Newly Diagnosed with EDS: Share Your Story

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

Your answer

justkittenya

2y ago

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.

kat_hleen

2y ago

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.

DrewSolazzo57

2y ago

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

Ricosgirl_77

2y ago

I hope you find answers soon!

graytail

2y ago

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!

Ricosgirl_77

2y ago

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!

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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