Inclusion Body Myositis: I'd like to talk with others

Hi Everyone. My husband Ray was diagnosed last year. He is having a lot of chest muscle pain. Anyone else experiencing this?

@jerziegerl I can only imagine how difficult it must be for your husband.
Let’s hope you can connect with @billmixon99 @jmuller104. @abuela4. @angelgale . The should have some good answers for you.
Has he seen a doctor for the chest pain? What treatment is he getting?

Thanks. He's been seeing a pulmonologist. Waiting for a c-pap machine. He also sees rheumatology and neurology.

Not really. This is the first I am hearing about this. Hope he is getting the help he needs. All the best

My husband has this condition as well. He was diagnosed about 12 yrs ago. The strange thing I noticed with his symptoms is that he doesn’t suffer chest pain. He has pain in his knee joints. I would consult your neurologist. Good luck.

All of the doctors believe it's diaphragm pain. The c-pap seems to be helping to ease it. Now he's back to feeling the pain more from all his other muscles. He's so much weaker now in his legs. 😔

I have suffered the symptoms for the past 5 years and was finally diagnosed in Dec ‘22. Other than loosing muscle definition/mass I have not had any chest pains. Walking with a walker

Me too. Mine is from long term steroids. Do PT

@jerziegerl Your husband is having such a hard time. Does he have any pain medicine? Are you pleased with the doctors he’s seeing?
Will you ask the doctors for a physical therapy referral to help with his legs?

Usually, he just takes acetaminophen or naproxen. He has gabapentin but is hesitant to take it. He has done PT. Starting aquatic therapy soon. We like all of his doctors but he has butted heads with his neurologist a few times.