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Exercising with hEDS

elodieetoile
elodieetoile Posts: 7 Member
edited December 2024 in Fitness and Exercise
Hi folks. I have hypermobile Ehlers Danlos Syndrome (7/9 score) affecting everything except my knees - including small joints like fingers and toes. I also have scoliosis and have two twists in my spine and some muscle fusion around my shoulder blades.

I have not exercised regularly for a long time and I find exercise to be more painful than it used to be as my condition has worsened and I'm trying to improve my health, specifically my joint stability and strength.

So, I guess I'm looking for support and advice from others with hEDS or scoliosis. Any fellow zebras who want to be friends and support and motivate each other (and also vent about how much this sucks) please feel free to add me.

(A bit about me - I am 27, British/Indian, and not a bigot who will discriminate if you are queer, trans, POC, etc)

Replies

  • hipari
    hipari Posts: 1,367 Member
    edited August 2020
    I only have very slight scoliosis, so it doesn’t really affect my ability or workouts. Really just wanted to wish you best of luck and help your post stay on the first page so you’ll hopefully get more and better answers :)
  • yirara
    yirara Posts: 10,101 Member
    Do you have access to physiotherapy, especially aimed at eds? There are some things that might help you stabilize your body. Mainly specialized strength training. But there are other things that might make everything worse for you. That also includes stretching and strength training that does not stabilize your body but brings your body more out of balance.

    I'm currently trying to get further testing for eds, and suspect the classic or classic like type. but I'm a lot older than you and my subluxations and instable joints turned into super tight muscles, which basically keep my joints in place. Not sure what's better.
  • playhardkf2017
    playhardkf2017 Posts: 875 Member
    Hi! My mom has Ehlers Danlos. She’s had more surgical fusions and reconstructive surgeries than I can keep track of. She finds walking and these new Kangoo jump shoes to be the easiest way to exercise for her. I highly recommend trying to talk to a specialist in EDS to see the best approach to exercise with it, because like another poster said...some common exercises you think would help could backfire and not be the best for your body. Best of luck and power to you, Elhers Danlos is a really hard thing to live with. My mom amazes me everyday with her perseverance.
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