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Anthea

673d

i don't yet actually have a diagnosis, but i've been struggling with chronic pain for several years now. i think it's probably eds, fibromyalgia, or chronic lyme but doctors have done nothing except tell me to exercise and stretch more. any advice on how to actually get things happening or as treatment until i get a diagnosis?

Top reply
    • coffeeandcuddles

      672d

      Ehlers-Danlos society's webpage has a great resource for finding EDS aware doctors in your area. That's how I found mine. Hope this helps!

    • coffeeandcuddles

      672d

      Ehlers-Danlos society's webpage has a great resource for finding EDS aware doctors in your area. That's how I found mine. Hope this helps!

    • Anthea

      673d

      i've been to a rheumatologist as well as multiple other doctors. she commented on my hypermobile joints, tested me for lyme (positive), and told me i have "fibromyalgia-like symptoms", then proceeded to do absolutely nothing about any of that because i'm young and might grow out of it, and i should exercise. i've been very active my whole life

      • Rin_O

        673d

        @Anthea Unfortunately, all you can do is try to see another one. My husband (also has EDS) went to one who told him to try CBT for EDS and wouldn't diagnose him... so it's really hit or miss. Good luck - I'd recommend my rheum but he retired shortly after diagnosing me 😔

    • Rin_O

      673d

      I had to see a rheum to get diagnosed with EDS - I would recommend looking up the diagnostic sheet and filling it out yourself to bring in!

    • coolsciencechic

      673d

      Go see a geneticist. Find a good Rheumatologist. Don't stop until someone listens to you.

☝ 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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