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Newly Diagnosed with EDS: Share Your Story

Ricosgirl_77

743d

hi there, newly diagnosed with eds after a 20 year journey. would love to know your stories!

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6

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Chronic Constipation

Chest pain

Ehlers-Danlos Syndrome (EDS)

Chronic Generalized pain

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Top reply
    • justkittenya

      739d

      I was diagnosed about 3 years ago, after my POTS diagnosis and around the same time as MCAS. I struggle the most with stability, balance, and pain control.

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    • justkittenya

      739d

      I was diagnosed about 3 years ago, after my POTS diagnosis and around the same time as MCAS. I struggle the most with stability, balance, and pain control.

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    • kat_hleen

      742d

      Hi, I’m 21 and didn’t get my EDS diagnosis until I got to meet with a specialist about my POTS and he put the pieces together that I was a textbook case of hEDS.

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    • DrewSolazzo57

      743d

      Hey! I’ve been fighting for about 2 years to just get my life under control with it. Haven’t been officially diagnosed but several of my doctors believe I have it as do I. I struggle A LOT with constipation and sometimes don’t go for 2 weeks at a time. Also have a lot of heart pain hoping to get checked out soon

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      • Ricosgirl_77

        742d

        @DrewSolazzo57 I hope you find answers soon!

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    • graytail

      743d

      Hi i'm 36 almost 37, I've been diagnosed since I was 26 years old. I've just started PT and it's helping a lot with my chronic back pain - even after I badly dislocated my left hip. Also having good results from CBD delta 8 gummies for sleeping and occasional pain. I'm still very hypermobile!

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      • Ricosgirl_77

        743d

        @graytail hi there! Nice to meet you. I'm 44 and have been search for a diagnosis for all of my "odd syndromes" for about 20 years! I never realized I was hypermobile until my new Rheumatologist pointed it out after I was discussing DNA testing I had done and noticed I have a gene mutation for EDS. I had bursitis and tendonitis in my Left shoulder at 17 and frequently rolled my ankles and neck Instability, all from marching band!! Glad I was never in competitive sports as a child! My worst right now is the fatigue, the muscle fatigue and stiffness (after doing routine activiturs) and low back pain from my SIJ. I Think I'm in a bad flare right now, but honestly, Im still learning how to tell when I have a flare becausr I feel like im always bad😥I would love to hear what has worked and what hasn't from all of yall!

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☝ 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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