In the last year, I’ve gotten chronic pain from fibiromyalga, which I’ve gotten under control, but I also have debilitating joint pain everywhere. I am on crutches. Everyone keeps saying “When you feel better” or “when you get better.” Like when I get tested for eds I can get treatment and go back to work and loose the crutches. I feel like I’m the only one who knows there’s a good chance this is permanent.
I’m grieving my old life while everyone around me expects things to get better. I can’t bring myself to break their hearts while mine is breaking.

Fibromyalgia (FM)

Ehlers-Danlos Syndrome (EDS)

Malaise & Fatigue

Chronic Pain

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  • EDSdancer


    When I got diagnosed my mom cried because she was just finding out then that I’m stuck with this pain for life. I already knew and so I didn’t react like her

    • MultiChronic


      Wow, my mother just says "ok. Sorry" to my diagnosis of type 3

      • Mj_and_Otis


        my moms the same way. It sucks

    • Zebragirl


      same, im still undiagnosed for hEDS but my mom was surprised that the doctor confirmed im hypermobile even though I'd told her many times about my theory, and the joint subluxations i was having. She thought it was all in my head

  • Foxtail


    Yes, eds is permanent and many ppl use mobility aids their whole life. Unfortunately you just gotta treat the symptoms, there's no cure for eds

  • Mj_and_Otis


    I hate that so much. The same thing happens to me. Eds is forever. And it’s hard enough to accept that without people around you expecting you to get better. I’m also on platform crutches and afo braces

  • Atusin


    G-d, I'm so sorry, friend. Grief for a future you will never have is the hardest grief there is, because it feels like no one understands. We understand, I'm so sorry the people in your life are not supporting you the way they need to through this.

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