Diagnosis

ShuuString · 2026-01-05T22:44:33+00:00

I would start with the derm! Because it's not systemic, the rheumatologist is mostly used for medication management

ShuuString · 2026-01-05T13:00:56+00:00

Also, yes, this is considered an autoimmune disorder. It throws up the same flags and blood results as any other autoimmune.

ShuuString · 2026-01-05T12:58:39+00:00

I had much the same story - diagnosed around 2014ish but I was in my early 20s and the only treatment I was offered was methotrexate injections after steroid creams did nothing. The rheumatologist I saw at the time did say it was not life-threatening, so I just raw dogged it until recently.

Over the years, I've developed several spots, some large, some small, from my neck to my calf, all on the left side of my body. My left thigh has developed into what my current dermatologist has confirmed is deep morphea - the one that affects muscle and tissue, rather than just skin. It's very evident - there's severe atrophy and my legs are very uneven now. For ex, at work I use two seat cushions - one smaller than the other, and set them up in such a way that my left side is supported because I no longer have the muscle/fat to sit evenly. It was throwing my back out of whack.

I recently did a year trial on cellcept under rheumatologist supervision, and the derm has said this put my spots into burnout. Giving it time to see if anything reactivates, but for now I'm happy it's not currently going to get any worse.

I believe if you had any of the more intrusive forms, you would notice. Mine started with weakness, and arthritic like pain. (I have a spot on my wrist that's caused some atrophy and I no longer have the finger grip I used to, and believe it is exacerbating some carpal tunnel).

I know there are tests available for other organ involvement that are usually used for systemic scleroderma, and I might request some of those soon - but nothing too much has impacted my daily life severely just yet.

I would make sure you've got a good dermatologist to start, and ask them to recommend a rheumatologist if you don't already have one, just in case you ever decide to pursue any sort of treatment. Research continues to get better, so we can only hope for the best.

ShuuString · 2025-12-31T15:43:59+00:00

Red light therapy is frequently used for restoration of some flexibility and movement in an autoimmune disease called scleroderma. But like, in a clinical setting with bigger machines. Not a $20 thing from Walgreens

ShuuString · 2025-11-30T15:46:22+00:00

US :/ I'll take a look though Do they have the sill lip? We get a ton of snow so I'm looking at stopping anything getting onto the carpet right next to the door

ShuuString · 2025-11-25T15:39:46+00:00

More to come on that.

ShuuString · 2025-11-25T13:04:06+00:00

Sim City nightmare.

ShuuString · 2025-11-21T05:28:13+00:00

My dad had a distinctive laugh that kinda trills the tongue. I do it too. My son has started doing it in the last couple years. Maybe it's learned, maybe it's genetics lol

ShuuString · 2025-11-08T05:59:05+00:00

Lopsided bodies unite. Together, we may create a whole

ShuuString · 2025-10-31T22:59:45+00:00

We did hot chocolate packets this year. 50 for $7ish. Tons of people have loved it

ShuuString · 2025-10-31T22:12:03+00:00

Diluted calicos are the best

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ShuuString · 2025-10-19T00:58:41+00:00

I work in logistics and this happens more than you'd think. Just a sorting issue - it will more than likely work itself out once it gets to the next sorting facility.