Is there anyone here with Dermatomyositis?

bpayne78

It can have the name of either Dermatomyositis or Myositis (one has skin issues, one doesn't other than that they are the same). I have Dermatomyositis so have the great pleasure of having both muscle issues AND skin issues. :grumble: I know it's a long shot anyone on here has it as my disorder is rare. A brochure that my doctor gave me said that it's estimated that 5-10 people out of a million are diagnosed each year. It would be great to find someone who's trying to lose weight at the same time as fighting this disease.

IF you haven't heard about it, it's an Auto-Immune disorder that causes inflammation of the muscles and a rash on the skin. The rash is itchy and the muscles ache terribly. Sometimes I walk like I'm 80 years old or more and I'm only 32. When that happens, exercise is the LAST thing on my mind. I've been on and off Prednisone three times and now I'm on an Immuno-suppressant that I take a low dose of once a week (for now, that may go up).

It gets so frustrating trying to watch what I eat, trying to get in workouts in between when I'm in pain & greatly fatigued, and still tend to my husband, two boys, and work. I'm just trying to find someone who's going through this too, maybe has been through this and conquered it to get suggestions from.