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@marye2

I would add that you find a Ehlers-Danlos/hypermobility physical therapist to keep your muscles strong and limber as part of your treatment plan. https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/diagnosis-treatment/drc-20362149

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Replies to "I would add that you find a Ehlers-Danlos/hypermobility physical therapist to keep your muscles strong and..."

I too have hypermobility ED syndrome. I was a good gymnast and great at yoga, and of course back in my youth there was no such thing as checking kids out for such congenital abnormalities. (scoliosis too).

Consequently, I developed all kinds of loose-jointedness, requiring surgery, for example: extreme kyphoscoliosis (required major spinal reconstruction, which left me with considerable nerve damage. That included double incontinence,
perineal numbness and also numbness of most of back - cauda equina syndrome.

Also three knee operations, double bunionectomy, reconstruction of basal joints of both thumbs, and I'm struggling much belatedly to strengthen the muscles around all my joints. My hips are kind of giving way now too. (If I didn't start upper body strengthening, I could never get up after I fall down - all too often).

Best to all you EMS patients!