Extreme Fatigue Support Group

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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?
 
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?
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I have not heard of this medication, but I hope it helps you!
 
King of Orange said:
My parents have so much energy, I wish I was 75 years old and like them!
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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:
 
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!
 
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 💕💋
 
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.
 
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
 
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.
 
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
 
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 💕
 
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 :/
 
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
 
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
 
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 ☺☺☺
 
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
 
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.
 
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 ☺☺☺
 
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.
 
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.
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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!
 
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 :(
 
I am sorry you can no longer work ( I am in that same boat). Thanks for the information though!
 
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 ☺☺
 
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.
 
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. ☔☔☔
 
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.
 
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
 
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 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
 
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!
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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
 
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.
 
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
 
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 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
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A hematologist is a blood specialist. They deal with disease and conditions of the blood. (Includes leukemia and such)
 
@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.
 
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 💕
 
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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.
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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!!
 
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:
 
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 :)
 
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.
 
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
 
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.
 
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
 
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
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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.
 
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 💕
 
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 :)
 
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.
 
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.
 
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!
 
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.
 
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. ☺☺☺
 
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.
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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 haven't done a sleep study. Have good nights and bad nights. I definitely dream a lot though!
 
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.
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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.
 
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.
 
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.
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I hope you get some answers.
 
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.
Click to expand...

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 ?
 
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.
 
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.
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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. : - (
 
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
 
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
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Hi, Grant. I hope the doctor can get you on the right set of meds soon.
 
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.
Click to expand...


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!
 
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 :)
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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.
 
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/
 
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
Click to expand...
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:
 
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!
 
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
 
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
Click to expand...

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
 

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