Extreme Fatigue Support Group

[Kit]

At work feeling real tired today. My muscles just don't function like they used to at all. My arms get tired from typing for too long. I used to walk over 10 miles a day at work. Now I barely want to come in to sit at my desk all day. The past month is the first time I have been feeling this level of fatigue, I have had my GI symptoms be the worst they ever were and was real low in iron. I hope that eventually, the supplements get my Iron up enough to end this extreme fatigue!

Just a note. When my iron was low I had an abscess and fistulas. When they removed the part of the colon that was the problem my iron levels are more normal now. Just a thought to look into and I am so sorry you are having to deal with the fatigue! I will tell you my iron levels are normal now, but I still struggle with fatigue. I have just learned to pace myself and rest a lot!

 

[MeLee38]

Ugh, I feel everyone's frustration. I am waiting on another specialist consult and surgery. I too suffer from an abscess and fistulas, and I find when it flares up I am extremely exhausted and struggle with even simple daily tasks. I think it is my body telling me to rest, so it can try and fight the infection. Wish you all the best

 

[jcashen87]

Just a note. When my iron was low I had an abscess and fistulas. When they removed the part of the colon that was the problem my iron levels are more normal now. Just a thought to look into and I am so sorry you are having to deal with the fatigue! I will tell you my iron levels are normal now, but I still struggle with fatigue. I have just learned to pace myself and rest a lot!

Thank you for your help. I am undiagnosed but have been dealing with GI problems my whole life. Last 5 years extreme pain as food passes through area around and below belly button. Mucus, sometimes blood in stools. Inflammation showing on tests and blood levels dropped. One week I get my scopes done so hopefully if there are complications needing surgery I can get it figured out quick. In the last 3 months I've had fevers 5 times, and extreme fatigue set in. It's been a blessing to find this forum as I have been suspecting an IBD diagnosis and there's tons of great people and info here.

Thank you all

 

[Marie23]

At work feeling real tired today. My muscles just don't function like they used to at all. My arms get tired from typing for too long. I used to walk over 10 miles a day at work. Now I barely want to come in to sit at my desk all day. The past month is the first time I have been feeling this level of fatigue, I have had my GI symptoms be the worst they ever were and was real low in iron. I hope that eventually, the supplements get my Iron up enough to end this extreme fatigue!

My fibromyalgia always flares along with GI flares.

 

[Iroquois_guineapig]

Everything is just drainging the life out of me.. if I wake up at 6 am I'll be on my way to the bathroom by 601 and immediately following a bm of any degree im more tired and ready for sleep right about the time I flush.. i have a demanding life with little time for myself and time i do have I spend begging for comfort.. from asacol to mercaptopurine and remicade infusions.. all treatments ive had done work like salt on a slug for just a few weeks then its like soakin matches in gasoline..ive had better..not perfect..but better symptom relief with cannibus alone.. I may not be in remission because of daily symptoms but I have not had a flare up in almost a year.. after two surgeries and more steroids and meds I can remember the only thing id like to know is how can I conuteract the fatigue?? I keep myself awake through it to the point of exhaustion and hallucinations because I simply do not have the option to sleep.. im desperate enough to try a new bad habbit but would like options of a higher legality.. anyone know a useful substitute for caffeine?

 

[MeLee38]

To help fight fatigue and brain fog I take a B100 complex vitamin, 4000 iu's of Vitamin D and 1200mg of Omega 3-6-9 every morning. If I forget to take them I am extremely sluggish. Also, I found when I started, it took a few days to build up in my system before I felt the full effect. I also try to hold off on my cannabis relief until later in the day whenever possible. It helps with my appetite and helps me relax and sleep, but can make me lazy and fatigued if I start it too early in the day. I try to wait until mid-afternoon to use that relief method. Best of luck!

 

[ronroush7]

Everything is just drainging the life out of me.. if I wake up at 6 am I'll be on my way to the bathroom by 601 and immediately following a bm of any degree im more tired and ready for sleep right about the time I flush.. i have a demanding life with little time for myself and time i do have I spend begging for comfort.. from asacol to mercaptopurine and remicade infusions.. all treatments ive had done work like salt on a slug for just a few weeks then its like soakin matches in gasoline..ive had better..not perfect..but better symptom relief with cannibus alone.. I may not be in remission because of daily symptoms but I have not had a flare up in almost a year.. after two surgeries and more steroids and meds I can remember the only thing id like to know is how can I conuteract the fatigue?? I keep myself awake through it to the point of exhaustion and hallucinations because I simply do not have the option to sleep.. im desperate enough to try a new bad habbit but would like options of a higher legality.. anyone know a useful substitute for caffeine?

Have you had blood work done? Are you anaemic? Do you take b12/iron?

 

[Kit]

@Iroquois_guineapig-- I am so sorry about your fatigue. Unfortunately the only solution i have found is pacing myself and that means I don't do half as much as I would like to do. Forcing myself to keep moving along just makes it worse and I need days to recover. I sleep 9-10 hours a night. Basically I have had to rethink my life and things I want to do. I don't do as much outside the home and rest a lot when I am home. Prioritizing becomes way more important. This may not be the answer you want , but I have been trying to make it work. Iron, B-12 and Vit D are really good to check. I take Fish Oil, Vit D and a B complex everyday too.

 

[meganshealthjourney]

Hi Everyone! I am new here. Currently undiagnosed, but one of my worst symptoms is extreme fatigue. Not "I wish I could take a nap at 2pm in the afternoon" fatigue, but sleep 10 hours and then cannot stay awake at work all day. I am too tired to work, to clean the house, to function.

Tests so far:

CBC: normal
Ultrasound: normal
B12 deficiency
Vitamin D deficiency
Elevated inflammation markers in c-protein reactive test
Colonoscopy/endoscopy completed 1/30/17 (yesterday). Normal, waiting on the results of the biopsies

Symptoms:
Daily nausea, bloating, severe abdominal pain and cramping in the upper left abdomen and around the belly button which worsens after eating, chronic mouth sores, vomiting at least once a week, regular bouts of 7+ days of constipation followed by violent diarrhea, complete loss of appetite, loss of nearly 20lbs since Nov. 2016 (I am 5'1, 155lbs), fever/chills.


Doing what I can to work toward a diagnosis. Doctor hasn't prescribed anything for the fatigue, which is one of the biggest hindrances to my quality of life. Any recommendations are appreciated!

 

[ronroush7]

Hi Everyone! I am new here. Currently undiagnosed, but one of my worst symptoms is extreme fatigue. Not "I wish I could take a nap at 2pm in the afternoon" fatigue, but sleep 10 hours and then cannot stay awake at work all day. I am too tired to work, to clean the house, to function.

Tests so far:

CBC: normal
Ultrasound: normal
B12 deficiency
Vitamin D deficiency
Elevated inflammation markers in c-protein reactive test
Colonoscopy/endoscopy completed 1/30/17 (yesterday). Normal, waiting on the results of the biopsies

Symptoms:
Daily nausea, bloating, severe abdominal pain and cramping in the upper left abdomen and around the belly button which worsens after eating, chronic mouth sores, vomiting at least once a week, regular bouts of 7+ days of constipation followed by violent diarrhea, complete loss of appetite, loss of nearly 20lbs since Nov. 2016 (I am 5'1, 155lbs), fever/chills.


Doing what I can to work toward a diagnosis. Doctor hasn't prescribed anything for the fatigue, which is one of the biggest hindrances to my quality of life. Any recommendations are appreciated!

You might need iron or b12 but make sure to ask your doctor.

 

[Ali29]

Welcome Meaganshealthjourney! I was where you are 4 years ago. Severe pain, nausea after eating, along with many other issues. I am at almost 20% weight loss, has your doctor prescribed anything for the nausea or have you looked at some of the natural ways to combat the nausea? Without Phenergan, I would never be able to eat. I struggle to keep my weight at 100.

Hopeful your biopsies will shed some light! Good luck!!:ghug:

 

[Kit]

@Meganshealthjourney Welcome to the forum and I hope you can get a diagnosis soon so you can get on a treatment plan. So sorry about the fatigue. It is a very debilitating symptom. Ok two pieces of information as far as I know. A vitamin B12 deficiency can cause fatigue and I think a Vitamin D deficiency can as well, so please make sure your physician is getting those addressed. Low Iron can as well, so make sure that is checked. I also try to get enough sleep and take breaks. Some days are better than others. Everyone is different so you will have to listen to your body and plan as you can. I don't plan to go out of the house everyday. I will every other day and only for 2-4 hours. I avoid activities in the evening too. But this is what I found out has worked for me.

I would suggest you keep a food and water diary to see if you can find any triggers for worsening symptoms. Most IBD patients go through a stage where they find out what foods seem to make symptoms worse. Also keep a bathroom diary including how many times a day and what type of stool. Share this with your physician to give more information.

As for nausea, I use mints and ginger ale to help that. I have also found that if I haven't eaten for an extended period of time I can get nausea. Sometimes just a little food can help.

These are strategies I have found help me, but everyone is different. Good Luck on your journey and we would love to hear how you are doing.

 

[mackraslo]

Has anyone had relief from their fatigue from Antidepressants? My Doctor gave me a prescription to help my depression and quit smoking, Wellbutrin (bupropion) but after reading reviews online..(ya i know, silly) I am having trouble convincing myself to try it. I just fear that it will make me worse or give me more issues, I just cannot go through anymore awfulness. It could really help me, but damn my mind is stubborn.

I plan to try it tomorrow morning. Just wondering if anyone had any advice or input. Thank you.

 

[nogutsnoglory]

Anyone else completely bedbound/housebound from their fatigue?

 

[Glockola]

Yes most definitely. Been like this for about a year now. Life feels worthless and now just trying to survive day by day. Also my doctor hasn't prescribed anything for the fatigue.

 

[Ali29]

Absolutely!! Almost 3 years now, mentally it is crushing. I try and watch funny movies.

 

[kenvh]

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

How did they see ur crohn in small bowel? With CT scan?

 

[nogutsnoglory]

Yes most definitely. Been like this for about a year now. Life feels worthless and now just trying to survive day by day. Also my doctor hasn't prescribed anything for the fatigue.

They should do some tests to get to the bottom of what is causing it and if nothing is found they should trial stimulants like adderal or ritalin or narcolepsy meds like Provigil which can help some people.

 

[Glockola]

They should do some tests to get to the bottom of what is causing it and if nothing is found they should trial stimulants like adderal or ritalin or narcolepsy meds like Provigil which can help some people.

Yes most definitely,. I had the exact thing in mind also provigil is none addictive.
Thank you so very much for very helpful advice.

 

[hamster139]

Hi All. Just wanted to update on my progress fighting the extreme fatigue.

After getting progressively worse for 10 years straight, I've made significant improvements over the last year.

Two things that have helped:

1) Pacing using a heart rate monitor. Info here: https://www.facebook.com/groups/ME.CFS.HRM/

2) Low dose Naltrexone (1.5 mgs per day).

The pacing with the heart monitor has helped me stop crashing. The LDN has helped with sleeping and brain fog.

I still have the same old intolerance to exertion, but having an 'alarm' that goes off when I go over a threshhold has been a lifesaver to stop the crashes the following days. And after I stopped crashing... I could realistically investigate other things that might help.

 

[Ali29]

That sounds like a good idea - I could do the hear monitor!!

 

[Kit]

Thanks for the info hamster! I have to pace myself all the time. It is the thing that helps me the most. Spoon Theory is my favorite explanation to people!

 

[Glockola]

Anyone been put on adderall or methylpenidate or similar stimulants for treating their chronic fatigue that comes with intestinal disorders? I have a severe case.

I can barely function and I think I'd much rather be put on a low dose just to be able to function, stay employed and provide for my family.

Anyone out there can offer advice or experience regarding this form of treatment?

 

[Rainbowchaser]

Interesting! I hope someone has information on that. Do you have a “sick” feeling with the fatigue or does that happen separately? When I have flares I have such an intense influenza/food poisoning/hangover style with the fatigue.

 

[Sophabulous]

Interesting! I hope someone has information on that. Do you have a “sick” feeling with the fatigue or does that happen separately? When I have flares I have such an intense influenza/food poisoning/hangover style with the fatigue.

I get that too! I told my GI recently that I always feel like I’ve just got over the flu. I can get out of bed and do things but it’s very taxing, and I just have a low grade ache and sickly feeling all the time. I actually made a GP appointment yesterday to see if anything can be done as all my bloods for iron, B12 etc came back normal.

So frustrating!

 

[Spooky1]

I haven't tried anything for the fatigue. I just have to fail at getting things done. It's such a problem with this Crohn's. I would do anything for energy. Not tried stimulant energy drinks as I have an issue with caffeine. Good luck to you though, Glockola. Let us know if you find something to try and also how it works. Thanks.

 

[Rainbowchaser]

I am on a 50mg prednisone taper and had to stop tappering @ 45mg due to symptoms starting up. The prednisone healed the abscesses, nausea, vomiting, fatigue within 3 days! I am waiting on my rheumatologist now to discuss starting biologics. GP says the prednisone is not a safe choice for long term. I hoped to avoid biologics for another few years but I am finally starting to feel better! The fatigue and ‘sick’ feeling is finally eased off.

Hope you guys find something that works for you too

 

[Crohn2357]

In my experience thiopurines (azathioprine and 6mp) can also cause fatigue.

From what I have read on the forums, reducing the dosage and taking the drug just before the bed (instead of halving the dosage through morning and evening) might help with this side effect.

 

[Spooky1]

Hi, Qante, I must look up nootropicboost. Never heard of them, but desperately need to improve my memory. I will look them up and see if they are over the counter ones.

 

[Sophabulous]

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

Hi Quante,

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

Thanks in advance [emoji4]

 

[Glockola]

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

 

[Sophabulous]

The fatigue sucks so bad. Anaemia is probably the main cause in many people.

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

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

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

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

I gave up my second job in 2016 and I had about 3 months respite before my main full time job got really crazy. This got worse and worse until in October 2017 my body completely downed tools and I couldn’t get out of bed at all through the exhaustion and sickness. I saw a GP who checked iron and B12 and they were both fine.

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

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

Things are looking up now as our workloads are lightening, but the fatigue is lifting painfully slowly. Both of the GP’s I saw seemed to seriously underestimate how debilitating this was, one was sympathetic but unable to help and the other was quite firm about how other people feel the same and manage fine. I’m in my mid twenties, I shouldn’t be feeling like I go to work already wiped out and come home to collapse in my bed for 12 hours!

 

[Glockola]

I think you could be tired because of malabsorption. The blood test are not sensitive enough for detecting minor deficiencies of protein for example. Even if you do a blood and check for B12, Folate, Iron, vitamin D and so on.
Albumin is not sensitive enough. Most docs are unaware of more sensitive protein markers such as transferrin, transthyretin and retinol binding protein, and don't know how to apply them in clinical practice. Many deficiencies are subclinical and not routinely detectable until severe.

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

 

[Sophabulous]

I think you could be tired because of malabsorption. The blood test are not sensitive enough for detecting minor deficiencies of protein for example. Even if you do a blood and check for B12, Folate, Iron, vitamin D and so on.

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



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

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

Thanks again [emoji4]

 

[Glockola]

There are no tests you can do to identify subclinical malnutrition, you would need a control group of similar aged healthy people to compare with. Just make sure your basic labs are in range. Mainly Hgb, albumin, thyroid function and vitamins/minerals.
Even if they would find an underlying reason for our fatigue? The treatment would still be the same. Trying to control the inflammation, healing the intestine, take vitamins and eat healthy.
A lot of people are not 100% functioning in remission either, some never experience "full" remission. It just become the new "normal" after a while.
We also have to watch out for depression and anxiety. That is something I struggle with since becoming ill.
I think the best method is to be as active as we are comfortable with. If I surrender to much to the fatigue it just makes depression worse.
I think it is really awesome you are still able to work. Some people here are not functioning well enough. Those of us that do manage to work have to sacrifice all of our free time.

 

[Spooky1]

Guess who's trying CBD oil (without the THC)or fatigue and inflammation, not to mention the bad nights sleep and arthritis/iritis etc? I have only just started but have researched it plenty on youtube and google. I will let you know how it goes but it's very early days yet.

 

[ronroush7]

Guess who's trying CBD oil (without the THC)or fatigue and inflammation, not to mention the bad nights sleep and arthritis/iritis etc? I have only just started but have researched it plenty on youtube and google. I will let you know how it goes but it's very early days yet.

Wishing you good things.

 

[hamster139]

Things are looking up now as our workloads are lightening, but the fatigue is lifting painfully slowly. Both of the GP’s I saw seemed to seriously underestimate how debilitating this was, one was sympathetic but unable to help and the other was quite firm about how other people feel the same and manage fine. I’m in my mid twenties, I shouldn’t be feeling like I go to work already wiped out and come home to collapse in my bed for 12 hours!

I think that was the biggest problem for me initially. That the doctor's I initially saw thought the fatigue was just being 'tired'. My GI was no help at all.. thinking it was stress related. My GP definitely did all the tests he could.. to look for any sort of hormonal issues, deficiency, sleep issues, etc. And nothing.

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

 

[Sophabulous]

I think that was the biggest problem for me initially. That the doctor's I initially saw thought the fatigue was just being 'tired'. My GI was no help at all.. thinking it was stress related. My GP definitely did all the tests he could.. to look for any sort of hormonal issues, deficiency, sleep issues, etc. And nothing.



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

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

I hope this will improve somewhat when I start Remicade next week (if I’m over this horrible cold by then) but realistically I know fatigue remains a huge issue for many people even when in remission. It’s very depressing and i hope that more can be done to raise awareness of what life can be like when living with conditions like IBD. Most people think it sounds great to sleep all the time but never think about how it means you don’t shower as often as you should, don’t eat because it’s too exhausting to make food, your house looks like a tip, you never go anywhere etc etc. It’s like being a prisoner in some ways.

Ideally I would drop down to working part time but that just isn’t an option for me at the moment, and I can’t see it being an option for a few years yet. But you never know, life has a way of surprising us )

 

[ronroush7]

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

I hope this will improve somewhat when I start Remicade next week (if I’m over this horrible cold by then) but realistically I know fatigue remains a huge issue for many people even when in remission. It’s very depressing and i hope that more can be done to raise awareness of what life can be like when living with conditions like IBD. Most people think it sounds great to sleep all the time but never think about how it means you don’t shower as often as you should, don’t eat because it’s too exhausting to make food, your house looks like a tip, you never go anywhere etc etc. It’s like being a prisoner in some ways.

Ideally I would drop down to working part time but that just isn’t an option for me at the moment, and I can’t see it being an option for a few years yet. But you never know, life has a way of surprising us )

Wishing good things for you with the Remicade .

 

[Sophabulous]

Wishing good things for you with the Remicade .

Thank you, fingers crossed [emoji4]

 

[cmack]

Good luck Soph, you have my support.

 

[Glockola]

My doctor is considering prescribing some centralstimulantia such as amphetamines at low dose. Maybe some of you could find a doctor willing to prescribe off label?
It is perfectly safe to take a low dose therapheutic dose indefinently.
I dont worry about addiction as I am already addicted to chronic malabsorption and fatigue.

 

[Crohn2357]

Thiamine and Fatigue in Inflammatory Bowel Diseases: An Open-label Pilot Study

Published Online:1 Aug 2013

Abstract

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

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

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

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

This pilot study suggests vitamin b1 supplementation might help.

 

[Spooky1]

That looks so interesting. Gonna get myself some of that. If it's true it will be well worth it.

 

[hamster139]

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

I hope this will improve somewhat when I start Remicade next week (if I’m over this horrible cold by then) but realistically I know fatigue remains a huge issue for many people even when in remission. It’s very depressing and i hope that more can be done to raise awareness of what life can be like when living with conditions like IBD. Most people think it sounds great to sleep all the time but never think about how it means you don’t shower as often as you should, don’t eat because it’s too exhausting to make food, your house looks like a tip, you never go anywhere etc etc. It’s like being a prisoner in some ways.

Ideally I would drop down to working part time but that just isn’t an option for me at the moment, and I can’t see it being an option for a few years yet. But you never know, life has a way of surprising us )

I hope that the Remicade works for you. And it might. For some of us here... when the Crohn's goes into remission... so does the fatigue. That's actually how I was in the very beginning.

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

There are some other things that help us as well. For me, Low Dose Naltrexone helps with the brain-fog. Also... for many of us... Prednisone can be magic... but its not something to ever take continually... only as a once in a while 'shield' from fatigue. I use it for trips and social occasions.

 

[Anna's Bandit]

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.

 

[Anna's Bandit]

My relatives don't understand that after I socialize with them for 2-3 hours that I have to go home and rest. 4-6 hours is WAY past my limit. Take care.

 

[Spooky1]

I suffer badly with fatigue. It's not just physical exertion by mental exhaustion from interacting with people, or just concentrating.

 

[cmack]

Hot weather does that to me, I do my best working and thinking in the cool weather. Some days are just up in the air though, I'm sure you all understand.

 

[Kit]

My relatives don't understand that after I socialize with them for 2-3 hours that I have to go home and rest. 4-6 hours is WAY past my limit. Take care.

It is amazing how much energy it takes to be around people and engaging. Today is a rest day for me after our Easter travel/family day!

 

[cmack]

Have a good rest, Kit.

 

[thike1966]

Fatigue is almost worse that the other symptoms. As much as I hate living in a bathroom sometimes, the fatigue is worse. I feel so guilty for being useless. My Dad is 80 and does his best to take care of things, but at this age I should be taking care off him.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I got so much living to do, i just need to find my way out of the swamp and fatigue quicksand.

 

[cmack]

Hang in there, it will get better. I have felt similar and it was true for me. You have what it takes inside of your soul to beat this! Never give up. I hope good things happen for you soon.

 

[London]

I was up until 2:00 am with friends Saturday into Sunday this weekend. Bad mistake— relapsing to diarrhea bouts and sleeping constantly. Pain started again. I will never do that again!!! UGH

 

[Anna's Bandit]

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 ?

 

[Anna's Bandit]

I wanted to thank everyone for sharing their stories. I have learned a lot by reading everyone's posts. Take Care and have a good week. ♡

 

[Spooky1]

No problems that I've spotted, Lynda.

Welcome, Thike, we are all in the same boat. There are better days. It's a question of setting and knowing limitations.

 

[Anna's Bandit]

:hallo3:
Why is there a skull emoji ? :lol::lol:

 

[cmack]

Best wishes to all.

 

[Anna's Bandit]

There are no tests you can do to identify subclinical malnutrition, you would need a control group of similar aged healthy people to compare with. Just make sure your basic labs are in range. Mainly Hgb, albumin, thyroid function and vitamins/minerals.
Even if they would find an underlying reason for our fatigue? The treatment would still be the same. Trying to control the inflammation, healing the intestine, take vitamins and eat healthy.
A lot of people are not 100% functioning in remission either, some never experience "full" remission. It just become the new "normal" after a while.
We also have to watch out for depression and anxiety. That is something I struggle with since becoming ill.
I think the best method is to be as active as we are comfortable with. If I surrender to much to the fatigue it just makes depression worse.
I think it is really awesome you are still able to work. Some people here are not functioning well enough. Those of us that do manage to work have to sacrifice all of our free time.

I agree !

 

[Anna's Bandit]

Hot weather does that to me, I do my best working and thinking in the cool weather. Some days are just up in the air though, I'm sure you all understand.

Whoa, it is °95 outside right now at 6:25pm. Hot weather makes me stay inside in Arizona in the summertime, just like the winter weather in the Midwest makes people stay inside because it is so cold. I hope your temperature is not 95 degrees. :yfaint:

 

[cmack]

We get high 90's for a couple months usually, not always. If we are lucky we have a nice balance, just not the last couple years. It has been either unseasonably cold or abnormally hot and dry with just a very short spring and fall. I hope it returns to a regular pattern soon.

 

[thike1966]

Fatigue is the hardest thing for me to accept.

I am not lazy, I am not a slacker, but I am not as much a part of the world as I need to be.

I know remission is possible, I know that I am lucky to not have had surgery yet.

It just gets hard when I can't be the man I was made to be, I can't find the strength that used to be my strongest ally. Bloating from Prednisone, feels like making a deal with the Devil, but no denying it works. Hopefully I will get another option, waiting on blood work, Entivio or Stellara, if I can get them approved. remission is on its way, just not quick enough.

 

[ronroush7]

Fatigue is the hardest thing for me to accept.

I am not lazy, I am not a slacker, but I am not as much a part of the world as I need to be.

I know remission is possible, I know that I am lucky to not have had surgery yet.

It just gets hard when I can't be the man I was made to be, I can't find the strength that used to be my strongest ally. Bloating from Prednisone, feels like making a deal with the Devil, but no denying it works. Hopefully I will get another option, waiting on blood work, Entivio or Stellara, if I can get them approved. remission is on its way, just not quick enough.

I hope you can get approved for one of them.

 

[cmack]

You have my support thike. May remission be in the near future for you.

 

[Anna's Bandit]

Fatigue is the hardest thing for me to accept.

I am not lazy, I am not a slacker, but I am not as much a part of the world as I need to be.

I know remission is possible, I know that I am lucky to not have had surgery yet.

It just gets hard when I can't be the man I was made to be, I can't find the strength that used to be my strongest ally. Bloating from Prednisone, feels like making a deal with the Devil, but no denying it works. Hopefully I will get another option, waiting on blood work, Entivio or Stellara, if I can get them approved. remission is on its way, just not quick enough.

:hang:

 

[Glockola]

I would recommend getting a script for Methylphenidate or Lisdexamphetamine. You can take it on days where you need extra energy. I got it prescribed from my psychiatrist.
I would of course advice to try other ways to manage first. But for me this has been the only thing that has given me some energy back. Of course it can be addictive and probably not good in the long run. But quality of life can be too low sometimes. So it is for those whom are willing to make the compromise.

I just take a low dose. So don't feel drugged up or anything. Just slightly more energy and able to concentrate.

 

[Anna's Bandit]

Grrr. I just lost my post.

 

[Spooky1]

I can't seem to find it either, lol.

 

[Anna's Bandit]

i can't seem to find it either, lol.

......

 

[Marley's Mom]

Anyone else completely bedbound/housebound from their fatigue?

I haven't able to be active in over a year. I'm lucky to have a wonderful hubby. I average getting out of the house to go to a Dr appt with my hubs driving me about once a month. The rest of the time I'm in bed.

 

[Marley's Mom]

They should do some tests to get to the bottom of what is causing it and if nothing is found they should trial stimulants like adderal or ritalin or narcolepsy meds like Provigil which can help some people.

My Dr tried giving me Adderall for the fatigue and it didn't help me. But someone else might have a different outcome.

Has anyone tried the high dose B1 and had good results?

 

[Marley's Mom]

Thiamine and Fatigue in Inflammatory Bowel Diseases: An Open-label Pilot Study

Published Online:1 Aug 2013

Abstract

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

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

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

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

This pilot study suggests vitamin b1 supplementation might help.

Has anyone tried this? and did it help?

 

[cmack]

I haven't tried it, but I bet someone else will be along soon. Welcome to the forum.

 

[Anna's Bandit]

:bigwave: Hi Marley's Mom.

 

[Anna's Bandit]

There's a "chronic fatigue syndrome scale "

 

[thike1966]

My nutritionist and three doctors, suggested B12 and D3. That would be my GP, GI and the doctor that leads my support group said they are the happy vitamins for Crohn’s.

With my ileum imgalmed, where these vitamins are not being absorbed, I use liquid under my tongue, called sublingual. B12 helped correct my low blood oxygen, which was at 65% and is now 95%.

I was also told it is very difficult to overdose B and D vitamins as long as you drink enough, they are expelled in urine.

QUOTE=Marley's Mom;1009624]My Dr tried giving me Adderall for the fatigue and it didn't help me. But someone else might have a different outcome.

Has anyone tried the high dose B1 and had good results?[/QUOTE]

 

[Anna's Bandit]

I only take B12 and D3. My doctors recommend these based on all my current health conditions.
Take care

 

[Marley's Mom]

I've been taking B-1(Thiamine) for about 3 days now and I'm hoping that sometime in the next couple of weeks it might make a difference. I bought Solgar brand from Amazon and I'm taking 1,500 mgs a day. No bad side effects yet, but no big difference yet either.

 

[cmack]

I've been taking B-1(Thiamine) for about 3 days now and I'm hoping that sometime in the next couple of weeks it might make a difference. I bought Solgar brand from Amazon and I'm taking 1,500 mgs a day. No bad side effects yet, but no big difference yet either.

I hope it helps. Be sure to ask the doctor about the proper dosages though. I know it's a pain, but you are way better safe than sorry. I wish you all the very best. Let me know if it does help.

 

[Marley's Mom]

I hope it helps. Be sure to ask the doctor about the proper dosages though. I know it's a pain, but you are way better safe than sorry. I wish you all the very best. Let me know if it does help.

I will. I see him tomorrow. It will be an endurance test as well. It's a 3 hr round trip and it's even hotter there than it is here. I call him a quack, but so far in the last 3 years he's the only Dr I've seen that doesn't freak when he sees my med list.
Thiamine seems to be working!!!

 

[cmack]

Good luck tomorrow... I call some of them quacks too...LOL I'm sure glad he isn't freaking out on you. Let us know how you do...Cheers!

 

[Marley's Mom]

I've been on liquids for a while now to give my gut a rest hoping to avoid another surgery.
Yesterday, was interesting. I'm glad I was up and on the move early other wise I'd have cancelled. My hour and a half drive to get there was enjoyed with a bout of nausea about halfway there. Luckily, I carry nausea meds. Then came the screaming headache because I need new glasses but I want to consult with my Endo first and an eye surgeon.
Then by the time the Dr finally got to see me i was so dehydrated my hands kept doing weird things. One was working at becoming a claw that I have to physically straighten out while the other was waving at the quack and it wasn't me. My knee was also joining in and giving me fits. I mentioned I probably need to take some Potassium and he wrote me a script for some medicated cream for my spasming extremities and told me all about the thrills of Carpal Tunnel surgery. Yep, he really is a quack. But he fills my meds for now.:yrolleyes:
The report on high therapeutic dose of Thiamine(B1) is he's never heard of anyone ODing on B Vitamins or Marijuana. Did I mention he also owns the towns Marijuana Dispensary and advertises it in his waiting room?? Marijuana is legal in my state for recreational use as well as for medical issues. I think he had been into his stash yesterday before I got there. Oh well!!
I had called his office early to give his office manager the list of scripts I needed so they didn't write scripts for stuff I don't need for a while. On my way home the Chronie gut pain decided to rear it's ugly head. There's no reason for me to need a pain pill, all I'd had all day was water, but I guess it was a lot of work digesting the water and my body decided to tell me about it. I couldn't wait to get home and into my Jammies.
Whew!! What a day that I won't need to repeat for a few months or ever if one of the Dr's I'm seeing this month can advise me on a good Primary Care Dr. Relocating while fun, has it's drawbacks.
Today is a new Endo. The one I already tried was older than Moses and about that up to date on the miracles of modern medicine. I'm seeing a different Endo, same office, but born in the last half of the century, for my Hashimoto's Disease and to check up on the nodule on my Adrenal gland.
Tomorrow, I think I'm spending in bed!
Oh, and despite how lousy I felt I really didn't have a problem getting ready to go out the door. Usually I want a nap after just getting ready to leave the house. I hadn't slept well the night before but I actually had the energy to go forward yesterday, sleep deprived and all.
I hope everyone has a safe and enjoyable 4th of July or whatever you celebrate in your country.

 

[cmack]

That really does sound just a little bit different... I'm sure glad you got that appointment over with. Happy 4th of July to you too. Keep in touch.

 

[Marley's Mom]

:heartay 5 of 1,500 Mgs Vit B1, I should be laying in bed trying to get over the trip yesterday. It would normally take me a couple of days. I woke up at 3 and put some things away and recovered a stool before 5. I feel better than I have in a couple of years and I have another appt with a different Dr today that I wasn't looking forward to. I've already had a short nap and I'm ready to shower and get ready to go again, no problem. this is absolutely amazing and I'm hoping it just gets better if it can! I don't remember feeling this well in a very long time!
I hope everyone enjoys the 4th and then go shopping for some Thiamine (B1). This is incredible!! My appt is with an Endocrinologist because I also have Hashimoto's Disease and that's another recipe for Fatigue which is why I have an appt hoping for help. I guess I'll just let him address my meds and not worry about asking about the Fatigue.

 

[cmack]

Good luck tomorrow at your appointment. I'm happy that you are feeling better, I truly hope it lasts. I like your picture of the dog, I love dogs... Cheers!

 

[Marley's Mom]

Thanks. That's Marley, my dog. I think he's gorgeous!

 

[cmack]

 

[Glockola]

Vyvanse has really helped me out. Keeps me productive for 8 hours. Today managed to move the lawn, clean the pool, power wash the deck and play with my son in the afternoon.
I have become dependent on speed in order to function. If you are having problems with debilitating fatigue and you havent yet tried stimulants, at least try it and see IF it COULD help make life a bit easier.

 

[cmack]

I'm glad it helps you and I wish you the very best. I'm sorry you feel addicted though. I had to look it up! I hadn't heard of Vyvanse. But I looked it up here, it seems like it's given to kids as well... interesting. Here is a link about it...https://www.drugs.com/vyvanse.html

 

[cmack]

It takes about five cups of coffee to get me wired, unless it's hot... then nothing works and major fatigue sets in. It seems the hotter I get the more I suffer. C'est la vie!

I wish everyone here the best!

 

[thike1966]

Marley' s Mom,
I started B12, Iron and D3 and they do wonders. My blood oxygen was low due to my hemoglobin at 65%. My nutritionist advised me to do the B12 sublingual, liquid under the tongue. it was amazing and my hemoglobin got up to 85% at the last blood test. I felt a lot better.

I stuck with the nutritionists diet, no more processed sugars, gluten nor lactose. I cheat now and then, but get right hack on track. For example, at the 4th of July Party where my neighbors always request my creme brulee at all the parties. I made a double batch and got rave reviews from the new faces in the crowd and the host of the party put four aside for later, which is fine be me. He makes the best smoked ribs I've ever had. So I had the ribs and a creme brulee, but no.soda nor other tempting sweet treats.

I also stay true to my meds, even though it took three tries with Remicade. Imuran and finally Humira is working with the continued Imuran and Prednisone which I'm nearly tapered off of. I'm cautiously optimistic because I've crashed hard each time it feels like the drugs are working.

I went on a date last Sunday with a girl I had not seen in 30 years, visiting from Idaho. We mostly walked around Downtown Denver and went to a coffee house. The next day we went to a Colorado Rockies baseball game.

I've spent the last 4 days recovering. My body is still weak. It was painful walking up the stadium stairs, but I quietly endured. My vision goes blurry when I walk around due to my eyes swelling and cornia warping with the slight increase in bloods pressure. A side affect of Prednisone that my ophthalmologist says will correct a few months after I'm off the steroids. His brother has Crohn's.

The game eventually came into focus and they won. It was a lot of fun both nights. LeeAnn is a nurse and very understanding of my condition. I'm planning on going to visit her in Idaho when I get back on my feet.

It was kind of a mistake to go to baseball game with blurry vision and shackey legs. The stairs are steep and I nearly fell down. Luckily I caught myself and no one noticed. That was four days ago and I'm still sore. It was physically challenging but not the dumbest thing I've ever done for love. So I guess in the end it was well worth it.

I guess my point is, the there is hope for all of us when we get the right drugs and supplements.

 

[Glockola]

Seriously 2 cups of coffee gives me terrible diarrhoea, 5 cups would be a great way to clean out my system for the day. Vyvanse doesn't seem too hard on the digestion. I take it after a full breakfast.
Agree about hot weather worsening fatigue, if I get too hot I get bad anxiety.

 

[nogutsnoglory]

Thiamine and Fatigue in Inflammatory Bowel Diseases: An Open-label Pilot Study

Published Online:1 Aug 2013

Abstract

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

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

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

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

This pilot study suggests vitamin b1 supplementation might help.

This is very interesting! I am thinking of giving this a try because B vitamins are water soluble and we pee them out. A little concerned at such a high dose but it doesn't appear to have bad effects maybe I will try 600mg not 1500mg and see what happens and go up if needed.

 

[Marley's Mom]

I've been on B-12 since my first surgery in 1990. They taught my hubs how to give me the injections and we still do it every week. My last Dr raised my Vit D3 to 4,000 mgs a day since I had been taking 2,000 based on my own research, but didn't have it on my drug sheet. She told me to start taking 2,000 a day and when I told her I already was she upped it to 4,000. I also take Magnesium and Potassium since I have no valves, liver bile and everything I eat just goes right thru me and like CMack heat is a killer for me and it's hot out if I don't take the potassium i wind up with my hands being stuck like claws and I have to literally pry my fingers down to a normal straight hand and I also get cramps in my legs that are killer without it. I've had 1 transfusion about 5 years ago. It was for 2 units of platelets. I have no idea what that was about, but it was needed. I had no signs of bleeding anywhere. I can't take iron in any form, we've tried them all.
And now my little journey with the Vit B1 aka Thiamine. It's been about 2 weeks and I managed a 3 hr appt with a pain specialist yesterday and then a trip to the Chiropractor. I went home and just wanted my bed and PJ's. I did relax in my PJ's for an hour or so then I got up and had dinner with the hubs and watched some Tv. I went to bed about 8 because I was exhausted and I tried to stay in bed later today since I first woke up around 3:30. I managed to go back to sleep until about 9. Now I'm going to go start some laundry. Normally I'd be in be for today and tomorrow but since the B1 has built up in my system I actually feel ok. I'm not going to go nuts but a load of laundry seems doable and I haven't managed to do it for quite a while. It involves stairs and for me that's a killer. Because of my size I am taking 1500 mgs a day. I am also taking the highest dose because I have no idea where it's metabolized in my system and so much of my intestines and small bowel have been removed that sometimes I wonder if I get the benefit of anything. Like the Vit D, according to the blood test I had almost none in my system even tho I was on a healthy dose of it. So, i just go to horse doses to get the same effect. LOL!
Anyone else looking for help with the fatigue I would definitely try a good quality Vit B1 supplement.
Thanks everyone for the imput!! :dusty:

 

[thike1966]

I take B12 sublingual, under my tounge and it goes right to my bloodstream. I hold it there for 30 seconds and swallow. Maybe you can get your D vitamin that way.

 

[cmack]

I'm glad you have a bit more energy, I did some wash today too. It's rainy so I figured why not... I looked it up and there is something called Cholecalciferol Sublingual Spray. Cholecalciferol is vitamin D3. Here is a link...https://www.drugs.com/cdi/cholecalciferol-sublingual-spray.html

Cheers!

 

[hamster139]

Was reading some posts about Vyvanse. It also has helped, but like any other medication, if you use it all the time, you build tolerance.

I try to use it 5 days out of the week. Basically, I take out 5 capsules, then lock up the rest for the week.

Also, to those using stimulants... beware. Don't physically 'overexert' yourself while your on it. That can cause you to crash. I personally think it's best used for mental busywork.

 

[cmack]

I use the mnemonic method, I learned it in college psychology. It involves associating something very familiar or similar in your mind to the word to be remembered. For instance, I always remember hydrangea by thinking of a drain and the hydra portion being water. It reminds me every time. Look it up it works!