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BoneCrispy

729d

I'm having a really hard time emotionally current. I have hEDS, and lately my legs have been getting weaker and experiencing more partial dislocations. Its actually becoming difficult to walk on a regular basis. I know I've done a poor job of being able to take care of my joints. I didn't know until last year that I had EDS. I'm so scared to admit that I may not being able to safely walk anymore. I don't know what to do.... I'm a very scared and lost person when navigating this condition.. I need support and advice from the EDS community.

Top reply
    • Ren.exe

      729d

      Oh the Muldowney Protocol book is also good. And I have found a PT who works with EDS but I'm waiting for my first appointment. Don't lose hope, but it's also okay to shift expectations. 💜

    • Ren.exe

      729d

      Oh the Muldowney Protocol book is also good. And I have found a PT who works with EDS but I'm waiting for my first appointment. Don't lose hope, but it's also okay to shift expectations. 💜

    • Ren.exe

      729d

      I've been using braces and those help some. PT helped a little but ultimately pushed me too far. I've decided to apply for a wheelchair to use part-time and also use forearm crutches (smart crutches) and a rollator or cane part-time. There's a food part-time wheelchair user group on Facebook. A lot of what I had to do was accepting and grieving what I'd lost and then accepting that mobility aids weren't bad and didn't make me less than, but just helped me do more things. They aided me in moving more. 💜

    • Tinkerbell82

      729d

      I was diagnosed in 2019- at 36 years old. I have found a physical therapist who was gracious enough to learn about EDS and want to help me. We just purchased the book Living life to the fullest with Ehlers Danlos syndrome. It is informative for both myself and my PT. Though we have only being working on this particular method for a week, I can see some improvement. Side note: I had a major hip surgery July 2021 and in PT ever since. I was getting frustrated and aggravated that it was taking so long to recooperate. I had an ah-ha moment and told my PT about a book I have known about (the big yellow one mentioned above) and we decided to start working on that together. It’s a long painful and at times discouraging road, but I am hopeful that I will have a better quality of life when we are done with this book

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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