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Ulcerative colitis fatigue and joint pain.

(3 Posts)
tryingtobebetterallthetime Sun 08-Sep-19 17:56:08

I am in endoscopic remission on Entyvio infusions every 4 weeks. The relief is amazing.

Despite this, I am continuing to battle fatigue. The kind where you just want to lie down. It is making life hard. I feel unmotivated to do things as the fatigue makes activity feel like a battle.

I also still have joint and muscle pain. Right now I have epicondylitis (tennis elbow), knee pain and pain in my hands. This too makes me avoid activity. My muscles ache for days after a strenuous day activity wise.

I know I should try to get fitter now that my guts are behaving so well, but it feels like an insurmountable barrier. I am unfit and overweight, in large part because of all the prednisone I used to take. Even off it the weight is not shifting. I hate how I look.

Anyone else still have fatigue and joint pain on Entyvio? Any tips on getting moving? I know what to do, I just can't seem to do it. It is very hard to want to walk when it feels like a struggle after only a block.

Mitebiteatnite Sun 08-Sep-19 18:01:44

I can't help you with UC related advice, but I can sympathise with pred related weight gain. I have been on and off high doses of pred for 2 years now, for asthma that can't seem to be controlled anymore. I have put on 4 stone and can't shift it by diet alone. I need to exercise, but I'm exhausted all the time and as my asthma is still so bad, even walking upstairs makes me breathless and wheezy.

It's shit, and I'm sorry someone else is in a similar situation. Hopefully someone wiser will be along with better advice, but I just wanted to say you're not alone.

Out of interest, have you put on weight anywhere specific? If it's only on your face, stomach and the top of your back and your arms and legs are largely unaffected, then it's worth going to your GP to check you haven't got Cushings.

tryingtobebetterallthetime Sun 08-Sep-19 18:27:29

Thank you. The weight is mainly on my stomach and chest. Getting checked for Cushings is a good idea after all the prednisone I have taken. I will ask.

Prednisone is so evil but in the days before biologics it was what got me through and kept me functioning.

I sympathize with your prednisone issues too.

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