Hey y’all! I’ve had widespread chronic pain since October of 2018 but I was just diagnosed with hEDS. We’ve been suspecting it for a while but it still is somewhat of a whirlwind. How have you been able to cope with the whole idea of Ehlers and the possibility of it getting worse over time? I thought I had coped with it with my fibromyalgia diagnosis but this is all proving that I did not. Also if you have any tips about EDS in general pls share!!

Ehlers-Danlos Syndrome (EDS)

Fibromyalgia (FM)

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  • Alwaystired0704


    i was told i was hypermobile in july of this year after going my whole life and never hearing that from any doctor. it really opened my eyes as i did more research about bc it all started clicking together. i’m still waiting on my geneticist appointment to find out where i am on the spectrum but since then i’ve been in eds physical therapy building up my endurance and getting stronger. i was diagnosed w both fibro and eds within a few weeks of each other so it was a lot all at once. i’ve watched some yt videos on tips and also items that help a lot so i would definitely recommend that as well. i’m still learning so much and coping with everything but having a community online really helps

  • Dolley


    It's very bittersweet getting diagnosed. You will likely go through grieving on and off. I definitely agree that online groups help a lot. There is a Facebook group called zebras gone wild if you are over 18.

  • Chronicallyconfusing


    I definitely agree that it is bittersweet. It’s nice to have an answer however it is hard to know it’s not cure-able. My main way of coping is just to find other people to talk to to know that I’m not alone

  • tallgirl22


    I was just recently diagnosed as well and I realized that with my diagnosis, I finally accepted the idea of using mobility aids. I invested in a shower chair and other things that I originally thought I wasn’t “sick enough” to use. They’ve helped a lot with not hurting myself with daily tasks so that could be something to look into

  • Pleiades_Blanket


    thank y’all for your help! i’ll agree that finding communities has been helpful with chronic pain so i’m optimistic that they’ll be helpful with this new journey too! I’m also starting to look into more mobility aids bc like you tallgirl22 i’m starting to realize that it’s not worth risking more injury and I’d agree that this diagnosis has made it easier to accept the idea of them. Thank you again!

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