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Is anyone else EXHAUSTED?

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Crohn's Disease
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Posted 8/1/2013 5:48 AM (GMT 0)
Hi,

I was diagnosed with Crohn's in early 2012. Since then I've taken a number of drugs including prednizone and immuran. When those failed (and I developed a perianal fistula in March of this year) my GI decided Humira was the way to go. I started in March or April. I've been on a combination of Humira (one injection pen semi-monthly) and 100mg of immuran daily. I take iron daily too.

Problem is folks, I'm EXHAUSTED. My blood work is all coming back fine. Blood cell counts are good, thyroid is good, liver is good. I'm apparently healthy as a trout. So what is going on?! I also have started to get migraines and I'm thinking that is the Humira. My Crohn's seems in remission now but the extreme fatigue just won't go away.

Please... Is there anyone else out there suffering like me? I feel like I should be all better now that my Crohn's symptoms have stopped... But I'm not... :(
Posted 8/1/2013 12:00 PM (GMT 0)
I'm right there with you bethanyv. In my opinion the most frustrating part of CD in not the bills, or the doctors, or even the bad cases of D. It's the lack of energy to do the things you used to enjoy. Each day I wake up and want to punch my Crohns in the face because it saps my energy and I feel tired all day long.

It may be worth investigating your Vitamin b levels (which are usually absorbed in the terminal illeum, where your CD probably is). I think low B12 levels result in a lowered energy levels, but check with your GI.


I hope you get some relief soon, hang in there!
Posted 8/1/2013 4:14 PM (GMT 0)
Bethanyv,

You are not alone! That is actually the reason that I logged in today - to see if anyone else was having this problem. I take 40mg Humira bi-weekly. I had a colonoscopy in March that showed no inflammation and recent blood work showed none either. I am very frustrated with my doctor right now. The last two times she has done blood work she hasn't even ordered any to check my B-12 level or Vitamin D levels. I have not been feeling the best - having some joint pain as well as abdominal pain but the exhaustion is just horrible. I feel like my doctor no longer believes me - which is the reason I used to be so happy with her. I feel like she thinks just because the tests are all coming back ok - that I am ok.

It is so hard to concentrate on anything when you are fighting to keep your eyes open some days.

Hopefully you can take some comfort in the fact that you are not alone.
Posted 8/1/2013 4:32 PM (GMT 0)
Always. I also have fibro, and have a rough time functioning.
Posted 8/1/2013 5:13 PM (GMT 0)
Thank you all so much for letting me know I am not alone. There are testing me for mono right now too because the fatigue is just unbearable. How do you guys work feeling like this? I am missing so much time from work due to sheer exhaustion. Everyone says once
Crohn's is in remission I will lead a normal life - including work. I hope there is light at the end of the tunnel...

As for B12 and Vitamin D, I think I am tested regularly for that. But I will double check. I also take a multi viton daily. I too find it frustrating and feel doctors are not taking me seriously because the blood work does not show anything.

Glad to know we're in this together though. :)
Posted 8/1/2013 7:15 PM (GMT 0)
I can relate because I too am exhausted.  I was 1st diagnosed with UC back in the 1970's. Over time my diagnosis changed to CD.  No surgeries, thank goodness, just medication (asacol as of today).  Some days it is so hard to get through work because all I want to do is close my eyes.  I do take extra Vitamin D but will ask for my B-12 level checked next time.  I haven't found a doctor who truly understands and knows how to treat this.  Be well everyone.
Posted 8/1/2013 9:45 PM (GMT 0)
Well, I'm anemic right now which probably explains the fatigue, but I just wanted to chime in that I feel robbed of my old life sometimes, and other times I feel like such a lazy person! I look around at projects or chores around the house and then collapse back on the couch. I hate the fatigue...you are not alone!
Posted 8/1/2013 11:39 PM (GMT 0)
Me too - we should have a separate "I'm exhausted" club - I can completely relate to what you're saying. I'm not on Humira, but am struggling with on/off anemia and B12 issues. I do self-injections B12 and doubled my vitamin d and Slow Fe (iron) intake. I also almost eliminated caffeine since I was overdoing it due to fatigue and then having Crohn's issues due to all the coffee and diet soda. (LOL). Sometimes, I feel very very tired and then my labs come back OK -- it's almost better when the labs show what I'm feeling. It's very hard when they don't match - you almost question yourself. And, you have to then convince the doctor you're not crazy. I totally get it.

I am currently working a 75% work schedule due to fatigue and may have to cut back further while I wait for some GYN surgery in September, during which I will have some exploratory surgery to see if I have GI bleeding as well.

Keep telling your doctor that the fatigue is not bearable - maybe it's the Humira. And, know you're not alone!

Sending you energy....
Posted 8/2/2013 10:27 PM (GMT 0)
I'll join the "I'm Exhausted" club!

By 1pm I am whooped and have to lie down for a couple of hours. Also, I do a sport and it's very noticeable to me that my muscles start to ache much faster and I'm out of breath very quickly.

And then I go to bed shortly after 10pm.

All my blood work is good too.
Posted 8/2/2013 10:34 PM (GMT 0)
Thank you all for your responses. I have read them all and they make me feel better that I am not alone.

huckleberry - Isn't it so frustrating when the blood work says you are fine? I got mine back and today and apparently the only thing "wrong" is that my blood platelets are low. I also had to go down to reduced working hours at my job (because of fatigue) and I'm scared that they will fire me. I feel exhaustion is very misunderstood and I feel like maybe I'm just lazy. I know it's true but your mind sure likes to find a solution when test results say you're okay...

I'm sending energy vibes to you all on this thread who suffer as I do. May we get our lives back. <3
Posted 8/3/2013 3:16 AM (GMT 0)
your definitely not a lone with exhaustion!
I am currently on Humira (which has helped with the crohns tremendously)
A few months a go I started battling with nausea and vomitting and during these bouts my energy levels decreased further.
I had the pill cam,a gastroscopy and an ultrasound only to find out I now have a 3.5cm gall stone but my blood work comes back as normal as it can be with the crohns.This week has been a really bad week for me with nausea etc and the only thing that was raised was my CRP at 8,which isn't over the top for me at all.
I wish we could find out all the answers to our problems and find one tablet that would cure all!
Posted 8/3/2013 5:31 AM (GMT 0)
I'm finding the exhaustion hard to deal with too!! My biggest worry are work (I am an early childhood teacher) and my new partner getting sick of my constant problems. I love him and he is great and understanding but I do wonder sometimes if my lack of energy and health issues will just become too much :( I am on Humira and am considering whether it might be time to try going without....
Posted 8/3/2013 6:55 PM (GMT 0)
Constant exhaustion can be caused by fungal infections. It's one of the possible side effects listed on the medication. Antibiotics and immunosuppressives kill of your good gut flora and, then, the fungal infections have an open door.

It's something to ask about when you see the doc. Low magnesium is famous for causing migraine headaches, so that is another question. I had candida overgrowth for over 30 years before it was discovered and probiotic supplements with 10 strains of gut flora resolved many symptoms. There are many people on this site who use probiotics to re-establish healthy gut flora levels during and after antibiotic use. I'm sure they can contribute more than I to the overall discussion.

 

Posted 8/4/2013 1:37 AM (GMT 0)
2 words. Medical marihuana. It has helped me so much with energy. People think its a bad drug. But it's a natural medicine.

A week into it I had my energy back and my appetite. It's been a year now and I don't regret it at all.
Posted 8/4/2013 3:54 AM (GMT 0)
I am flaring and I am right in the club..I only went to work for half a day today..That was all I could tolerate..I don't want to go out or do anything..
Posted 8/5/2013 11:50 AM (GMT 0)
Right there with you. I am about to lose my business because of being so exhausted my brain can not process the most simple of things even and the severe headaches are murder they never go away
Posted 8/5/2013 5:52 PM (GMT 0)
I sympathize with all of you.  Not having the energy to do every day tasks is discusting. I am on Humira every two weeks and working full time but finding myself exhausted half way through the day.  Take care everyone. My prayers are with you.
Posted 8/6/2013 5:14 PM (GMT 0)
I am definitely in the exhaustion club! Iron-deficient anemia, barely there vitamin D levels... :-(

worst part is how active I was prior to my first flare... I constantly feel like i'm too young to be tired so early!
Posted 8/6/2013 6:21 PM (GMT 0)
add me to the "Tired List". Some days I'm fine and others I can hardly get out of bed! But arthritis is quickly getting to be more of a problem.
Posted 8/6/2013 6:21 PM (GMT 0)
add me to the "Tired List". Some days I'm fine and others I can hardly get out of bed! But arthritis is quickly getting to be more of a problem.
Posted 8/6/2013 6:21 PM (GMT 0)
add me to the "Tired List". Some days I'm fine and others I can hardly get out of bed! But arthritis is quickly getting to be more of a problem.
Posted 8/6/2013 6:21 PM (GMT 0)
add me to the "Tired List". Some days I'm fine and others I can hardly get out of bed! But arthritis is quickly getting to be more of a problem.
Posted 8/6/2013 10:51 PM (GMT 0)
This is a really good listen. Especially the part on Crohns.

It will give you energy.


youtu.be/8Md2WNqqxTQ

.
Posted 8/8/2013 12:55 AM (GMT 0)
This is a big club. I get tired too, work rapid rotation.... days to nights, have decent insurance and that helps a bunch. Have sleep apnia and use the C-Pap machine. That has helped the sleep/rest factor. Waiting for the next thing. I am falling apart..... Also, the "brain fog" gets me... have not given up coffee...... found that fresh air helps my attitude. Just think what the world would be like if we all felt what we considered normal. (I for one have never been normal.... ;) )
Hang in there everybody, catch some rays of sun on your face!
Posted 8/8/2013 2:52 AM (GMT 0)
Might as well add me to the exhaustion club too :-/

In my case, though, I can't separate mental and physical causes. Depression is knackering in its own right and I've been pretty depressed. But I'm sure there's a physical component too. I don't sleep brilliantly, I'm unfit, oh, and I had major surgery earlier this year.

Technically I am in remission, though, and not on any Crohn's meds.

@s. aunt - Yes, fresh air helps me feel a bit better too, although on some days nothing dissipates the 'brain fog' <_<.
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