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


 
08-04-2016, 08:36 AM   #601
Kit
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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!
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08-04-2016, 08:41 AM   #602
MeLee38
 
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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
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Surgeries/History:
- Bartholin Cysts, Acid Reflux, Hemoirrhoids&Bowel issues, skin rashes, fatigue, joint pain
- Anal Abscess Removed (cut through sphincter muscle) Dec 2014
- Formation of Recto-Vaginal Fistula Jan2015
- Hemorroidectomy & Advanced Flap Repair Dec 2015
- Colonoscopy May2016
- Removal of peri-anal cyst Sept 2016
- MRI July 2017
- Anal abscess Aug 2017
08-04-2016, 09:02 AM   #603
jcashen87
 
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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
08-05-2016, 07:03 AM   #604
Marie23
 
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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.
12-10-2016, 05:55 AM   #605
Iroquois_guineapig
 
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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?
12-10-2016, 10:56 AM   #606
MeLee38
 
Join Date: Mar 2016
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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!
12-10-2016, 11:31 AM   #607
ronroush7
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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?

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
12-11-2016, 03:12 PM   #608
Kit
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@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.
01-31-2017, 03:29 PM   #609
meganshealthjourney
 
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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!
01-31-2017, 03:40 PM   #610
ronroush7
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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.
02-01-2017, 01:31 PM   #611
Ali29
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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!!
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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
02-02-2017, 12:01 PM   #612
Kit
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@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.
02-12-2017, 06:42 PM   #613
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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.
04-14-2017, 04:38 PM   #614
nogutsnoglory
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Anyone else completely bedbound/housebound from their fatigue?
04-15-2017, 08:05 AM   #615
Glockola
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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.
04-15-2017, 12:00 PM   #616
Ali29
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Absolutely!! Almost 3 years now, mentally it is crushing. I try and watch funny movies.
05-06-2017, 02:35 AM   #617
kenvh
 
Join Date: May 2015
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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?
05-11-2017, 10:11 AM   #618
nogutsnoglory
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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.
05-23-2017, 04:29 AM   #619
Glockola
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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.
09-25-2017, 01:55 PM   #620
hamster139
 
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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.
09-25-2017, 06:16 PM   #621
Ali29
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That sounds like a good idea - I could do the hear monitor!!
09-26-2017, 10:02 AM   #622
Kit
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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!
11-17-2017, 09:01 AM   #623
Glockola
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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?
11-17-2017, 10:56 AM   #624
Rainbowchaser
 
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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.
11-17-2017, 11:12 AM   #625
Sophabulous
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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!
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
11-18-2017, 10:29 AM   #626
Spooky1
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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.
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