What does dermatomyositis feel like?


It started pretty simply, I felt physically tired and my arms and legs just felt heavy. But then I started noticing that they were weak too–it was hard to lift my legs into my jeans, it was becoming harder and harder to lift dishes into the cupboard.

Then my muscles began to degenerate in earnest. The tops of my thighs and biceps began to feel tight, and then I began to get a weird rushing sensation in them when I changed position. I’ve come to associate this rushing sensation with the muscle degrading, though I don’t know how medically accurate that is.

Then I started to get skinny.

I wasn’t eating enough because of the stress, but more than that my muscles were visibly degrading now. At this point my upper arms are the same width as my lower arms and my shoulders are just bone.

The skin redness is slight, mostly around my knuckles, sometimes a bit on my chest or tops of my thighs or under my eyes. However it seemed to be, perhaps fortunately, playing up the day I went to the specialist doctor and got properly diagnosed, because it made it easy for him to see what the condition was. The redness is already improving now that I’m taking prednisone, but really, I’d take ten times the redness for any strengthening in my muscles.

I’m stiff too. My inner elbows and backs of knees used to hurt a lot, but that’s getting better. I can’t bend over very well. The worst thing is my hands: the are stiff and my fingers don’t bend normally. I can’t flatten my palm on the top of a table, for instance, my fingers curl up. I can’t type as fast because of this, though I’m still a reasonably fast typer.

At this point I can’t climb stairs without help. And I have to walk slowly and carefully because the kind of insignificant little toe catch we all do (or rather, I used to do) everyday without a second thought would send me face-planting as I can neither correct well with my legs nor catch myself with my arms.

Life is slow and strange. I feel like I’m moving underwater most of the time, or trying to run in my sleep.

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