I am the newest DM here. I don't have the muscle thing yet and never hope to have it, But I do have such sun sensitivity that I can not really go out side during the day. It feel like the sun is eating up my nose.ears, throat and chest. Its hard to breathe, not quite a shortness of breath maybe a burning heavyness. My finger tips are so sore that it hurts to type. finding a support group has been hard since practically none exist. I hope to find support here.

Hi Rachel, I have only had the skin problems so far, no serious muscle involvement yet. I don't want the muscle issues either. My skin was getting better and has recently started to get red again. My fingernails have hurt very badly also. I've also had issues with breathing, a pulmonologist told me it could be from the prednisone and the weight gain from the prednisone. I have been in a flare since May 2008. It has gotten about 80 to 90% better, but gets worse when I become very active. I get exhausted very easy but can manage. I thought I may be able to get off all my meds this year but that was wishful thinking. I was off work for 9 months in 2008 through into 2009. I have been back to work for almost a year now and am managing. I tend to sleep a lot. My advice is to listen to your body and take a break when you need to. Good luck and God bless!