Unbearable tiredness

I'm starting my first dose of Infliximab on Weds, and if it works I can't wait!

But the tiredness I've got is overwhelming, its been gradually getting worse over the past 2/3 weeks but this past week has become unbearable. To the point where anything other than simply getting up and doing the general things like getting ready to go out etc is a big effort. Its causing me to feel headachey, loss of appetite, dizzy, and causing my depression to get worse.

I went back to the GP today who has ruled out anything wrong with my thyroids from a previous blood test. He said its simply down to the Colitis and general stress (I have alot going on in my life at the moment). 

I already work part time as a result of the Colitis, and have had to take more time off this week as a result of this tiredness, I need to get back to work!

Any tips?

Are you sleeping ok? Waking up refreshed? What about being in pain. I get the horrible fatigue/joing pain too and find it is often just the pain I have gotten used to that is draining me. Sometimes a tylenol #3 helps me feel better and sleep better. Sometimes it is just the disease but I find taking something for pain helps a LOT! I hope you feel better soon!

Thank you for all your replies.

I got the results from my blood tests back today and it was ok. My iron levels etc are normal so its nothing to do with blood loss. But I physically cannot function and am shattered after doing the smallest thing. I do feel quite dehydrated so I'm making sure I drink lots. I'm not sleeping brilliantly but I am still sleeping ok, and sleeping for a couple of hours during the day too, which I never normally do!

The GP said its my body being tired from fighting itself cos of the Colitis and that I'm just stressed out and very run down..!

suebear said...
Did you have your B-12 levels checked? Lack of B-12 can cause tremendous fatigue.


Sue

Not sure, I would imagine so because the GP wanted to check if there was anything come up on my blood test that might be causing the fatigue. Although he did only mention about my thyroids...not sure! I'll look into that though thankyou

I wouldn't assume that your B-12 levels were checked. It's not on the standard CBC and must be requested by the physician. Either request a copy of your blood test results or ask your GI if this test was performed.

Sue

I am the same way.  I sleep 12 hours a night wake up exhausted, take a two hour nap, wake up exhausted.  Alot of people don't understand.  You have three kids of course your tired.  I was never this tired.  It is horrible.  I'm in a fog all the time.  I can't stand it.  My doc said the same thing it is the colitis.  I'm on remi and I had an infusion yesterday.  i do get tired after it for a couple days but I'm exhausted all the time.  I give myself B-12 shots, take Vitamin D, on thyroid medications, etc. and none of that has stopped the fatigue.  My blood work comes back fine also.  I hope you feel better and I completely understand.

Thank you,

Its good to know theres others that understand the fatigue. People who have never been through it can never really understand it!  By saying you're 'tired', people can think you're just making a mountain out of a molehill!

I will get the b12 levels checked with my GP. I slept deeply last night after taking a sleeping pill, and am still just as exhausted today so its not a result of lack of sleep.

Thanks for your thoughts again

Hey,

I was on azathioprine and flaring badly (lots blood and D) and I was basically falling asleep at my desk at work. In the end I got to the stage where my mind felt totally jumbled and my desk was covered in post-it notes as i couldn't remember things a few mins later!! I sometimes went to the toilets just to prop myself up against the door and try have a couple mins power nap as I literally couldn't open my eyes. At that stage I was diagnosed as anaemic but couldn't tolerate iron tablets, it got so bad I went into hospital for an iron transfusion. I think I was better after that but still needed an afternoon nap every day (had given up work by then). I'm now on infliximab and have been feeling sooooooo much better and don't need any naps, (I'd already sorted out the anaemia before starting on it). I do have days where I feel really run down though and can't get up as early as I used to, I figure it's my body trying to heal. Certainly get exhausted day after I have my infusion but then I seem to pick up again!

Good luck with it all. Which part UK are you from?

When was on 6mp (different version of Azathioprine) I was often fatigued. 50mg did nothing to improve my condition so it was increased to 75mg which also did nothing except increase fatigue. I began a gluten-free diet that expanded to include the SCDiet and my fatigue was gone, along with bleeding.
After 6 weeks of success I stopped 6mp and have been feeling better and better. I am at 14 weeks of no 6mp now. Still taking Balsalazide at a reduced dose. (Just my story, I'm not recommending anyone else imitate)

Yes I had the feeling I could die from fatigue. Remember having extensive dental work done and thinking "Why go through this and die?"
I believe the fatigue could be due to the immunosupressive nature of the drug.

change is possible said...


by the way, did you have any side effects because of (seroxat) ? I'm always afraid of any anti anxiety medication...

I havn't had any side effects from the Seroxat that I've noticed but I wouldn't be surprised if it was contributing a little to how I'm feeling. And the same with the Azathioprine as some people on this thread have mentioned, I'm definitely more tired being on the Azathioprine, but I've been on it nearly a year now and this unbearable tiredness has only happened once before this occasion and not lasted as long as it is this time.

Cool, not too far away then! Good luck for your 4th infusion :)