Crohn's Disease Forum » Support Forum » Extreme Fatigue Support Group


 
02-08-2018, 11:43 AM   #631
Sophabulous
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When I was suffering from chronic fatigue, my doctor prescribed me nootropicboost . These are natural pills that improve memory, help to stay motivated and cope with lack of sleep. As far as I know, they are absolutely safe for human health and don't cause dependence.


Hi Quante,

They sound great but Iím also struggling to find them. Would you be able to post a link at all?

Thanks in advance
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02-13-2018, 04:58 PM   #632
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The fatigue sucks so bad. Anaemia is probably the main cause in many people.
Even mild anaemia can make one tired as hell. My hgb made a drop from 16.0 to 13.7 ever since getting sick.
What is normal for one person might be low for another. The reference ranges does not take into account the individual.
Would be interesting to see the haemoglobin levels for most of you suffering from extreme fatigue?
02-13-2018, 07:18 PM   #633
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The fatigue sucks so bad. Anaemia is probably the main cause in many people.

Even mild anaemia can make one tired as hell. My hgb made a drop from 16.0 to 13.7 ever since getting sick.

What is normal for one person might be low for another. The reference ranges does not take into account the individual.

Would be interesting to see the haemoglobin levels for most of you suffering from extreme fatigue?


Hi there! This is so interesting to me as my fatigue has been awful lately. When I was diagnosed I was severely anaemic and my B12 was low too. Although I was tired I would describe it more as feeling physically and emotionally drained (I spent a long time misdiagnosed and then being told I must be imagining things.) Nevertheless I was working 2 jobs, and although it was hard work I could just about manage. Running on fumes, but still running if you will.

I gave up my second job in 2016 and I had about 3 months respite before my main full time job got really crazy. This got worse and worse until in October 2017 my body completely downed tools and I couldnít get out of bed at all through the exhaustion and sickness. I saw a GP who checked iron and B12 and they were both fine.

I managed to rest up for a few days and go back to work, but over Christmas I got worse and worse again. I went back to the GP again in January who said Iím probably deficient in vitamin D, despite the fact that I already take this in both a multivitamin and separate supplement form. I wish I could have seen my usual GP who is absolutely brilliant but itís a 3 week wait to see her as sheís so popular.

I still have absolutely no idea why my fatigue is so severe. I can only think itís a combination of stress, the ongoing effects of unchecked severe inflammation and burnout from a year of exerting myself physically at work.

Things are looking up now as our workloads are lightening, but the fatigue is lifting painfully slowly. Both of the GPís I saw seemed to seriously underestimate how debilitating this was, one was sympathetic but unable to help and the other was quite firm about how other people feel the same and manage fine. Iím in my mid twenties, I shouldnít be feeling like I go to work already wiped out and come home to collapse in my bed for 12 hours!
02-13-2018, 07:43 PM   #634
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I think you could be tired because of malabsorption. The blood test are not sensitive enough for detecting minor deficiencies of protein for example. Even if you do a blood and check for B12, Folate, Iron, vitamin D and so on.
Albumin is not sensitive enough. Most docs are unaware of more sensitive protein markers such as transferrin, transthyretin and retinol binding protein, and don't know how to apply them in clinical practice. Many deficiencies are subclinical and not routinely detectable until severe.

And yes the docs have no idea about fatigue, there has been almost no research on fatigue in IBD patients. My doctors are clueless. I am also in my mid 20s.
02-13-2018, 07:53 PM   #635
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I think you could be tired because of malabsorption. The blood test are not sensitive enough for detecting minor deficiencies of protein for example. Even if you do a blood and check for B12, Folate, Iron, vitamin D and so on.

Albumin is not sensitive enough. Most docs are unaware of more sensitive protein markers such as transferrin, transthyretin and retinol binding protein. Many deficiencies are subclinical and not routinely detectable until severe.



And yes the docs have no idea about fatigue, there has been almost no research on fatigue in IBD patients. My doctors are clueless. I am also in my mid 20s.


Thank you, itís good to speak to someone who understands! Iíve been told about a place in London where they can do multiple tests on saliva amongst other things to check for deficiencies. Iíve been holding off going down that route as itís expensive but I think it could be the only way to be honest. I think youíre right about the malabsorption, my Crohnís is all in the small bowel so this does make sense. Iíve been on the liquid diet and Iím now doing 50/50 Ensure plus and food but Iím still struggling so it would make sense that Iím not absorbing everything.

Thanks again
02-13-2018, 08:19 PM   #636
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There are no tests you can do to identify subclinical malnutrition, you would need a control group of similar aged healthy people to compare with. Just make sure your basic labs are in range. Mainly Hgb, albumin, thyroid function and vitamins/minerals.
Even if they would find an underlying reason for our fatigue? The treatment would still be the same. Trying to control the inflammation, healing the intestine, take vitamins and eat healthy.
A lot of people are not 100% functioning in remission either, some never experience "full" remission. It just become the new "normal" after a while.
We also have to watch out for depression and anxiety. That is something I struggle with since becoming ill.
I think the best method is to be as active as we are comfortable with. If I surrender to much to the fatigue it just makes depression worse.
I think it is really awesome you are still able to work. Some people here are not functioning well enough. Those of us that do manage to work have to sacrifice all of our free time.
02-15-2018, 12:00 PM   #637
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Guess who's trying CBD oil (without the THC)or fatigue and inflammation, not to mention the bad nights sleep and arthritis/iritis etc? I have only just started but have researched it plenty on youtube and google. I will let you know how it goes but it's very early days yet.
02-15-2018, 12:03 PM   #638
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Guess who's trying CBD oil (without the THC)or fatigue and inflammation, not to mention the bad nights sleep and arthritis/iritis etc? I have only just started but have researched it plenty on youtube and google. I will let you know how it goes but it's very early days yet.
Wishing you good things.

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03-15-2018, 03:09 PM   #639
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Things are looking up now as our workloads are lightening, but the fatigue is lifting painfully slowly. Both of the GPís I saw seemed to seriously underestimate how debilitating this was, one was sympathetic but unable to help and the other was quite firm about how other people feel the same and manage fine. Iím in my mid twenties, I shouldnít be feeling like I go to work already wiped out and come home to collapse in my bed for 12 hours!
I think that was the biggest problem for me initially. That the doctor's I initially saw thought the fatigue was just being 'tired'. My GI was no help at all.. thinking it was stress related. My GP definitely did all the tests he could.. to look for any sort of hormonal issues, deficiency, sleep issues, etc. And nothing.

The only thing I would say to you.. would be to do everything in your power not to 'push through', because it always ends badly. I wish I coulda told that to myself in my late 20's when I was starting to get this. We have to 'slow down'. A few years back, I had no choice but to quit my job, stop social engagements, and find work where I could lay down, and not interact with people. It was very tough.. but doing that, along with rigorous pacing, is the only thing that stopped the downward spiral and the post-exertion crashes.
03-16-2018, 07:20 AM   #640
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I think that was the biggest problem for me initially. That the doctor's I initially saw thought the fatigue was just being 'tired'. My GI was no help at all.. thinking it was stress related. My GP definitely did all the tests he could.. to look for any sort of hormonal issues, deficiency, sleep issues, etc. And nothing.



The only thing I would say to you.. would be to do everything in your power not to 'push through', because it always ends badly. I wish I coulda told that to myself in my late 20's when I was starting to get this. We have to 'slow down'. A few years back, I had no choice but to quit my job, stop social engagements, and find work where I could lay down, and not interact with people. It was very tough.. but doing that, along with rigorous pacing, is the only thing that stopped the downward spiral and the post-exertion crashes.


Thank you for the advice, Iím my own worst enemy with Ďpushing throughí as you describe. I just tell myself if I can get to the end of the work day then everything will be fine and I can just sleep but at times it means little quality of life. It definitely gets worse as the week goes on too, I spend all weekend usually just recharging by doing very little or napping ready for Monday again.

I hope this will improve somewhat when I start Remicade next week (if Iím over this horrible cold by then) but realistically I know fatigue remains a huge issue for many people even when in remission. Itís very depressing and i hope that more can be done to raise awareness of what life can be like when living with conditions like IBD. Most people think it sounds great to sleep all the time but never think about how it means you donít shower as often as you should, donít eat because itís too exhausting to make food, your house looks like a tip, you never go anywhere etc etc. Itís like being a prisoner in some ways.

Ideally I would drop down to working part time but that just isnít an option for me at the moment, and I canít see it being an option for a few years yet. But you never know, life has a way of surprising us )
03-16-2018, 07:40 AM   #641
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Thank you for the advice, Iím my own worst enemy with Ďpushing throughí as you describe. I just tell myself if I can get to the end of the work day then everything will be fine and I can just sleep but at times it means little quality of life. It definitely gets worse as the week goes on too, I spend all weekend usually just recharging by doing very little or napping ready for Monday again.

I hope this will improve somewhat when I start Remicade next week (if Iím over this horrible cold by then) but realistically I know fatigue remains a huge issue for many people even when in remission. Itís very depressing and i hope that more can be done to raise awareness of what life can be like when living with conditions like IBD. Most people think it sounds great to sleep all the time but never think about how it means you donít shower as often as you should, donít eat because itís too exhausting to make food, your house looks like a tip, you never go anywhere etc etc. Itís like being a prisoner in some ways.

Ideally I would drop down to working part time but that just isnít an option for me at the moment, and I canít see it being an option for a few years yet. But you never know, life has a way of surprising us )
Wishing good things for you with the Remicade .
03-16-2018, 08:09 AM   #642
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Wishing good things for you with the Remicade .


Thank you, fingers crossed
03-16-2018, 11:12 PM   #643
cmack
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Good luck Soph, you have my support.
03-17-2018, 01:19 AM   #644
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My doctor is considering prescribing some centralstimulantia such as amphetamines at low dose. Maybe some of you could find a doctor willing to prescribe off label?
It is perfectly safe to take a low dose therapheutic dose indefinently.
I dont worry about addiction as I am already addicted to chronic malabsorption and fatigue.
03-18-2018, 06:08 PM   #645
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Thiamine and Fatigue in Inflammatory Bowel Diseases: An Open-label Pilot Study

Published Online:1 Aug 2013

Abstract

Objectives: To demonstrate that fatigue and other disorders related to ulcerative colitis and Crohn's disease are the manifestation of an intracellular mild thiamine deficiency and not due to malabsorbtion, augmented requirements, or nutritional factors, and that this dysfunction is curable with high doses of thiamine administered orally or parenterally.

Design: In this pilot study, we treated fatigue in eight patients with ulcerative colitis and four patients affected by Crohn's disease from January to April 2011. The patients were recruited through general practitioners' surveys and among personnel and affiliated personnel of the clinic Villa Immacolata. Fatigue was measured using the chronic fatigue syndrome scale, and the determination of thiamine and thiamine pyrophosphate levels in the blood was carried out through blood tests. The levels of thiamine and thiamine pyrophosphate in the blood were normal. All patients were assigned to receive high doses of thiamine orally. Depending upon the body weight of each patient, dosage ranged from 600 mg/day (60 kg) to 1,500 mg/day (90 kg). The chronic fatigue syndrome scale as well as thiamine and thiamine pyrophosphate levels in the blood were measured 20 days after the beginning of the therapy.

Results: Ten patients out of twelve showed complete regression of fatigue, while the remaining two patients showed nearly complete regression of fatigue compared to the chronic fatigue syndrome scale scores before therapy.

Conclusions: The absence of blood thiamine deficiency and the efficacy of high-dose thiamine in our patients suggest that fatigue is the manifestation of a thiamine deficiency, likely due to a dysfunction of the active transport of thiamine inside the cells, or due to structural enzymatic abnormalities. The administration of large quantities of thiamine increases the concentration in the blood to levels in which the passive transport restores the normal glucose metabolism in all cells and leads to a complete regression of fatigue.

This pilot study suggests vitamin b1 supplementation might help.
03-19-2018, 03:59 AM   #646
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That looks so interesting. Gonna get myself some of that. If it's true it will be well worth it.
03-20-2018, 05:20 PM   #647
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Thank you for the advice, Iím my own worst enemy with Ďpushing throughí as you describe. I just tell myself if I can get to the end of the work day then everything will be fine and I can just sleep but at times it means little quality of life. It definitely gets worse as the week goes on too, I spend all weekend usually just recharging by doing very little or napping ready for Monday again.

I hope this will improve somewhat when I start Remicade next week (if Iím over this horrible cold by then) but realistically I know fatigue remains a huge issue for many people even when in remission. Itís very depressing and i hope that more can be done to raise awareness of what life can be like when living with conditions like IBD. Most people think it sounds great to sleep all the time but never think about how it means you donít shower as often as you should, donít eat because itís too exhausting to make food, your house looks like a tip, you never go anywhere etc etc. Itís like being a prisoner in some ways.

Ideally I would drop down to working part time but that just isnít an option for me at the moment, and I canít see it being an option for a few years yet. But you never know, life has a way of surprising us )
I hope that the Remicade works for you. And it might. For some of us here... when the Crohn's goes into remission... so does the fatigue. That's actually how I was in the very beginning.

But as you noted... many of us continue to have fatigue even when the crohn's is completely in check. If that's you... then its all about pacing. My Endocrinologist basically said that you have to look at the fatigue as its own disease... one that flares up with completely different triggers. Basically... the exertion becomes the trigger. So only pacing, economizing, and resting more will keep it at bay.

There are some other things that help us as well. For me, Low Dose Naltrexone helps with the brain-fog. Also... for many of us... Prednisone can be magic... but its not something to ever take continually... only as a once in a while 'shield' from fatigue. I use it for trips and social occasions.
03-31-2018, 03:27 AM   #648
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45 years with Crohn's and one thing I know absolutely... I have been tired since 1970. I don't remember what "normal" is.

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

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

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

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

Take care... Michele Lea
I know this post is old, but thank you for sharing. I like what you said....IT IS SO TRUE.
03-31-2018, 03:36 AM   #649
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My relatives don't understand that after I socialize with them for 2-3 hours that I have to go home and rest. 4-6 hours is WAY past my limit. Take care.
03-31-2018, 07:13 AM   #650
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I suffer badly with fatigue. It's not just physical exertion by mental exhaustion from interacting with people, or just concentrating.
03-31-2018, 12:30 PM   #651
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Hot weather does that to me, I do my best working and thinking in the cool weather. Some days are just up in the air though, I'm sure you all understand.
04-02-2018, 10:02 AM   #652
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My relatives don't understand that after I socialize with them for 2-3 hours that I have to go home and rest. 4-6 hours is WAY past my limit. Take care.
It is amazing how much energy it takes to be around people and engaging. Today is a rest day for me after our Easter travel/family day!
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04-02-2018, 12:00 PM   #653
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Have a good rest, Kit.
04-02-2018, 07:56 PM   #654
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Fatigue is almost worse that the other symptoms. As much as I hate living in a bathroom sometimes, the fatigue is worse. I feel so guilty for being useless. My Dad is 80 and does his best to take care of things, but at this age I should be taking care off him.

I was raised to believe when things are not going your way, work harder. And that is impossible when working hard work will send me into relapse further than I am.

I focus on the success stories I read on the internet and the two things they have in common or good diets and exercise. Many stories mention two weeks of adjustment that your body goes through to adjust, which are awful, but achievable.

Currently I am in a relapse caused by rejection of Remicade. Prednisone is all that is keeping me from crashing and burning into the hospitable again.

I saw my PA last week and she is worried due to my c-reactive protein being 181 when it should be 8. So I am seeing the head doctor in the office on April 9 after we see if I react well to the Imuran I just started.

I have a feeling the only way to beat the ever lasting fatigue is to get moving again. Also, I was an extremely active person before becoming a Crohnie, busy 6 to 7 nights a week, volleyball three nights, parties, friends, movies, plays, concerts and hikes in the mountains. I miss them all.

Some days I have a hard time getting out of bed and up the stairs, only rising to go to the bathroom or get drinks and food.

I take a lot of vitamins and follow my nutritionist's advice as much as possible.

The B-12 under the tongue has helped my legs fee like they are part of my body again. My hemoglobin is still low, but better. It makes sense since my immune system is working over-time and was retarded by drugs, I should be worn out, but I don't like it.

As soon as I get back on the road to remission, I need to fight through this and get active again before I go completely insane.

A part of me feels like a lazy bum. One thing I am learning is not to judge others. I often look good on the outside and people are so happy I lost weight and think I am fine, but on the inside I am in hell sometimes with cramps and feeling like everything is stuck on my insides and it goes slowly through my inflamed ileum then drops to my inflamed colon. Right now, I can't muster the energy to walk around the block, which upsets my dog almost as much as me.

I refuse to give up on a goal I set before the onset of this. I am going to ride over Trail Ridge Road on the dirt road next to the highest paved road in Colorado, from Estes Park to Grand Lake, where I will rest a play a few days before heading back over the 11,500 feet above sea level pass. I would like to do it at the end of this summer, it closes around October 1.

My doctors and others think I am crazy, but that just gives me more motivation. If not this summer, then next. I have a friend with Crohn's who rode his bike across Canada from the Atlantic to the Pacific. He took 6 months to get into remission. I am on my 6th month and back at zero due to a Remicade rejection. I hope to get on another Biologic and then kick this fatigue out of my life. I refuse to believe I will never achieve, I refuse to let Crohn's dictate my life. I believe I can be Victim with many excuses, a Survivor with rationalized excuses or a Thriver with no excuses.

I am not yet there, but I will have to stop being a survivor and thrive, I have no choice. I don't know how I will get there, I just know I will. And the days when I only see darkness are getting fewer.

I was 4 days away from complete organ failure and death when I first got hospitalized with my intestines completely shut down. I never want to be that close to a my demise again until my actual expiration date many years from now.

I got so much living to do, i just need to find my way out of the swamp and fatigue quicksand.
04-02-2018, 08:11 PM   #655
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Hang in there, it will get better. I have felt similar and it was true for me. You have what it takes inside of your soul to beat this! Never give up. I hope good things happen for you soon.
04-02-2018, 09:22 PM   #656
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I was up until 2:00 am with friends Saturday into Sunday this weekend. Bad mistakeó relapsing to diarrhea bouts and sleeping constantly. Pain started again. I will never do that again!!! UGH
04-02-2018, 09:30 PM   #657
Lynda Lynda
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Guess who's trying CBD oil (without the THC)or fatigue and inflammation, not to mention the bad nights sleep and arthritis/iritis etc? I have only just started but have researched it plenty on youtube and google. I will let you know how it goes but it's very early days yet.
Is there any drug interaction between your prescription medications or supplements and the CBD oil ?
04-02-2018, 09:42 PM   #658
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I wanted to thank everyone for sharing their stories. I have learned a lot by reading everyone's posts. Take Care and have a good week. ♡
04-03-2018, 03:10 AM   #659
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No problems that I've spotted, Lynda.

Welcome, Thike, we are all in the same boat. There are better days. It's a question of setting and knowing limitations.
04-03-2018, 03:38 AM   #660
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Why is there a skull emoji ?
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