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Crohn's Disease Forum » General IBD Discussion » How much does fatigue affect you?


03-30-2016, 10:23 PM   #1
Linnie
 
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How much does fatigue affect you?

So I have been in remission now for about 10 years and am almost symptom free but am still dealing with a lot of fatigue.

It isnt complete exhaustion, but it feels a lot like I've had a really late night and when I wake up in the morning its like ive not slept and I have to force myself up and it continues throughout the day.

I have been tested for everything under the sun, Ive even had a sleep test which all come back normal.

As a last resort my Dr seems intent on putting me on anti depressants to try and combat the tiredness, but I really don't want to go back on any drugs, especially something as serious as anti depressants..

Does anyone else have this issue? It is a Crohns thing or should I keep searching for some sort of other underlying problem?

Id love to hear what others have done to combat fatigue.
03-30-2016, 11:48 PM   #2
ronroush7
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There is a group in here called Extreme Fatigue Support Group. You might want to check it out. I hope you get answers soon.
03-31-2016, 12:08 AM   #3
fuzzy butterfly
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Hi Linnie..ditto im just the same. In remisson, no meds,except painkillers for joint pain. But im as fatigued as hell. Sleep ok most nights so dont think its that. I do work full time but i did b4 crohns and wasnt this tired. Iv had all vitamin mineral etc tests all good. I think its just a by product of crohns...
Old age may be in play to in my case lol..
Best wishes 💕💕
03-31-2016, 12:35 AM   #4
tots
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For sure, I have had extreme fatigue in the past 8-9 months. I have low vitD.
I am also on Remicade. Dragging myself out of bed every morning is getting hard. Itsgetting old wishing I was crawling right back into bed before I even get out of bed.


Lauren
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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
03-31-2016, 01:18 AM   #5
fuzzy butterfly
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Defo lauren.. i used to bounce outa bed at the crack of dawn.. now the crack of dusk would be hard work.. no chance of bouncing either lol ☺💕
03-31-2016, 06:39 AM   #6
Beach
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That has been my main problem the last decade. I've been able to get the stomach working most of the time. The chronic fatigue and feeling of being in a fog though can be a struggle to push through every day.

Of late I've been working on a new diet idea that has helped. I'm following a wild caught pescetarian diet mainly. With that I've had days where my energy levels were much higher, and muscle aches and pains gone. The improved energy level isn't there every day. I suspect to much fiber can be harmful for my energy levels. Overall though, I'm pleased and plan to stick with the diet. I hope over time the fatigue issues will continue to improve.

After a few more months if the diet turns out to not work as hoped, I'll probably be looking to try low dose naltrexone (LDN). I've read recently that LDN helped some with low energy levels see improvements.
03-31-2016, 06:52 AM   #7
shamrock15
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Add me to the list of chronically fatigued. Tried looking at possibility of diabetes due to my high sugar intake, wasn't there or even pre diabetic, so that was good. Had all nutrients checked, nothing showing up. Haven't felt rested on waking up for probably 20 years now. Accepted that it likely won't change. It sometimes is hard to know when to accept parts of this disease and when to have them looked at. Based on posts in here I believe I have Raynaud's but I don't want to look like I run to docs every time something is a little off.
03-31-2016, 10:42 AM   #8
Bufford
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I am an afternoon person, and its the only part of the day where I can get anything meaningful done. Mornings drag on from the time I get out of bed until I finally get going by about noon. When I wake up I do not know who I am or where I live at first. One time the phone rang when I woke up and was annoyed who was calling at that hour and it was my ride in to the airport. I am so tired at that time of day it wasn't on my radar that I had to go on the trip. It should give an idea of how tired I am upon waking up. It takes all morning together with several trips to the bathroom/outhouse before I am ready for the day.

Afternoons and evenings are when I function best, and nights I toss and turn like a washing machine trying to chase away the cramps, waking up several times to urinate.
03-31-2016, 03:29 PM   #9
fuzzy butterfly
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Oh the joys of crohns eh !!! It just keeps on giving dont it 😠 argh !!!
03-31-2016, 05:18 PM   #10
AJC - Australia
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fatigue has definitely got worse for me … lately i have been taking guarana, it is plant based….check it out…..it doesnt affect me like caffeine does, if i drink coffee(for example) i need to go to the loo straight away…for me, not so with gurana….i take it as a powder in a smoothie with a banana and cocnut water each morning and after lunch….i hope it helps someone else as it has to me.

the other path i went on with fatigue was looking at the liver function…..worth looking at, it may be your liver, if you are on medications like infliximab or immune suppresants…your liver might be labouring JUST ENOUGH to slow you down…

Another thing worth looking at is, if you have taken cortisone for long periods, and then you got off cortisone, then your body may not be producing enough cortisol….the only way they can really test this is a 24 hour urine sample and compare the levels of cortisol in your urine to a normal persons….

Another thing worth looking at is your stool sample….and how much fats you are absorbing……often fatigue can be simply malnutrition…

And obviously get some B12 injections.

At ronroush - be stoked if you could put this in the fatigue support group??? I dont know how to…

cheers from Australia!!!
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03-31-2016, 05:47 PM   #11
Linnie
 
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Yes its frustrating, I guess the most frustrating part is knowing that feeling this tired isnt normal, and then not knowing if it just Crohns that is causing it, or if its something else that im missing.

My next step was to go see a Naturopath and get some advice.. but again, not sure if this will be a waste of money along with the unnecessary sleep tests and colonoscopy...
04-01-2016, 10:26 AM   #12
Bufford
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Last night pain, cramps and urinating every 45 minutes kept me up from 3 am until 6 am and then I finally got two hours of sleep before getting up. Its going to be a slow foggy shrouded in pain day today for me.
04-01-2016, 10:27 AM   #13
ronroush7
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Last night pain, cramps and urinating every 45 minutes kept me up from 3 am until 6 am and then I finally got two hours of sleep before getting up. Its going to be a slow foggy shrouded in pain day today for me.
Sending support.

04-01-2016, 12:16 PM   #14
fuzzy butterfly
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Oh bufford that sounds a rough deal you got there mate.. can you not take it back n get it exchanged for a much nicer deal...IF ONLY EH !!!
Hope you feel better soon mate.. hugs 💕
04-01-2016, 02:25 PM   #15
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I was going to open a thread about this. I don´t have really symptoms right now, i feel good part from the fatigue, no pain but the fatigue don´t go away. I feel so tired i sleep about 10-11 hours a day no joke and still feel like i didn´t sleept. I feel tired. I take 2 things of salofalk everyday and 2 pills of aziatoprine(imuran) i don´t know how to spell it. I take too mirtazapine 15mg i don´t know if i should ask my doctor to stop the mirtazapine or take more than 15mg.
04-01-2016, 06:45 PM   #16
Beach
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I shouldn't complain but I had one of those odd energy days. Yesterday was slow, with lots of fatigue and low energy. This morning started out the same. Then this afternoon it was as if the energy button was pressed and all engines were go!

At least of late I've been seeing partial relief from the low energy. I credit the diet I'm following for that. I'd like to make the change to full time powered up though.
04-01-2016, 07:04 PM   #17
ronroush7
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I would like to feel fully charged

04-01-2016, 07:25 PM   #18
Beach
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I would like to feel fully charged
If I could I would, I'd share what it feels like! It was magical to be near full charge this afternoon.

Yeah as I was joking to myself, seeing the jobs report reported in the news today, most of the new jobs created were part time work. That must be what my energy plant MtDNA believes, they think they have a part time job.
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