.  I feel you!  I don't like to even plan 2 days in a row doing things (and that is 2-4 hours at a time).  It will definitely catch up with me.  My mom is very supportive, but I think she finally realized how severe the fatigue can get when I visited her.  She saw first hand when I just shut down.  She says she sometimes gets that way too, so she knows the feeling.
> It is a daily struggle and I need to watch how I plan things.


This is pretty much how I feel too. Though I can do more when it's things where I can plan my own schedule. So I walk my dog every day, and have family come to visit, etc. But I walk my dog at the time I have most energy. I'm a morning person, so I get up early, wait for my meds to kick in, then go out, maybe for fifteen minutes, maybe longer, but if I get tired (or any other symptom gets too much) I come home and rest. And it's ok having family round, because I still nap during the day when I need to, eat when I feel most able, etc.

But when I have to do things at a set time, it's exhausting and I get nervous whenever I have things scheduled coming up - hospital appointments, usually. Then they might coincide with the time I desperately need sleep, and it's awful.

It's been a few years since I last had what came close to a normal life - university, forcing myself to have a social life - and there's no way I could do half that now. But even back then, the evenings were the worst, I'd literally be crying with exhaustion because I just wanted to go to bed but made myself go for nights out instead.


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## Spooky1

I feel guilty sleeping through the day, but at least you people understand as so many others don't and make me feel guiltier than I do.  It is a sorry state of affairs, and I think I'm a bit of a wasted life and that's my biggest regret.  I would so love to go on holiday somewhere, but you all know how difficult that is.  Utterly exhausting.


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## UnXmas

My family don't make me feel guilty - or even try to - because they know how miserable and irritable I am when I need sleep, so they know it's in their best interests to let me nap, I'm much easier to live with that way!


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## Ann Morgan

hamster139 said:


> I kinda feel the same, but rarely express it... explaining it is pointless.  And what they don't understand is what helps others battle fatigue will NOT help us.... believe me, we've all tried it.


I am 54 years old and disabled. My sister is 64 years old and just retired. My sister has many things wrong with her health. We are both tired all of the time, so she somewhat understands me when I say I am "tired" ( which really means exhausted/fatigued ). 

My sister can do : yard work, gardening, painting the inside of the house, home projects on the inside and the outside of her home, heavy duty cleaning, travel, site-see, walk, stand, SLEEP. She says that she is tired but if she is tired how can she do all of those things ! She just retired less than a year ago and she has been busy ever since. 

The past few days I have been unusually "tired" and it really has me stumped. I am trying to figure it out. A lot of things can make a person "tired". I can be "tired" from my : Ulcerative Colitis, Hypothyroidism, Menopause, Major Depression.

I have been trying to participate in a program for people with mental health issues during the past month, which means being away from my apartment three to four days a week for several hours. I need to be away from my apartment to combat my isolation, but I also get very fatigued when I am away too long. I am trying to find a balance between resting at home and going to the program, in addition to doctors appointments and errands. I go to this facility to help me learn coping skills for my Major Depression and my Anxiety and I go there to socialize. The facilitators are great there and the clients are interesting and I learn a lot from sharing experiences with them. 

I don't know why it is almost 1am and I am still awake. Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh. :ybatty:


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## spinbot

Spooky1 said:


> ........ I think I'm a bit of a wasted life and that's my biggest regret.  I would so love to go on holiday somewhere, but you all know how difficult that is.  Utterly exhausting.


I'm felt the need to chime in as misery does love company.  I've just reached this point in my life where after repeated episodes of extreme dehydration (getting the flu and losing 10lbs over night through my ileostomy), I've caused enough damage to my kidneys I now can add a new "disease" to my list of problems... "Kidney Disease".   Due to my kidneys not functioning properly, I now experience added fatigue which when added to that related to my Crohn's Disease and depression, it has pushed me over the edge and not being able to work anymore.  What's sad is that before my kidneys started to have major issues, I had enough energy to get my work day finished and that was about it.   Now I have those 10 hours back in my day, but I am just as tired, if not more, but virtually all day now.   

Lazying around the house all day definitely makes me feel completely useless and guilty as I see my partner come home tired from her work 5 days a week.  At least she enjoys her work (RPN), but it still tires her out.   That puts the pressure on me to get stuff done around the house, which I do honestly try to take care of, but there are days where I feel like I am running on 10% of a tank of gas, so even getting up and walking around is tiring. 

I am just in the battle, i mean process of trying to get qualified for long-term disability, but to go back to the original statement I quoted, at least I worked until I was 43 years old, but without that in my life, if feel my future is nothing short of pathetic.   It's hard to find purpose in your life, when you do nothing with it.   When you lack energy, you lack the desire to participate in anything.  I hate planning any future events as I fear the day the event arrives, I will just be too tired to participate and ruin it for my partner.  I rather she plan outings with her mother, as then I know she will have fun.

I don't want to come across as suicidal here, it just that with being tired (not always sleepy but always resting), life can be pretty boring.  There are only so many good movies/tv shows to watch and I feel I have almost watched all of them.  I don't know how those of you who might be years ahead of me (ie. been on disability / not working for years ) can maintain your relationships with your respective partners.   I figure, in time, she will eventually grow tired of "the guy that is making the big dent in the couch" and she'll find someone exciting to take her places and do things I can never do.   Despite her not being a big thrill seeker/social butterfly, she isn't as much of a hermit as I.

I guess all we can do is deal with things one task at a time.   My focus is on getting my disability approved now, so maybe with that out of the way and the stress associated with it, my "energy" can be next put in to finding purpose to my new way of life.


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## Ann Morgan

Spooky1 said:


> I feel guilty sleeping through the day, but at least you people understand as so many others don't and make me feel guiltier than I do.  It is a sorry state of affairs, and I think I'm a bit of a wasted life and that's my biggest regret.  I would so love to go on holiday somewhere, but you all know how difficult that is.  Utterly exhausting.


My mom died in 2013. So for Christmas 2014 my sister had me join her and her family in Idaho for a week during Christmas. I enjoyed my week there. My sister paid for my airline ticket and my hotel. I spent time with my sister, brother-in-law, my niece and two great-nieces. BUT...... this entire trip was SO exhausting ! Packing, planning, cab to the airport, the plane ride, staying at a hotel, going places and doing things. I know my sister wanted me to have the best Christmas ever and I had a good visit there, but it was an exhausting week!!!!! I even had to stay in my hotel room all day one day because of colon issues. I guess this flying to Idaho every year is going to become a new family tradition for me since both of my parents are dead now, but can I survive this trip EVERYTHING year ?????  : - 0.

PS: We went to a beautiful outside Christmas light exhibit while I was there. It was at night. I had to wear special snow boots, two jackets with hoods, two pairs of gloves and a scarf !!!  Holy Cow. I am from Arizona. I cannot believe this is what people have to do just to go outside in the Wintertime !  I grew up in Minnesota as a kid, but moved to AZ when I was 12 years old.

Have a healthy week. :dusty:


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## UnXmas

The journey will get easier the more times you do it. You'll learn what to pack, the best cab firms, where the bathrooms are. Plan for some quiet time - e.g. an afternoon just staying in watching movies or something with your family.


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## Ann Morgan

I DID enjoy baking and eating home-made cookies !  Oh, and fudge too !  My tummy can tolerate all the sugary stuff, but not fruits/vegetables ( that just seems stupid, huh ? ).  

Since I cannot walk very far, I get a wheelchair at the airport. They push me from the front door there, to the check-in window, through Security, to get a cup of coffee : - ) and right up to my departure gate. Then I give the wheelchair assistance person a small tip ($). When I first started to have to use the wheelchair at the airport I was embarrassed ( I am only 54 years old), but I honestly could never walk through an airport. 

I had a lay-over in Minneapolis last year with my niece and sister. I tried walking around to all the shops with my little back-pack on my back. I was pretty confident at first, but then I finally had to say that I could not walk any farther and sat down......I won't try that again !  

Oh, yeah, I ate food at the airport that I should not have eaten and had to RUN to the airport restroom less than an hour after I ate the food. Ahhhhhh.

Weather is great here today.


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## Grant

In the mornings my energy levels are so low its untrue. I'm 56 but I feel like an old old man @ times. Usually PM I just have to shut my eyes, fatigue just washes over me very quickly & I have to sleep. I can only put it down to not getting full nutrition from what I eat & not eating much fruit & veg + Humira. 
Rgds
Grant


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## UnXmas

I've used wheelchairs many, many times - mostly in hospital, but that includes trips out of hospital to parks and cafes and shops when people came to visit me during my in-patient stays - and I'm a lot younger than 54.


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## Spooky1

@Spinbot. Yes, it's exactly like that.  The great thing about this forum is that we do find people who also experience this.  Not the ones that don't and therefore have no experience, therefore they just don't understand.  It is rather hard.  Not that people know that either.

You have my sympathy.


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## pjmel

I did not know that aza caused fatigue - I thought I had researched all of the side effects as well! I struggle with fatigue - on top of crohns I have drug-induced lupus from humira and am having a flare at the moment. My partner isn't very understanding - his theory is that I am lazy and I "just have to push through it"! Not very helpful cause when I try to do that I am completely wiped out.  Some of my friends don't understand this very well either and I feel so guilty turning down invitations or not visiting.  
One of my bosses is quite ignorant about it all - she told me "we all get tired sometimes"! And I was so exhausted I wasn't thinking straight that I didn't realise until later how badly she insulted me.
So glad to have found this group - don't feel quite so alone.
And I love the spoons theory - I can totally relate to it but unless you are discussing with someone in a similar situation they don't seem to get it.


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## Ann Morgan

My sister and brother-in-law were visiting my city for 3 months recently because they just retired. She is tired all of the time too, probably from all her health issues. I was invited to SO many activities and trips and events while she was here, but I could not do them. So it was restaurants, coffee shops, the occassional thrift store and Scrabble for she and I. I felt bad about constantly turning down her invitations. I did not want her to think that I did not want to spend time with her !  She went home recently, but probably still doesn't understand that I cannot do all the things that she does.


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## Kit

Hi Spinbot,

Just wanted to send a note of support your way! I feel for you! I don't think most people understand not having energy to commit to something.  Hang in there.  With the age of the internet you can keep in contact with people without expending to much energy and being able to control it more.  Balance.  Find new ways to tell your partner how much you appreciate her and have quiet fun with her.  Good Luck with the disability!  This is a safe place for you you to express feelings and get support!


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## Kit

Welcome Pjmel!  I am so sorry your partner doesn't  understand. It is so hard to describe the fatigue we get.  It isn't just tired, it is full out unable to function.  We make our choices on the level of energy we have which is not predictable!  I hope you find this forum a source of support and peace.


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## hamster139

Just a question for people here with Crohn's with chronic extreme fatigue.

Does anyone here have a persistent low-grade fever that never goes away...  or a constant feeling of being warm, even when you are not?

I feel like I am always battling two fronts, the fatigue and the feverish feeling.  I understand the low-grade fever is common with Cronh's, but mine is kinda strange, a bit different than other crohn's sufferers.  I feel very uncomfortable when it is hot, or when I am in the sun.  I am now sleeping with cooling towels and I keep the AC on non-stop, and my abdominal area tends to overheat the most.  I am just curious if I am the only one here with this sort of heat-intolerance.


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## 1sickpuppy

I don't have fevers, but I have become very intolerant to heat, which I didn't used to be. The direct sun on my head does me in after about 10 minutes. (I have UC)


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## UnXmas

Like 1sickpuppy, I don't feel feverish, but I can't stand hot temperatures. It baffles my doctors because I'm extremely underweight and underweight people usually can't tolerate the cold because they have no bodyfat to keep them warm and if they're not eating enough their body won't waste energy keeping warm as  there are other body functions which are more important.

I have a lot of medical issues besides Crohn's though and I don't think this symptom is Crohn's related in my case.

In general, people - including healthy people with no temperature regulation problems - are warmer at the core (torso, head) and cooler in the extremities (arms, hands, nose, feet, toes, fingers). I think again because of the need to keep the vital internal organs working is the priority, and the relatively poorer blood supply to the extremities makes body heat centre on the core. In people with temperature problems this distribution of heat may become more obvious - as in Raynauld's syndrome, frost bite, etc.

hamster - what makes you think your temperature problems are related to fatigue rather than Crohn's in general?


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## Kit

I have Crohn's.  When I get really fatigued/tired I get cold even to the point of chills right before bed.  I do feel warm/flush feelings on and off especially in the summer.   But I am not so warm I feel the need for extreme cooling.  As for low grade fevers, I had them (99.2) almost every afternoon and evening when I had an abscess.  The Dr had told me not to worry about a fever until it hit 101, but mine never did.  Ended up with a drain for the abscess and surgery.  So if this is a new symptom, you might want to see if you have any other symptoms that would warrant a low grade fever.  I won't ignore a low grade one again.  

I feel a lot of the cold and warm feeling is not being able to regulate my temperature very well.  

i hope this helps


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## edentenley

Constant fatigue...which leads to increased irritability.  The fatigue is less when I'm on prednisone...but everything else about prednisone sucks.  Its so hard to explain to family  members and friends when you look normal otherwise...but are just so exhausted.


----------



## Ann Morgan

pjmel said:


> I did not know that aza caused fatigue - I thought I had researched all of the side effects as well! I struggle with fatigue - on top of crohns I have drug-induced lupus from humira and am having a flare at the moment. My partner isn't very understanding - his theory is that I am lazy and I "just have to push through it"! Not very helpful cause when I try to do that I am completely wiped out.  Some of my friends don't understand this very well either and I feel so guilty turning down invitations or not visiting.
> One of my bosses is quite ignorant about it all - she told me "we all get tired sometimes"! And I was so exhausted I wasn't thinking straight that I didn't realise until later how badly she insulted me.
> So glad to have found this group - don't feel quite so alone.
> And I love the spoons theory - I can totally relate to it but unless you are discussing with someone in a similar situation they don't seem to get it.


My sister has many health issues but she APPEARS to handle them way better than I do. I believe she has Sjogrens Syndrome, some form of Lupus, Cataracts, Rheumatoid Arthitis, terrible gums/teeth, hair loss. And she had a lumpectomy with radiation in 1987 for breast cancer. AND she is taking all kinds of strong medications that have side effects.

Recently in an e-mail she wrote to me she said ......."Having a pity party for myself is a waste of time". I really think she was aiming this statement toward me ( as if saying that me having a pity party for myself is a waste of my time.) I guess she and I handle our emotions and feelings in totally different ways. And I have a major Depressive Disorder, which has sucked all the joy out of my life.

My sister is a "you have to over that" kind of person. 
And I am a super sensitive person that FEELS everything. 
She RARELY talks or writes about her health issues, whereas my health issues overwhelm me everyday. I feel weak and tired and misunderstood and worthless. I mean, isn't she afraid about her catact surgery she will probably have next year ? That is surgery on her eyes. I would be terrified.

Before I started having symptoms of mental illness I felt exactly the way SHE did about people and things. Like "black or white " thinking. Like "snap out of it" thinking. Or "just get over it "thinking. And I probably looked down on some people who were not as fortunate as I was. 

But then I suffered a breakdown, my dad died, my mom almost died of pneumonia, I lost my job due to "workforce reduction", ran out if money, had no income, had no health insurance, my sister financially supported me for 9 months, I was on food stamps,  I waited 21 months for my SSD hearing, I was isolated and not on any psychiatric medications for over a year, my mom went  into a nursing home, I ended up in the psychiatric floor of the hospital, my mom died. After all of my life experiences during the past ten years I now have so much empathy and sympathy and compassion for all kinds of people.

At one time in my life I considered some people to be THOSE people. The people who were on welfare and food stamps and who were poor. But as soon as it all started happening to me, I understood. I sat for 4 hours at DES for an appointment. I received food stamps for six months. And I collected Unemployment Benefits and then eventually SSD and Medicare. I never thought all this "would happen to me".  I had a life, a great job at a bank for 24 years, an apartment, a car, my own money, vacations, traveleled and had confidence and independence at one time.

Now I have UC and major mental health issues. Now my life has turned a totally different direction and I am a different person. I lost my job in 2009 and I am still trying to figure out who I am NOW and what my purpose is.  I want to belong. 

Sorry I am ranting. I am sitting here at home taking my Vancomycin for my c-diff and doing nothing. I am infectious, so I am going to as few places as possible. It is going to be a long 2 weeks. Thanks again for listening.

I wish everyone a healthy and happy week. : - )


----------



## mrspecker

Can u add ne please  iv got ibd but having tests done to see which one I'm so tired and cant explains it in pain in on morphine  for pain but I'm just exhausted have three kids and husband I spend most of my time in bed on sick since Feb


----------



## ChristieJP

I just wanted to add that having an Inflammatory Bowel Disease automatically sets us up for mood disorders.  95% of the seratonin (brain chemical involved in regulating positive mood and energy level) in the body at any one time is found in the bowels; it's made there!  Doesn't it make sense that if our bowels are damaged, we won't be able to make or transmit appropriate amounts of neutrotransmitters?  

(See this study, which showed that inflammation in the intestine inhibits neurotransmitter production even in the non-inflammed portions of the digestive tract).  

Any chronic disease is tough to deal with emotionally and psychologically, but when it attacks our physical ability to manage our emotions and balance our brain chemistry, it's especially insidious.  

This is a hard week for me energy-wise.  I felt reasonable last week and was able to feel that I accomplished some things over the weekend, and this week it all sort of fell apart.  I have my plan for dealing with these days (my green light, yellow light, red light plan mentioned in a previous post!), but it feels LAME to have to ration myself so carefully.  I hate resting so much when a lot of times after resting a lot, I still feel just as fatigued.  I fight the idea that I'm lazy and that I'm a disappointment because I'm not living up to my potential.  It's impossible to explain this sort of deep brain fatigue even to friends who have other health concerns.  It always feels like I'm making excuses for just being a silly and self-involved person.  And people get tired of hearing that I'm discouraged and feeling worthless.  

I feel as if I should just push through it, but when I do, I fall apart and I'm no use to anyone for days.  So I have to admit that when I choose to rest before I reach the red alert moment, I'm less likely to reach that falling-apart stage and I am able to be a better wife and friend and person.  

I am working to balance my desire to constantly fight this illness while at the same time choosing to be serene and at peace in the middle of it.  I'm not good at it!

Be KIND to yourself today.  I am trying, too!

xo


----------



## 1sickpuppy

> am working to balance my desire to constantly fight this illness while at the same time choosing to be serene and at peace in the middle of it. I'm not good at it!


Love this, it's a great explanation of the struggle! And it IS hard. 

Unxmas, that's interesting - I'm normally always cold, too. I guess I can't do temperature extremes very well. That said, it's 93 degrees outside today and I'm laying on the couch wearing sweats and wrapped in a blanket. It makes no sense even to me LOL.


----------



## Ann Morgan

ChristieJP said:


> I just wanted to add that having an Inflammatory Bowel Disease automatically sets us up for mood disorders.  95% of the seratonin (brain chemical involved in regulating positive mood and energy level) in the body at any one time is found in the bowels; it's made there!  Doesn't it make sense that if our bowels are damaged, we won't be able to make or transmit appropriate amounts of neutrotransmitters?
> 
> (See this study, which showed that inflammation in the intestine inhibits neurotransmitter production even in the non-inflammed portions of the digestive tract).
> 
> Any chronic disease is tough to deal with emotionally and psychologically, but when it attacks our physical ability to manage our emotions and balance our brain chemistry, it's especially insidious.
> 
> This is a hard week for me energy-wise.  I felt reasonable last week and was able to feel that I accomplished some things over the weekend, and this week it all sort of fell apart.  I have my plan for dealing with these days (my green light, yellow light, red light plan mentioned in a previous post!), but it feels LAME to have to ration myself so carefully.  I hate resting so much when a lot of times after resting a lot, I still feel just as fatigued.  I fight the idea that I'm lazy and that I'm a disappointment because I'm not living up to my potential.  It's impossible to explain this sort of deep brain fatigue even to friends who have other health concerns.  It always feels like I'm making excuses for just being a silly and self-involved person.  And people get tired of hearing that I'm discouraged and feeling worthless.
> 
> I feel as if I should just push through it, but when I do, I fall apart and I'm no use to anyone for days.  So I have to admit that when I choose to rest before I reach the red alert moment, I'm less likely to reach that falling-apart stage and I am able to be a better wife and friend and person.
> 
> I am working to balance my desire to constantly fight this illness while at the same time choosing to be serene and at peace in the middle of it.  I'm not good at it!
> 
> Be KIND to yourself today.  I am trying, too!
> 
> xo


Thank you for sharing. What you said made me feel less alone. For me it truly is about balance.....physically, emotionally and mentally. I am learning that it is not selfish to take care of myself, no matter what other people think. People actually respect me more when I stand up for myself. Having my own set of physical and emotion boundaries has really empowered me. 

"My Life, My Rules"


----------



## hamster139

1sickpuppy said:


> I don't have fevers, but I have become very intolerant to heat, which I didn't used to be. The direct sun on my head does me in after about 10 minutes. (I have UC)


WOW, it sure helps to have this forum.  I can't thank whoever started it enough.  I was starting to think I had something else.  I cannot tolerate sunlight at all.  The beach has become impossible for me now, this only happened within the last few years, and I was puzzled, kinda scared, because this didnt fall under classic crohns symptoms.


----------



## Ann Morgan

hamster139 said:


> WOW, it sure helps to have this forum.  I can't thank whoever started it enough.  I was starting to think I had something else.  I cannot tolerate sunlight at all.  The beach has become impossible for me now, this only happened within the last few years, and I was puzzled, kinda scared, because this didnt fall under classic crohns symptoms.



Is heat or sunlight intolerance a part of Ulcerative Colitis ?
I no longer can be in direct sunlight, even for a few minutes.
When I am in direct sunlight I feel like there is a torch on my skin.
Even when I am driving my vehicle with the window open and the
sun hits my neck and arm it really feels super hot.
So, here I am in Arizona and I cannot tolerate the sun whatsoever.
I will now have to buy an umbrella and wear long sleeve shirts and a
big funny hat ?:eek2:


----------



## hamster139

UnXmas said:


> Like 1sickpuppy, I don't feel feverish, but I can't stand hot temperatures. It baffles my doctors because I'm extremely underweight and underweight people usually can't tolerate the cold because they have no bodyfat to keep them warm and if they're not eating enough their body won't waste energy keeping warm as  there are other body functions which are more important.
> 
> I have a lot of medical issues besides Crohn's though and I don't think this symptom is Crohn's related in my case.
> 
> In general, people - including healthy people with no temperature regulation problems - are warmer at the core (torso, head/face) and cooler in the extremities (arms, hands, nose, feet, toes, fingers). I think again because of the need to keep the vital internal organs working is the priority, and the relatively poorer blood supply to the extremities makes body heat centre on the core. In people with temperature problems this distribution of heat may become more obvious - as in Raynauld's syndrome, frost bite, etc.
> 
> hamster - what makes you think your temperature problems are related to fatigue rather than Crohn's in general?


Just a hunch.   I never saw heat intolerance or sun intolerance as a symptom of Crohns, and like you, I am very underweight, and also like you, my GI looked confused when I mentioned it, specifically the sun issue, and he was supposed to specialize in Crohn's.  My extremities are very cold as well ( but I have Reynalds Syndrome, which probably isnt related to my Crohn's )  I have searched forum after forum for this, and no Cronh sufferers have mentioned it, other than the low-grade fever.  I see it mentioned on Lupus and MS forums, but that was it. but now I see two of you, and you are both in this forum.

Also, as my fatigue got worse, my other symptoms did not... (well, I got a bit more constipation), but the heat issue has been a perfect coloration.


----------



## hamster139

Ann Morgan said:


> Is heat or sunlight intolerance a part of Ulcerative Colitis ?
> I no longer can be in direct sunlight, even for a few minutes.
> When I am in direct sunlight I feel like there is a torch on my skin.
> Even when I am driving my vehicle with the window open and the
> sun hits my neck and arm it really feels super hot.
> So, here I am in Arizona and I cannot tolerate the sun whatsoever.
> I will now have to buy an umbrella and wear long sleeve shirts and a
> big funny hat ?:eek2:


No, I don't think it is.   At least I couldnt find it as a symptom on the internet.  Again, I just have this hunch its related to extreme fatigue in some strange, maybe indirect way.

I know how you feel.  I have basically become a vampire, and the second I go outside, all I can think about is... where is the shade?  Yikes, Arizona.


----------



## hamster139

edentenley said:


> Constant fatigue...which leads to increased irritability.  The fatigue is less when I'm on prednisone...but everything else about prednisone sucks.  Its so hard to explain to family  members and friends when you look normal otherwise...but are just so exhausted.


Yes, the fatigue definitely causes irritability.  I really hate that.  It has transformed me into an awful person at times.   

However, I have absolutely loved prednisone.  (and so does my wife) It just removes every symptom, all at once.  Whenever my doctor suggested a prednisone regimine,  my family would plan a trip, because they knew I would become a normal person, and my fatigue would dissapear.

however, the last two times Ive taken it, it stopped working, for no apparent reason.  It was depressing.  My GI was thinking I had built up a tolerance  

But after an 18 month prednisone vacation, my doc suggested it again.  I started a regimen today, 40 mg, and it is somehow working again.  Which explains why I am able to even type this much at this time of day.  We went out to dinner today, I didnt slouch or support my head with my palm even once.  I had perfect bowel movements.  I just cant believe that this is the same drug I took 18 months ago that had absolutely no effect on me.  Very puzzling.  I hope it continues... I would certainly like to do some traveling.


----------



## UnXmas

hamster139 said:


> Just a hunch.   I never saw heat intolerance or sun intolerance as a symptom of Crohns, and like you, I am very underweight, and also like you, my GI looked confused when I mentioned it, specifically the sun issue, and he was supposed to specialize in Crohn's.  My extremities are very cold as well ( but I have Reynalds Syndrome, which probably isnt related to my Crohn's )  I have searched forum after forum for this, and no Cronh sufferers have mentioned it, other than the low-grade fever.  I see it mentioned on Lupus and MS forums, but that was it. but now I see two of you, and you are both in this forum.
> 
> Also, as my fatigue got worse, my other symptoms did not... (well, I got a bit more constipation), but the heat issue has been a perfect coloration.




Temperature regulation problems are usually due to autonomic dysfunction. If not enough sweat is produced and blood vessels don't dilate properly, the body cannot cool down adequately. (Think about how, when someone's very hot they sweat and their face goes red - the sweat cools them down as it evaporates from the skin and the red face is due to blood vesels dilating so blood gets to the surface of the skin.) I think that's what happens in MS and other illnesses. But I can't see that it should happen in Crohn's. Does anyone know if Crohn's involves autonomic dysfunction??

Disclaimer - I've read about this a lot and doctors have told me about it, but I may well have got some things wrong, because the science behind it is complicated!


----------



## ChristieJP

hamster139 said:


> Just a hunch.   I never saw heat intolerance or sun intolerance as a symptom of Crohns, and like you, I am very underweight, and also like you, my GI looked confused when I mentioned it, specifically the sun issue, and he was supposed to specialize in Crohn's.  My extremities are very cold as well ( but I have Raynaud's Syndrome, which probably isn't related to my Crohn's )  I have searched forum after forum for this, and no Crohn's sufferers have mentioned it, other than the low-grade fever.  I see it mentioned on Lupus and MS forums, but that was it. but now I see two of you, and you are both in this forum.


This *IS* a really interesting topic . . . when my Crohn's symptoms are worse, I run unusually cold AND I have Raynaud's Syndrome AND I don't tolerate heat well!  Even before I was diagnosed or really sick, I stayed out of the sun as much as possible.  There is at least one study that shows more flares in IBD in hot weather conditions, so I know we're not crazy!  I live in Arizona, too - ha!  It's was funny last week when it was pretty unseasonably warm here in Arizona (low 90s) that I wasn't whining about being hot; I'm in a bit of a flare so I'm cold!  Perhaps my illness did some good by saving us money because we left the a/c off.    I think I would run cold all the time, but I had my ovaries removed due to endometriosis a while back, so I don't have the same amount of estrogen I used to (less estrogen = more body heat).  I'm pretty sure that helps me not be as cold as I could be.  Aren't we all complex?!

Whether because we're in the bathroom, on the couch, or intolerant to heat/sunlight, I bet people with IBD are among the least likely to get sun-exposure related skin cancers - ha!


----------



## hamster139

ChristieJP said:


> This *IS* a really interesting topic . . . when my Crohn's symptoms are worse, I run unusually cold AND I have Raynaud's Syndrome AND I don't tolerate heat well!  Even before I was diagnosed or really sick, I stayed out of the sun as much as possible.  There is at least one study that shows more flares in IBD in hot weather conditions, so I know we're not crazy!  I live in Arizona, too - ha!  It's was funny last week when it was pretty unseasonably warm here in Arizona (low 90s) that I wasn't whining about being hot; I'm in a bit of a flare so I'm cold!  Perhaps my illness did some good by saving us money because we left the a/c off.    I think I would run cold all the time, but I had my ovaries removed due to endometriosis a while back, so I don't have the same amount of estrogen I used to (less estrogen = more body heat).  I'm pretty sure that helps me not be as cold as I could be.  Aren't we all complex?!
> 
> Whether because we're in the bathroom, on the couch, or intolerant to heat/sunlight, I bet people with IBD are among the least likely to get sun-exposure related skin cancers - ha!


For me, the flares timing doesnt seem to be related to my sun/heat issue. It just kinda popped outa nowhere, and stuck.  And here I am, a vampire, when I used to love the sun.  I am sure my dermatologist is proud of me.

I really don't have a true persistent fever either.    It is a strange 'perceived' feeling of heat,  but it doesnt show up on the thermometer, and the sun magnifies it 10x.

Its a real puzzle for me.  But I feel better knowing I am not the only one.  And yes, balancing reynalds and this, and sleep issues is pretty complex.  I have to very strategically keep my core areas cool, and my extremities warm, and stay away from the sun.... and also... I need to expose myself to artificial light in the morning while I have cooling pads everywhere.  A very strange routine.


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## Spooky1

I also have Reynauds far worse since the menopause, and sometimes if I step into the garden on a hot day, my skin gets very itchy bumps immediately.  But I love a sunny day and I feel so much better when it's sunny.  I'm so pleased I'm not the only one that has these issues.  I thought it was just me.


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## wellen1981

Regarding issues with sunlight etc

My logical head would think that given there are specific areas of the gut related to specific vitamins and given that we can have damage anywhere in the gut... 
It's not a huge stretch of mind to think that if the gut flora is out of sync and adversely affected (and/or the gut wall is damaged) in the area of the gut that when acting normally deals with vitamin D absorption/generation (maybe a better way i could put that is promoting calcium absorption), then 

It seems plausible that suffers could have issues with being subjected to certain vitamins at the intake level.

Could almost argue it is working in the same way as the milk problem in many of us - eg arent lactose intolerant, but we cannot have milk unless lactofree while we currently have our illness.

I dunno call me a tin-foil hat wearer or a quack for thinking this way but seeing cause and effect and then learning a bit about the functions of the gut and its flora and where specifically certain vitamins are absorped it stacks up to me.


----------



## UnXmas

I've just finished a course of vitamin D supplements my GP prescribed after a blood test showed they were very, very low (I get sunburn incredibly easily so I always wear suncream when out in Summer, and even in Winter I wear a moisturiser with spf, plus the digestion issues). But my response to temperature hasn't altered one bit. And I've been through this process of very low vitamin D up to norrmal levels after a course of supplements twice before with no effects on my temperature problems then either. I wish getting rid of my heat intolerance was as easy as taking Vitamin D!


----------



## Spooky1

Unxmas, did your vitamin d give you diarrhoea at all?  I'm wondering if taking it is causing things to be more fluid and mucus like.


----------



## UnXmas

I have an ileostomy and it didn't make my stoma output any more watery than usual and it didn't cause high-volume output. These are the ileostomy eqivalent of diarhhoea, so, no it didn't cause it. Vitamin D shouldn't cause side effects as long as you don't take too much.


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## Ann Morgan

Over 95 percent of the bodies serotonin is found in the gastrointestinal tract. I just found out about this the other day. 

I have so much to learn about the gut and how it effects my health. It's "not all in my head" !  There really  is scientific proof for so many unanswered questions that I have.

Well, have to take my Vancomycin now. I am really irritated that I have this c-diff.


----------



## Roxymusic

During the 1970's to now, I have found the best way for me was extreme exercise (extreme meaning a couple hours of basketball and volleyball). I get an energy boost from this it has always appeared that helped even through extreme abdominal pain. Humira is now giving me some challenges with nodding off at times just about anywhere except on the motorcycle, my doctor prescribed prednisone (my most hated drug) 40mg for a couple of days for each dose of Humira. First loading doses had me laying in bed wondering where my life went (and they were work days) I have not missed any time since adding prednisone to the Humira routine. It is hard to say : stay active at something when a. you are in pain, b. you are falling asleep or c. you are so lethargic that you can't move but if you do not, you may be doomed to taking more pills to combat fatigue. I have over 40 years of Crohn's BS - fight it!


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## ChristieJP

I just wanted to add something positive (I tend to log on when I'm most discouraged, but right now I'm feeling upbeat!).  Last night my sweet husband was talking to his Dad on the phone and I heard him say, "Christie has been working really hard to pay attention to her body's signals and rest when she needs to and her mood has been really stable and positive even though she doesn't feel that great."  He sounded really proud and just to have him acknowledge the effort I put into having energy for the most important things and some left for him at the end of the day was an amazing encouragement for me.


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## UnXmas

I think you must have a much more mild fatigue, Roxymusic. Extreme exercise isn't possible with extreme fatigue.


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## Kit

Roxymusic thanks for the input, but I have to agree with Unxmas.  The fatigue we get can be from taking a shower and our body and brain shuts down.  I literally have had to shorten my shower routine at times due to not being able to think or function.  It is a balance for us to know when we can push a little and when we can't.


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## Spooky1

Kit, I know the feeling of only a short shower, or collapse in it.


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## UnXmas

My occupational therapist just put a grab rail into my shower. It's because of my balance problems mainly, but I'm sure it will also be useful for those times when my energy runs out. Or for lightheaded fainting episodes.


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## Spooky1

Mine got me a bench for over my bath for a safe shower.  It is really great as there is far less chance of me coming to harm.  I know exactly what you mean by lightheaded fainting episodes.  I love that only people on here know exactly what I mean.  The understanding from fellow Crohnies and colitis folk is what we all need.


----------



## Jeffgotcrohns

Anyone become so exhausted they can't stand or even move much? Right now I'm unable to stand on my own for more than a minute.


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## UnXmas

I felt like that after one of my surgeries, Jeff. I'd been extremely underweight before the surgery, then afterwards I developed ileus (paralysis of the digestive tract) which meant I couldn't eat so I had zero energy reserves and zero energy coming in. Even once I was home, it literally made my arm muscles (or lack of muscles) ache to lift clothes over my head to get dressed and I'd have to sit down and rest between the bathroom and the living room. It improved once I was able to get more food into me though.


----------



## Kit

I am sooo glad we have a forum to talk about this with people who understand!  As has been said before it is hard to describe to someone who hasn't had any experience with it.  May everyone have energy today to enjoy something wonderful in their day!


----------



## nogutsnoglory

I'm really happy to talk about this because I know most crohnies deal with fatigue at some point usually because of malnutrition or dehydration but I think I'm dealing with extreme debilitating fatigue unrelated to my crohns. I was diagnosed with fibromyalgia/cfs. I wonder if others here may have as a result of crohns had another illness like that activate. They think that chronic fatigue syndrome is an immune disorder as well.


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## Chall

I've recently be diagnosed with crohns. I've got it pretty mild compared to others. The fatigue is getting to me. Aching thighs is constant. I swear I'm worse of now I'm on meds! I originally went to the doctor with irregular toileting but was entering running and cycling events, now I'm on meds I've done nothing since November.


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## sehart717

Does anyone get prescribed any meds to help them with fatigue? I know this sounds extreme but I had a lady that was suffering from cancer and her doctor gave her a med for fatigue and I can't remember what it is but I am trying to find something that will work.


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## Ann Morgan

UnXmas said:


> I think you must have a much more mild fatigue, Roxymusic. Extreme exercise isn't possible with extreme fatigue.


I AGREE !

:thumright:


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## Ann Morgan

Spooky1 said:


> Mine got me a bench for over my bath for a safe shower.  It is really great as there is far less chance of me coming to harm.  I know exactly what you mean by lightheaded fainting episodes.  I love that only people on here know exactly what I mean.  The understanding from fellow Crohnies and colitis folk is what we all need.


I was visiting my sister in another state over the Christmas Holiday last year. She put me up in a nice hotel. I was actually in a handicapped room. The shower was made for handicapped folks. The tile in the shower and the tile in the bathroom were the same and at the same level ( no walking over the side of a tub ).  The shower floor was flat. It had bars to hold on to, if needed. It had a bench. And it had a hand-held shower head. I was in heaven !  I never thought a shower could be so nice. I had my choice of standing up in the shower and using the hand-held shower head, or I could sit down on the bench if I wished ( I sat on a towel on the bench ).  How weird that one of the best things on my vacation was a shower !:dusty:


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## Ann Morgan

I know that I could help myself feel better if I lost weight, ate properly and exercised. But I don't do it.  Why don't I want to help myself feel better. 

When I was in my 30's I lost a lot of weight, I walked every morning before work, I rode my bike every weekend and I was a vegetarian. I felt so good. I cannot remember how long I was able to maintain my good health, but I was so motivated and the motivation came from within myself, not from other people. It was a good feeling to accomplish what I did. I was so much stronger then, physically and mentally. I had my own apartment, a good job, a car and was very independent and confident.

But then........1992 Anal Fistulectomy, 1995 Laparascopic Cholestectomy, 2002 Rectal Abscess Surgery, 2007 Partial Nephrectomy, and 2009 another Rectal Abscess Surgery. 

And.....1996 I started to feel tired and old, 1997 I started to have diarrhea all of the time, 2001 Optic Neuritis, 2006 Migraines, 2007 Mental Health Breakdown.

Eventually there was more......Osteoporosis in my Lumbar Spine, Osteopenia in my neck, Arthritis in my Hips, Acid Reflux, Iron Deficient Anemia, High Blood Pressure, Ulcerative Colitis, Hypothyroidism, nodules growing on my thyroid, Major Depressive Disorder, Anxiety, B12 Deficiency and I have had problems with obesity for over 30 years.

I am currently taking 11 medications, two vitamins and one probiotic every day. I am only 54 years old. I just got done taking Vancomycin for C-diff. 

Why me ?


----------



## UnXmas

sehart717 said:


> Does anyone get prescribed any meds to help them with fatigue? I know this sounds extreme but I had a lady that was suffering from cancer and her doctor gave her a med for fatigue and I can't remember what it is but I am trying to find something that will work.


I've had modafinal, but the side effects weren't worth it and I quickly developed tolerance to it.

Codeine also gives me energry, even though it's supposed to be a sedative.


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## Spooky1

codeine gives me some energy for half an hour then I go into snooze mode, then I get moody when its trailing off.  So addictive too.  I hate my moods with them.


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## UnXmas

Codeine does make me feel calmer and more relaxed mentally, so maybe that's due to its sedative properties, but physically it makes it far easier to get up and do things. But maybe it's just because it stops the pain of all my body aches that makes me feel like I've more energy? But it works too well for me, now I'm addicted so I feel awful without it.


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## mrspecker

I'm on cocodamol and have trouble sleeping sometimes but have really bad fatigue been I bed all day and slept all day in pain I have ibd but still waiting for colonscopy to see which one cant wait to be put on meds and hopefully start to feel better all joints hurt and loud gurgling noises today


----------



## sehart717

UnXmas said:


> Codeine does make me feel calmer and more relaxed mentally, so maybe that's due to its sedative properties, but physically it makes it far easier to get up and do things. But maybe it's just because it stops the pain of all my body aches that makes me feel like I've more energy? But it works too well for me, now I'm addicted so I feel awful without it.


This does sound like you are having some physical and mental addiction, more mental than physical.  I used to feel that in order to do what i needed to do for the day I had to take a pain pill. I was so scared to be in pain and be unable to do things that I started to psych myself out and make myself believe I had to have it to function and it was helping me, but if i ran out of it it was impossible for me to get out of bed even. very scary stuff, talk to your doctor about it please. I don't want you to have the same issue i did. I am on methadone now, have been for two years as of 5/5/15 and it started with codeine.


----------



## UnXmas

My doctors are well aware of my addiction. It's just not a priority, given my other health problems. I think it's equally physical and mental. I do stop taking it sometimes, so I know I can, but I don't want to stop taking it altogether.


----------



## ChristieJP

I went to an amazing one-day training on chronic inflammation and one of the many helpful tidbits I took away was that gentle exercise (walking, yoga, stretching, tai chi, slow swimming, etc.) is ANTI-inflammatory, but hard exercise (training for a marathon, rock climbing) is PRO-inflammatory (here's a link that explains some of the studies in layman's terms).  Hard exercise does give adrenaline and some pain relieving hormones during and immediately afterward, which feel very good and can add energy, but at the same time, it adds to the inflammatory burden our bodies carry.  

My lifestyle has become one of as much anti-inflammatory activities, foods, etc. as possible.  I no longer run, I walk.  I don't usually climb the highest peak in the park anymore, I walk along the trail at the base of the mountain (when I have enough energy for those things!)  Even the sort of music we listen to can affect inflammation, amazingly!


----------



## UnXmas

I don't think hard exercise is an option for most people in this support group. 

Maybe there should be a separate group for mild fatigue sufferers?


----------



## Ann Morgan

Re: Codeine.  I took a prescription once of Tylenol with codeine and it did nothing for me. An orthopedic doctor at the time prescribed it to me for arthritic shoulder pain. After that I got a prescription for hydrocodone ( which I LOVE) but he only gave me a three month supply and no more than that. I call hydrocodone my "happy pills".  I am on no painkillers at this time except occassional acetaminphen, which does very little to help me.
Thanks for listening.  : - )    : - )


----------



## sehart717

UnXmas said:


> My doctors are well aware of my addiction. It's just not a priority, given my other health problems. I think it's equally physical and mental. I do stop taking it sometimes, so I know I can, but I don't want to stop taking it altogether.


I am glad that you let your doctors know. It is very hard to live with this disease and not take pain medicine. Doctors are usually very uncaring in this area. I just had one lecture me about how bad methadone is for crohn's and got my family getting on to me about it. What else do they want me to do? Be miserable all the time and really start hating life? I am sending support and healing thoughts your way!:hang:


----------



## Spooky1

Yep, I was a dihydrocodeine  addict.  I could get through a months supply in 8 days though.  I realised how bad it had got and decided I had to get off them totally.  Even codeine phosphate gives me mood swings.  Mind, heavy doses helped the diarrhoea a great deal and I felt little pain.  Not like now I must say.  Think my life is of a very low quality these days.  Sad really, but at least we can all identify with the chronic fatigue and lack of real activity in this thread.


----------



## UnXmas

I'm the same, Spooky. But the more codeine I take, the more my doctor prescribes for me, even though it's well over the maximum recommended amounts. I get a month's prescription every two weeks at the moment. But I have no bad side effects from them, and as you say, they help my stomach problems, so it feels wrong to see codeine as bad for me.

Though coincidently my doctor just left me a message saying we need to move to a different painkiller. We've been trying other painkillers, but all non-addictive ones, and also Tramadol but they didn't help, so now we will try stronger opiates. I was thinking of asking about Diazepam as I was given that as a painkiller while in hospital. I know that's addictive also.

I'm also getting the results of my x-rays soon to see if my spine is fractured and if that's one cause of my pain.


----------



## ColorsofHeaven

Hello, Okay I know I've vented before on fatigue in the past--more so when I was pregnant...hormones make you overally emotional. Now that I am not I am having some energy back. I was diagnosed with Crohns when I was 17.5 years old and I am now 30 years old. I have had two healthy children naturally and I currently have been in remission for many years. When I found out I had three ulcerations in my large colon and was bleeding internally I went on Pentasa. The medicine made me even sicker than the disease. I don't take medication currently. What works for me is I eat healthy, I avoid peanuts/PB, corn, coffee, alcohol, & soda (except rarely on special occasions-Holidays).   I take probiotics, pure olive oil (internal), pure grape seed oil/pure vitamin E oil (skin-external), probiotic yogurt/kefir, garlic (internal in combo with olive oil), and exercise at least 40 mins twice a week (speed walking on a treadmill). I have days where I am exhausted and others I have energy. The days I have energy I push myself to do as much as I can on those days. I have two children so I mentally push my body on some days to get up and do what a parent must do. It's hard, but I sometimes win the battle by forcing myself to do what I didn't think my body could do. I know in a flare up that might be a lot less possible, but in remission it is more possible. Stress is a huge factor and if you can let things roll off your back you will get a lot less sick-stress lowers the immune system causing more flare ups. It's not how much stress you have it's about your out look on that stress is. I guess as I get older I see it's not worth worrying about until it's time to act on it. Honestly, I find most stress is caused by others criticism who do not understand the fatigue with crohns. If you can also handle and accept the fact that others most likely will never understand it you will be better off. Also, if you are having yeast issues due to your crohn's inbox me I can help. I found a way to conquer mine. (Most yeast through out the body is due to antibiotics that a Dr. may have given to you not realizing it can't be given for crohns disease or due to your lowered immune system and the consumption of bad yeast.)


----------



## Ann Morgan

UnXmas: Wow. Give me the name of your doctor ! : - )   : - 0.   None of my doctors are too keen on prescribing me anything for pain. No prednisone. No hydrocodone. My Psychiatrist is only prescribing me the lowest dose of Clonazepam, for anxiety, each day. I sure would like more Clonazepam because it helps lessen my anxiety....and makes me feel good.  The only thing my Rheumatologist wants to do for my neck is (1) Physical Therapy, which was only temporary relief. (2) Now he wants to send me to a Pain Management Specialist for Botox shots for the left side of my neck. I know Botox has been around for a long time now, but I need time to think about it being injected into my body. And I would first want to make sure that the Botox would not have a drug in reaction with my other medications.


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## UnXmas

Ann - my doctor is wonderful! They have to be careful with addictive meds though. My doctor knows me - and my family - very very well. (Where I live is very rural - the local doctors know you not just as a patient. The chemists too. My chemist has even given me meds before I got the prescription from the doctor before now.)

I thought physio was wonderful too though. What is your rheumatologist hoping physiotherapy would do for you? It can really help. I was helped so much when recovering from paralysis, and I'm being referred again now to help with my pain and back/leg problems.

I've had botox in my bowel - had it done years ago. It didn't help but it hasn't done me any harm. You should try it.


----------



## Ann Morgan

Physical Therapy on my neck was $45.00 per visit and I went at least 12 times. In order to keep my neck feeling better I would probably have to have the PT on an ongoing basis. I must admit that having a young, handsome guy massage my neck was pretty nice !  Right now the pain in my neck is less than it was a few weeks ago. I carry most of my stress in my neck, head , jaw. My muscles are SO tight. I have had full body massages in the past and every massage therapist mentions my neck !  I have a huge "knot" near the bottom of the left side of my neck. I have very little mobility in my neck and they can't do anything, really, to make my neck move, but they can offer PT or Botox for pain. My shoulders have arthritis and pain too, so the shoulders and neck are connected and what a mess. Thanks for listening. Going to eat lunch now....oh, goody.....it's rice ( because my colon was NOT happy yesterday and I had 6 diarrhea BM's).   : - (


----------



## Kit

nogutsnoglory said:


> I'm really happy to talk about this because I know most crohnies deal with fatigue at some point usually because of malnutrition or dehydration but I think I'm dealing with extreme debilitating fatigue unrelated to my crohns. I was diagnosed with fibromyalgia/cfs. I wonder if others here may have as a result of crohns had another illness like that activate. They think that chronic fatigue syndrome is an immune disorder as well.


NGNG  I haven't been diagnosed with CFS, but I think my fatigue is not related directly to my crohn's.  My symptoms see to be under control, but I still struggle with fatigue.  How did they diagnose the CFS?


----------



## AirCooledChillerMech

New member here so please bear with me. (Not that computer savvy at 50 years young, LOL...))) Diagnosed with Crohn's April, 2008 but the fatigue is killing me. All my blood work, B-12 is normal or on the low end of normal but have absolutely no energy at all.


----------



## Spooky1

Welcome, and please know that this site is brilliant.  It's where we all come for understanding of what others are going through.  The people here do experience the same as you, and are helpful even if your family/friends have no real knowledge of what you're going through. The fatigue is a major problem for many of us.  We are the sort that would give anything just to live a normal, boring life, rather than feeling so ill and coping with very little in the way of everyday life.


----------



## Ann Morgan

Okay, it is 1:20am and I am still awake !
I can't get to sleep !
No wonder I am so tired !
: - (    : - (   : - (


----------



## AirCooledChillerMech

Spooky,

Thank-you.


----------



## Mehita

ChristieJP said:


> I went to an amazing one-day training on chronic inflammation and one of the many helpful tidbits I took away was that gentle exercise (walking, yoga, stretching, tai chi, slow swimming, etc.) is ANTI-inflammatory, but hard exercise (training for a marathon, rock climbing) is PRO-inflammatory (here's a link that explains some of the studies in layman's terms).  Hard exercise does give adrenaline and some pain relieving hormones during and immediately afterward, which feel very good and can add energy, but at the same time, it adds to the inflammatory burden our bodies carry.


That's really interesting. My son plays tennis on the JV team for his high school and he really, really struggled this year with fatigue - like couldn't even walk up the stairs kind of fatigue. As a mom, it's incredibly hard to watch this young body not be able to do something as basic as that. Thanks for sharing the article.


----------



## mrspecker

I do a little bit at weekend and.im totally wiped out couldn't get to sleep last night till 4am and iv slept on and off all day stomach bloated pain  gurgling joint pain x


----------



## edentenley

I went for a walk the other day, pushing my kids in a double stroller.  I used to be able to do this with no problem...  Well, this time I made it halfway through my normal route and was worried I wouldn't be able to make it back to my car!    I need to lose some extra weight (not a lot, just 10 pounds), but I have NO energy to do anything.  

I hate it!


----------



## mrspecker

I need to lose weight because I haven't energy to do much then wiped out really struggling  thanks for reply xx


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## UnXmas

edentenley said:


> I went for a walk the other day, pushing my kids in a double stroller.  I used to be able to do this with no problem...  Well, this time I made it halfway through my normal route and was worried I wouldn't be able to make it back to my car!    I need to lose some extra weight (not a lot, just 10 pounds), but I have NO energy to do anything.
> 
> I hate it!


Have the kids push you next time. 

Don't worry about 10lbs, that's not that much, and diet will affect your weight more than exercise anyway. Sometimes exercise gives an energy boost but sometimes you just need rest.


----------



## Kit

AirCooledChillerMech said:


> New member here so please bear with me. (Not that computer savvy at 50 years young, LOL...))) Diagnosed with Crohn's April, 2008 but the fatigue is killing me. All my blood work, B-12 is normal or on the low end of normal but have absolutely no energy at all.


Welcome!  This forum is wonderful to express our frustration with fatigue and this illness.  Feel free to ask questions and look for support.  We understand!!


----------



## Kit

edentenley said:


> I went for a walk the other day, pushing my kids in a double stroller.  I used to be able to do this with no problem...  Well, this time I made it halfway through my normal route and was worried I wouldn't be able to make it back to my car!    I need to lose some extra weight (not a lot, just 10 pounds), but I have NO energy to do anything.
> 
> I hate it!



I am with you!  And no energy means no motivation and it just cycles.  Sigh  Hopefully you can take shorter walks and know when you just can't walk that day.  I could use to lose a few pounds too, but no energy or motivation to get moving!  I am lucky to get the things done around the house I need too and take care of myself!


----------



## mackraslo

I apologize if this has been addressed in the previous pages, But I havent had the time to read the whole thread yet.  

Has anyone found anything that helps?  Specifically supplements, herbs, vitamins, and "natural" treatments?  Has anyone had any luck with Prescription medications?  

I have been fatigued for the past 2+ years, and I have only recently been suspected of crohns and waiting for a diagnosis.  I eat healthy, I quit smoking, I cut out caffiene except for green tea, and I exercise when I can(biking).  

I would love to hear from someone who has found something that has helped them.  Thank you, I really appreciate being part of this community.  All the best to everyone!


----------



## UnXmas

mackraslo said:


> I apologize if this has been addressed in the previous pages, But I havent had the time to read the whole thread yet.
> 
> Has anyone found anything that helps?  Specifically supplements, herbs, vitamins, and "natural" treatments?  Has anyone had any luck with Prescription medications?
> 
> I have been fatigued for the past 2+ years, and I have only recently been suspected of crohns and waiting for a diagnosis.  I eat healthy, I quit smoking, I cut out caffiene except for green tea, and I exercise when I can(biking).
> 
> I would love to hear from someone who has found something that has helped them.  Thank you, I really appreciate being part of this community.  All the best to everyone!


I've never found any natural treatments that help. Prescription codeine helps me a lot, but it is addictive. I've also tried Modafinil, which didn't help me, but does help some people.

Have you been tested for anaemia and other deficiencies? If you're underweight or losing weight, that can increase fatigue a lot too. So getting the right nutrition can help if that's an issue for you.

I know it's obvious, but good quality sleep is crucial. I can't function without a lot of sleep.


----------



## Kit

@mackrasio   I haven't found any real solutions except for trying to get enough rest/sleep (9-10 hrs a niight) so I can function when i need to.  Light exercise can help manage, but doesn't get rid of the fatigue.  (and by the way I am really bad about doing any.  Walking, yoga and Tai Chi are all I try when I am motivated to)  I really have to pace myself during the day with lots of rest breaks.  That all being said I ended up leaving my job due to not being able to keep up even with a short day.  

I wish I had more help for you, but I think everyone is individual in what helps them as well.


----------



## mrspecker

Hi kit don't u work now that's what I'm bothered about I'm on sick and have been since Feb iv been in bed all week no energy in worried iwill never be well enough to go bk to work it putting big strain on my marriage and family life  still waiting for diagnoses I'm so glad I found this site  don't feel so alone


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## Kit

mrspecker said:


> Hi kit don't u work now that's what I'm bothered about I'm on sick and have been since Feb iv been in bed all week no energy in worried iwill never be well enough to go bk to work it putting big strain on my marriage and family life  still waiting for diagnoses I'm so glad I found this site  don't feel so alone


It is so difficult making the decision not to work anymore, but I was achy all the time, fatigued, no social life and wasn't performing my job very well.  May manger and friend told me she would let me know when I wasn't doing what I needed to be doing at work.  She was going to help me find another type of job in the system, but I didn't have the energy or motivation to find one and keep working until I did.  Fortunately my husband has a good job and his salary can support us for now and he is a HUGE support for me.  I thought about disability, but all I have medically right now is me saying that I am fatigued and can't function sometimes. 

Hang in there and explore options as able!


----------



## mrspecker

Have u tried claiming pip if u work or don't work its not the condition it how it affects ur daily living u should claim it there website that tell u about it x


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## Kit

mrspecker said:


> Have u tried claiming pip if u work or don't work its not the condition it how it affects ur daily living u should claim it there website that tell u about it x


What is pip?  Do you have the website?  I live in the United States. Does that make a difference?  Thanks


----------



## mrspecker

Irs instead of disability personal payment not sure about usa Google it &#55357;&#56842;


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## mrspecker

Personal independence payment


----------



## UnXmas

PIP is only in the UK.

https://www.gov.uk/pip/overview It's a benefit which covers extra costs associated with your illness or disability involved in mobility (travelling, getting around outside) and/or daily living (taking care of yourself, e.g. washing, preparing food). 

Does anyone know if there's some equivalent in the US maybe?


----------



## sehart717

There is something here if we do not qualify for disability it is called SSI social security entitlement, its strictly need based and you can get it if you qualify for disability and if you don't. its just a little extra stipend to help. I am looking into getting it. Have already been denied once so this time I'm getting a lawyer. Last chance to try and get it I believe, we didn't qualify before because we had two cars in our family of 3. Big deal but to them it was like we were super rich.


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## UnXmas

That's different to PIP then. PIP isn't means tested, it doesn't matter how much savings/property/investments you have or how much you earn. The main benefits in the UK for people not healthy enough to work are means tested (but people can claim PIP as well if they qualify), I don't know much about them as I've never qualified, but I get PIP because I can't manage without carers (my parents).


----------



## UnXmas

Btw to keep things on topic, there's a Disability/Unemployment/Financial Difficulties Support Group

http://www.crohnsforum.com/showthread.php?t=51690


----------



## Ann Morgan

mrspecker said:


> I do a little bit at weekend and.im totally wiped out couldn't get to sleep last night till 4am and iv slept on and off all day stomach bloated pain  gurgling joint pain x


Wow, I have the same thing right now.
Can't sleep.
Bloated. 
Gurgling.
Joint pain.


----------



## Ann Morgan

AirCooledChillerMech said:


> New member here so please bear with me. (Not that computer savvy at 50 years young, LOL...))) Diagnosed with Crohn's April, 2008 but the fatigue is killing me. All my blood work, B-12 is normal or on the low end of normal but have absolutely no energy at all.


Welcome !
This site has been great for me and I hope it works out well for you too.
 :dusty:


----------



## mrspecker

Ann Morgan said:


> Wow, I have the same thing right now.
> Can't sleep.
> Bloated.
> Gurgling.
> Joint pain.


Do u have crohns iv got my colonscopy tmoz x


----------



## mrspecker

Ann have u been diagnosed with crohns I have my colonoscopy tmoz x


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## mrspecker

It has helped alot gotmycolonscopy tmoz hoping for diagnoses


----------



## Ann Morgan

mrspecker said:


> Do u have crohns iv got my colonscopy tmoz x


I have been sick since 1997 but I was not properly diagnosed until 2006. I have Ulcerative Colitis. Right now I take Questran 2× day and Lialda once a day and I just started taking Metamucil. Anyhow, I have been "tired" since around 1996. I don't know why I remember the specific year. That is almost 20 years of being "tired".  :-(


----------



## Ann Morgan

No one has posted on here in 10 days ?
I almost got heatstroke the other day ? Now I have been so terribly tired. No energy at all. I see my Endocrinologist on Wednesday. I want my blood tested.


----------



## KHCD5

That's a good idea to check your blood. I do so monthly myself to make sure my iron stores do not drop.

I get extremely tired as well, hard to tell if it is the medication or the disease sometimes...caffeine goes right through me and I think contributes to iron deficiency. Besides alternative ways for energy boost I don't have a lot of answers myself.

Hope you feel better.


----------



## Ann Morgan

KHCD5 said:


> That's a good idea to check your blood. I do so monthly myself to make sure my iron stores do not drop.
> 
> I get extremely tired as well, hard to tell if it is the medication or the disease sometimes...caffeine goes right through me and I think contributes to iron deficiency. Besides alternative ways for energy boost I don't have a lot of answers myself.
> 
> Hope you feel better.


Thanks !


----------



## sehart717

Yep anyone else find that their hemoglobin has a big effect on their energy? I also find that elevated SED rate levels and CRP make me more tired because of all the inflammation the body is fighting.


----------



## Kit

I wish I could give reasons for my fatigue, but I have no clue.  I just try to manage it by good planning and resting.


----------



## hamster139

Ann Morgan said:


> No one has posted on here in 10 days ?
> I almost got heatstroke the other day ? Now I have been so terribly tired. No energy at all. I see my Endocrinologist on Wednesday. I want my blood tested.



The problem with Extr. Fatigue is we tend to dissapear for long periods of time...    I know the heatstroke fealing for sure.  Just finished Pred Taper... always no fun.

I am actually going to see an Endo shortly.  But I am going to make sure that I have everything together before I see him/her.  I really want to have a thorough examination/blood panel, and need to know if anything is borderline.


----------



## Spooky1

Extreme fatigue?? omg, after 6 months on the waiting list I got to see my NHS gastro bloke, Steve Lewis, Derriford.  I explained I bleed a lot, but sometimes the blood just gushes out.  it's so bad, and I feel so ill.  He ordered 5 vials of blood tests, and gave me that form with another.  I said "and when will I see you again?".  He said, "I've written in 8 months time"  So I sat right back down in the chair and demanded a colonoscopy.  He was not amused.  Told me it will take 3 months.  I'm so tired, and physically incapable of using my muscles well, I struggle to get my hands into the kitchen sink to wash a mug out.  I cannot wash my hair cos I have no energy.

I have also been on pred for my Iritis (eye disease that's painful) and I still don't feel well.  I'm so exhausted and am despising gastro blokes who don't care about how much blood we are losing, nor want to investigate, nor care for how exhausted we are.  Life seems to get more exhausting with every year into the 2nd half of a century, and does anyone care? no.  that's the shock, just bloods?  omg, I really wish I could go to a country that has health care that does care.  Hard to do with no insurance and no one to help when too fatigued to live a life of ordinary standards.

I'm so sorry to all suffering.  I asked (as my nurse asked me to) could I have b12 bi monthly not every three months.  No!  Gastro bloke said one injection is enough to last a year.  No luck here trying to find health and energy.

I wish you all luck finding a cure for the diabolical disease.  Sooo tired and with no help from anyone.  no understanding either. At least we have each other.  I can't find understanding and empathy from anywhere else other than this thread.


----------



## hamster139

mackraslo said:


> I apologize if this has been addressed in the previous pages, But I havent had the time to read the whole thread yet.
> 
> Has anyone found anything that helps?  Specifically supplements, herbs, vitamins, and "natural" treatments?  Has anyone had any luck with Prescription medications?
> 
> I have been fatigued for the past 2+ years, and I have only recently been suspected of crohns and waiting for a diagnosis.  I eat healthy, I quit smoking, I cut out caffiene except for green tea, and I exercise when I can(biking).
> 
> I would love to hear from someone who has found something that has helped them.  Thank you, I really appreciate being part of this community.  All the best to everyone!


Welcome.  A few things.

Stimulants dont really give us energy... however, some stimulants can help some people deal with 'zombie' feelings.  I take vyvanse in the morning... so I don't drift off for the whole day. After I take it... I still lay down (like I always do), but I can do basic computer work.  Stimulants can sometimes give you the illusion of energy... but if you act on it... you'll often get sick or even more tired.  I still have to take drugvacations every month or so.

I also use light therapy... which can help with 'setting your internal clock' so you can sleep better at night.

And of course... there is the big 'P' (Prednisone).  It does wonders for me and many others, but of course, it's not meant to be a long term cure, and has a lotsa side effects and dangers.


----------



## Spooky1

@ Hamster, I think we responded at exactly the same time.  Yes, finding stimulants.  Omg, your so right.  Stimulants are a kind of fake energy and I feel they override the real health issue, kind of mask it.  I am on Steroid Eye drops for Iritis.  The taste down the back of my throat is horrible.  I think we all know about prednisolone.  Prednisone in US.  it's a fake energy, I'm sure it's actually no good, it hides the really physical illness and issues and makes us make believe we might be well.  However, steroids always cured my RA.  it made the Crohn's worse, I lose weight on pred.  Not good for a Crohnie.  My eye disease isn't responding too well to the drops.  So I'm a tad annoyed.  I don't have energy from the drops, not like swallowing.

Never hear of Vyvanse in the UK.  could you enlighten us others worldwide if you have something you feel helps.  I would give anything for energy.  sometimes, and it does go in phases, I'm completely disabled by the physical fatigue. It's as though the muscles are two sizes too small for the skeleton and I just need to sleep all day and night.  I'm ashamed of my lifestyle and rarely have anyone to help.  Not that I would be proud to have another human see my failings as an ordinary human.  I so loved sport when I was younger.  I'm a failure with no cure for the fatigue.  I always need someone, but if they don't understand through experience then they too see me as a failure.  I just want normal in my life.  Am seriously considering DIY FMT, and wanting away from this feeling and experience of life.  I did not choose Crohns.  So knackered.  Thanks all for being on this thread.


----------



## hamster139

Spooky1 said:


> @ Hamster, I think we responded at exactly the same time.  Yes, finding stimulants.  Omg, your so right.  Stimulants are a kind of fake energy and I feel they override the real health issue, kind of mask it.  I am on Steroid Eye drops for Iritis.  The taste down the back of my throat is horrible.  I think we all know about prednisolone.  Prednisone in US.  it's a fake energy, I'm sure it's actually no good, it hides the really physical illness and issues and makes us make believe we might be well.  However, steroids always cured my RA.  it made the Crohn's worse, I lose weight on pred.  Not good for a Crohnie.  My eye disease isn't responding too well to the drops.  So I'm a tad annoyed.  I don't have energy from the drops, not like swallowing.
> 
> Never hear of Vyvanse in the UK.  could you enlighten us others worldwide if you have something you feel helps.  I would give anything for energy.  sometimes, and it does go in phases, I'm completely disabled by the physical fatigue. It's as though the muscles are two sizes too small for the skeleton and I just need to sleep all day and night.  I'm ashamed of my lifestyle and rarely have anyone to help.  Not that I would be proud to have another human see my failings as an ordinary human.  I so loved sport when I was younger.  I'm a failure with no cure for the fatigue.  I always need someone, but if they don't understand through experience then they too see me as a failure.  I just want normal in my life.  Am seriously considering DIY FMT, and wanting away from this feeling and experience of life.  I did not choose Crohns.  So knackered.  Thanks all for being on this thread.


As far as Vyvanse, its actually an ADD stimulant, fairly mild.  So I have a feeling it will help more for those who have ADD and not help as much for those who don't... but again... it doesnt give me energy, it just kinda keeps me from staring into space for the whole day, and gives me a very slight motivation to complete some tasks. 

If you do the DIY FMT, let me know if it helps with the fatigue... if so, I'll do it in a new york minute.

I am going to try a few unorthodox methods to battle this in the coming months.   Its definitely a losing battle, but if you try 100 different remedies... and maybe 1 helps you in some capacity.. that is at least something.


----------



## Ann Morgan

Spooky1 said:


> Extreme fatigue?? omg, after 6 months on the waiting list I got to see my NHS gastro bloke, Steve Lewis, Derriford.  I explained I bleed a lot, but sometimes the blood just gushes out.  it's so bad, and I feel so ill.  He ordered 5 vials of blood tests, and gave me that form with another.  I said "and when will I see you again?".  He said, "I've written in 8 months time"  So I sat right back down in the chair and demanded a colonoscopy.  He was not amused.  Told me it will take 3 months.  I'm so tired, and physically incapable of using my muscles well, I struggle to get my hands into the kitchen sink to wash a mug out.  I cannot wash my hair cos I have no energy.
> 
> I have also been on pred for my Iritis (eye disease that's painful) and I still don't feel well.  I'm so exhausted and am despising gastro blokes who don't care about how much blood we are losing, nor want to investigate, nor care for how exhausted we are.  Life seems to get more exhausting with every year into the 2nd half of a century, and does anyone care? no.  that's the shock, just bloods?  omg, I really wish I could go to a country that has health care that does care.  Hard to do with no insurance and no one to help when too fatigued to live a life of ordinary standards.
> 
> I'm so sorry to all suffering.  I asked (as my nurse asked me to) could I have b12 bi monthly not every three months.  No!  Gastro bloke said one injection is enough to last a year.  No luck here trying to find health and energy.
> 
> I wish you all luck finding a cure for the diabolical disease.  Sooo tired and with no help from anyone.  no understanding either. At least we have each other.  I can't find understanding and empathy from anywhere else other than this thread.


You had to wait six months to see the Gastroenterologist and now you have to wait three more months for a colonoscopy !  That is just wrong !  :ymad:
It is so wrong to make you suffer any longer than you already have. You may need a blood transfusion if you lose a lot of blood ?  At one time I was giving myself B12 shots at home.  Then another time I went to a doctors office once a month for a year for the B12 shots. Now I just take B12 Vitamin over the counter from my drugstore. 

That NHS does not sound good. I saw many specialist doctors last year, including physical therapy. I had x-rays, ultrasounds, CT Scan and MRI and a DEXA bone scan. I had a colonoscopy. I had many, many blood draws. And I have prescription medications that I take on a regular basis. 

Just during the last two months I have seen my Primary Care Physician, my previous Gastroenterologist, a new Gastroenterologist, my Endocrinologist, had a stool sample, had a blood draw, had an ultrasound of my kidneys, was prescribed the Vancomycin for my C-diff, and I am seeing my Urologist next Wednesday. And I see my Psychiatrist next month. This may sound like a lot of doctor activity, but last year I was twice as busy !  Oh, yeah, and I saw my Dentist recently too.  :yfaint:


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## Ann Morgan

Spooky:  You spoke about needing help ?  I am disabled and I just turned 55 years old. I live in an apartment complex. I have to walk a very short distance to toss out my household trash into a large trash bin. I walk very slow and I walk hunched over ( limited mobility in my neck and I have shrunk two inches ) and so I have had at least three of my neighbors offer to take my trash bag to the large trash bin for me.Talk about embarrassing !  If I was 30 years older I would not be embarrassed for people to offer to help me, but I am only 55 !  People older than me offer to help me reach products on the shelves of grocery stores. And people are always opening doors for me. ( Sigh ). Every doctor or doctors assistant asks me "how are you" and the first word out of my mouth is "tired".     Everyone try to have the best week you can have.  And take care of yourself.


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## UnXmas

> prednisolone. Prednisone in US. i


Do you mean prednisone is the US name for prednisolone? Prednisone and prednisolone are the same except prednisone has to be changed by the liver into prednisolone (I think).


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## UnXmas

The NHS moves fast when it needs to. It doesn't have enough resources so it has to prioritise. I believe it's the best healthcare system, at least in theory, but I think it may be in practise too. I have constant tests, appointments, hospital stays, surgeries, and it costs me nothing and when I have energencies there is no wait at all. The only problem is when you're not an emergency or urgent, you can wait many months.

Spooky - is this the first gastroenterologist you've seen? The problem here is probably not the system but you having a doctor who doesn't recognise the urgency of your situation. Can you get a second opinion? Do you have a good GP? Your GP may be able to speed things along. Sometimes GPs can refer you for tests without a consultant, though many would not find that appropriate.  Your GP could also order blood tests, and if the blood tests show abnormalities, or if your symptoms are deteriorating or if you have got new symptoms since seeing this last gastroenterologist, all those things can be used by your GP as evidence you need faster tests and appointments and maybe get you b12 monthly too.

I have found a good GP vital, you need one to advocate for you until you find a better consultant. I never continue with a doctor I'm not happy with.

Additionally, if you are truly struggling to do everyday tasks, have you considered applying for PIP? https://www.gov.uk/pip/overview Though I would warn you that generally someone with Crohn's as their only medical condition would not qualify, and you need to have doctors who will support your claim. But let me know if you have any questions about it. It pays for any help you may need looking after yourself and/or getting around. Having help should help your fatigue and overall health.


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## Spooky1

I have a new young doctor due to mine retiring.  She doesn't have good words said about her.  My gastroenterologist left, but I know most the team there.  Derriford Hospital in Plymouth has a notorious backlog of patients, I think it's the top of the league for waiting times.  I know it's in the top 3 of failing hospitals.

Tomorrow I'm travelling up country to see about a house move.  I am only doing this due to the time it takes to get to hospital, snail about the carpark with everyone else looking for a parking place, wait up to 4 hours to see specialist then the long journey home.  I can't physically do it anymore, esp as the service and treatment is crap.  that's confirmed by other Crohnies I know in this area.

I do get DLA, UnXmas, fortunately.

next time I am gushing blood I will take photos of my loo and get into A and E.  They are obliged to treat someone at A and E.  I probably don't go there enough as it's such a journey and of course I am pretty knackered.


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## UnXmas

You're moving house to make it easier to get to hospital? It doesn't sound right that anyone should have to do that.  I'm glad you get DLA, it sounds like you need it. Have you been to A&E many times before? I'm sure you're already aware, that they can help with dehydration, or other complications of blood loss, and may be able to arrange tests for you, but they probably won't be able to help with long term treatment options. 

I hope you get some good medical care soon.


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## Kit

@Spooky!  Follow up with the physicians blood work and ask to see it! (our blood work in the US will tell us what the normal ranges are so we know)  Make sure they make a plan for what they are doing next, seeing you in 8 months is inexcusable.  So Sorry about the fatigue.  Hang in there and try to take advantage of good days, but don't over do it!  Hugs


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## hamster139

Ann Morgan said:


> Spooky:  You spoke about needing help ?  I am disabled and I just turned 55 years old. I live in an apartment complex. I have to walk a very short distance to toss out my household trash into a large trash bin. I walk very slow and I walk hunched over ( limited mobility in my neck and I have shrunk two inches ) and so I have had at least three of my neighbors offer to take my trash bag to the large trash bin for me.Talk about embarrassing !  If I was 30 years older I would not be embarrassed for people to offer to help me, but I am only 55 !  People older than me offer to help me reach products on the shelves of grocery stores. And people are always opening doors for me. ( Sigh ). Every doctor or doctors assistant asks me "how are you" and the first word out of my mouth is "tired".     Everyone try to have the best week you can have.  And take care of yourself.


I understand completely.  Its embarrassing feeling like a 90 year old in a 43 year old body.  When I go out, which is rare, I get into lots of embarrassing situations where others ask me for 'help' since I appear to be in normal health, and I'm quite tall.  But I can't really lift things, and I can't bend over... and I try to stand as little as possible, so it usually ends up bad.  

Taking out the trash takes a long time for me... I just pace myself.  I do manage to walk about 2 blocks every weekday so that I can pick up my daughter from school.   Its my only cardio, I do it very slowly, and about an hour afterwards, I am usually paying for it... but Ive worked that 'low' into my routine.


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## Spooky1

Well, the other thing that really annoyed me at the gastro appointment was that he asked to know what meds I was on.  when I mentioned that my gp would only allow me one loperamide a day he laughed out loud.  The GP said if one doesn't work then 8 a day won't either.  I asked him if he could have a word with her and he said no, it's not for him to dictate what she allows me.

So now I just buy as many as I can for myself.
but I do know to take it easy, I too feel 90 years old, can't walk far, can't stand for long, can't sit for long and get exhausted if people speak to me.  If only I could focus too.

Never mind, let's hope there is a cure somewhere along the line.  But thanks for your understanding all.   There's no one around to really know how it is apart from all of you.


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## UnXmas

Spooky - eight loperamide can definitely do more than one! (As I'm sure you know!) Before I had a stoma, I would take ten or more and that worked even better (though that's more than recommended). You really do need a better GP. It's also perfectly acceptable for consultants to suggest GPs make changes to a patient's medications, since the consultants are specialists. You could ask for a prescription for Lomotil, you can take loperamide and Lomotil together. Maybe your doctors would be happier about doing that than increasing your loperamide.

Being so underweight I don't have problems with people not recognising that I'm ill. Though they do think I'm anorexic. :ybatty:


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## Spooky1

Yes, people think I'm anorexic too.  It's a bit rude and hurtful, though at this age I bloody well put them right.  Just need to put my doc and gastrobloke right too.  I feel so offended that they don't treat me.  It's as though they want us to drop dead.  Really I should just name and shame those men at Derriford, they have absolutely nothing on the old hat docs of years ago.  I've been seen there for 30 years.  My god, their standards have fallen badly.

Does anyone on here know if we could, sort of, go on holiday to france or spain with our NHS card and get treated there?  I just feel like giving up on this country.  But thanks for the responses everyone.  If I don't have the medical world on my side I know you lot understand which helps just knowing you also go through it.


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## kellehbeans

Hi all,

I'm not sure really if I should be here or not because I am undiagnosed. However, I do know that I do suffer with extreme fatigue! Reading through this thread, I realise how much I can relate!

:ghug:


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## Hayz

Hey, I'm only recently diagnosed and have been suffering for awful fatigue for a long time now. I had only just stopped pushing myself, and have just began to Trust my body and will actually stay in bed when I'm feeling like I need to. Which can be a lot! I kinda feel vindicated now that I have a diagnosis, I've been chastising myself for feeling so 'lazy' but now I know better!! It is very hard to explain to people, and very hard for them to understand unless they are going through it, so I really appreciate reading all of your stories xx


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## Kit

Welcome Hayz and kellehbeans!  I hope this forum helps you! It at least lets you know that there are people dealing with extreme fatigue as well!


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## Kit

HI all,
It was a rough weekend, no energy for anything.  I always feel soo guilty when I don't have the mental or physical energy to do anything.  I was feeling better yesterday and today I don't feel too bad, but it is early!  Rainy day and I need to go to a meeting tonight! Have a wonderful day my friends and stop to look at God's beautiful creation.  (Even if it is raining like it is here!  hehe)


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## nogutsnoglory

I'm now trying cymbalta it helps with pain which may indirectly improve my energy. I'll report back on the progress.


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## sehart717

I just got prescribed Lomotil today had to get it from my hematologist, the GI doc told me it was bad and wouldn't prescribe it because it "masks symptoms" well no shit that is what I want. He said it doesn't treat the problem, well I am trying to cure the problem and to no avail. The Budesonide is total crap, tried taking it for 18 days, probably going to switch to prednisone, i have had 3 entyvio treatments and not working at all. I wish the doctors had to feel what we feel, if he did maybe he would care more about getting me better or making me comfortable.


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## UnXmas

Lomotil helped my symptoms quite a bit. I was very pleased to have my illness "masked" - it meant I didn't have diarrhoea quite so many times a day!


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## Ann Morgan

Anybody ever heard of Myers Cocktail ?  It is an intravenous nutrient mixture.  It contains certain vitamins.  I saw it on YouTube one day.  I was just wondering if this would be an acceptable treatment for fatigue. It probably works better than just taking over the counter vitamin pills ?  I also saw a video from two years ago on YouTube from the Dr. Oz Show about intravenous vitamins. A lady that was featured on the show has an IV infusion once a month, every month, and it is a cocktail of different vitamins. The show was not endorsing this treatment, just making it known that it was available and it might work for some folks.  The lady on the show did not say she had any certain physical illnesses that she was treating, but that she led a busy life and needed the boost of energy that the infusions gave her.  I am getting an infusion tomorrow, for the first time, but it is for my osteoporosis. It is some kind of drug called Reclast ?  I have osteoporosis in my lumbar spine and am a high fracture risk. I will be getting this infusion once a year instead of taking a once a week prescription pill for my osteoporosis.   Thanks for listening.


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## Ann Morgan

hamster139 said:


> I understand completely.  Its embarrassing feeling like a 90 year old in a 43 year old body.  When I go out, which is rare, I get into lots of embarrassing situations where others ask me for 'help' since I appear to be in normal health, and I'm quite tall.  But I can't really lift things, and I can't bend over... and I try to stand as little as possible, so it usually ends up bad.
> 
> Taking out the trash takes a long time for me... I just pace myself.  I do manage to walk about 2 blocks every weekday so that I can pick up my daughter from school.   Its my only cardio, I do it very slowly, and about an hour afterwards, I am usually paying for it... but Ive worked that 'low' into my routine.


Just a quick note.......so, I went to Sprouts Grocery Store for the first time in a long time today. I needed two items at Sprouts that a regular grocery store would not sell.  I am becoming a vegan so I also needed the soy milk. I like the soy milk that is in the refrigerator section, not the kind that is not refrigerated.  So, what do you know.......the soy milk I wanted was about 8 feet up on the very top of the refrigerated section for soy milk !  :sign0085: Go figure !  I had to ask a tall young man employee to get the milk for me (and then it even looked like HE had to REACH for it ).  Why on earth would they put any product up that high to where even a grown young tall man could just barely reach it ?      Thanks for listening.


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## Ann Morgan

sehart717 said:


> I just got prescribed Lomotil today had to get it from my hematologist, the GI doc told me it was bad and wouldn't prescribe it because it "masks symptoms" well no shit that is what I want. He said it doesn't treat the problem, well I am trying to cure the problem and to no avail. The Budesonide is total crap, tried taking it for 18 days, probably going to switch to prednisone, i have had 3 entyvio treatments and not working at all. I wish the doctors had to feel what we feel, if he did maybe he would care more about getting me better or making me comfortable.


The other day I was thinking about how little time my Specialists have to spend with me when I visit them. They are so rushed and they don't want to listen to what I have to say. Some of them are very good at controlling the flow of the doctors visit as to not offend the patient, but other doctors just have no bedside manners. Why is it so hard to find a good doctor ?  :voodoo:


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## Ann Morgan

Hayz said:


> Hey, I'm only recently diagnosed and have been suffering for awful fatigue for a long time now. I had only just stopped pushing myself, and have just began to Trust my body and will actually stay in bed when I'm feeling like I need to. Which can be a lot! I kinda feel vindicated now that I have a diagnosis, I've been chastising myself for feeling so 'lazy' but now I know better!! It is very hard to explain to people, and very hard for them to understand unless they are going through it, so I really appreciate reading all of your stories xx


Welcome:dusty:     I totally understand what you are talking about. My sister has many illnesses but she seems to be able to do so many things !  I have many illnesses too, but I am fatigued.  I don't get it.  She can walk a long way and pull weeds while on her knees in her backyard, spend hours running errands and going to thrift stores. She is always saying she is "tired", so I thought she meant she was "tired" all of the time like I was.  But then I find out that she is only "tired" sometimes. I thought she and I had the same type of "tired".  I went to thrift stores with her once for two hours and I was exhausted, and all the thrift stores were connected and located in a strip mall ( so no hopping in and out of the car ). I had to sit on a bench and rest !  Thanks for listening.


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## UnXmas

Ann - I'm getting the infusions for osteoporosis soon too. I have awful bone density and a fractured spine (and I am a lot younger than you!). I've had infusions of other things in the past, it's no issue at all, so long as you're ok with needles.


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## hamster139

Ann Morgan said:


> Anybody ever heard of Myers Cocktail ?  It is an intravenous nutrient mixture.  It contains certain vitamins.  I saw it on YouTube one day.  I was just wondering if this would be an acceptable treatment for fatigue. It probably works better than just taking over the counter vitamin pills ?  I also saw a video from two years ago on YouTube from the Dr. Oz Show about intravenous vitamins. A lady that was featured on the show has an IV infusion once a month, every month, and it is a cocktail of different vitamins. The show was not endorsing this treatment, just making it known that it was available and it might work for some folks.  The lady on the show did not say she had any certain physical illnesses that she was treating, but that she led a busy life and needed the boost of energy that the infusions gave her.  I am getting an infusion tomorrow, for the first time, but it is for my osteoporosis. It is some kind of drug called Reclast ?  I have osteoporosis in my lumbar spine and am a high fracture risk. I will be getting this infusion once a year instead of taking a once a week prescription pill for my osteoporosis.   Thanks for listening.


Havent heard about it... but I think its an absolute must to check for deficiencies. Its very important for all of us to try and 'fine-tune' our diet if we have any deficiencies at all.   And sometimes that does mean having to use IV injections if we can't properly absorb nutrients.

But the problem with Crohn's with Extreme Fatigue is that the fatigue resembles lots of other ailments.  So unfortunately, lots of things that help others with energy won't help us.  I haven't had any luck with nutritional supplements.. I wish I had.


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## UnXmas

Ann Morgan said:


> The other day I was thinking about how little time my Specialists have to spend with me when I visit them. They are so rushed and they don't want to listen to what I have to say. Some of them are very good at controlling the flow of the doctors visit as to not offend the patient, but other doctors just have no bedside manners. Why is it so hard to find a good doctor ?  :voodoo:


I'm lucky, my GP and my main surgeon spend ages with me. However, I had to go through a *lot* of bad doctors before I found them (and I still haven't found good doctors for all the areas in which I need specialists). Only downside is I wait for an hour or more each appointment with them. GP appointments here are given a ten minute slot. Because my GP spends enough time with her patients, there's no way she can see them for only ten minutes. I call before I leave the house to find out how late she's running, otherwise I'd be spending hours in the waiting room. I can't do that with my surgeon because the hospital is a long drive away; with him I just have to wait.


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## kellehbeans

Not sure if it's just me, but does anybody experience some real bad fatigue after a BM?? I literally had to lay down afterwards because my stomach was burning up,  and I just felt, so, so tired!


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## hamster139

kellehbeans said:


> Not sure if it's just me, but does anybody experience some real bad fatigue after a BM?? I literally had to lay down afterwards because my stomach was burning up,  and I just felt, so, so tired!


Im kinda the opposite.  Not that i get a boost of energy after a BM... but it kinda picks me up a little.  Or maybe its just psychological... since I generally feel much better in other ways after a BM.


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## kellehbeans

hamster139 said:


> Im kinda the opposite.  Not that i get a boost of energy after a BM... but it kinda picks me up a little.  Or maybe its just psychological... since I generally feel much better in other ways after a BM.



I'm not sure whether it is just because my body doesn't feel empty, and that drains me. No idea, but all I know is it makes me feel worse!


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## UnXmas

I know we've been discussing this on the Undiagnosed thread, but I might as well add here that before I got a stoma, it would take me an hour or more to empty my bowel. By the time I had my surgery it was taking three hours some days. Getting up and sitting down and straining and having to put gloves on and remove some by hand then getting up again sitting down and straining again and on and on and it *hurt* and yes, I was exhausted afterwards. Especially the times it happened in the middle of the night. But I would eventually finish and feel relieved and exhausted, other times I'd sleep on the bathroom floor for a bit because I knew I wasn't finished but it wouldn't come yet. 

(Can I mention again how happy I am to have a stoma now?)


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## kellehbeans

I cannot imagine how amazing you must feel with a stoma, especially after that! You definitely have been through the wars! I feel bad for complaining about 30-45 minute bathroom breaks!


----------



## Dippydale

Hi all, I've had Crohn's disease for 5-6 years and only recently has fatigue became seriously enough to affect me on a day to day basis.. Any symptoms fatigue related previously I could just man up and cope with. Recently I've found every muscle seems to weigh a tonne and picking up something feels twice as heavy as usual. Getting up to fast makes me light headed and concentration doesn't last long. I've recently had my first child and not being able to pick him up when really bad is mentally depressing. I wanted anyone's advice on how to combat extreme fatigue. I try eating and drinking things with high sugar for energy, I try sleeping but wake up more tired and unmotivated than before. Any more ideas anyone ???


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## Ann Morgan

hamster139 said:


> Im kinda the opposite.  Not that i get a boost of energy after a BM... but it kinda picks me up a little.  Or maybe its just psychological... since I generally feel much better in other ways after a BM.


The same thing happens to me, I seem to feel better after having a good BM in the morning. All of a sudden I am washing dishes or vacuuming my carpet !     :ylol:


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## Ann Morgan

I took a two hour nap yesterday afternoon. I was still tired when I woke up.  I guess I sort of rested/slept, but I WAS dreaming.  I couldn't figure out a specific reason why I had to sleep for two hours in the afternoon, I did not do anything different than my normal stuff.  This has happened before in the afternoons, occasionally.   

I was recently on jury duty for three days and at about 3pm in the afternoon I just lost all of my focus and concentration - - - but I had to try to be as attentive as possible because my decision in the jury room would be affecting a persons life ( it was a DWI case ). 

   Thanks for listening.


----------



## sehart717

Just had to withdraw from my college classes this summer. I finished one but I can't seem to stay awake or focused enough to do all the reading. This disease is so tiring and the pain is so distracting. Especially hate how it makes me not be able to give my best as a mom. Physically and emotionally


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## Kit

sehart717 said:


> Just had to withdraw from my college classes this summer. I finished one but I can't seem to stay awake or focused enough to do all the reading. This disease is so tiring and the pain is so distracting. Especially hate how it makes me not be able to give my best as a mom. Physically and emotionally


Soo sorry Sehart.  This disease zaps your energy and I feel for you.  Concentration is hard for extended periods.  I hope you can find a solution!  That being said sometimes we don't have the energy to be able to find a solution!


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## Kit

@Dippydale---I just try to pace myself and rest when I need to.  That being said, I don't work now, don't have children and don't have any urgent responsibilities.  Here are some suggestions but everyone needs different things.  Tai Chi is something I liked.  Slow movement and gentle, but 10-20 min is all.  Same for Gentle Yoga or walking for exercise.  But sometimes you just need to rest your body and mind.  (not necessarily sleep)   As for food, sugar and caffeine give you energy for a short time, but then you crash.   Eat healthy if you can and make sure you get lean protein and water.  Everybody is different in what they need, so you have to try things and see what helps.  Also just some days you will be really fatigued and need to adjust that day.  It is a lifestyle change unfortunately and motivation becomes an issue. (haven't figured out what to do about that yet)  I hope this helps.


----------



## Caitlin84

kellehbeans said:


> Not sure if it's just me, but does anybody experience some real bad fatigue after a BM?? I literally had to lay down afterwards because my stomach was burning up,  and I just felt, so, so tired!


For me I think its the intestinal cramping that can go with it. I can be totally wiped out after a trip to the bathroom. Plus, when my energy is super low, everything fatigues me-no reason this should be an exception I guess!


----------



## spingirl

If I exercise - I do find more energy after a while...but getting motivated to do it is another thing altogether.  If I can make myself do it - I tend to be in better spirits too.  Yes, the frequent BM's wipe me out. I sometimes think I may be dehydrated. I hate drinking plain water.  I've come up with a drink of club soda with splash of cranberry and some lime. I can get that down. Although they say bubbles are not good - I do it anyhow.  I am not sure how else to hydrate.


----------



## Spooky1

sometimes I have to head straight for bed after a BM.  it's as though all my energy zoomed straight down the loo, my legs ache and I feel weak.  I know how it is to cut class.  I could only ever study for a couple of hours per day and then it was in shorter sessions.  so part time degree study suited me.  I never manage full time anything.  I too have problems focusing.  It's awful when its when someone is chatting to you and all you want to do is fall asleep.  

At least we all understand.  It's hard to find others that can relate to what we suffer.


----------



## Sar

my fatigue has been the worse symptom for me. It started a year ago without any bowel issues so i put it off to stress or depression kicking in. But it continued to worsen so I eventually saw a sleep specialist. I did a sleep study and MSLT. it showed that despite normal night time sleep I still suffer from moderate daytime fatigue (I fell asleep on all MSLT naps within 9 minutes). He couldn't say what was causing the sleepiness but reassured me that this is not just being lazy! He said I would likely be diagnosed with idiopathic hypersomnia in the future. 

I'm not sure if what I'm experiencing is crohns related or if it's something else all together... I'm now having bowel issues but the fatigue kicked in long before the bowel issues. Do you experience fatigue only during a flare or during remission too? Has anyone else done a sleep study and MSLT? I was started on Vyvanse for daytime alertness. Has anyone else had experience with medication for daytime alertness? what was your response?


----------



## Kit

@Sar  As much as I can remember I didn't have as much energy as my friends, but I just pushed through it.  After being diagnosed with Crohn's it got worse.  I could no longer work an 8 hour day.  I would consider myself in remission with intestinal symptoms, but fatigue is still an issue.  I no longer work due to it.  I try to rest a lot.  I have never taken any medication for it and they haven't found an additional reason for the fatigue.  I just try to manage it and luckily I have a supporting husband.


----------



## Cody_1980

I was only diagnosed 5 weeks ago but have been symptomatic for 3 months and have been extremely fatigued the entire time.  It makes working extremely hard as I work 11 hour days.  When I get home I have NO energy to play with my 2 children.  It is very depressing.  I hope it will end soon or I will adjust to it.


----------



## Kit

@Cody  hang in there an hopefully if you get on medication that gets you into remission you will start getting energy back.  It is very hard to deal with and at some point you may have to rethink your lifestyle.  Take care you yourself1


----------



## Sar

It is hard to juggle between work and a life outside work, especially when you have severe fatigue. I had to cut back my hours at work and I'm applying for long term partial disability. I can only manage a max of three hours work right now. Otherwise I don't have the energy to even get back home. I agree that eventually lifestyle has to be looked at, once I put my health above my job, I felt such a huge relief.


----------



## Kit

Sar said:


> It is hard to juggle between work and a life outside work, especially when you have severe fatigue. I had to cut back my hours at work and I'm applying for long term partial disability. I can only manage a max of three hours work right now. Otherwise I don't have the energy to even get back home. I agree that eventually lifestyle has to be looked at, once I put my health above my job, I felt such a huge relief.


Thank you so much for this post!  I agree once I put my health above my job was a huge relief!


----------



## Agent X20

Just decided to join this support group... fatigue is a big issue. I have to have an "energy budget" for the day, so I don't start anything I can't finish.
However, things are a lot easier since I finished work and I sympathise with anyone who still has to go to work when colleagues (and especially bosses) don't understand the astonishing levels of fatigue we sometimes have.
Cheers, everyone.


----------



## Spooky1

i'm trying to get some energy together for a house move next Monday.  I started to sort things two months ago and i'm so wiped out all day, the fatigue is so exacerbated by stress.  I will do nothing for two months after i move, i swear.  Everything can stay in their boxes.  I'm too tired to cope really.


----------



## Agent X20

Good luck, Spooky.
The thought of everything involved in moving house is quite daunting.


----------



## Spooky1

Yep, i've totally overwhelmed myself physically and mentally.  This time next week though.....  I will rest.


----------



## Kit

Spooky1 said:


> i'm trying to get some energy together for a house move next Monday.  I started to sort things two months ago and i'm so wiped out all day, the fatigue is so exacerbated by stress.  I will do nothing for two months after i move, i swear.  Everything can stay in their boxes.  I'm too tired to cope really.


@ Spooky - I hope everything can go smoothly for you!  I agree moving sounds exhausting and daunting!  We have talked about moving a while ago, but the idea sounds well actually unbearable.  I hope the new home is good for you Spooky and brings you some peace and healing!

@Agent X20 - Welcome!  Thanks for sharing your insights and support!


----------



## Kit

Agent X20 said:


> Just decided to join this support group... fatigue is a big issue. I have to have an "energy budget" for the day, so I don't start anything I can't finish.
> However, things are a lot easier since I finished work and I sympathise with anyone who still has to go to work when colleagues (and especially bosses) don't understand the astonishing levels of fatigue we sometimes have.
> Cheers, everyone.


I agree I so have an energy budget as well.  I don't even like to plan little outings each day, I like a day in between.  Have you ever heard the spoon theory?  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ It is a good way to explain fatigue!  I love this article, but I cry every time I read it.  It is such a good description!


----------



## GracieLouhoney

:ack::ack:





Essieluv said:


> The fatigue is starting to affect my attention span. I cannot seem to concentrate on anything. I can't read for very long, the sentences get all jumbled. And it's so hard to partake in conversations....


I know exactly how all of you feel! I am so tired all the time that I just want to sleep. I can get up & do one thing & I'm completely done in! My husband tries to be understanding but it really doesn't get it, just worries himself sick over me!

I would like to join this group!


----------



## Spooky1

Yep, join the club.  Life is so exhausting I get very little done and feel so ashamed of myself


----------



## fuzzy butterfly

so agree, aching n tired all the time .. at the mo im at home waiting to start a new job, ( still weary doing nowt )which will be better for my mental health, as my old boss was the devil incarnate... but it will mean longer working hours n more traveling, so iv very long days ahead of me , but i dont care as i will be treated much better, like the human i am ,not something on the bottom of a shoe :mad2:
  i am hoping i'll manage the extra, no choice really , but at least i wont be as busy all day there, so that might counteract it a bit...:dusty:
keep hanging in there peeps..:ghug:


----------



## fuzzy butterfly

Spooky1 said:


> Yep, join the club.  Life is so exhausting I get very little done and feel so ashamed of myself


hey now spooky, dont you dare be ashamed , it sure as hell aint your fault hun.. now this is me telling you off :ylol: :hug::kiss:


----------



## Kit

Spooky1 said:


> Yep, join the club.  Life is so exhausting I get very little done and feel so ashamed of myself



It is hard!  We think that you can just push yourself to do things and that makes it worse and then you can't even get the everyday life things done.  I am so glad for this support group that understands and supports us in this journey.


----------



## Spooky1

Thanks for the telling off, lol.  I'm my own worst critic sometimes.  Would just love to have some normal energy and less of the physical and mental fatigue.

Yep, it's a great support group this.  I'm so pleased it's here, otherwise we would have no one understanding what we go through.


----------



## DJW

Question: looking for similar experience. 

I used to have a couple good weeks followed be a few bad. Now I'm luckyto have a few good days in a month.  I have no idea what changed. Blood work looks good (iinflammation markers continue to drop, not anemic, B12, are all looking good. 

Quite perplexed.


----------



## fuzzy butterfly

Spooky1 said:


> Thanks for the telling off, lol.  I'm my own worst critic sometimes.  Would just love to have some normal energy and less of the physical and mental fatigue.
> 
> Yep, it's a great support group this.  I'm so pleased it's here, otherwise we would have no one understanding what we go through.


 so true, i only wish i'd found it sooner, when times were very bad for me pre op, but im glad i did find it , it helps me a lot, i have learnt things i did not know, i hope i have been able to help n support others, n bring a little fun along the way, for with a laugh now n then things feel better i think . as for the telling off sometimes it's got to be tough love :ylol2: any time you need a gee up let me know 
 if you find some normal energy send a bit my way kid would ya..:hug:


----------



## Spooky1

It does help to have someone on here that makes us smile.  Some of the threads do give me a giggle, the rest is support and be supported.  Yep, I wish I had know of this site years and years ago.  Would have helped me through some hard times.
Thanks for being here everyone.


----------



## fuzzy butterfly

hi ye some threads are funny, i once spent an entire sun afternoon on the joke thread laughing out loud at some, sure cheers you up :ylol:
 you all take care now you here! :ghug:


----------



## Kit

DJW said:


> Question: looking for similar experience.
> 
> I used to have a couple good weeks followed be a few bad. Now I'm luckyto have a few good days in a month.  I have no idea what changed. Blood work looks good (iinflammation markers continue to drop, not anemic, B12, are all looking good.
> 
> Quite perplexed.


I hear you!!!  I don't really show any signs of inflammation but still get the fatigue!  (as you not anemic, B12ok and even Vit D looks good)
The elusive fatigue!  Constantly having to adjust my life for it.  sigh


----------



## DJW

I feel like I'm 80 years old.  Frustrating!


----------



## Mondowicked

My rheumatologist started me on some drug that is typically used for Lupus patients. He thinks that it may help if my fatigue is autoimmune related (as if it could not be...ha). It's called Hydroxychloroquine. It takes 3 months to kick in of course, so we shall see. Every little bit of hope helps though. Anyone else heard of this one?


----------



## Kit

Mondowicked said:


> My rheumatologist started me on some drug that is typically used for Lupus patients. He thinks that it may help if my fatigue is autoimmune related (as if it could not be...ha). It's called Hydroxychloroquine. It takes 3 months to kick in of course, so we shall see. Every little bit of hope helps though. Anyone else heard of this one?


I have not heard of this medication, but I hope it helps you!


----------



## Spooky1

I've certainly not heard of it so keep us informed.  It could be worth a try for us if you respond well.  Thanks for the info.


----------



## buttER

DJW said:


> I feel like I'm 80 years old.  Frustrating!


My parents have so much energy, I wish I was 75 years old and like them!


----------



## Kit

King of Orange said:


> My parents have so much energy, I wish I was 75 years old and like them!


I guess I am not the only one!  My parents are 77 and 78--- they can run circles around me!  My dad at 78 still runs.  Fortunately they understand my fatigue and are very supportive.  My husband is laid back and understanding as well.  I have tried not to compare myself to others, but it is hard.  Sometimes you just feel like you are lazy.  Sigh   :hug:


----------



## Eptima

I used to complain about fatigue to my specialist and he would just say, well, you've been very ill and you're taking strong medications, so it's not surprising that you're tired...  Which was very sympathetic but not very helpful! I can't remember the last time I didn't feel tired, but I'm well enough now to do most of the things I want to so I just cope. I try not to complain too much about being tired and achey - people try to help by telling me to rest but rest doesn't actually make me feel better and then I wind up frustrated and depressed because I feel so stuck. On the flip side, I feel like I shouldn't be seen to do too much fun stuff because I worry that my fatigue won't be taken seriously!


----------



## fuzzy butterfly

Hi all
im off to the docs on mon to see if i can get any help on my fatigue n joint pain. Im not holding my breath like !!!. Im just feelind so tired at the mo anything outside of work seems like to much hassle to do or be bothered with.
love n hugs to all


----------



## Spooky1

They should at least check your thyroid, Mandy. and good luck.  I always get the 'nothing we can do about that', especially with the fatigue and arthritis.


----------



## fuzzy butterfly

Ta  spooky I'm about to write my list of things I want checking, mite take a while 
Hope your doing well hun, love n hugs


----------



## Spooky1

Feeling drained and very nausic/pukey lately, hoping it will pass soon.  Sleeping days and nights also.  Just so tired.


----------



## Kit

so Sorry Spooky!  I hope you can find some relief soon.


----------



## hamster139

Has anyone here been able to 'conquer' constipation problems?   It seems like this time of year, its always the worst.... and it always coincides with the worst acheyness, foggy-headedness, fatigue, etc.  I can barely do anything at the moment.


----------



## Grant

Hi hamster139, Lactulose is often prescribed in UK (sorry not sure where you're based). But I find when I need something its a bit harsh. Magnesium Hydroxide is far gentler & when I've had strictures this has halped me out no end.
Best Wishes
Grant


----------



## Kit

I don't get too constipated, but fiber, water and metamucil.  Read up on metamucil to make sure it will be right for you.  So sorry  you are having issues.


----------



## Omnishredder

Hi i just recently became a member and when i saw this thread i was thankfully relieved to know that im not lazy and that i do have a crohns problem that goes along with having had a flare up (and likely got worse and worse because being in a care home and saying i need to see a doctor about a flare up and nothing done to help or understanding that i need an afternoon appointment was taken into consideration, which is reason to back up wanting to move forward from here because having my own place is easier than having to live where i have to do things at set times when people want them done, as i have to do things my way or it causes stress to a high level, in fact its why i have had the flare up as i constantly feel angry, a sign that the fight or flight mechanics are effective, leaning me even further to the flare up state) and i have the last few months felt really lethargic and want to sleep all day and night, may just hop to local walk in center and explain i believe i have a severe flare up issue with being constantly tired and that it would be easier to have some crohns medication, fresubin (high calorie drinks and food supplements) and iron tablets to help thoroughly deal with this issue properly and save the doctor who will see me time having to do anything because i have crohns and he or she would only need to check my medical history to see the proof, but hey thanks to all who actually input properly on this as i really was hoping to find answers to why im so tired but can be awake all night nearly at times


----------



## fuzzy butterfly

Hi n welcome. Im so sorry about your situation . It cant help as you say, as stress makes crohn's worse. If you do go to the walkin centre tell them that the regulations in the home are making matters worse. They maybe able to give you a letter to explain how this disease affects you. Which may help them to understand and give you some leaway to the routines.If poss ask them to do bloods to check all your vitamin and minerals levels to see if you need to boost any. Best of luck n best wishes


----------



## anitas.paul

Confused about whether i have ibs or ibd but so fatigued if i do get any sleep as soon as i wake i just want to go back to bed :/


----------



## DJW

la mierda said:


> Confused about whether i have ibs or ibd but so fatigued if i do get any sleep as soon as i wake i just want to go back to bed :/


Have you had any tests? (Blood work, scopes, etc.)


----------



## anitas.paul

A few over the years mostly the same basic test's repeated yet to find a gp or gi who is willing to let me have a pill cam or breathe test or that balloon scope thing not sure how i can push for those successfully


----------



## anitas.paul

Most doc's blame symptoms on stress never seem to realise that a lot of our symptoms actually cause the stress in the first place


----------



## fuzzy butterfly

la mierda said:


> Most doc's blame symptoms on stress never seem to realise that a lot of our symptoms actually cause the stress in the first place


Exactly so true


----------



## anitas.paul

8 hour's 35 minutes uninterrupted sleep on my sofa laying on my back didn't even hear my beautiful lady text me in the early hour's or my alarm going off woke around an hour after it


----------



## fuzzy butterfly

Nice sleep there! I had similar so that is really good for me these days


----------



## anitas.paul

Good morning all stopped taking amitriptyline since lastnight and feeling a bit more energetic its like weaning off cr@**ck though  hope everyone's ok


----------



## Spooky1

I think docs like to put the cause on us if they can't be bothered to investigate or treat us.  It's entirely unfair but it is the health that causes stress for the most part, little do the docs realise or care.


----------



## anitas.paul

Kind of feels like going through cold turkey a little bit think as long as I'm eating regularly and sleeping in between whatever side effects the amitriptyline caused are starting to wear off gradually feel a lot better than the start of this week and not feeling so angry finding it funny that I've got the giddy giddy shakes though lol


----------



## Marie23

I'm wondering if some of you have been diagnosed with fibromyalgia and/or chronic fatigue syndromes? I have both. As my disease got worse so did my fibromyalgia.  I ended up working part-time to being disabled.  I no longer have my colon but have chronic pain in my abdomen and Fibromyalgia that gives me pain everywhere else.

There are do many overlapping things wrong either me it's difficult to manage health,  or lack of it.


----------



## anitas.paul

I find a good argument is rather calming my bpm was 67 this morning slept pretty sound too lol


----------



## Christi

Though i should join


----------



## Kit

Marie23 said:


> I'm wondering if some of you have been diagnosed with fibromyalgia and/or chronic fatigue syndromes? I have both. As my disease got worse so did my fibromyalgia.  I ended up working part-time to being disabled.  I no longer have my colon but have chronic pain in my abdomen and Fibromyalgia that gives me pain everywhere else.
> 
> There are do many overlapping things wrong either me it's difficult to manage health,  or lack of it.


I have not been diagnosed with Fibromyalgia (no real symptoms/pain for that) but I have wondered if I have Chronic Fatigue Syndrome.  How did you get diagnosed with CFS and Crohn's?  I figured that if you have Crohn's they would say that is where the fatigue is coming from.  
I hope you find something that helps you!


----------



## Marie23

I was diagnosed with fibromyalgia by my OBGYN and then PCP almost 20 years ago. It was a year after finally getting my UC diagnosis. I was diagnosed with both at the Fibromyalgia and Chronic Fatigue Clinic at the Mayo Clinic a few years ago. 

You might have fibromyalgia and just don't know it. It's a syndrome and not a disease so use to be more difficult to diagnosis.  I suggest you Google it and discuss it with your PCP. I had FM flares along with my UC flares. That's why you might not realize it. My GI at Mayo's referred me to the FM & CF clinic. He was doing so to hopefully get me some more help with dealing with it. It has helped but there isn't a "cure". I already knew many of the suggestions they taught 3 other patients and our families in a 1.5 day class. It really helped my husband 's understanding. That alone was a huge help. I was there 3 days which included the diagnosing. 

Since starting the final flare from hell that preceeded the removal of my colon I have been in a constant flare of FM & CF. They along with the rest of my health problems have disabled me and I can no longer work


----------



## DJW

As if IBD isn't enough to deal with. 

Sending you my support.


----------



## Kit

I am sorry you can no longer work ( I am in that same boat). Thanks for the information though!


----------



## anitas.paul

Good morning bmi is dropping off 19.1 at the  moment wish my bp could say the same though lol hope everyone's  ok


----------



## fuzzy butterfly

Hi hows the cpap going  or have you mot started it yet. I tend to lose days these days lol. So not sure were u might be upto with


----------



## anitas.paul

Still awaiting results should be through by end of this month. Test was done on the 27th of January.  Will give it until around the 19th then phone my gp to find out if the results are in.


----------



## fuzzy butterfly

Ah ok good . Let us know how it went when you get results. I wasnt sure if it done over 1-2or more days..


----------



## anitas.paul

Test i had was an spo2 device so awaiting readings from that. Will let you all know in due course and I'm glad to know i have your support even if at times i wobble.   hope you're all well and nobody uk side got blown away by ingrid during the night.


----------



## fuzzy butterfly

My friend we all wobble now and then.. You always have my support here  :hug :


----------



## anitas.paul

Thank you Mandz


----------



## fuzzy butterfly

Your welcome love  like the Mandz


----------



## anitas.paul

Mandz or Mandykinz lol


----------



## fuzzy butterfly

Ha ha ha either like both


----------



## Spooky1

Think it might be Imogen, my family down in Cornwall are suffering the worst.  Think Mandy and I aren't too bad.  I mean apart from the extreme fatigue that is.  We are thinking of you and knowing exactly how awful extreme fatigue is.


----------



## fuzzy butterfly

Spooky.Hope your family are ok hun. Ye im ok bar the fatigue,like you. Oh for energy eh !!


----------



## anitas.paul

Weather's spectacular but a disaster hoping it settles soon and pray all are safe and sound


----------



## LemSat87

I've been having a hell of a time trying to get my energy back up.  I've been dealing with the fatigue for a few years now, but recently it's just been crazy.  I even took a week off from work to try and catch up on sleep and let my body rest, and I feel worse now than when I went out.  I almost feel like nothing will help


----------



## Marie23

Have you been evaluated for Chronic Fatigue or Fibromyalgia Syndromes? Using your time off to rest up sounds like a good way to go. Sometimes vacations can tire more than work!


----------



## fuzzy butterfly

Hi I have just been off work for a week on holiday leave, as I was just so tired. Like your self, still feel worn out. I take b12,iron and still feel like a wet dish cloth. 
In fact had b12 on Wednesday made not the slightest difference, nurse said my levels are in the 500 hundreds, quite high, so!! 
Take care n best wishes 
Mandy


----------



## fuzzy butterfly

Marie23 said:


> Have you been evaluated for Chronic Fatigue or Fibromyalgia Syndromes? Using your time off to rest up sounds like a good way to go. Sometimes vacations can tire more than work!


 Hi  I did an online fatigue test that came from the crohn's and Colitis uk website, according to that I have severe chronic fatigue, and should see my doctor.. I don't know what else she can give me. I am going to bring it up with my Gi next month tho, not holding my breath though :yrolleyes:
Best wishes Mandy


----------



## DJW

Ive done the test and now have my own team of professionals working with me. 

I see a homatologist, psychiatrist, and therapist. 
Im getting a sleep study done. 

My GI says fatigue can be a problem for some people even in remission.


----------



## fuzzy butterfly

Hi Dave, I sleep ok for the most part just an odd night that I don't. I do have a long working day, up at 5.30am an hour traveling  do 8hr shift then an hour back,  home around 6pm, so I guess that doesn't help . 
I have not heard of a homatologist? Could you enlighten me please. 
Best wishes to you on your sleep study  hope it can be of help to you. 
Mandy


----------



## Spooky1

I don't think many doctors bother looking for another reason for the extreme fatigue, they seem to suggest it's Crohn's related.  The NACC mention chronic fatigue as a very high percentage when conducting surveys on how Crohn's impacts on the lives of sufferers.


----------



## fuzzy butterfly

Ye i think your right spooks . We gotta suck it up n get on wi it i guess


----------



## DJW

fuzzy butterfly said:


> Hi Dave, I sleep ok for the most part just an odd night that I don't. I do have a long working day, up at 5.30am an hour traveling  do 8hr shift then an hour back,  home around 6pm, so I guess that doesn't help .
> I have not heard of a homatologist? Could you enlighten me please.
> Best wishes to you on your sleep study  hope it can be of help to you.
> Mandy


A hematologist is a blood specialist. They deal with disease and conditions of the blood.  (Includes leukemia and such)


----------



## fuzzy butterfly

Ah yes I know now, it was the spelling you had put homatologist by mistake


----------



## Kit

@Mandy-thanks for sharing the about the UK Crohn's and Colitis Fatigue survey.  I haven't had a good monitor of my fatigue.  

@DJW  Thank you for the comment "My GI says fatigue can be a problem for some people even in remission"  because that is certainly the case with me.

Just a note.  I have noticed with my fatigue that I need to balance my activities and not do so much to keep energy for the things I want to do.   If I plan things it is every other day ( and not for a long period of time) and when I am home I will do little things sporadically throughout the day with rest in between.  Some days are better than others.  If I overdo it I will take days to rest and then get back on a light schedule.  I am fortunate that I don't have to work and I have the luxury of planning my time.


----------



## fuzzy butterfly

Glad if it was helpful Kit. I pretty much do the same if i have time off work i do a busy ish day then a rest day. We just got to do what we can and not push ourselves to far. Try and keep an even keel as it were. 
Best wishes hun


----------



## Spooky1

Kit, that's a lot like me.  I just get too exhausted to keep at anything.  Life is a tad disappointing but i'm used to it now.


----------



## DJW

fuzzy butterfly said:


> Ah yes I know now, it was the spelling you had put homatologist by mistake


My auto correct stopped working. Im not sure what im doing with some words.


----------



## fuzzy butterfly

Oh join the club D. auto correct is useful...i would be lost without it sometimes ...


----------



## Kit

Spooky1 said:


> Kit, that's a lot like me.  I just get too exhausted to keep at anything.  Life is a tad disappointing but i'm used to it now.


Yes I am getting better at being used to it too.  I realize that I will always have to modify what I do and thankfully have a very supportive husband!!


----------



## Marie23

I like to warn others about fibromyalgia and chronic fatigue as I think I pushed myself or as said above, sucked it up too much after my UC diagnosis.  Pacing and not over doing things on days we feel better helps. I find when I have a day with more energy I do too much and pay for it for days afterwards. 

While there isn't too much doctors can do, medicine wise, to help us it might be good to have the diagnosis in your medical records. Your other doctors should know about them plus if you ever become disabled it is good to have all of your health problems on record. I take some medications that help with several health problems. Who knew an antidepressant would hold back my daily migraines? When my GI asked about my PTSD, after my j-pouch surgeries, he put it the reasons why in my medical records. That perplexed me until after he referred me to an IBD specialist at the Mayo Clinic. There is a big mind gut connection. I  also have depression and general anxiety. PTSD is a kind of anxiety. In other words I am a mental mess along with all of my body's illnesses and syndromes. 

I keep trying as am determined to improve my health. Giving up is hard to do wit an ileostomy! :runaway:


----------



## Linnie

Hey guys, have been reading through a lot of this groups posts, I can see a lot of people with the same sort of things as me, mainly the foggy head, not being able to remember things and finding it hard to have conversations because you cant think of a word that you want to use.

I have had pretty much everything you can think of test wise done, even a sleep test all of which come back normal. 

My Dr really wants to put me on antidepressants to help combat the fatigue, I am very hesitant to go on any drugs but am finding it harder and harder to function like this.

Has anyone had any successes in combating the fatigue naturally? I went to a dietitian once and she told me that I cut out too many foods... Seriously.. If I ate those foods I would not only be tired, but also cramping up..

I would appreciate any advice


----------



## Bufford

I came across this group from a previous thread.  I see I am far from alone.  Chronic fatique has been with me for as long as I remember.  When I had to work the fatique factor made mornings living hell.  Nothing worse that waking up in the dark and driving to work in the dark when my body is screaming for more sleep.  It only exasperated the Crohn's.  Once I had the big one that forced me to have the operation that left me on the bag I retired.  Life has been much easier to cope with since.  At least I can sleep in until I see daylight.

Still it is not easy, the spring jump to Daylight saving time is something I never get used to until the clocks go back in fall and the lost hour is returned to me.  I never could understand the desire for less light in the morning for more light in the evening.   Late sunsets are like a guest that overstays their welcome, for I enjoy the night as much as the day.  There is nothing like the soothing onset of evening after the long day.


----------



## AJC - Australia

Hey Everyone - i thought I would post this - hope it helps someone…

fatigue has definitely got worse for me … lately i have been taking guarana, it is plant based….check it out…..it doesnt affect me like caffeine does, if i drink coffee(for example) i need to go to the loo straight away…for me, not so with guarana….i take it as a powder in a smoothie with a banana and coconut water each morning and after lunch….i hope it helps someone else as it has to me.

the other path i went on with fatigue was looking at the liver function…..worth looking at, it may be your liver, if you are on medications like infliximab or immune suppresants…your liver might be labouring JUST ENOUGH to slow you down…i know mine is, from infliximab for ten years.

Another thing worth looking at is, if you have taken cortisone for long periods (i did, every day for 8 years) , and then you got off cortisone, then your body may not be producing enough cortisol….the only way they can really test this is a 24 hour urine sample and compare the levels of cortisol in your urine to a normal persons….if you dont produce enough cortisol they can try and stimulate your body to make it with heavy vitamin c injections….or prescribe like 0.5mg of cortisone daily. 

Another thing worth looking at is your stool sample….and how much fats you are absorbing……often fatigue can be simply malnutrition…i know my stool sample showed i was absorbing 20% of the fats i was eating…so 80% of the fats are passing into the stool, which is why i am so THIN……60kg for a male 5'10 is pretty thin, but i was at 45kg when i was properly sick 20 years ago.

3 monthly B12 injections are a must, if you have had the terminal ilieum removed.
B vitamin tablets and iron are important.

peace love and rainbows


----------



## Spooky1

I was unaware that Guarana could be bought as powder.  Coffee goes straight through me too.  Also I was on steroids for 9 years straight (isn't Kelp/iodine supposed to help?).  I also cannot absorb any fats whatsoever.  We sound a great deal alike, but the fatigue is still there.  Talk about being exhausted, omg, for a cure?

Do your muscles physically fail to function too?  Even my eyelids and blinking is on the slow side.


----------



## Charliemaus

Could I join this group please? Have Crohns, been on Humira for 9 months and I'm struggling with horrendous fatigue. Eyesight getting worse, joint pain. Not sure if it Crohns or I'm just getting old! Lol X thanks


----------



## Kit

Charliemaus said:


> Could I join this group please? Have Crohns, been on Humira for 9 months and I'm struggling with horrendous fatigue. Eyesight getting worse, joint pain. Not sure if it Crohns or I'm just getting old! Lol X thanks


Of course! It is always nice to get support from people who feel the same way and understand extreme fatigue.  I hope you can find some comfort in these posts.


----------



## fuzzy butterfly

Welcome charliemaus...
Sure you can join us knackered lot here.. 
Tired or done is our middle names ..lol
Hope you find us helpful and friendly. 
Best wishes


----------



## anitas.paul

Hi all do wonder if some of the symptoms I'm getting could be due to antipsychotic use and something called dystonia due to have an mri next week so will get that over with make an appointment with doctor and mentionbit to him he's gonna think I'm a hyperchondriac lol hope you're all doing well


----------



## anitas.paul

Had my mri scan today now awaiting results


----------



## Christi

So tired i could sleep for two days


----------



## anitas.paul

Would do anything to even get to sleep between the breathing restriction and joint aches sleep seems to elude me this place i am currently living in isn't helping much. Apart from that I'm still very happy and looking to the not too distant future.


----------



## snarf1033

Hi everyone new to forum and first post appreciate any insight.  I read through most of the posts on this topic and this is by far the most helpful and insightful thread I have read.  It is nice to read that others are experiencing the same issues I do with Crohn's.  I was diagnosed a year ago and have tried numerous methods to try and beat this.  My main issues I am facing is extreme exhaustion and upset stomach.  I feel like every food I eat isn't getting processed properly which is the reason my energy and weight is low.  I am 40 years old 5'11" and weight 150 lbs.  I used to weigh 185 lbs.  

 My GI wants me to try Humira but my wife and I are so worried about the side effects namely cancer.  I know it says this is a rare side effect in children and young adults but how could you not worry.  With my concern he also recommended that I could try 6MP and see if that works.  Not sure which way to go on this.  All I want is energy so I can function at work and play with my kids.  Any insight would be appreciated.


----------



## Kit

Hi Snarf1033, welcome.  Deciding what types of medication to go on is tough.  I have been on Cimzia for years and still struggle with fatigue.  I am considered in remission now with intestinal symptoms.  I have never taken 6MP so I don't have any experience with it.  

As regards to the fatigue, I just learn to plan in rest times and have learned my limitations some.  But that being said I have better days than others in regards to fatigue.    

Continue to ask questions and we will help as much as we can.  But we are definitely here for support!


----------



## Ann Morgan

I noticed that some folks say that they just do a little bit at a time, as to not stress themselves and to save on their energy.  That is what I try to do and it works for me.  Who has done a sleep study ?  I have been sleeping horribly for quite a very long time.
Thanks for listening.


----------



## anitas.paul

Hi and a very good morning to you I've been awaiting a sleep study for a while now as it was suspected that i may have sleep apnea did a sp02 test at a hospital a couple of months ago and was referred on to by my gp to a sleep study clinic. Not heard much since so will mention to him at next appointment though currently being investigated for other things so one thing at a time. Thankfully though i have someone who keeps me going and brings alot of happiness into my world so even when thing's seem dismal she's always there to make me smile and i wouldn't change her for the world.


----------



## DJW

Ann Morgan said:


> I noticed that some folks say that they just do a little bit at a time, as to not stress themselves and to save on their energy.  That is what I try to do and it works for me.  Who has done a sleep study ?  I have been sleeping horribly for quite a very long time.
> Thanks for listening.


I've just completed a sleep study.  I have sleep apnea.
Last night was the first with a CPAP machine.
A night full of dreams (REM sleep) and no am headache.
This could be a game changer for me.


----------



## Kit

I haven't done a sleep study.  Have good nights and bad nights.  I definitely dream a lot though!


----------



## Ann Morgan

DJW said:


> I've just completed a sleep study.  I have sleep apnea.
> Last night was the first with a CPAP machine.
> A night full of dreams (REM sleep) and no am headache.
> This could be a game changer for me.


I will be seeing my Primary Care Physician in May. I think I will ask him about a sleep study. I have not slept well for years. A previous Psychiatrist gave me Lunesta and I took it for quite a while. I would never take it again, too many side effects. A dangerous drug as far as I am concerned.


----------



## anitas.paul

Good morning to all I'm still awaiting my sleep study tests i don't wake particularly cranky just tired like I've had no sleep though I've managed from 6 to 7 and a half hours most nights.


----------



## DJW

Ann Morgan said:


> I will be seeing my Primary Care Physician in May. I think I will ask him about a sleep study. I have not slept well for years. A previous Psychiatrist gave me Lunesta and I took it for quite a while. I would never take it again, too many side effects. A dangerous drug as far as I am concerned.


I hope you get some answers.


----------



## Ann Morgan

DJW said:


> I've just completed a sleep study.  I have sleep apnea.
> Last night was the first with a CPAP machine.
> A night full of dreams (REM sleep) and no am headache.
> This could be a game changer for me.


What is that CPAP machine like ?  Does it make a lot of noise ?  If it makes a lot of noise how do you sleep well ?  It doesn't make you feel claustrophobic  wearing it over your face ?


----------



## durwardian

Vivid dreaming is sometimes dopamine related. Too much dopamine causes the runs, as do the blocker meds for dopamine. But it is interesting to see how the neurotransmission and communication between brain and body are working to ruin our health, and usually caused by earlier infections, bugs, but mainly medications or hormones. The birth control pill will be next on the chopping block if you ask me. Then all this Vitamin D crap, since they don't realize until recently that they are totally messing up the thyroid and hormone household with all this vitamin D and calcium supplement garbage. It is amazing how much we can screw up the body trying to fix things. This stuff is a patch on a leaky boat, and it is sinking, and they are blind to the giant hole where the water is rushing in.


----------



## Ann Morgan

durwardian said:


> Vivid dreaming is sometimes dopamine related. Too much dopamine causes the runs, as do the blocker meds for dopamine. But it is interesting to see how the neurotransmission and communication between brain and body are working to ruin our health, and usually caused by earlier infections, bugs, but mainly medications or hormones. The birth control pill will be next on the chopping block if you ask me. Then all this Vitamin D crap, since they don't realize until recently that they are totally messing up the thyroid and hormone household with all this vitamin D and calcium supplement garbage. It is amazing how much we can screw up the body trying to fix things. This stuff is a patch on a leaky boat, and it is sinking, and they are blind to the giant hole where the water is rushing in.


My Endocrinologist takes care of my thyroid and my bones ( obviously she has TWO specialties ? )    I take Levothyroxine every day and I also have nodules on my thyroid. Every 6 months I see my Endocrinologist and I have an ultrasound of my thyroid. I even had a biopsy once. I have a blood test every 6 months to check my TSH. I get a bone density scan every year and I have even had one Reclast infusion for my bones ( I had joint and muscle pain for a month after that ).  

So many things can cause fatigue that no one is ever going to figure it out. I haven't slept well for years, I have to sleep in a recliner because of hip arthritis and bilateral rotator cuff syndrome. I have thyroid problems. I take medications that warm me of dizziness and drowsiness. And UC can cause fatigue too.  

I started to feel "tired" 20 years ago ( 1996 ). Back then I went to my doctor and said "why am I am 36 years old and I feel like I am 96 years old ! ". One year later I started having the chronic diarrhea ( 1997 ). But I wasn't diagnosed with UC until 2006.   : - (


----------



## Grant

My latest blood results are showing my red cells lower than normal. No visible blood in BM's. So if i'm bleeding its from higher up.
Feeling very lethargic & listless & a little worried tbh.
Rgds
Grant


----------



## ronroush7

Grant said:


> My latest blood results are showing my red cells lower than normal. No visible blood in BM's. So if i'm bleeding its from higher up.
> Feeling very lethargic & listless & a little worried tbh.
> Rgds
> Grant


Hi, Grant.  I hope the doctor can get you on the right set of meds soon.


----------



## leloupaccroupi

snarf1033 said:


> Hi everyone new to forum and first post appreciate any insight.  I read through most of the posts on this topic and this is by far the most helpful and insightful thread I have read.  It is nice to read that others are experiencing the same issues I do with Crohn's.  I was diagnosed a year ago and have tried numerous methods to try and beat this.  My main issues I am facing is extreme exhaustion and upset stomach.  I feel like every food I eat isn't getting processed properly which is the reason my energy and weight is low.  I am 40 years old 5'11" and weight 150 lbs.  I used to weigh 185 lbs.
> 
> My GI wants me to try Humira but my wife and I are so worried about the side effects namely cancer.  I know it says this is a rare side effect in children and young adults but how could you not worry.  With my concern he also recommended that I could try 6MP and see if that works.  Not sure which way to go on this.  All I want is energy so I can function at work and play with my kids.  Any insight would be appreciated.



I'm about to start remicade tomorrow and honestly a similar thought has been plaguing me, and ahs always been a major worry even if it's 'just a rare side effect'. The pharmacist and my GI were able to help shed some light on this situation, not only is an increase of 4 hundred's of a percentile (6 in 100,00 up from 2 in 100,000) but this rate is observed during clinical trials of people that typically have failed other medication in advance. Much like there is no definitive answer to what is causing Crohn's within us, there is not concrete study that shows it is in fact biologic treatment that causes cancer, but because some of the test subjects have contracted it during their trials, it therefore has to be included in the list of potential side effects.

That small of a risk is certainly something that outweighs the potential damage that could be done to your GI tract should your disease go untreated. That small of a risk is still scary ( im one of the 2% that developed acute pancreatitis from Imuran so naturally im apprehensive and anxious) but if your GI thinks you'll benefit from it you likely will 

Sorry about the novel

Hope this finds you well!


----------



## Kit

leloupaccroupi said:


> \
> 
> That small of a risk is certainly something that outweighs the potential damage that could be done to your GI tract should your disease go untreated. That small of a risk is still scary ( im one of the 2% that developed acute pancreatitis from Imuran so naturally im apprehensive and anxious) but if your GI thinks you'll benefit from it you likely will


Thank you for sharing your findings!  Just to let you know I also developed acute pancreatitis from Imuran (or at least that is what I think it was, severe pain and stopped taking it), but I have been on Cimzia (another biologic) for  5 years without any complications as of yet.


----------



## hamster139

Has anyone here tried LDN? (Low Dose Naltrexone).

It appears a bit tricky to dose right... but it has a great track record with Chronic Fatigue and Crohn's.   I've just started it a few days ago... on about 2mg/day and its giving me quite a boost after 2:00 pm.... ( before 2:00, I just feel the same.)  I am finding myself pacing back and forth... even wanting to stand-up... and I am not crashing from my effort.   Its too early to tell for sure... but it seems to be helping both my Crohn's and Fatigue and muscle pain from fatigue.

some info:
http://curetogether.com/crohns-disease/treatments/
http://curetogether.com/chronic-fatigue-syndrome/treatments/

A really long thread from fatigue sufferers about its ups and downs:
http://forums.phoenixrising.me/index.php?threads/low-dose-naltrexone.292/


----------



## ronroush7

I believe there is a subsection in the forum here on LDN under the section Treatment.


----------



## hamster139

ronroush7 said:


> I believe there is a subsection in the forum here on LDN under the section Treatment.


Thanks, I just joined it.  I don't see anybody in both the extreme-fatigue and LDN group.  Hope to see more.


----------



## ronroush7

Best to you.


----------



## Ann Morgan

Grant said:


> My latest blood results are showing my red cells lower than normal. No visible blood in BM's. So if i'm bleeding its from higher up.
> Feeling very lethargic & listless & a little worried tbh.
> Rgds
> Grant


I was anemic a few years ago. I took an iron pill supplement vitamin every day. I even had to have a blood transfusion in 2009. My hemoglobin is fine now and I no longer take the iron pills. I have had the B12 shots in the past. I now take Vitamin D3 and B12 each day, I don't know if it really helps or not. I have not slept well for years and I sleep in a recliner because of my hip arthritis and also bilateral rotator cuff syndrome in my shoulders. I took Lunesta for sleep a short while back, but the side affects are so dangerous. I still have not asked my PCP about a sleep study, I get so weary of all my doctors visits. I see several Specialists already. Everyone have a great weekend. : - )  :Flower:


----------



## ronroush7

Have a great weekend, Ann.


----------



## mackraslo

Hello,

I just started a relevant thread about high-dose thiamine (Vitamin B1) and fatigue.

http://www.crohnsforum.com/showthread.php?p=943384#post943384

It might be of interested to someone here. I would have just posted it in this thread but I totally forgot.

Anyways, Thanks!


----------



## jcashen87

At work feeling real tired today. My muscles just don't function like they used to at all. My arms get tired from typing for too long. I used to walk over 10 miles a day at work. Now I barely want to come in to sit at my desk all day. The past month is the first time I have been feeling this level of fatigue, I have had my GI symptoms be the worst they ever were and was real low in iron. I hope that eventually, the supplements get my Iron up enough to end this extreme fatigue!


----------



## Twbuto

For me Iron Supplements didn't do the trick,
Every 6 weeks, or so, I get iron infusions, my
Doc wants 21% iron saturated,,normally I'm 
6-12%  Good iron means good energy , for me


----------



## jcashen87

Twbuto said:


> For me Iron Supplements didn't do the trick,
> Every 6 weeks, or so, I get iron infusions, my
> Doc wants 21% iron saturated,,normally I'm
> 6-12%  Good iron means good energy , for me


I was at 6% transferrin Saturation and they don't want to give me the Iron Infusion. They say because my HGB rose into the just barely acceptable normal range that I don't qualify. I think Kaiser here in Northern California wants to save some money on me honestly. 

The Iron pills might be working on me a little bit but i do not feel like myself at all yet. I hope that my GI will request i get the iron infusion since my PCP just thinks im stressed or Bi Polar lol


----------



## Kit

jcashen87 said:


> At work feeling real tired today. My muscles just don't function like they used to at all. My arms get tired from typing for too long. I used to walk over 10 miles a day at work. Now I barely want to come in to sit at my desk all day. The past month is the first time I have been feeling this level of fatigue, I have had my GI symptoms be the worst they ever were and was real low in iron. I hope that eventually, the supplements get my Iron up enough to end this extreme fatigue!


Just a note.  When my iron was low I had an abscess and fistulas.  When they removed the part of the colon that was the problem my iron levels are more normal now.  Just a thought to look into and I am so sorry you are having to deal with the fatigue!  I will tell you my iron levels are normal now, but I still struggle with fatigue.  I have just learned to pace myself and rest a lot!


----------



## MeLee38

Ugh, I feel everyone's frustration. I am waiting on another specialist consult and surgery. I too suffer from an abscess and fistulas, and I find when it flares up I am extremely exhausted and struggle with even simple daily tasks.  I think it is my body telling me to rest, so it can try and fight the infection.  Wish you all the best


----------



## jcashen87

Kit said:


> Just a note.  When my iron was low I had an abscess and fistulas.  When they removed the part of the colon that was the problem my iron levels are more normal now.  Just a thought to look into and I am so sorry you are having to deal with the fatigue!  I will tell you my iron levels are normal now, but I still struggle with fatigue.  I have just learned to pace myself and rest a lot!


Thank you for your help. I am undiagnosed but have been dealing with GI problems my whole life. Last 5 years extreme pain as food passes through area around and below belly button. Mucus, sometimes blood in stools. Inflammation showing on tests and blood levels dropped. One week I get my scopes done so hopefully if there are complications needing surgery I can get it figured out quick. In the last 3 months I've had fevers 5 times, and extreme fatigue set in. It's been a blessing to find this forum as I have been suspecting an IBD diagnosis and there's tons of great people and info here.

Thank you all


----------



## Marie23

jcashen87 said:


> At work feeling real tired today. My muscles just don't function like they used to at all. My arms get tired from typing for too long. I used to walk over 10 miles a day at work. Now I barely want to come in to sit at my desk all day. The past month is the first time I have been feeling this level of fatigue, I have had my GI symptoms be the worst they ever were and was real low in iron. I hope that eventually, the supplements get my Iron up enough to end this extreme fatigue!


My fibromyalgia always flares along with GI flares.


----------



## Iroquois_guineapig

Everything is just drainging the life out of me.. if I wake up at 6 am I'll be on my way to the bathroom by 601 and immediately following a bm of any degree im more tired and ready for sleep right about the time I flush.. i have a demanding life with little time for myself and time i do have I spend begging for comfort.. from asacol to mercaptopurine and remicade infusions.. all treatments ive had done work like salt on a slug for just a few weeks then its like soakin matches in gasoline..ive had better..not perfect..but better symptom relief with cannibus alone.. I may not be in remission because of daily symptoms but I have not had a flare up in almost a year.. after two surgeries and more steroids and meds I can remember the only thing id like to know is how can I conuteract the fatigue?? I keep myself awake through it to the point of exhaustion and hallucinations because I simply do not have the option to sleep.. im desperate enough to try a new bad habbit but would like options of a higher legality.. anyone know a useful substitute for caffeine?


----------



## MeLee38

To help fight fatigue and brain fog I take a B100 complex vitamin, 4000 iu's of Vitamin D and 1200mg of Omega 3-6-9 every morning.  If I forget to take them I am extremely sluggish.   Also, I found when I started, it took a few days to build up in my system before I  felt the full effect.   I also try to hold off on my cannabis relief until later in the day whenever possible.  It helps with my appetite and helps me relax and sleep, but can make me lazy and fatigued if I start it too early in the day. I try to wait until mid-afternoon to use that relief method. Best of luck!


----------



## ronroush7

Iroquois_guineapig said:


> Everything is just drainging the life out of me.. if I wake up at 6 am I'll be on my way to the bathroom by 601 and immediately following a bm of any degree im more tired and ready for sleep right about the time I flush.. i have a demanding life with little time for myself and time i do have I spend begging for comfort.. from asacol to mercaptopurine and remicade infusions.. all treatments ive had done work like salt on a slug for just a few weeks then its like soakin matches in gasoline..ive had better..not perfect..but better symptom relief with cannibus alone.. I may not be in remission because of daily symptoms but I have not had a flare up in almost a year.. after two surgeries and more steroids and meds I can remember the only thing id like to know is how can I conuteract the fatigue?? I keep myself awake through it to the point of exhaustion and hallucinations because I simply do not have the option to sleep.. im desperate enough to try a new bad habbit but would like options of a higher legality.. anyone know a useful substitute for caffeine?


Have you had blood work done?  Are you anaemic?  Do you take b12/iron?


----------



## Kit

@Iroquois_guineapig--  I am so sorry about your fatigue.  Unfortunately the only solution i have found is pacing myself and that means I don't do half as much as I would like to do.  Forcing myself to keep moving along just makes it worse and I need days to recover.   I sleep 9-10 hours a night.  Basically I have had to rethink my life and things I want to do.  I don't do as much outside the home and rest a lot when I am home.  Prioritizing becomes way more important.  This may not be the answer you want , but I have been trying to make it work.  Iron, B-12 and Vit D are really good to check.  I take Fish Oil, Vit D and a B complex everyday too.


----------



## meganshealthjourney

Hi Everyone! I am new here. Currently undiagnosed, but one of my worst symptoms is extreme fatigue. Not "I wish I could take a nap at 2pm in the afternoon" fatigue, but sleep 10 hours and then cannot stay awake at work all day. I am too tired to work, to clean the house, to function.

Tests so far:

CBC: normal
Ultrasound: normal
B12 deficiency
Vitamin D deficiency
Elevated inflammation markers in c-protein reactive test
Colonoscopy/endoscopy completed 1/30/17 (yesterday). Normal, waiting on the results of the biopsies

Symptoms:
Daily nausea, bloating, severe abdominal pain and cramping in the upper left abdomen and around the belly button which worsens after eating, chronic mouth sores, vomiting at least once a week, regular bouts of 7+ days of constipation followed by violent diarrhea, complete loss of appetite, loss of nearly 20lbs since Nov. 2016 (I am 5'1, 155lbs), fever/chills.


Doing what I can to work toward a diagnosis. Doctor hasn't prescribed anything for the fatigue, which is one of the biggest hindrances to my quality of life. Any recommendations are appreciated!


----------



## ronroush7

meganshealthjourney said:


> Hi Everyone! I am new here. Currently undiagnosed, but one of my worst symptoms is extreme fatigue. Not "I wish I could take a nap at 2pm in the afternoon" fatigue, but sleep 10 hours and then cannot stay awake at work all day. I am too tired to work, to clean the house, to function.
> 
> Tests so far:
> 
> CBC: normal
> Ultrasound: normal
> B12 deficiency
> Vitamin D deficiency
> Elevated inflammation markers in c-protein reactive test
> Colonoscopy/endoscopy completed 1/30/17 (yesterday). Normal, waiting on the results of the biopsies
> 
> Symptoms:
> Daily nausea, bloating, severe abdominal pain and cramping in the upper left abdomen and around the belly button which worsens after eating, chronic mouth sores, vomiting at least once a week, regular bouts of 7+ days of constipation followed by violent diarrhea, complete loss of appetite, loss of nearly 20lbs since Nov. 2016 (I am 5'1, 155lbs), fever/chills.
> 
> 
> Doing what I can to work toward a diagnosis. Doctor hasn't prescribed anything for the fatigue, which is one of the biggest hindrances to my quality of life. Any recommendations are appreciated!


You might need iron or b12 but make sure to ask your doctor.


----------



## Ali29

Welcome Meaganshealthjourney!  I was where you are 4 years ago.  Severe pain, nausea after eating, along with many other issues.  I am at almost 20% weight loss, has your doctor prescribed anything for the nausea or have you looked at some of the natural ways to combat the nausea?  Without Phenergan, I would never be able to eat.  I struggle to keep my weight at 100.

Hopeful your biopsies will shed some light!  Good luck!!:ghug:


----------



## Kit

@Meganshealthjourney  Welcome to the forum and I hope you can get a diagnosis soon so you can get on a treatment plan.  So sorry about the fatigue. It is a very debilitating symptom.  Ok two pieces of information as far as I know.  A vitamin B12 deficiency can cause fatigue and I think a Vitamin D deficiency can as well, so please make sure your physician is getting those addressed.  Low Iron can as well, so make sure that is checked.  I also try to get enough sleep and take breaks. Some days are better than others.  Everyone is different so you will have to listen to your body and plan as you can.  I don't plan to go out of the house everyday.  I will every other day and only for 2-4 hours.  I avoid activities in the evening too.  But this is what I found out has worked for me.  

I would suggest you keep a food and water diary to see if you can find any triggers for worsening symptoms.  Most IBD patients go through a stage where they find out what foods seem to make symptoms worse.  Also keep a bathroom diary including how many times a day and what type of stool.  Share this with your physician to give more information. 

As for nausea, I use mints and ginger ale to help that.  I have also found that if I haven't eaten for an extended period of time I can get nausea.  Sometimes just a little food can help.  

These are strategies I have found help me, but everyone is different.  Good Luck on your journey and we would love to hear how you are doing.


----------



## mackraslo

Has anyone had relief from their fatigue from Antidepressants? My Doctor gave me a prescription to help my depression and quit smoking, Wellbutrin (bupropion) but after reading reviews online..(ya i know, silly) I am having trouble convincing myself to try it. I just fear that it will make me worse or give me more issues, I just cannot go through anymore awfulness. It could really help me, but damn my mind is stubborn. 

I plan to try it tomorrow morning. Just wondering if anyone had any advice or input. Thank you.


----------



## nogutsnoglory

Anyone else completely bedbound/housebound from their fatigue?


----------



## Glockola

Yes most definitely. Been like this for about a year now. Life feels worthless and now just trying to survive day by day. Also my doctor hasn't prescribed anything for the fatigue.


----------



## Ali29

Absolutely!!  Almost 3 years now, mentally it is crushing.  I try and watch funny movies.


----------



## kenvh

JoFowler said:


> Yes, if you click on it in my post, there is a proper explanation, but basically a medication that gets administered through an IV, for me every 8 weeks.  It is used for moderate to severe Crohns - I have it in small bowel and had a perianal fistula and abscess when I was diagnosed in Sept 2012.


How did they see ur crohn in small bowel? With CT scan?


----------



## nogutsnoglory

Glockola said:


> Yes most definitely. Been like this for about a year now. Life feels worthless and now just trying to survive day by day. Also my doctor hasn't prescribed anything for the fatigue.


They should do some tests to get to the bottom of what is causing it and if nothing is found they should trial stimulants like adderal or ritalin or narcolepsy meds like Provigil which can help some people.


----------



## Glockola

nogutsnoglory said:


> They should do some tests to get to the bottom of what is causing it and if nothing is found they should trial stimulants like adderal or ritalin or narcolepsy meds like Provigil which can help some people.


Yes most definitely,. I had the exact thing in mind also provigil is none addictive. 
Thank you so very much for very helpful advice.


----------



## hamster139

Hi All.  Just wanted to update on my progress fighting the extreme fatigue.  

After getting progressively worse for 10 years straight, I've made significant improvements over the last year.

Two things that have helped:

1) Pacing using a heart rate monitor.  Info here: https://www.facebook.com/groups/ME.CFS.HRM/

2) Low dose Naltrexone (1.5 mgs per day).

The pacing with the heart monitor has helped me stop crashing.  The LDN has helped with sleeping and brain fog. 

I still have the same old intolerance to exertion, but having an 'alarm' that goes off when I go over a threshhold has been a lifesaver to stop the crashes the following days.  And after I stopped crashing... I could realistically investigate other things that might help.


----------



## Ali29

That sounds like a good idea - I could do the hear monitor!!


----------



## Kit

Thanks for the info hamster!  I have to pace myself all the time.  It is the thing that helps me the most.  Spoon Theory is my favorite explanation to people!


----------



## Glockola

Anyone been put on adderall or methylpenidate or similar stimulants for treating their chronic fatigue that comes with intestinal disorders? I have a severe case. 

I can barely function and I think I'd much rather be put on a low dose just to be able to function, stay employed and provide for my family. 

Anyone out there can offer advice or experience regarding this form of treatment?


----------



## Rainbowchaser

Interesting!  I hope someone has information on that.  Do you have a “sick” feeling with the fatigue or does that happen separately?  When I have flares I have such an intense influenza/food poisoning/hangover style with the fatigue.


----------



## Sophabulous

Rainbowchaser said:


> Interesting!  I hope someone has information on that.  Do you have a “sick” feeling with the fatigue or does that happen separately?  When I have flares I have such an intense influenza/food poisoning/hangover style with the fatigue.




I get that too! I told my GI recently that I always feel like I’ve just got over the flu. I can get out of bed and do things but it’s very taxing, and I just have a low grade ache and sickly feeling all the time. I actually made a GP appointment yesterday to see if anything can be done as all my bloods for iron, B12 etc came back normal.

So frustrating!


----------



## Spooky1

I haven't tried anything for the fatigue.  I just have to fail at getting things done.  It's such a problem with this Crohn's.  I would do anything for energy.  Not tried stimulant energy drinks as I have an issue with caffeine.  Good luck to you though, Glockola.  Let us know if you find something to try and also how it works.  Thanks.


----------



## Rainbowchaser

I am on a 50mg prednisone taper and had to stop tappering @ 45mg due to symptoms starting up.  The prednisone healed the abscesses, nausea, vomiting, fatigue within 3 days!  I am waiting on my rheumatologist now to discuss starting biologics.  GP says the prednisone is not a safe choice for long term.  I hoped to avoid biologics for another few years but I am finally starting to feel better!  The fatigue and ‘sick’ feeling is finally eased off.

Hope you guys find something that works for you too


----------



## Crohn2357

In my experience thiopurines (azathioprine and 6mp) can also cause fatigue. 

From what I have read on the forums, reducing the dosage and taking the drug just before the bed (instead of halving the dosage through morning and evening) might help with this side effect.


----------



## Spooky1

Hi, Qante, I must look up nootropicboost.  Never heard of them, but desperately need to improve my memory.  I will look them up and see if they are over the counter ones.


----------



## Sophabulous

Qante said:


> When I was suffering from chronic fatigue, my doctor prescribed me nootropicboost . These are natural pills that improve memory, help to stay motivated and cope with lack of sleep. As far as I know, they are absolutely safe for human health and don't cause dependence.




Hi Quante,

They sound great but I’m also struggling to find them. Would you be able to post a link at all?

Thanks in advance [emoji4]


----------



## Glockola

The fatigue sucks so bad. Anaemia is probably the main cause in many people. 
Even mild anaemia can make one tired as hell. My hgb made a drop from 16.0 to 13.7 ever since getting sick. 
What is normal for one person might be low for another. The reference ranges does not take into account the individual. 
Would be interesting to see the haemoglobin levels for most of you suffering from extreme fatigue?


----------



## Sophabulous

Glockola said:


> The fatigue sucks so bad. Anaemia is probably the main cause in many people.
> 
> Even mild anaemia can make one tired as hell. My hgb made a drop from 16.0 to 13.7 ever since getting sick.
> 
> What is normal for one person might be low for another. The reference ranges does not take into account the individual.
> 
> Would be interesting to see the haemoglobin levels for most of you suffering from extreme fatigue?




Hi there! This is so interesting to me as my fatigue has been awful lately. When I was diagnosed I was severely anaemic and my B12 was low too. Although I was tired I would describe it more as feeling physically and emotionally drained (I spent a long time misdiagnosed and then being told I must be imagining things.) Nevertheless I was working 2 jobs, and although it was hard work I could just about manage. Running on fumes, but still running if you will. 

I gave up my second job in 2016 and I had about 3 months respite before my main full time job got really crazy. This got worse and worse until in October 2017 my body completely downed tools and I couldn’t get out of bed at all through the exhaustion and sickness. I saw a GP who checked iron and B12 and they were both fine.

I managed to rest up for a few days and go back to work, but over Christmas I got worse and worse again. I went back to the GP again in January who said I’m probably deficient in vitamin D, despite the fact that I already take this in both a multivitamin and separate supplement form. I wish I could have seen my usual GP who is absolutely brilliant but it’s a 3 week wait to see her as she’s so popular. 

I still have absolutely no idea why my fatigue is so severe. I can only think it’s a combination of stress, the ongoing effects of unchecked severe inflammation and burnout from a year of exerting myself physically at work. 

Things are looking up now as our workloads are lightening, but the fatigue is lifting painfully slowly. Both of the GP’s I saw seemed to seriously underestimate how debilitating this was, one was sympathetic but unable to help and the other was quite firm about how other people feel the same and manage fine. I’m in my mid twenties, I shouldn’t be feeling like I go to work already wiped out and come home to collapse in my bed for 12 hours!


----------



## Glockola

I think you could be tired because of malabsorption. The blood test are not sensitive enough for detecting minor deficiencies of protein for example. Even if you do a blood and check for B12, Folate, Iron, vitamin D and so on.
Albumin is not sensitive enough. Most docs are unaware of more sensitive protein markers such as transferrin, transthyretin and retinol binding protein, and don't know how to apply them in clinical practice. Many deficiencies are subclinical and not routinely detectable until severe. 

And yes the docs have no idea about fatigue, there has been almost no research on fatigue in IBD patients. My doctors are clueless. I am also in my mid 20s.


----------



## Sophabulous

Glockola said:


> I think you could be tired because of malabsorption. The blood test are not sensitive enough for detecting minor deficiencies of protein for example. Even if you do a blood and check for B12, Folate, Iron, vitamin D and so on.
> 
> Albumin is not sensitive enough. Most docs are unaware of more sensitive protein markers such as transferrin, transthyretin and retinol binding protein. Many deficiencies are subclinical and not routinely detectable until severe.
> 
> 
> 
> And yes the docs have no idea about fatigue, there has been almost no research on fatigue in IBD patients. My doctors are clueless. I am also in my mid 20s.




Thank you, it’s good to speak to someone who understands! I’ve been told about a place in London where they can do multiple tests on saliva amongst other things to check for deficiencies. I’ve been holding off going down that route as it’s expensive but I think it could be the only way to be honest. I think you’re right about the malabsorption, my Crohn’s is all in the small bowel so this does make sense. I’ve been on the liquid diet and I’m now doing 50/50 Ensure plus and food but I’m still struggling so it would make sense that I’m not absorbing everything.

Thanks again [emoji4]


----------



## Glockola

There are no tests you can do to identify subclinical malnutrition, you would need a control group of similar aged healthy people to compare with. Just make sure your basic labs are in range. Mainly Hgb, albumin, thyroid function and vitamins/minerals. 
Even if they would find an underlying reason for our fatigue? The treatment would still be the same. Trying to control the inflammation, healing the intestine, take vitamins and eat healthy. 
A lot of people are not 100% functioning in remission either, some never experience "full" remission. It just become the new "normal" after a while. 
We also have to watch out for depression and anxiety. That is something I struggle with since becoming ill. 
I think the best method is to be as active as we are comfortable with. If I surrender to much to the fatigue it just makes depression worse. 
I think it is really awesome you are still able to work. Some people here are not functioning well enough. Those of us that do manage to work have to sacrifice all of our free time.


----------



## Spooky1

Guess who's trying CBD oil (without the THC)or fatigue and inflammation, not to mention the bad nights sleep and arthritis/iritis etc?  I have only just started but have researched it plenty on youtube and google.  I will let you know how it goes but it's very early days yet.


----------



## ronroush7

Spooky1 said:


> Guess who's trying CBD oil (without the THC)or fatigue and inflammation, not to mention the bad nights sleep and arthritis/iritis etc?  I have only just started but have researched it plenty on youtube and google.  I will let you know how it goes but it's very early days yet.


Wishing you good things.


----------



## hamster139

> Things are looking up now as our workloads are lightening, but the fatigue is lifting painfully slowly. Both of the GP’s I saw seemed to seriously underestimate how debilitating this was, one was sympathetic but unable to help and the other was quite firm about how other people feel the same and manage fine. I’m in my mid twenties, I shouldn’t be feeling like I go to work already wiped out and come home to collapse in my bed for 12 hours!


I think that was the biggest problem for me initially.  That the doctor's I initially saw thought the fatigue was just being 'tired'.  My GI was no help at all.. thinking it was stress related.  My GP definitely did all the tests he could.. to look for any sort of hormonal issues, deficiency, sleep issues, etc.  And nothing.

The only thing I would say to you.. would be to do everything in your power not to 'push through', because it always ends badly.  I wish I coulda told that to myself in my late 20's when I was starting to get this.  We have to 'slow down'.  A few years back, I had no choice but to quit my job, stop social engagements, and find work where I could lay down, and not interact with people.  It was very tough.. but doing that, along with rigorous pacing, is the only thing that stopped the downward spiral and the post-exertion crashes.


----------



## Sophabulous

hamster139 said:


> I think that was the biggest problem for me initially.  That the doctor's I initially saw thought the fatigue was just being 'tired'.  My GI was no help at all.. thinking it was stress related.  My GP definitely did all the tests he could.. to look for any sort of hormonal issues, deficiency, sleep issues, etc.  And nothing.
> 
> 
> 
> The only thing I would say to you.. would be to do everything in your power not to 'push through', because it always ends badly.  I wish I coulda told that to myself in my late 20's when I was starting to get this.  We have to 'slow down'.  A few years back, I had no choice but to quit my job, stop social engagements, and find work where I could lay down, and not interact with people.  It was very tough.. but doing that, along with rigorous pacing, is the only thing that stopped the downward spiral and the post-exertion crashes.




Thank you for the advice, I’m my own worst enemy with ‘pushing through’ as you describe. I just tell myself if I can get to the end of the work day then everything will be fine and I can just sleep but at times it means little quality of life. It definitely gets worse as the week goes on too, I spend all weekend usually just recharging by doing very little or napping ready for Monday again. 

I hope this will improve somewhat when I start Remicade next week (if I’m over this horrible cold by then) but realistically I know fatigue remains a huge issue for many people even when in remission. It’s very depressing and i hope that more can be done to raise awareness of what life can be like when living with conditions like IBD. Most people think it sounds great to sleep all the time but never think about how it means you don’t shower as often as you should, don’t eat because it’s too exhausting to make food, your house looks like a tip, you never go anywhere etc etc. It’s like being a prisoner in some ways. 

Ideally I would drop down to working part time but that just isn’t an option for me at the moment, and I can’t see it being an option for a few years yet. But you never know, life has a way of surprising us )


----------



## ronroush7

Sophabulous said:


> Thank you for the advice, I’m my own worst enemy with ‘pushing through’ as you describe. I just tell myself if I can get to the end of the work day then everything will be fine and I can just sleep but at times it means little quality of life. It definitely gets worse as the week goes on too, I spend all weekend usually just recharging by doing very little or napping ready for Monday again.
> 
> I hope this will improve somewhat when I start Remicade next week (if I’m over this horrible cold by then) but realistically I know fatigue remains a huge issue for many people even when in remission. It’s very depressing and i hope that more can be done to raise awareness of what life can be like when living with conditions like IBD. Most people think it sounds great to sleep all the time but never think about how it means you don’t shower as often as you should, don’t eat because it’s too exhausting to make food, your house looks like a tip, you never go anywhere etc etc. It’s like being a prisoner in some ways.
> 
> Ideally I would drop down to working part time but that just isn’t an option for me at the moment, and I can’t see it being an option for a few years yet. But you never know, life has a way of surprising us )


Wishing good things for you with the Remicade .


----------



## Sophabulous

ronroush7 said:


> Wishing good things for you with the Remicade .




Thank you, fingers crossed [emoji4]


----------



## cmack

Good luck Soph, you have my support.


----------



## Glockola

My doctor is considering prescribing some centralstimulantia such as amphetamines at low dose. Maybe some of you could find a doctor willing to prescribe off label?
It is perfectly safe to take a low dose therapheutic dose indefinently.
I dont worry about addiction as I am already addicted to chronic malabsorption and fatigue.


----------



## Crohn2357

Thiamine and Fatigue in Inflammatory Bowel Diseases: An Open-label Pilot Study

Published Online:1 Aug 2013

*Abstract*

*Objectives*: To demonstrate that fatigue and other disorders related to ulcerative colitis and Crohn's disease are the manifestation of an intracellular mild thiamine deficiency and not due to malabsorbtion, augmented requirements, or nutritional factors, and that this dysfunction is curable with high doses of thiamine administered orally or parenterally.

*Design*: In this pilot study, we treated fatigue in eight patients with ulcerative colitis and four patients affected by Crohn's disease from January to April 2011. The patients were recruited through general practitioners' surveys and among personnel and affiliated personnel of the clinic Villa Immacolata. Fatigue was measured using the chronic fatigue syndrome scale, and the determination of thiamine and thiamine pyrophosphate levels in the blood was carried out through blood tests. The levels of thiamine and thiamine pyrophosphate in the blood were normal. All patients were assigned to receive high doses of thiamine orally. Depending upon the body weight of each patient, dosage ranged from 600 mg/day (60 kg) to 1,500 mg/day (90 kg). The chronic fatigue syndrome scale as well as thiamine and thiamine pyrophosphate levels in the blood were measured 20 days after the beginning of the therapy.

*Results*: Ten patients out of twelve showed complete regression of fatigue, while the remaining two patients showed nearly complete regression of fatigue compared to the chronic fatigue syndrome scale scores before therapy.

*Conclusions*: The absence of blood thiamine deficiency and the efficacy of high-dose thiamine in our patients suggest that fatigue is the manifestation of a thiamine deficiency, likely due to a dysfunction of the active transport of thiamine inside the cells, or due to structural enzymatic abnormalities. The administration of large quantities of thiamine increases the concentration in the blood to levels in which the passive transport restores the normal glucose metabolism in all cells and leads to a complete regression of fatigue.

This pilot study suggests vitamin b1 supplementation might help.


----------



## Spooky1

That looks so interesting.  Gonna get myself some of that.  If it's true it will be well worth it.


----------



## hamster139

Sophabulous said:


> Thank you for the advice, I’m my own worst enemy with ‘pushing through’ as you describe. I just tell myself if I can get to the end of the work day then everything will be fine and I can just sleep but at times it means little quality of life. It definitely gets worse as the week goes on too, I spend all weekend usually just recharging by doing very little or napping ready for Monday again.
> 
> I hope this will improve somewhat when I start Remicade next week (if I’m over this horrible cold by then) but realistically I know fatigue remains a huge issue for many people even when in remission. It’s very depressing and i hope that more can be done to raise awareness of what life can be like when living with conditions like IBD. Most people think it sounds great to sleep all the time but never think about how it means you don’t shower as often as you should, don’t eat because it’s too exhausting to make food, your house looks like a tip, you never go anywhere etc etc. It’s like being a prisoner in some ways.
> 
> Ideally I would drop down to working part time but that just isn’t an option for me at the moment, and I can’t see it being an option for a few years yet. But you never know, life has a way of surprising us )


I hope that the Remicade works for you.  And it might.  For some of us here... when the Crohn's goes into remission... so does the fatigue.   That's actually how I was in the very beginning.

But as you noted... many of us continue to have fatigue even when the crohn's is completely in check.  If that's you... then its all about pacing.  My Endocrinologist basically said that you have to look at the fatigue as its own disease... one that flares up with completely different triggers.  Basically... the exertion becomes the trigger.  So only pacing, economizing, and resting more will keep it at bay.

There are some other things that help us as well.  For me, Low Dose Naltrexone helps with the brain-fog.  Also... for many of us... Prednisone can be magic... but its not something to ever take continually... only as a once in a while 'shield' from fatigue.  I use it for trips and social occasions.


----------



## Lynda Lynda

yosemitegirl said:


> 45 years with Crohn's and one thing I know absolutely... I have been tired since 1970. I don't remember what "normal" is.
> 
> Doesn't matter what meds, surgeries, flares or no...
> ALWAYS tired. But not the kind of sleepy tired described by most here. In fact, if I slept 4 hours in a row I would have to be unconscious or dead. Just unbelievably exhausted.
> 
> A lot of my labs are off from malabsorption issues (10 surgeries), but no anemia.
> 
> Crohn's is an auto immune problem, and as such, with the body attacking itself, and chronic inflammation, maybe the question is why wouldn't we be tired? There is so much they don't know.
> 
> Everyone must find their own pace and what works for them. Please do not question your sanity.
> 
> Take care...        Michele Lea


I know this post is old, but thank you for sharing. I like what you said....IT IS SO TRUE.


----------



## Lynda Lynda

My relatives don't understand that after I socialize with them for 2-3 hours that I have to go home and rest. 4-6 hours is WAY past my limit. Take care.


----------



## Spooky1

I suffer badly with fatigue.  It's not just physical exertion by mental exhaustion from interacting with people, or just concentrating.


----------



## cmack

Hot weather does that to me, I do my best working and thinking in the cool weather. Some days are just up in the air though, I'm sure you all understand.


----------



## Kit

Lynda Lynda said:


> My relatives don't understand that after I socialize with them for 2-3 hours that I have to go home and rest. 4-6 hours is WAY past my limit. Take care.


It is amazing how much energy it takes to be around people and engaging.  Today is a rest day for me after our Easter travel/family day!


----------



## cmack

Have a good rest, Kit.


----------



## thike1966

Fatigue is almost worse that the other symptoms. As much as I hate living in a bathroom sometimes, the fatigue is worse. I feel so guilty for being useless. My Dad is 80 and does his best to take care of things, but at this age I should be taking care off him.

I was raised to believe when things are not going your way, work harder. And that is impossible when working hard work will send me into relapse further than I am. 

I focus on the success stories I read on the internet and the two things they have in common or good diets and exercise. Many stories mention two weeks of adjustment that your body goes through to adjust, which are awful, but achievable. 

Currently I am in a relapse caused by rejection of Remicade. Prednisone is all that is keeping me from crashing and burning into the hospitable again.

I saw my PA last week and she is worried due to my c-reactive protein being 181 when it should be 8. So I am seeing the head doctor in the office on April 9 after we see if I react well to the Imuran I just started.

I have a feeling the only way to beat the ever lasting fatigue is to get moving again. Also, I was an extremely active person before becoming a Crohnie, busy 6 to 7 nights a week, volleyball three nights, parties, friends, movies, plays, concerts and hikes in the mountains. I miss them all.

Some days I have a hard time getting out of bed and up the stairs, only rising to go to the bathroom or get drinks and food.

I take a lot of vitamins and follow my nutritionist's advice as much as possible.

The B-12 under the tongue has helped my legs fee like they are part of my  body again. My hemoglobin is still low, but better. It makes sense since my immune system is working over-time and was retarded by drugs, I should be worn out, but I don't like it.

As soon as I get back on the road to remission, I need to fight through this and get active again before I go completely insane.

A part of me feels like a lazy bum. One thing I am learning is not to judge others.  I often look good on the outside and people are so happy I lost weight and think I am fine, but on the inside I am in hell sometimes with cramps and feeling like everything is stuck on my insides and it goes slowly through my inflamed ileum then drops to my inflamed colon. Right now, I can't muster the energy to walk around the block, which upsets my dog almost as much as me. 

I refuse to give up on a goal I set before the onset of this. I am going to ride over Trail Ridge Road on the dirt road next to the highest paved road in Colorado, from Estes Park to Grand Lake, where I will rest a play a few days before heading back over the 11,500 feet above sea level pass. I would like to do it at the end of this summer, it closes around October 1.

My doctors and others think I am crazy, but that just gives me more motivation. If not this summer, then next. I have a friend with Crohn's who  rode his bike across Canada from the Atlantic to the Pacific. He took 6 months to get into remission. I am on my 6th month and back at zero due to a Remicade rejection. I hope to get on another Biologic and then kick this fatigue out of my life. I refuse to believe I will never achieve, I refuse to let Crohn's dictate my life. I  believe I can be Victim with many excuses, a Survivor with rationalized excuses or a Thriver with no excuses. 

I am not yet there, but I will have to stop being a survivor and thrive, I have no choice. I don't know how I will get there, I just know I will. And the days when I only see darkness are getting fewer. 

I was 4 days away from complete organ failure and death when I first got hospitalized with my intestines completely shut down. I never want to be that close to a my demise again until my actual expiration date many years from now.

I got so much living to do, i just need to find my way out of the swamp and fatigue quicksand.


----------



## cmack

Hang in there, it will get better. I have felt similar and it was true for me. You have what it takes inside of your soul to beat this! Never give up. I hope good things happen for you soon.


----------



## London

I was up until 2:00 am with friends Saturday into Sunday this weekend.  Bad mistake— relapsing to diarrhea bouts and sleeping constantly.  Pain started again.  I will never do that again!!! UGH


----------



## Lynda Lynda

Spooky1 said:


> Guess who's trying CBD oil (without the THC)or fatigue and inflammation, not to mention the bad nights sleep and arthritis/iritis etc?  I have only just started but have researched it plenty on youtube and google.  I will let you know how it goes but it's very early days yet.


Is there any drug interaction between your prescription medications or supplements and the CBD oil ?


----------



## Lynda Lynda

I wanted to thank everyone for sharing their stories. I have learned a lot by reading everyone's posts. Take Care and have a good week. ♡


----------



## Spooky1

No problems that I've spotted, Lynda.

Welcome, Thike, we are all in the same boat.  There are better days.  It's a question of setting and knowing limitations.


----------



## Lynda Lynda

:hallo3:  
Why is there a skull emoji ?    :lol::lol:


----------



## cmack

Best wishes to all.


----------



## Lynda Lynda

Glockola said:


> There are no tests you can do to identify subclinical malnutrition, you would need a control group of similar aged healthy people to compare with. Just make sure your basic labs are in range. Mainly Hgb, albumin, thyroid function and vitamins/minerals.
> Even if they would find an underlying reason for our fatigue? The treatment would still be the same. Trying to control the inflammation, healing the intestine, take vitamins and eat healthy.
> A lot of people are not 100% functioning in remission either, some never experience "full" remission. It just become the new "normal" after a while.
> We also have to watch out for depression and anxiety. That is something I struggle with since becoming ill.
> I think the best method is to be as active as we are comfortable with. If I surrender to much to the fatigue it just makes depression worse.
> I think it is really awesome you are still able to work. Some people here are not functioning well enough. Those of us that do manage to work have to sacrifice all of our free time.



I agree !


----------



## Lynda Lynda

cmack said:


> Hot weather does that to me, I do my best working and thinking in the cool weather. Some days are just up in the air though, I'm sure you all understand.


Whoa, it is °95 outside right now at 6:25pm. Hot weather makes me stay inside in Arizona in the summertime, just like the winter weather in the Midwest makes people stay inside because it is so cold. I hope your temperature is not 95 degrees. :yfaint:


----------



## cmack

We get high 90's for a couple months usually, not always. If we are lucky we have a nice balance, just not the last couple years. It has been either unseasonably cold or abnormally hot and dry with just a very short spring and fall. I hope it returns to a regular pattern soon.


----------



## thike1966

Fatigue is the hardest thing for me to accept. 

I am not lazy, I am not a slacker, but I am not as much a part of the world as I need to be. 

I know remission is possible, I know that I am lucky to not have had surgery yet. 

It just gets hard when I can't be the man I was made to be, I can't find the strength that used to be my strongest ally. Bloating from Prednisone, feels like making a deal with the Devil, but no denying it works. Hopefully I will get another option, waiting on blood work, Entivio or Stellara, if I can get them approved. remission is on its way, just not quick enough.


----------



## ronroush7

thike1966 said:


> Fatigue is the hardest thing for me to accept.
> 
> I am not lazy, I am not a slacker, but I am not as much a part of the world as I need to be.
> 
> I know remission is possible, I know that I am lucky to not have had surgery yet.
> 
> It just gets hard when I can't be the man I was made to be, I can't find the strength that used to be my strongest ally. Bloating from Prednisone, feels like making a deal with the Devil, but no denying it works. Hopefully I will get another option, waiting on blood work, Entivio or Stellara, if I can get them approved. remission is on its way, just not quick enough.


I hope you can get approved for one of them.


----------



## cmack

You have my support thike. May remission be in the near future for you.


----------



## Lynda Lynda

thike1966 said:


> Fatigue is the hardest thing for me to accept.
> 
> I am not lazy, I am not a slacker, but I am not as much a part of the world as I need to be.
> 
> I know remission is possible, I know that I am lucky to not have had surgery yet.
> 
> It just gets hard when I can't be the man I was made to be, I can't find the strength that used to be my strongest ally. Bloating from Prednisone, feels like making a deal with the Devil, but no denying it works. Hopefully I will get another option, waiting on blood work, Entivio or Stellara, if I can get them approved. remission is on its way, just not quick enough.


:hang:


----------



## Glockola

I would recommend getting a script for Methylphenidate or Lisdexamphetamine. You can take it on days where you need extra energy. I got it prescribed from my psychiatrist. 
I would of course advice to try other ways to manage first. But for me this has been the only thing that has given me some energy back. Of course it can be addictive and probably not good in the long run. But quality of life can be too low sometimes. So it is for those whom are willing to make the compromise.

I just take a low dose. So don't feel drugged up or anything. Just slightly more energy and able to concentrate.


----------



## Lynda Lynda

Grrr. I just lost my post.


----------



## Spooky1

I can't seem to find it either, lol.


----------



## Lynda Lynda

spooky1 said:


> i can't seem to find it either, lol.


......


----------



## Marley's Mom

nogutsnoglory said:


> Anyone else completely bedbound/housebound from their fatigue?


I haven't able to be active in over a year. I'm lucky to have a wonderful hubby. I average getting out of the house to go to a Dr appt with my hubs driving me about once a month. The rest of the time I'm in bed.


----------



## Marley's Mom

nogutsnoglory said:


> They should do some tests to get to the bottom of what is causing it and if nothing is found they should trial stimulants like adderal or ritalin or narcolepsy meds like Provigil which can help some people.


My Dr tried giving me Adderall for the fatigue and it didn't help me. But someone else might have a different outcome. 

Has anyone tried the high dose B1 and had good results?


----------



## Marley's Mom

Crohn2357 said:


> Thiamine and Fatigue in Inflammatory Bowel Diseases: An Open-label Pilot Study
> 
> Published Online:1 Aug 2013
> 
> *Abstract*
> 
> *Objectives*: To demonstrate that fatigue and other disorders related to ulcerative colitis and Crohn's disease are the manifestation of an intracellular mild thiamine deficiency and not due to malabsorbtion, augmented requirements, or nutritional factors, and that this dysfunction is curable with high doses of thiamine administered orally or parenterally.
> 
> *Design*: In this pilot study, we treated fatigue in eight patients with ulcerative colitis and four patients affected by Crohn's disease from January to April 2011. The patients were recruited through general practitioners' surveys and among personnel and affiliated personnel of the clinic Villa Immacolata. Fatigue was measured using the chronic fatigue syndrome scale, and the determination of thiamine and thiamine pyrophosphate levels in the blood was carried out through blood tests. The levels of thiamine and thiamine pyrophosphate in the blood were normal. All patients were assigned to receive high doses of thiamine orally. Depending upon the body weight of each patient, dosage ranged from 600 mg/day (60 kg) to 1,500 mg/day (90 kg). The chronic fatigue syndrome scale as well as thiamine and thiamine pyrophosphate levels in the blood were measured 20 days after the beginning of the therapy.
> 
> *Results*: Ten patients out of twelve showed complete regression of fatigue, while the remaining two patients showed nearly complete regression of fatigue compared to the chronic fatigue syndrome scale scores before therapy.
> 
> *Conclusions*: The absence of blood thiamine deficiency and the efficacy of high-dose thiamine in our patients suggest that fatigue is the manifestation of a thiamine deficiency, likely due to a dysfunction of the active transport of thiamine inside the cells, or due to structural enzymatic abnormalities. The administration of large quantities of thiamine increases the concentration in the blood to levels in which the passive transport restores the normal glucose metabolism in all cells and leads to a complete regression of fatigue.
> 
> This pilot study suggests vitamin b1 supplementation might help.


Has anyone tried this? and did it help?


----------



## cmack

I haven't tried it, but I bet someone else will be along soon. Welcome to the forum.


----------



## Lynda Lynda

:bigwave:   Hi Marley's Mom.


----------



## Lynda Lynda

There's a "chronic fatigue syndrome scale "


----------



## thike1966

My nutritionist and three doctors, suggested B12 and D3. That would be my GP, GI and the doctor that leads my support group said they are the happy vitamins for Crohn’s. 

With my ileum imgalmed, where these vitamins are not being absorbed, I use liquid under my tongue, called sublingual. B12 helped correct my low blood oxygen, which was at 65% and is now 95%.

I was also told it is very difficult to overdose B and D vitamins as long as you drink enough, they are expelled in urine.

QUOTE=Marley's Mom;1009624]My Dr tried giving me Adderall for the fatigue and it didn't help me. But someone else might have a different outcome. 

Has anyone tried the high dose B1 and had good results?[/QUOTE]


----------



## Lynda Lynda

I only take B12 and D3. My doctors recommend these based on all my current health conditions. 
Take care


----------



## Marley's Mom

I've been taking B-1(Thiamine) for about 3 days now and I'm hoping that sometime in the next couple of weeks it might make a difference. I bought Solgar brand from Amazon and I'm taking 1,500 mgs a day.  No bad side effects yet, but no big difference yet either.


----------



## cmack

Marley's Mom said:


> I've been taking B-1(Thiamine) for about 3 days now and I'm hoping that sometime in the next couple of weeks it might make a difference. I bought Solgar brand from Amazon and I'm taking 1,500 mgs a day.  No bad side effects yet, but no big difference yet either.


I hope it helps. Be sure to ask the doctor about the proper dosages though. I know it's a pain, but you are way better safe than sorry. I wish you all the very best. Let me know if it does help.


----------



## Marley's Mom

cmack said:


> I hope it helps. Be sure to ask the doctor about the proper dosages though. I know it's a pain, but you are way better safe than sorry. I wish you all the very best. Let me know if it does help.



I will. I see him tomorrow. It will be an endurance test as well. It's a 3 hr round trip and it's even hotter there than it is here. I call him a quack, but so far in the last 3 years he's the only Dr I've seen that doesn't freak when he sees my med list.
Thiamine seems to be working!!!


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## cmack

Good luck tomorrow... I call some of them quacks too...LOL  I'm sure glad he isn't freaking out on you. Let us know how you do...Cheers!


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## Marley's Mom

I've been on liquids for a while now to give my gut a rest hoping to avoid another surgery. 
Yesterday, was interesting. I'm glad I was up and on the move early other wise I'd have cancelled.  My hour and a half drive to get there was enjoyed with a bout of nausea about halfway there. Luckily, I carry nausea meds. Then came the screaming headache because I need new glasses but I want to consult with my Endo first and an eye surgeon.
 Then by the time the Dr finally got to see me i was so dehydrated my hands kept doing weird things. One was working at becoming a claw that I have to physically straighten out while the other was waving at the quack and it wasn't me. My knee was also joining in and giving me fits.  I mentioned I probably need to take some Potassium and he wrote me a script for some medicated cream for my spasming extremities and told me all about the thrills of Carpal Tunnel surgery. Yep, he really is a quack. But he fills my meds for now.:yrolleyes:
The report on high therapeutic dose of Thiamine(B1) is he's never heard of anyone ODing on B Vitamins or Marijuana. Did I mention he also owns the towns Marijuana Dispensary and advertises it in his waiting room??  Marijuana is legal in my state for recreational use as well as for medical issues. I think he had been into his stash yesterday before I got there. Oh well!!
 I had called his office early to give his office manager the list of scripts I needed so they didn't write scripts for stuff I don't need for a while. On my way home the Chronie gut pain decided to rear it's ugly head. There's no reason for me to need a pain pill, all I'd had all day was water, but I guess it was a lot of work digesting the water and my body decided to tell me about it. I couldn't wait to get home and into my Jammies.
 Whew!! What a day that I won't need to repeat for a few months or ever if one of the Dr's I'm seeing this month can advise me on a good Primary Care Dr.  Relocating while fun, has it's drawbacks.
Today is a new Endo. The one I already tried was older than Moses and about that up to date on the miracles of modern medicine. I'm seeing a different Endo, same office, but born in the last half of the century, for my Hashimoto's  Disease and to check up on the nodule on my Adrenal gland.
Tomorrow, I think I'm spending in bed!
Oh, and despite how lousy I felt I really didn't have a problem getting ready to go out the door. Usually I want a nap after just getting ready to leave the house. I hadn't slept well the night before but I actually had the energy to go forward yesterday, sleep deprived and all.
I hope everyone has a safe and enjoyable 4th of July or whatever you celebrate in your country.


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## cmack

That really does sound just a little bit different... I'm sure glad you got that appointment over with. Happy 4th of July to you too. Keep in touch.


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## Marley's Mom

:heartay 5 of 1,500 Mgs Vit B1, I should be laying in bed trying to get over the trip yesterday. It would normally take me a couple of days. I woke up at 3 and put some things away and  recovered a stool before 5. I feel better than I have in a couple of years and I have another appt with a different Dr today that I wasn't looking forward to. I've already had a short nap and I'm ready to shower and get ready to go again, no problem. this is absolutely amazing and I'm hoping it just gets better if it can! I don't remember feeling this well in a very long time! 
I hope everyone enjoys the 4th and then go shopping for some Thiamine (B1). This is incredible!!  My appt is with an Endocrinologist because I also have Hashimoto's Disease and that's another recipe for Fatigue which is why I have an appt hoping for help. I guess I'll just let him address my meds and not worry about asking about the Fatigue.


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## cmack

Good luck tomorrow at your appointment. I'm happy that you are feeling better, I truly hope it lasts. I like your picture of the dog, I love dogs... Cheers!


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## Marley's Mom

Thanks. That's Marley, my dog. I think he's gorgeous!


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## cmack




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## Glockola

Vyvanse has really helped me out. Keeps me productive for 8 hours. Today managed to move the lawn, clean the pool, power wash the deck and play with my son in the afternoon.
I have become dependent on speed in order to function. If you are having problems with debilitating fatigue and you havent yet tried stimulants, at least try it and see IF it COULD help make life a bit easier.


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## cmack

I'm glad it helps you and I wish you the very best. I'm sorry you feel addicted though. I had to look it up! I hadn't heard of Vyvanse. But I looked it up here, it seems like it's given to kids as well... interesting. Here is a link about it...https://www.drugs.com/vyvanse.html


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## cmack

It takes about five cups of coffee to get me wired, unless it's hot... then nothing works and major fatigue sets in. It seems the hotter I get the more I suffer. C'est la vie! 

I wish everyone here the best!


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## thike1966

Marley' s Mom,
I started B12, Iron and D3 and they do wonders. My blood oxygen was low due to my hemoglobin at 65%. My nutritionist advised me to do the B12 sublingual, liquid under the tongue. it was amazing and my hemoglobin got up to 85% at the last blood test. I felt a lot better.

I stuck with the nutritionists diet, no more processed sugars, gluten nor lactose. I cheat now and then, but get right hack on track. For example, at the 4th of July Party where my neighbors always request my creme brulee at all the parties. I made a double batch and got rave reviews from the new faces in the crowd and the host of the party put four aside for later, which is fine be me. He makes the best smoked ribs I've ever had. So I had the ribs and a creme brulee, but no.soda nor other tempting sweet treats.

I also stay true to my meds, even though it took three tries with Remicade. Imuran and finally Humira is working with the continued Imuran and Prednisone which I'm nearly tapered off of. I'm cautiously optimistic because I've crashed hard each time it feels like the drugs are working.

I went on a date last Sunday with a girl I had not seen in 30 years, visiting from Idaho. We mostly walked around Downtown Denver and went to a coffee house. The next day we went to a Colorado Rockies baseball game. 

I've spent the last 4 days recovering. My body is still weak. It was painful walking up the stadium stairs, but I quietly endured. My vision goes blurry when I walk around due to my eyes swelling and cornia warping with the slight increase in bloods pressure. A side affect of Prednisone that my ophthalmologist says will correct a few months after I'm off the steroids. His brother has Crohn's. 

The game eventually came into focus and they won. It was a lot of fun both nights. LeeAnn is a nurse and very understanding of my condition. I'm planning on going to visit her in Idaho when I get back on my feet. 

It was kind of a mistake to go to baseball game with blurry vision and shackey legs. The stairs are steep and I nearly fell down. Luckily I caught myself and no one noticed. That was four days ago and I'm still sore. It was physically challenging but not the dumbest thing I've ever done for love. So I guess in the end it was well worth it.  

I guess my point is, the there is hope for all of us when we get the right drugs and supplements.


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## Glockola

Seriously 2 cups of coffee gives me terrible diarrhoea, 5 cups would be a great way to clean out my system for the day. Vyvanse doesn't seem too hard on the digestion. I take it after a full breakfast. 
Agree about hot weather worsening fatigue, if I get too hot I get bad anxiety.


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## nogutsnoglory

Crohn2357 said:


> Thiamine and Fatigue in Inflammatory Bowel Diseases: An Open-label Pilot Study
> 
> Published Online:1 Aug 2013
> 
> *Abstract*
> 
> *Objectives*: To demonstrate that fatigue and other disorders related to ulcerative colitis and Crohn's disease are the manifestation of an intracellular mild thiamine deficiency and not due to malabsorbtion, augmented requirements, or nutritional factors, and that this dysfunction is curable with high doses of thiamine administered orally or parenterally.
> 
> *Design*: In this pilot study, we treated fatigue in eight patients with ulcerative colitis and four patients affected by Crohn's disease from January to April 2011. The patients were recruited through general practitioners' surveys and among personnel and affiliated personnel of the clinic Villa Immacolata. Fatigue was measured using the chronic fatigue syndrome scale, and the determination of thiamine and thiamine pyrophosphate levels in the blood was carried out through blood tests. The levels of thiamine and thiamine pyrophosphate in the blood were normal. All patients were assigned to receive high doses of thiamine orally. Depending upon the body weight of each patient, dosage ranged from 600 mg/day (60 kg) to 1,500 mg/day (90 kg). The chronic fatigue syndrome scale as well as thiamine and thiamine pyrophosphate levels in the blood were measured 20 days after the beginning of the therapy.
> 
> *Results*: Ten patients out of twelve showed complete regression of fatigue, while the remaining two patients showed nearly complete regression of fatigue compared to the chronic fatigue syndrome scale scores before therapy.
> 
> *Conclusions*: The absence of blood thiamine deficiency and the efficacy of high-dose thiamine in our patients suggest that fatigue is the manifestation of a thiamine deficiency, likely due to a dysfunction of the active transport of thiamine inside the cells, or due to structural enzymatic abnormalities. The administration of large quantities of thiamine increases the concentration in the blood to levels in which the passive transport restores the normal glucose metabolism in all cells and leads to a complete regression of fatigue.
> 
> This pilot study suggests vitamin b1 supplementation might help.


This is very interesting! I am thinking of giving this a try because B vitamins are water soluble and we pee them out. A little concerned at such a high dose but it doesn't appear to have bad effects maybe I will try 600mg not 1500mg and see what happens and go up if needed.


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## Marley's Mom

I've been on B-12 since my first surgery in 1990. They taught my hubs how to give me the injections and we still do it every week. My last Dr raised my Vit D3 to 4,000 mgs a day since I had been taking 2,000 based on my own research, but didn't have it on my drug sheet. She told me to start taking 2,000 a day and when I told her I already was she upped it to 4,000. I also take Magnesium and Potassium since I have no valves, liver bile and everything I eat just goes right thru me and like CMack heat is a killer for me and it's hot out if I don't take the potassium i wind up with my hands being stuck like claws and I have to literally pry my fingers down to a normal straight hand and I also get cramps in my legs that are killer without it. I've had 1 transfusion about 5 years ago. It was for 2 units of platelets. I have no idea what that was about, but it was needed. I had no signs of bleeding anywhere. I can't take iron in any form, we've tried them all.
And now my little journey with the Vit B1 aka Thiamine.  It's been about 2 weeks and I managed a 3 hr appt with a pain specialist yesterday and then a trip to the Chiropractor. I went home and just wanted my bed and PJ's. I did relax in my PJ's for an hour or so then I got up and had dinner with the hubs and watched some Tv. I went to bed about 8 because I was exhausted and I tried to stay in bed later today since I first woke up around 3:30. I managed to go back to sleep until about 9. Now I'm going to go start some laundry. Normally I'd be in be for today and tomorrow but since the B1 has built up in my system I actually feel ok. I'm not going to go nuts but a load of laundry seems doable and I haven't managed to do it for quite a while. It involves stairs and for me that's a killer.  Because of my size I am taking 1500 mgs a day. I am also taking the highest dose because I have no idea where it's metabolized in my system and so much of my intestines and  small bowel have been removed that sometimes I wonder if I get the benefit of anything. Like the Vit D, according to the blood test I had almost none in my system even tho I was on a healthy dose of it. So, i just go to horse doses to get the same effect. LOL!  
Anyone else looking for help with the fatigue I would definitely try a good quality Vit B1 supplement. 
Thanks everyone for the imput!!   :dusty:


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## thike1966

I take B12 sublingual, under my tounge and it goes right to my bloodstream. I hold it there for 30 seconds and swallow. Maybe you can get your D vitamin that way.


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## cmack

I'm glad you have a bit more energy, I did some wash today too. It's rainy so I figured why not... I looked it up and there is something called Cholecalciferol Sublingual Spray. Cholecalciferol is vitamin D3. Here is a link...https://www.drugs.com/cdi/cholecalciferol-sublingual-spray.html

Cheers!


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## hamster139

Was reading some posts about Vyvanse.  It also has helped, but like any other medication, if you use it all the time, you build tolerance.

I try to use it 5 days out of the week.  Basically, I take out 5 capsules, then lock up the rest for the week.

Also, to those using stimulants... beware.   Don't physically 'overexert' yourself while your on it.  That can cause you to crash.  I personally think it's best used for mental busywork.


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## cmack

I use the mnemonic method, I learned it in college psychology. It involves associating something very familiar or similar in your mind to the word to be remembered. For instance, I always remember hydrangea by thinking of a drain and the hydra portion being water. It reminds me every time. Look it up it works!


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