Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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rave713 12/27/2011

I have been off of all medications, except for my infusions, for 5 weeks. I have felt fine until getting over my cold. I can now feel pain in my legs. Have you found that even if you've achieved remission, you have to exercise daily?

deleted_user 12/27/2011

Yes u have to be on Exercise dear...

trpt1 12/27/2011

I do not exercise daily but it is a good idea to exercise. Pain in the arms and legs will come and go with our disease.

deleted_user 12/27/2011

I don't really have pain per se...but, I can tell you that I feel better in general when I exercise regularly. I was starting to become stiff and a little achy over the last couple of weeks. I haven't been as diligent about getting to the gym...but, I went twice in the last three days and feel MUCH BETTER.

Movement and motion are key with diseases like this. It's difficult sometimes to see the benefit right away...kind of a catch 22. Hurts to exercise, but feels so good after you're done. It can sometimes take time to build up endurance, but in the long run...exercise keeps your heart, muscles and joints healthy.

lexisgirl 12/27/2011

I've never reached remission so I can't speak from experience. I can say it makes sense that this disease is cyclical and it could be that you need a little medication to keep the pain away. My Neuro told me that most people have pain when they go off medications and it is up to us to figure out how to balance our desire to be off medications and how much pain you can tolerate without losing quality of daily of life.

I hope your pain stops soon!

deleted_user 12/31/2011

ALWAY EXERCISE!! You have to. I was in remission for like 20 years (PM) and when all those muscle fibers died..they fill in with fatty tissue (don't be alarmed..doesn't mean you will get fat) and calcify over time (like 20 years)...You will regain strength by hypertrophing the muscle fibers around the dead areas but don't stop exercising. Be sensible. Everyday is necessary, just something that keeps you comfortable and in motion. Not necessart to kill yourself but in our case, it's MUCH harder to work back from nothing than it is to prevent the downward slide in the 1st place....please learn from my experience. It's not an easy road back.

deleted_user 12/31/2011

Sorry that was every day isn't necessary and actually my traine mentioned that since we don't have the quantity of muscle fibers other people do and I think that since our's or "weird" that some times a do better if i exercise for a day or two and then a day or two off.
Just work smart.

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