Anyone with Myositis and Mechanics Hands Disease?

[SjoGirl]

Hi, back on the diagnosis hunt. My hands have been a wreck - fingertips have been numb, somewhat swollen, splitting with deep fissures, numb, tight, palms look like they have spider webs and my fingers hurt so much sometimes I can touch anything. My rheumatologist does not think it is Raynauds and is not sure about scleroderma, she thinks it might be mechanics' hands' disease which is part of myositis.

I've been diagnosed with myositis in the past but not from tests. She is going to run those in April. Just wondering if anyone's been down this path.

[jazzlover]

I've never heard of mechanic's disease. I was tested for myositis in the 80's .. they finally decided on "Fibromyalgia" instead.

Is there an actual test for scleroderma? I worry about that for myself sometimes because I have Raynaud's and my uncle had scleroderma.

PS .. Be sure to avoid any store-bought liquid hand soaps.

[SjoGirl]

Hi Jazzlover, I never heard of this either, apparently, it's rare. That said, if something is rare I'm inclined to be in the group that has it.

Here's what I found searching for information about scleroderma testing https://scleroderma.org/diagnoses-tests/. My rheumatologist said that the lesions are typically round, my wounds are not, they look way more like the mechanic's hands photos.

[meirish]

I think if it was me I would make sure to have biopsies or whatever to rule out the scleroderma as this disease can affect organs of the body. If you would be sitting on an undiagnosed scleroderma it could cause more issues. Just my humble opinion. These darn autoimmune diseases sure can be hard to diagnose. Good Luck. meirish

[SjoGirl]

Hi Meirish,

Thanks. I am pressing my rheumatologist as hard as I can about a diagnosis. I concur that there should be biopsies but she has not mentioned them. She is talking about bloodwork but I think to look for something other than scleroderma.

I'd change docs and may do that yet but as you likely know that is a major pain. I'm not sure I could see anyone sooner than I see her and I'd have to fill them in from scratch.

Just tired because I thought I was done with this. Sigh

SjoGirl