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10-24-2013, 07:04 AM   #1
RosieM
 
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I am so tired of being tired!! I know that fatigue is a symptom of crohn's but why? What is the reason or cause? I have had many blood tests from doctor visits to being admitted to the hospital (for crohn's, in general) and no one has ever said that I'm anemic, or anything like that. It makes me think I'm crazy...I have such low energy and can sleep just about anytime of the day. I want to be motivated to do things and enjoy life but it's so hard when I'm exhausted everyday...are there certain medications and/or treatments that would help me?

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Last edited by RosieM; 10-24-2013 at 07:19 AM.
10-24-2013, 03:03 PM   #2
Josephine
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Hi Rosie,
I am flaring since March minus 16 weeks steroids which work short, current on prednisone foam we can all guess where go.

I am mother 3 girls and have partner. I wish get energy just do something with out stop or finish girls bedroom.
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Acid Reflux for 15 years med

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10-24-2013, 07:53 PM   #3
33WIV
 
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I Know how you feel, my body just doesn't want to do anything and its hard trying to keep all my homework or go to those late night classes. I do have anemia and acid Reflux which doesn't help, but I think that same things that helped me will help you. Getting into a set routine helps, and truing to go to sleep the same time every night and waking up the same time every morning, and drinking water through out the day and staying supper!! Hydrated. It helps to try to walk in the mornings or some easy yoga then again later in the day. I was jogging for 30min each morning everyday and though it was hard I found that I had more energy in the day.... and just making sure that I was drink water and keeping everything as consistent at possible.... I took about a week before I noticed a difference but once you get into a habit and a set routine, it makes a hug difference..... and include pampering yourself even though its hard as a parent try to do something that brings you joy and relaxation everyday.....For me it was yoga or enjoying my favorite food, or even sunbathing. I hope that this helps.
10-25-2013, 12:04 AM   #4
Essieluv
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The fatigue I get from my Crohn's is so crippling. I cannot do much, and when I do finally muster up strength to accomplish something, I have to rest for days after. It is so annoying, especially because people just assume that I am lazy. I am not lazy, I'm just so exhausted!
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10-25-2013, 03:56 AM   #5
Josephine
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Rosie, can I join please?
10-29-2013, 06:41 AM   #6
jsesaic
 
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Does anyone else still suffer from tiredness when they're in remission? I have had two operations in the last 10 months and the doctors think i am ok at the moment but i am unbelievably tired! So i was wondering if crohn's sufferers are tired just when they are flaring up or all the time haha
11-12-2013, 11:08 AM   #7
costina
 
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Can't speak for everybody but whether I'm flaring or not I'm extremely tired so can't say it's just a flaring issue. I was talking with a nurse friend and she suggested that maybe it's because my body just doesn't absorb the nutrients my body needs because of having crohn's...
11-12-2013, 11:40 AM   #8
Essieluv
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Can't speak for everybody but whether I'm flaring or not I'm extremely tired so can't say it's just a flaring issue. I was talking with a nurse friend and she suggested that maybe it's because my body just doesn't absorb the nutrients my body needs because of having crohn's...
I think this can be the cause my fatigue, too.
11-12-2013, 03:02 PM   #9
Goddess
 
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While they were still working on a diagnosis, I went to see my GP because I was so tired. I was only awake 6-7 hours a day. And I had real trouble concentrating to even read. She sent off some blood for testing and suggested I see a psychiatrist to rule out depression. Well, I told her that neither my psychiatrist nor my therapist thought it was depression, and that in fact they'd said that the medication I was on should prevent that anyway...and that they had advised me to see my GP!!!!

She just said to come back when the bloodwork results were in. In the interim my GI diagnosed me with Crohn's, and ordered a series of iron infusions because I was severely anemic. I went in to see the GP the next day. She'd gotten the results. She was fawningly sympathetic, like she expected me to die tomorrow. "Oh, if it's CROHN'S no wonder you are feeling tired...and depressed."

LOL! I was moving away anyway, so I didn't bother with it.

But I did do the iron infusions. They did make me feel better, and not as weak, but the sleepy-fatigued-lack-of-concentration really didn't abate. So I really don't think it was just that.

I only worked for 6 weeks in the past year. That job was (supposedly) half-time, with a 1-1/2 hour commute each way. I'd come home, eat, walk the dog, and go to bed. Weekends were sleeeep. I finally got a clue and quit. And slept for a week.

So, IMO it wasn't anemia. My disease is limited to my colon, so absorption issues are not so likely.

The whole time, I was in remission. Still fatigued, but better.

BUT, I now feel hesitant to undertake anything biggish for fear I won't be up to it. That's the scary, worrisome part.

Never did find anything that helped with the fatigue, but I thought it was gradually getting more energetic. Recently I had another flare, and I'm back to Square One.

Lifestyle changes are all well and good, but what if you're doing all that already? Just seems like a waste to have so many people functioning at a low level when it's obvious we're not just lazy. Should I just suck it up and push on through (but then not much quality of life when the price is being asleep the rest of the time), or do as much as seems doable and hope it's temporary...when I'm now pretty sure that it's not?
11-12-2013, 08:32 PM   #10
cca2013
 
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I'm currently in a flare right now and I'm exhausted. I was so frustrated while I was hospitalized because I would tell the docs how tired I was and they would just shrug and look at me as if I were crazy. A nurse brought me a walker, because they assumed from my complaining that I couldn't walk. I had to explain to them that even if I used the walker, I would still walk like a zombie with my head down. In my brain and my entire body, I feel like a limp noodle...like I'm being held up by a string...it's hard to explain.

I should be catching up on homework and papers but I'm so freaking tired.

And I start work Dec 13th. I'm praying that I have half of my normal energy levels by then. There's no way I will be able to get to work by 7:30...stay until 5 and then drive through horrible traffic to get home. Ugh.

I've been taking vitamin d3 and calcium and that helps A LOT. Just a few weeks ago, I couldn't even hold my head up or even complete a sentence without getting winded.
11-12-2013, 08:54 PM   #11
HorseLover!!
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I'm currently still in a flare of 6 months and I'm absolutely exhausted its horrible I can barely do anything because I'm so tired sometimes when someone is asking me to do something I fall asleep in the middle of them telling me what to do. There has been a time where I was on the bus on my way home and I fell asleep and missed my stop so I ended up in London .
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Had my first Colonoscopy and Endoscopy at age 2 1/2 years old

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Previous: Prednisolone and Pentasa slow release, Had tube feeding at age 3, Azathioprine

Currently in a flare but not taking any medication because doctor hasn't bothered to prescribe anything

My HORSE is not just a HORSE, he is my SANITY, my HAPPINESS, my THERAPIST and my BEST FRIEND


11-12-2013, 09:03 PM   #12
Essieluv
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The fatigue is starting to affect my attention span. I cannot seem to concentrate on anything. I can't read for very long, the sentences get all jumbled. And it's so hard to partake in conversations....
11-12-2013, 09:43 PM   #13
HorseLover!!
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The fatigue is starting to affect my attention span. I cannot seem to concentrate on anything. I can't read for very long, the sentences get all jumbled. And it's so hard to partake in conversations....
I'm having the same problem
11-16-2013, 08:22 AM   #14
UnXmas
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I think I belong in this group. Does anyone else sometimes just want to cry when they know they have to go out somewhere when your body is desperate for sleep? Even social things that are supposed to be fun, they're such an effort.

And sometimes I get to the point where I can't even think straight, and I know I need to sleep, right now. And then I'll nap for an hour and feel so much better.

I can sleep anywhere, any time, no matter how noisy it is, how light it is, or what else is going on around me. The only time I couldn't sleep and wasn't terribly low on energy was on prednisone. I'm underweight, so my doctors think that's why I'm so tired, but they don't seem able to grasp it when I tell them I was just as tired when I was a healthy weight. I don't know the cause. It just comes with being ill.

Getting a good night's sleep is essential, otherwise I can't function the next day. I never stay up late unless I'm certain I will be able to nap loads the following day, though I like to get up early - I'm a natural early riser, a lark - so I go to bed early too, generally. Evenings are the worst time of day for me, energy-wise. It was terrible trying to have a social life when I was at uni; most students think the late in the evening, just when I'd be going to bed, is the time to begin social activities.

I find eating makes me sleepy, so I plan it so I can have a nap after a meal or eat right before bedtime. Also, for some reason in Winter, I find that keeping warm helps me wake up a bit. I think possibly because you lose energy when your body's struggling to heat itself. If a put a heater on or get a hot water bottle, it can help me stay more alert.

Last edited by UnXmas; 11-16-2013 at 08:38 AM.
11-16-2013, 08:31 AM   #15
UnXmas
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Does anyone else still suffer from tiredness when they're in remission? I have had two operations in the last 10 months and the doctors think i am ok at the moment but i am unbelievably tired! So i was wondering if crohn's sufferers are tired just when they are flaring up or all the time haha
I do! How long ago was your last operation? A big operation can take months to recover from completely, it can take a lot out of you, so you may still be tired from that.
11-16-2013, 10:25 AM   #16
HorseLover!!
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[QUOTE=UnXmas;721584]I think I belong in this group. Does anyone else sometimes just want to cry when they know they have to go out somewhere when your body is desperate for sleep? Even social things that are supposed to be fun, they're such an effort. QUOTE]

I hate getting that feeling when you just want to cry knowing that you have to go somewhere and do something, your so tired you brain and your body just goes ugh really do you have to go out. social evening I definitely agree they are an effort to get up and go to, in fact everyday life is an effort
11-18-2013, 11:09 PM   #17
MarieClaire
 
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Hey I'm newly diagnosed with Ulcerative Colitis, leading up to being diagnosed and even after I would sleep all day and all night only getting up to use the bathroom. My flat mates also think I'm lazy and claimed I'm over sleeping that's why I'm so tired. Ahh the joys of living with people that have no clue what you are going through. Right now I'm not tired only due to the fact I'm on prednisone.
11-19-2013, 06:59 AM   #18
UnXmas
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Hey I'm newly diagnosed with Ulcerative Colitis, leading up to being diagnosed and even after I would sleep all day and all night only getting up to use the bathroom. My flat mates also think I'm lazy and claimed I'm over sleeping that's why I'm so tired. Ahh the joys of living with people that have no clue what you are going through. Right now I'm not tired only due to the fact I'm on prednisone.
Hi MarieClaire, welcome to the forum. It is hard when people don't understand our disease and mistake it for personality failings like being lazy. How much have you told your flatmates about your illness? Prednisone is great for boosting energy, even though it's a kind of fake energy in a way. But hopefully if prednisone can get your disease under control, you'll be feeling energetic for real soon.

Btw. you might want to post an introduction in the Your Story section here: http://www.crohnsforum.com/forumdisplay.php?f=5 It's a good way to introduce yourself to the forum, if you'd like to.
11-19-2013, 10:10 PM   #19
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Thank you I might just do that Yes I have told them about as much as I understand. I guess its just as new to them as it is to me.
11-20-2013, 12:34 AM   #20
Goddess
 
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Even during remission I'm fatigued. I thought back to the last time I felt normal and, voila, it was when I was on Prednisone. So maybe "normal"isn't normal anymore. I'm very worried that the "fake" Prednisone energy is the only kind I'll have anymore.

Stepped down the Prednisone from 40 mg. to 30 mg. a couple of days ago, and slept 22:00-7:00, 9:00-6:00, which is fine right now, but not exactly conducive to having a life.
11-25-2013, 03:17 PM   #21
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I would also like to jump in on this conversation. I had surgery in May of 2012 and have since experienced extreme fatigue. Never have I been sure if this was from the condition or my imagination.
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11-25-2013, 05:06 PM   #22
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I have also been experiencing extreme fatigue! More so than ever before! I have always had a energy problem. I am anemic, etc. It has gotten so bad I can't even keep my eyes open AT WORK! I have found myself nodding off and this used to never happen.
11-27-2013, 06:10 AM   #23
Dackelmann
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The fatigue is starting to affect my attention span. I cannot seem to concentrate on anything. I can't read for very long, the sentences get all jumbled. And it's so hard to partake in conversations....
Same- I'm usually an avid reader, really having trouble reading more challenging books.It tires me really easily. Studied for and sat a 3 hour exam as part of an arts degree yesterday (history and politics), swatting was a nightmare and trying to write for three hours I found more difficult than before. Because I tire easily I've taken up graphic novels for a wind down- it keeps up my lit' habit and have found a new source of enjoyment.

I get up at 4.30 am for work and I'm kaputt by 10am when I'm usually on the go till well into the afternoon. Like a lot of others I'm tired of being tired.
12-29-2013, 06:52 AM   #24
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I am getting extreme fatigue after eating solid food, and now on the NG, fed up
12-29-2013, 09:01 AM   #25
UnXmas
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I am getting extreme fatigue after eating solid food, and now on the NG, fed up
Eating makes me tired too. You know how you hear about people getting sleepy after eating a big meal? Like taking a nap after Christmas dinner or whatever. I seem to feel exhausted whenever I eat, even small amounts. I always get desperate for a lie down or nap after lunch, and I take advantage of this sleepiness in the evening, by eating right before I go to bed - it ensures I'll fall asleep pretty much as soon as my head touches the pillow. I hate it if I have to stay up after eating an evening snack. I guess digestion is hard work for me.
12-29-2013, 01:44 PM   #26
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I am not a good person when I am lethargic, I ended up rowing with my husband and being truly foul he has been really good in all honesty, but I wish so much I had more energy!
12-31-2013, 04:50 PM   #27
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I definitively belong here. My fatigue has really destroyed my life.... it started up when the Crohn's started... and hasn't let up. I've done every test under the sun... including sleep testing... no issues... just my body attacking itself and causing me to feel tired/sick all the time. Its definitely worse during flareups....right now but it persists afterwards... I am maybe at 30% energy level between flareups... and 5% energy level during.

a few things that might help between flareups (assuming you've done blood testing first)

1) don't let your sleep get below 8 hours. (9 is best) This may involve lifestyle changes
2) consider wakefullness drugs ( I use vyvanse... it doesn't give me energy... but keeps me from being a vegetable, and its well tolerated by me.
4) economize everything... don't ever over-exert yourself. You may get 'fake' boosts of energy for an hour... don't use that time to exert yourself.... it will come back to haunt you for the next couple days.

If you are having a flareup.... not much can be done.... the fatigue becomes so strong that its nearly impossible to manage... just do what you can to manage your life during this time.... let people know that things are unusually bad for you. Sleep sleep sleep!! For me... Prednisone helped... initially, almost like a miracle... but it never really got me into remission... it just kinda 'paused' the flareup.... but I may be immune to it now... not sure.
12-31-2013, 04:56 PM   #28
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Even during remission I'm fatigued. I thought back to the last time I felt normal and, voila, it was when I was on Prednisone. So maybe "normal"isn't normal anymore. I'm very worried that the "fake" Prednisone energy is the only kind I'll have anymore.

Stepped down the Prednisone from 40 mg. to 30 mg. a couple of days ago, and slept 22:00-7:00, 9:00-6:00, which is fine right now, but not exactly conducive to having a life.


Wow.. you sound like me.... exactly.
12-31-2013, 05:51 PM   #29
Spooky1
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This is definitely the group for me. Not only is it my mind that is absolutely knackered, but my whole muscle system and the bones seem to be so painful and exhausted. Moving them is just extremely hard work. But at least I see many of you understand this extreme fatigue. Sometimes I wonder if the high white count that I always have is causing this tiredness so that the body can relax and heal. But I'd so rather be doing something.
01-20-2014, 04:22 AM   #30
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Don't know what to do with a 40 hour plus work week and a cleaning job while all I want to do is sleep!

Started seeing a GI doctor for the first time in 7 years after diagnosis of Crohn's Disease.

Take all the right natural supplements, foods, and sleep habits. Any type of help for this chronic tiredness??
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