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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  • deleted_user

    Muscle twitches/spasms

    I get muscle twitches/spasms 24/7 and they occur randomly in almost every muscle. Leg muscles, back, side and stomach muscles, arms, bucks, delts. Sometimes they are just dull and annoying, but sometimes they are bigger and create a bigger jolt. Like when I get a neck or chest muscle one.The ones in my legs and arms might be three or four twitched in the same muscle, and I call my husband over to...
  • lexxxi92

    New Member ;)

    Hi everyone! Had a recent visit with my rheumatologist and she suggested I join a myositis support group. Diagnosed with dermatomyositis a few months ago. Symptoms first appeard in 2015. Currently on Prednisone, CellCept, and Wellbutrin. Thankfully the disease hasn't spread to my muscules and hoping to keep it that way. I do however suffer from horrible rashes on my hands, face, elbows and knees,...
  • pm2004


    My husband was diagnosed in April.  He has lost about 20 lbs. of muscle.  His rash is clearing, but the area around his eyes are swollen to the point that he can barely see.  The rheumatologist doesn't think this is part of it, but I believe it is.  Does anyone have this problem? 
  • seline

    Swelling on fingers

    hey guys I was diagnosed with dermatomyositis a year ago. I was wondering how you guys deal with swelling in the fingers when the pain gets unbearable? I'm under treatment but I'm sure as some of you know sometimes symptoms come and go as does the pain.
  • LuckyBabe

    Silicone Breast Implants - dermatomyositis

    Twenty five years ago I had silicone breast implants. Oct 17,2015 I discovered a limp in breast - perfectly round - a bit like a drop of water the size of a quarter. The next day after a doctor exam and a sonogram at the radiologist it was discovered my implants were leaking. I was immediately referred to a plastic surgeon for removal of the implants as a medical necessity. I underwent...
  • deleted_user

    exercise with high ck levels

    Hi everyone I was just wondering my doc told me not to exercise because my ck level is more then 200 which its 800 right now it was 360 a month ago but went up when he tried to taper me off prednisone. I was wondering if it would be safe to get on a treadmill or a stationary bike to get some things going with my muscles. Would like to know if anybody on this forum doing any exercise to promote...
  • Indigolove67

    Newbie here

    Hello everyone, I'm new here, just got diagnosed recently, i also have Lupus. Dropping by to say hello.
  • deleted_user

    Weak Quads + Walking

    Of course, as we all know with polymyositis (and perhaps DM. I don't know), the Quad muscles are generally affected (which affects getting up and walking, etc). Well, I'm no exception to that rule. When I was first in the hospital, my walking was actually fine. Granted, I HAD a few falls (which is what led me to leave school and come home to the hospital)...but I walked normally with proper knee...
  • nanny1611

    Who is still here?

    Just was wondering what members are stll here at DS.  Let me know who is still around the Myositis forum.
  • Testkit

    Serrapatese and Autoimmune

    Please read my post. Just search for Serrapatese title. It works!!!!  120000 Dr. Best. One a day , but just started on two a day. My doctor is shocked. 
  • im45notcrazy

    Antibody MDA5

    Has anyone been told they have the MDA5 antibody? My doctor told me that I have this antibody and that it means the chance of developing Interstitial Lung Disease is very high. He said it is a rare antibody. Wondering if anyone else has this or ILD?
  • koltes

    Normal CK and EMG. But I'm sick.

    Hello.I'm south korean live in seoul. 22years old.I found this place while google searching.Doctor can't find What is my disease in korea.I need someone help who knows well about myopathy or polymyositis.First. Muscle twitching began in my chest/legs/arms last year.And later month, started awful pain in my thighs. And i got chills too.I went to the doctor and got a blood test. Then My CPK level...
  • deleted_user

    DM in remission NO MEDS - DIET ONLY

    I hope all 48 members of this online group read this. DM onset for me was May 2007, also with hypothyroid and RA-type symptoms. at worst, could not open door knob to my bedroom, write with a pen, drive a car, due to joint pain. An exercise instructor, i would get "winded" rising one flight of stairs.After seeing 11 specialists, including derm, rhem (#2 in nation), Neuro, Endo, and GI docs, who...
  • autumm

    Hello Amber and other old friends

    Hello all. It's been a long time with no news of you all and I am certainly wondering how you are getting on. It seems so strange not to have news of you anymore. The few of us who were here are now over on the TMA Myositis site. It is so important to have some support network when this disease strikes. It would be so good to have news from you. Best wishes. Autumm
  • autumm

    Time to leave this site

    Hi all. I think we can agree by now that this site is no longer working for us. Everyone except myself and Nanny have drifted away. Some people can't even get back onto the site. May I suggest we all join up with TMA Myositis. It really is a great place for support and advice and we can all meet up there. I have been a member for 4 years as has TRPT and there is much information and support...