Conversation

Phoenix Rising poll: "Have you noticed symptoms of connective tissue degradation since the onset of disease?" (#MECFS) forums.phoenixrising.me/threads/have-y (poll questions, replicated here)

Yes, with rapid onset
20.6%
Yes, with slow onset
55.1%
No, always had
7.3%
No, never had
17.1%

287 votesFinal results

11:38 PM · Jun 24, 2019Twitter Web Client

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Examples might include changes to nails, skin, hair, gums, fingerprints

TheDisabilityEnthusiast

@twitchyspoonie

Jun 25, 2019

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@jenbrea

This is weird because I've been sick since I was 9. I wouldn't really know what my body was like before.

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and

I started having SOME symptoms around 8/9 also? But when I had my 'point of no return' health event, there were rapid changes in skin elasticity, vascular fragility, etc.

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for me slow too. fingerprints, very bad nails, at the moment a big lot of hairloss, blood pooling,my hip I guess dislocates a bit, because hurts as hell, but somehow I can wriggle it in again. and interesting to read renal thing paper, last few month all over pain. it sucks.😡

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and

I actually had rhabdomyolysis symptoms around onset. Pretty scary but only in retrospect. Had no idea what was happening at the time.

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No, I didn’t have any of this. I also don’t have POTS, maybe that’s why?

JennySRP

@JennySRP

Jun 25, 2019

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@jenbrea

I didn't find out I was hypermobile until I worked with an osteopath recently but looking back on my whole childhood I realized I was always susceptible to loose joint injury sprained ankles and slipped ribs. It's not worse with ME except not being able to support muscle strength

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My nails grew weird and my skin would constantly rip, my hands were bleeding most of the time. My hands are healed now. My tendons are weak and get hurt easily. I thought it was because I was bedridden for so long, but maybe mold can weaken connective tissue too.

Gaia Tempest

@GaiaTempestUK

Jun 26, 2019

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@jenbrea

Idk which to choose as for years after I was diagnosed I had slow onset whatever, nails at one point, sthg else another.. Then when I had an unrelated operation 8 years ago I became permanently (so far) bedbound and all the hair on my legs fell out at once(I haven't a clue why)