Are there any other people who are living with polymyositis rheumatica? I know nobody in real life and would like to support of other people who really understand what I am coming from sometimes. Perhaps we can start a support thread, if there are others around. Please let me know if you are here.
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I don't have polymyositis rheumatica and in fact, I have never, ever heard of the disease. I gather it must be some type of rheuma but I am not sure, and now I am very curious. Would you please tell me what polymyositis rheumatica is, and how it affects you? Thank you in advance.
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i have been suffering from polymyositis for years now, it starts to get costly to treat and it controls my life i have small children that i sometimes cant even hold! :'( my hips are uneven and spine is twisted due to the swelling of my muscles..a support group would be nice..
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I can relate I have suffered since I was 13 years old. I feel alone because there is no support out there and if there is it is too far to drive to. I have not treated mine for years now there is hope. However, I do have major flare ups of muscle pain. I cannot take pain killers because I am allergic. Sometimes I just want someone to understand what I am going through. I hope you know you are not alone.
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You are not the only one.. My lower spine is so tweeked. I get paralized from the leg down driving more then 30 mins. Bad days you cant even lift a gallon of milk. My hips feel like there factored. Knees are shot elbows and shoulders are getting worse. All i can say is hang in there, Do what you can, and love your children verbally on bad days..
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I was diagnosed with this disease 4 years ago, and a treatment plan of daily prednisone was started. Careful attention is also given to my Vitamin D levels, and low levels can add to your muscle pain. The pain and muscle weakness have progressed and I now take steroid injections in my back, shoulders, and hips every 2-3 months. I have had fibromyalgia for 40 years, but this pain is different than that pain. Coping with both of them (even one of them at times can be very difficult). Lately, I have developed a lot of shortness of breath and more fatigue than previously. I hope you are able to find some treatment that will give you relief.
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