Inclusion Body Myositis

[Calbost]

I was diagnosed approx 20 yrs ago aged 40. My condition has progressed to the point that I can no Ionger walk and my arms are getting weaker. I am bed ridden for 95% of the time mainly due to chronic pain in my lower back area. This prevents me from staying in a seated position for less than 1 hour. Do any others suffer this kind of chronic pain? My neurologist isn't helpful with my pain issue.

[JohnofWsM]

Hi, I have had IBM for over 6 years. I also had severe hip, sciatic and right shoulder pain. the consultant neurologist put me on Naproxen 3 x 250 mg a day with 1 omeprazole morning and one at night for stomach protection. I said surely I can't stay on these full time and she said it is no problem if you have annual blood tests to keep an eye on kidney and liver function. They take a while to build up their effectiveness so don't expect miracles in the first week or two. I have proved to myself that they work as I tried to be clever and come off them only for the pain to rear up again. I have managed to reduce them down to 2 tablets a day now, one morning and one evening. Definately worth trying. Let the forum know how you get on as we all need help from each other.

[Calbost in reply to JohnofWsM]

Hi, thanks for your info. I will be contacting my GP regarding the Naproxen.

Pain management in my area ( N.E.Lincs) first looked at my issues in 2018. Initial plan was for an Epidural but the consultant said no, he wanted to burn the nerves in my lower back. He claimed it could last as long as 18mths. Months prior, he first injected the area with cortisone/botox (not sure which exactly) this helped a lot, but only lasted a few months. His nerve burning procedure followed months later, it failed completely.

I have persued this problem with my GP & Neurologist ever since without and success. Loads of pain killers tested. The last few include Etoricoxib, Pregabalin and Duloxetine, all failed to help.

I will suggest the Naproxen to my GP. The only issue could be that I need to have it in liquid form as my condition has also effected my ability to swallow so now have a peg feeding tube.

I will update my progress.

Many thanks.