hello I just got diagnosed with EDS just this year I am 34 and I can say I was so relieved bc since I was 12 I have always been told it's just growing pains or there is nothing wrong with you stomach all your test came back negative you are healthy there is nothing wrong with you ect....
When I talk to the geneticist and he looked at me and said Your pain is real you do have EDS (I started balling like a baby bc after 12-13 yeas of being told there is nothing wrong with you it's just in your head I finally have an answer on why my knees, shoulders, hips, pop out of place for no reason and my ankles give out for no reason and I hit the ground) finding out that 90% of my problem come from EDS it was the happiest and saddest day of my life to finally have answers. Now I'm trying to explain to my wife and kids that I hurt all the time 24/7 and I love my wife so much bc she has stayed with me and supports me 100%

Ehlers-Danlos Syndrome (EDS)

Symptoms Involving Nervous & Musculoskeletal Systems

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  • SurvivalBeard


    Yes I have many more symptoms but my message was long enough lol but does anyone else have trouble trying to explain EDS to people that don't have it and getting them to understand?

  • Wanderinglumos


    I’m glad you finally have answers! It’s such a bittersweet moment to finally have an answer after so long. It’s hard getting a diagnosis but it is so helpful to have answers. (Im not diagnosed. I’m seeing a geneticist this year for testing for eds but I felt this way after my POTS diagnosis). I’m so glad you have a great support system as well! Wishing you the best.

  • SurvivalBeard


    Now there is more to my story and I will post later just trying to get my kids in the bed

  • the39th


    I had the same experience.

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