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#eds

3 posts3 participants0 posts today
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Cassian [main]

EDS is weird.

Sometimes I have to use a wheelchair because of fatigue and to prevent tired hips from just popping out.

If my hip goes it's better to use crutches because wheelchairing with a subluxed hip is harder than supported walking.

But today, because my shoulder recently popped out, I can't use a wheelchair or crutches because I need to rest my shoulder.

So I look less disabled BECAUSE I can't use one of my arms. :D I have to wear my special sunflower lanyard to signal my disability because I don't have mobility aids with me.

Green lanyard with sunflower pattern, on train table.
ALT
#disability#EDS
Replied to Steph (they/them)
Steph (they/them)

on hypermobility (long)

I actually had no idea I was hypermobile until my partner (a former sports scientist) started pointing out that my range of motion is abnormal and I bend in ways I shouldn't.

Then we started noticing other things, like the fact that I am not losing any flexibility with age, my ankles are pronated, my joints click and crunch like crazy, I don't like standing for long periods of time (hurts!) but I can walk FOREVER, I bruise easily, I get dizzy when I stand up and tire quickly despite being quite fit, my knees are AWFUL, I have very long fingers and toes, I've had digestive issues my whole life, I have like no face wrinkles but my hands look like a 60yrold's...

And then I realised that the weird horrible feeling I get in my hips and shoulder joints sometimes, like they're out-of-joint and unstable, is because THEY ARE. They're subluxating.

And now I suspect my migraines are partially caused by joint instability. Specifically, my neck. I have an orthopaedic pillow and a cervical traction device and those help a lot.

Not a huge surprise. #ADHD and #hypermobility are co-morbid. However, I haven't been officially diagnosed. Crucially, I don't have a positive Beighton score: my hypermobility is primarily in my arms and legs. So I don't know if I'd be taken seriously. I also wouldn't consider it disabling. Annoying, maybe. I clearly got a milder case. I know a lot of folks with #EDS who really suffer!

So maybe I'll get properly checked one day? For now I'm just working on strengthening my muscles to support my shitty joints. And also on trying to pop my left collarbone back into place, because it's sticking out right now for no good goddamned reason...

Mark Martino

“Conclusions: The predisposition to anxiety in people with variant connective tissue reflects dynamic interactions between neural centres processing threat (amygdala) and representing bodily state (insular and parietal cortices). Correspondingly, interventions to regulate amygdala reactivity while enhancing interoceptive precision may have therapeutic benefit for symptomatic hypermobile individuals.” #EDS #CTD cambridge.org/core/journals/th

Alien_Sunset

So I come to the hivemind:

do any of you all have any recommendations or favorite things that you have used on your own person to help keep you from accidentally injuring yourself?

Not just hands/fingers/wrists. But also arms/elbows, shoulders, knees and ankles.

#eds #Hypermobility #hsd
3/4

UnCoveredMyths

I'll have another post or two later.

This post is about #EDS and finger splints.

Wednesday, I went to the hand surgeon. Thankfully, he knows EDS and knows surgery is not a good idea.

So today, I went to the OT he uses, in the same office.

I thought it was to talk about splints and exercises.

It was just to measure for splints.

The only ones my insurance covers are plastic. She made one for me.

We talked about the metal ring splints. the place she sizes for and recommends charges $100 a piece.

And she doesn't even order them.

So, I looked online. I found one called Zebra Splints, run by another person with EDS. A much more reasonable cost.

Has anyone bought splints from her?

Any other recommendations?

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