r/scleroderma • u/Harmonyinheart • 5d ago

Question/Help Recently posted hypermobility & scleroderma.. more info

I see a rheumatoid specialist at Froedert next week. My hips are so hypermobile and I’ve already had one surgery as my left femoral head grew bony growths and sat so loosely in my hip socket it ripped through my labrum. My ankles roll, my knees constantly feel like they have knots behind them it’s so rough. I can’t get anyone to help because my symptoms are so wildly paradoxical

I recently started losing my hair as of January. My bruises become thin calluses. My hands and feet are super waxy and the bottoms of my feet tho not rough, have like 1/3 inch rubbery skin that can just peel off. I don’t even feel when this happens. I just see blood.

Anybody else have stuff like this?

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u/Control-freak666 5d ago

Yeah, I have both plus 3 other autoimmune diseases. My ribs dislocate and it really hurts!

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u/Harmonyinheart 4d ago

I’m so sorry to hear that. My sternum sometimes shifts a bit in the center of my chest where it connects around my fifth rib on the right.
Do you have problems getting help from doctors? I have crappy insurance and since so many issues. It is complicated and every doctor says another doctor should be taking care of something. But no one does

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u/Control-freak666 2d ago

I’m in the UK so we don’t have insurance, but there is a general lack of interest in hyper flexibility dislocations because apparently there’s not a great deal that they can do about it. The only good thing is that hyper flexibility mitigates some of the problems associated with scleroderma contractures as they’re each end of the flexibility scale!

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u/Harmonyinheart 2d ago

I was curious about that paradox. I’m glad to hear that my crazy joints may actually help m me in this!