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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Muscles & Bones
/ Polymyositis & Dermatomyositis Support Group

In Limbo Land - what to do?

freelee
freelee
I've had problems for 10 years, you think i would be use to it now, and I am at my wits end with the pain. Only recently got a diagnosis of "inflammatory Myositis" from a muscle biopsy. This gave me hope - light at the end of the tunnel - Trialled prednisone - did not work so now doing nothing except pain meds, which don't seem to be working, and waiting. I am waiting for physio at local hospital and waiting to see neurologist who might give a more specific diagnosis. GP says I may never know. i feel like I should be doing something - I read eveything I can about myositis but the pain and weakness and swelling is really getting to me. Any suggestions appreciated.
deleted_user
deleted_user
I too have had severe cronic pain and swelling from PM, I have taken many pain meds for years. I find that maybe trying to relax helps. I have a warm bath, that helps. Yoga may help. I live in Canada and I find that the summer I feel much better than the winter. I have to remind myself to take it easy in the winter as much as I hate staying home. Water exercise can be good. Just sitting in the sun in my yard and looking at all the beautiful flowers seems to take my mind off of the pain. Hope some of this works.
deleted_user
deleted_user
freelee; Have you seen a norologist yet?
lexisgirl
lexisgirl
I felt that way too and waiting to see a Neurologist felt like a terribly long time (4 months). I like Pattianne's suggestions. I would also push HARD for a Neurology appointment. Ask to be put on a list for last minute cancellations or ask if there is another Neurologist you can see sooner. Explain how uncomfortable you are feeling. They often have "hidden" appointments they save for emergency. You have to really push for them.

I'm surprised the Prednisone didn't work. Maybe it wasn't a high enough dose or long enough to tell? Prednisone works on all types of inflamation. Of course, I'm not a doctor so I don't know. Maybe try an over the counter anti-inflammatory like Motrin or Advil. I had pretty good success with Naproxen too.

Hang in there and push for the care you need a deserve. I do hope you find some relief soon.
deleted_user
deleted_user
when my feet swell and I get pain I use naprozen and it seems to help.
freelee
freelee
Thanks for replies - I will try and find what naprozen is here in Oz. The Neurologist rang and delayed my appointment - she is the only 1 I can find in Sydney Australia who specialises in myositis
deleted_user
deleted_user
Be careful taking prednisone and NSAIDs like naprosyn. That's the brand name in the US, the generic is naproxen. Both can cause some pretty nasty ulcerations in your stomach. Believe me, i've seen the end result, ain't pretty. Not impossible to do but PLEASE BE CAREFUL.