I'm glad you posted a message! I was dx'ed wth Lupus and Dermatomyositis sine myositis in 2008, but have been having problems for years. I have had mechanic hands since I was 18 years old, now am 36. No doctor ever recognized this as a DM symptom. I have had numerous miscarraiges (lupus), horrible skin for years. I was finally able to get dx'd because I got the heliotrope rash on my face, and itchy rashes and sores all over my body. They did a skin biopsy to dx. Even though you don't want to have diseases, it was actually a relief to find out. I was tired of not knowing why. I have had some muscle soarness in my shoulders and thighs. I have had a horse voice for no reason also. I get jittery sometimes, even when I haven't been on steriods. I get exhausted easily. The rash has made my body a furnace. My heart has also been beating irregularly so much it feels like its hitting my esophogas. It scares me and makes me feel like I could throw up. My doc says it could be the prednisone, but I also have Hashimoto's thyroiditis which can affect the heart. Who knows?? So, I have been in a flare since May 2008. i had to take sick leave in September because my job is very physical and is in a hot dusty environment. My skin couldn't handle it. i started making mistakes I normally wouldn't make, or forgetting things. I started running low grade fevers, and was just exhausted. I'm now on prednisone and methotrexate. It has gotten better, but not all the way. I am going to try to go back to work in March. I'm nervous about that, because I still have a lot of bad days. But i love my job and don't want to take a chance of losing it. I think its great to share experiences and have someone o talk to. There is also another website for myositis, it is myositissupportgroup.org It was nice to hear about your experience, keep in touch!

hi christy, thanks for writing back :-) what a great site, although I wish they hadn't moderated out my treatment summary. i can really relate to your feeling of relief at finally getting diagnosed! when i first had all the loss of flexibility, the weakness and pain in my joints and muscles, my family and partner told me a lot of things that were NOT "wow, that sounds weird and bad! go and see a doctor and if he can't work it out, see another until you find one who can work out what is wrong, because it's obvious something is wrong!" i am still angry after all these years that even afflicted as i was with that ridiculous inflamed huge red rash on my mug, i wasn't taken seriously by those close to me. but, then, they also didn't heed the fact that their dog was cold and tired and had dry crusty skin and a strange expression from all the oedema around her face. i had it looked into and she has hypothyroidism. now, the uphill battle is the swallowing thing. it makes me feel as if i'm about to choke. my throat is so weak that i can't easily swallow away the normal mucus that everyone swallows without thinking. it takes me several tries to rid myself of whatever is there, and sometimes i don't manage. that's where the choking feeling comes in. sometimes drinking a little water helps. i did a barium swallow x-ray and it seems i have gastric reflux, which is a bit of a drag from the prognosis point of view. i hope it won't get very severe. i don't know whether the reflux is a function of the 'deglutition (swallowing) disorders' they talk about. i have no doctor here who recognises swallowing problems to be an aspect of dermatomyositis! almost none of them even know what dermatomyositis is. i had a GP who was clued-in; she was the first to tell me she had any idea at all what my rash was. previously i had been told it was seborrhoeic dermatitis, or quite openly 'i have no idea whatsover'. this good GP (who has unfortunately moved away) referred me straight away to a rheumatologist on the possibility i might have lupus, and she's the one who set me at ease about the huge red burn-like mark on my hip and the calcium lumps in my muscles. i really wish i had a reliable doctor, because i am afraid of this. anyway it's good that you got in touch and that you understand when so many medical people just don't, the amazing tiredness you feel with this condition, and the weakness. to this day my parents have no idea what it is i actually have. i'm glad i don't see much of them.