Extreme Fatigue Support Group

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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!
 
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.
 
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.
 
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.
 
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
 
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
 
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!
 
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.
 
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
 
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 :)
 
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.
 
Well I'm sitting here getting my first iron infusion - hopefully this will give me back some energy !
 
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.
 
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.
 
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.
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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. :)
 
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.
 
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!!
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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 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.
 
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?
 
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?
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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.
 
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. :-(
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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.
 
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
 
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!
 
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:
 
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:
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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:
 
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 that sounds like typical symptoms. I get fatigued all the time as well. Its a battle everyday.
 
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?
 
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.
 
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.
 
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...
 
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.
 
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.
 
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?
 
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.
 
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?
 
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 :)
 
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.
 
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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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.
 
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.
 
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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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.
 
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.
 
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!
 
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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.
 
I'm going to try taking my azathioprin before bed to see if that helps.
 
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.
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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.
 
DJW said:
I'm going to try taking my azathioprin before bed to see if that helps.
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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).
 
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.
 
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.
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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! :)
 
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.
 
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.
Click to expand...

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.
 
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/
 
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/
Click to expand...

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

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:
 
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!!
Click to expand...

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.
 
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.
Click to expand...

Good luck to you! Please keep us up to speed about how it's going!
 
Everyone is welcome oxy.

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

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.
 
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?
Click to expand...

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.
 
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 :)
Click to expand...

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.
 
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.
Click to expand...


:(

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.
 
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! :)
Click to expand...


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.
 
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.
Click to expand...

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!
 
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.
Click to expand...

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

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.
 
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.
Click to expand...

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

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.
 
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.
 
nogutsnoglory said:
150mg is that standard? I have no clue.
Click to expand...

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

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).
 
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.
 
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.
 
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.
 
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.
Click to expand...

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!
 
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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