When I first got sick I lived in a very small town in Montana so it took almost two years to get a diagnosis. I had the rash long before I had any "clinical" signs.

I went through about every test those small town docs could come up with and it finely took a brand new resident who had just started at the hospital were I worked to ask me if I had DM one day at work...long story short he became my new doc.

I have had symptoms very similar to yours for about a year now. I just don't have the fluid retention. I have lots of trouble with stairs and inclines, cant bend or reach, or lift my arms above my shoulders. Getting up from the seated positon is hard, getting in and out of the bath. The drs. are not committing to a diagnosis yet. I present like I have a myositis, but the lab tests dont prove it. The last test today is the skin biopsy. I have had a rash for many years, but it seems mild compared to others. The best they have said so far is that I do have lyme disease that has prompted a myositis. Do you ever have days that your symptoms ease up at all?

I don't have a rash - just bumps that come and go on the backs of my legs so i don't think it is DM like you. i don't have a diagnosis and have MRI's scheduled this month to look at muscle changes and ??? in legs and hips. GP thinks polymyositis or polymyalgia rheumatica but Specialist not offering opinion yet.
Sad to here you have a short time left especially with young children. Best Regards

Coachp
Yes some days my symptoms ease up a bit but never go away - there is no rhyme or reason.
http://notmydisease.blogspot.com/ has more of my symptoms.
Hope u get a diagnosis soon. keep us posted