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Crohn's Disease Forum » General IBD Discussion » Are you ever fatigued even when NOT flaring?


View Poll Results: Do you ever have fatigue even when not flaring?
Yes, sometimes 96 96.00%
No, never 4 4.00%
Multiple Choice Poll. Voters: 99. You may not vote on this poll

 
10-04-2012, 12:55 PM   #1
UncleChuckSucks
 
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Are you ever fatigued even when NOT flaring?

I have had UC for 8 years now. I'm a 28 year old woman, and this is my first time on any kind of forum on the topic. I am extremely private and don't like anyone to know that I'm not always well, so it's a big deal for me to even peek my head out on a forum to ask this question. That said...

The question that gave me the gall to come out of the woodwork at last is one of fatigue. Sometimes, I'm just pooped (ha) for no reason. This makes sense when I'm flaring--blood loss, anemia, and general immune stuff. But why am I sometimes completely wiped out when there's no visible flare?

Do any of you ever feel exhausted for days on end when you are not flaring?

PS, I take iron, calcium, flax oil, magnesium, and lialda. My thyroid has been checked and my anemia is under control per a blood test. I am otherwise in great physical shape--eat great (mostly) and exercise a lot.
10-04-2012, 01:48 PM   #2
Grant
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If you've had surgery then I assume your food absorption is reduced, certainly I get very fatigued these days & put it down to that.
When was your last blood test?? If your bloods are low then you would feel continually tired. Think I'd have a chat with my Dr & get one organized. Hope this helps.
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10-04-2012, 02:23 PM   #3
UncleChuckSucks
 
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No surgeries, and the blood test was fairly recent. I told the doctor I was exhausted so they say they looked for everything that might be relevant to that--they claimed everything was good. I am wondering if maybe, even if my symptoms aren't showing up, my body is still fighting itself in the background and that makes me tired?
10-04-2012, 06:17 PM   #4
Ozboz
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With ibd our body's have absorption issues even when not flaring i take iron a multivitamin and vitamin d i had my bloods checked for b6 b12and all the other ones and were ok my doc said it is the disease that makes you yired from not absorbing the food correctly and other factors i know heaps of people with ind and there in remission and are still always tired oh and the meds can do it aswell I'm in a glare right now so more tired than usual but even when um not flaring and even if i dint do much im wiped by the evening but also i dont sleep all that well hope this helps
10-04-2012, 06:25 PM   #5
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I am tired out most day's, I mention it every time I see the doc but my blood tests show no reason for it.
They just say the disease itself could be the reason.
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10-04-2012, 07:56 PM   #6
Trysha
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Hi Curly
I get the same way too.
Just love your cat with the
look of amazement on his face.
Feel better soon
Hugs and best wishes
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10-05-2012, 08:01 AM   #7
UncleChuckSucks
 
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I appreciate the poll responses and comments! This makes me feel a lot better about being tired. The thing is, I am a very driven person and it's hard for me to feel exhausted "for no reason." I kind of beat myself up about it and feel lazy, like I'm a bad person or something. It's hard for me to acknowledge limitations and take a nap or read a book when I should be working on the dishes or being a better human being. Knowing other people go through the same thing might help me cope and give myself permission to feel tired sometimes.
10-05-2012, 08:19 AM   #8
Ozboz
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Dont beat your self up about it i still chill in my recliner most days and always think great there goes another day when i could of been doing something or out and about i love the outdoors i used to go fishing and camping or just take the dog to the park but its very hard these days so i just try and accept it but I'm w ith you i get upset sometimes when i dont do much so i know how you feel i think we juat meed to accept the fact its part of this whole deal
10-05-2012, 08:26 AM   #9
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Hi ,

Very tired all the time , beautiful day here and I slept most of the day and ,watched a movie. It gets me down because I used to be so active . Walked my dog but only half the distance i used to do. I guess its about pacing yourself & then resting in between.Hope you start to get some energy back soon xxx
10-05-2012, 10:56 AM   #10
moogie
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I'm 38 and I have three kids, 10 12 and 13 and my youngest always wants me to go and play hockey with her. I go to work and when I get home I am so tired it's crazy. It takes all I have to do the dinner and homework. After that it,s on the sofa and tv. I just can't keep up anymore. I'm not flaring right now but the body just does not work the same way as before. I guess the plague is to blame. Such is life.
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10-06-2012, 04:27 AM   #11
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I get exhausted alot even when not flairing, my doc say I have an active crohns even if im not flairing, like its "microscopic inflammations". I cant work I worked 50% but I was so exhausted all I did was go to work, come home and sleep on couch and feel exhausted until the next day. Eventually it got so bad I was so dizzy I had trouble driving to the grocery store.

They did lots of tests and cant explain the dizzyness but my doctor said getting fatigue is very common for crohns patients even when not flairing.
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10-06-2012, 05:27 AM   #12
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I have UC and have the same exact problem. I am constantly tired, even after sleeping 8 hours. I can't remember how many times that I had to pull over on the side of the road to take a nap on the way to work or in the middle of the day.
10-06-2012, 05:38 AM   #13
Ozboz
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Yeah same here have constantly active crohn's went to the shops for like 3 hours today all the shops were easily within 10km's of my house so drove round did what I had to do now I'm tired as hell relaxing in my nice recliner and feel sleepy will go to bed soon.
10-06-2012, 08:01 AM   #14
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I just saw my specialist at the hospital, he is the head doctor for the gastro department here. He said that the most recent research shows that it is very common for people with auto-immune diseases to have fatigue, even if you are not flairing, and that they dont know of any way to treat it or make it go away.
10-06-2012, 08:35 AM   #15
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Like you, I try to hide m symptoms from the world, especially because I'm in the military and don't want to get kicked out, but I also lied to my self about their severity and wound up worse. But I'm always tired and fighting with myself about wasting a perfectly good day on the couch. It's hard to forgive yourself for needing to stay home. I don't know if I'll ever fully master it. You are far from alone
10-06-2012, 06:40 PM   #16
Swirl
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I'm a very active person and need to move around often. I get like you too. Out of nowhere I feel tired. I get sleepy if i lay down. I do have low iron but not so low like once before...

Its almost like a stroke coming on or something. It may be normal for us. No ideal.
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10-06-2012, 09:51 PM   #17
Susan2
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I am in remission after a proctocolectomy, although I still have to be very careful because even the gut that I have left is compromised after more than 50 years with Crohn's.

My gastroenterologist has always said that my tiredness is not surprising considering that my body has to keep fighting the Crohn's to keep it in check. It's always lurking there waiting for an opportunity to come out of hiding!

He says that the best things to do are to eat well, with as few 'hollow calories' as possible, make sure that your vitamin and mineral levels are correct, exercise and get sufficient sleep.
10-06-2012, 10:19 PM   #18
Babs33
 
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I understand exactly how you feel! I am constantly exhausted. Going to bed at 8:30 pm on a Saturday night seems like such a joke to me but I have a hard time keeping my eyes open and lose any desire to do anything else BUT sleep. It has been depressing because I started running over a year ago and developed such a love of it and I can barely do that anymore. I am either too tired to go out or a short run kills me. I just want to get back to life as I used to know it. I was hoping it was just the meds and that I would eventually adjust but now I have had to change meds again and the Prednisone is making me so hungry and I will admit that I have been making some bad food choices that Im sure don't help. Someone please say it gets better?
10-06-2012, 10:32 PM   #19
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Hi Babs, I have just come off Prednisone and was hungry all the time. I made bad food choices too. Im now on Methotrexate & one side effect is weight loss. So maybe having a bit more meat on is better. I hoping like you that things will improve . : ) xx
10-08-2012, 08:10 AM   #20
UncleChuckSucks
 
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I also love being active and when I get the dropsies going to exercise is a sheer act of will. If the classes weren't group oriented and it was just me, I doubt I would ever exercise at all. But I want to seem as normal as possible to my friends and so I get dressed and go. The actual exercising is so hard sometimes because I have zero energy, but once the class is over, I either feel amazing and better throughout the day or I at least feel a huge sense of accomplishment for finishing.

Is there anything you guys do to help you perk up when you're pooped?
Sometimes I lapse into a cup of half-caff coffee or caffeinated tea, but I know both are bad for me. Still, it's the only way I know how to make it through the days sometimes. Even doing work with my brain at a desk is hard when I'm tired this way--everything slows down, but things still have to get done.

I really appreciate everyone's responses! When I'm slumped over the kitchen counter willing myself to do the dishes, it means a lot to not feel like I'm the only one that feels this way. Not that I'd wish this one anyone, but it's always good to know you're not the only soldier going through a fight.
10-08-2012, 09:03 AM   #21
Grumbletum
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Wow, look at those results! Me too, I get tired even in remission. Especially mid afternoon, I have a real slump that I often can't pull out of. I find if I try to drink plenty of water and stay hydrated it sometimes helps. Problem is I'm not that fond of water - I'd much rather have red wine. LOL!
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10-08-2012, 01:39 PM   #22
Wooddy
 
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Did someone say wine?
10-08-2012, 01:52 PM   #23
UncleChuckSucks
 
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I love cooking with wine. Sometimes, I even put it in the food.
PS, I used to hate water too but started putting decaf tea bags in my water bottle. Over a few hours, even if the tea is cold, the flavor seeps into the water and makes it better.
10-22-2012, 09:33 AM   #24
kaffy
 
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Thank you so much for this thread. Its how I found this forum - searching Google for Crohns fatigue.

I've had Crohn's since I was 24 years old - I'm over 50 now.

I get so tired, its my biggest problem By Far.

My Family Doc started talking about Chronic Fatigue. How do you know what causing the fatigue? Argh!

The low dose Naltrexone helped a lot with the pain. But the fatigue remains. I rest / sleep 10-12 hrs / day or more. I get very grumpy when tired.

Yep - even when the crohns is stable.

Any advice?

Many thanks!
10-22-2012, 09:48 AM   #25
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Hi All,

I've had Crohns for 43 years and never felt as tired as I do at the moment! I'm getting B12 injections now (took them 2 years to work that one out). But I'm constantly tired and it seems to be getting worse. Glad I looked on here as I am getting to the end of my tether with it. I am in remission at the minute.
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10-22-2012, 10:17 AM   #26
nogutsnoglory
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I have moderate to severe fatigue even when I'm not flaring. It's miserable and totally eats away at life.
10-22-2012, 11:20 AM   #27
DougUte
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So glad I found this thread. I work a desk job and am just exhausted at the end of the day. I go home and crash. Most weekends I have the list of things I want to get done. I am lucky if I get one or two done. The only think I got done last weekend was mowing the lawn. It took me 3 days. I am soooo tired.
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10-22-2012, 01:01 PM   #28
UncleChuckSucks
 
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I'm kind of wondering if fatigue is also an early warning system for a flare. I had been fatigued for a few weeks "for no reason," but now am in the early stages of a flare. I should be using the mesalamine enemas more, but help me, I hate them!

Then again, some days I just feel flat fatigued anyway. It makes me really mad sometimes--I think, like this isn't hard enough, I have to be tired, too? Is there an emoticon for shaking your fist at everything in general?
10-22-2012, 04:54 PM   #29
AIjen
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You need to add a "Yes, all the time" button to your poll. That's what I would pick.

I'm always tired no matter what. I don't sleep well at night for days - weeks at a time. I asked my general dr. for something to help me sleep and she told me to stop taking naps. HA! I did try that and it seemed to make it worse actually.
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12-14-2012, 05:26 PM   #30
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All your posts just gave me comfort that I am not alone. I am so so tired all the time. I got diagnosed 2 years ago, and still haven't made it back to work I also have thyroid issues but my fatigue is my biggest complaint right now..I am in remission but still so so tired.
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