Hi im new, 48 male i hope its ok to post as im awaiting diagnosis and my ck results.
Then i assume its EMG and biopsy. Am i right in thinking ck result can come back normal for myositis? Or will it always be elevated. I think i may may have dermatomyositis as i have skin problems.
My story starts a few years ago. I have been fatigued and struggled to do things for at least a few years but as i have a desk job so ive managed. Then this summer i noticed a rash on both arms that flare up in the sunlight (feels like a bad sunburn, red and almost ulcered, very painful) and also my knuckles and elbows are very dry and beginning to have hardened skin on them.
A couple of months ago, i noticed a pain in my knees and that i have problems getting up from a chair. Its not just weakness its a pain that is actually quite sharp right on the patella. The pain runs right down my quads and into my knees on both sides. I am laid in bed now and all i can feel is my throbbing quadraceps. I took the dogs for a walk earlier so i think i overdid it. It was only 15 minutes but was a hill on the way back. I can seem to walk ok without pain but quads feel tired when i get back.
Ive noticed my quads are definitely thinner than they were so the wastage has definitely started. I also get a pain below my knee cap but i think thats just referred pain. This pain is definitely increasing.
In the last week ive also found my arms hurt if i have them up for any length of time. I also have back pains in the left shoulder blade area that ive had for a couple if months too.
So what worries me is how quick this pain has come on and how quickly it seems to be progessing.
I have read that when myositis appears after 45 its usually quite slow progression but this seems to be getting more painful each week.
My main worry is being able to continue to work. Ive read many posts on here and am alarmed at how many are so badly affected they needed to stop working. I have a young family and a mortgage so definitely need to work as long as i can.
Does anyone have any good news about this disease? How well does the prednisone work?
Is it true that prednisone can give 50% patients remission?
If prednistone works does it allow you to get muscle mass back or is that gone forever?
Am i allowed to drive with dermatomysitis or do they take away my licence?
I am scared stiff i will end up in a wheelchair or bedridden unable to move and rely on carers to feed and clean me.
What happens if my ck comes back normal? How can i convince my gp to send me to a specialist, he may just think its a bad knee that will go away.
Has anyone carried on working with this disease and if so how long were you able to work?