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A_Delicate_Flower

841d

My husband and I wondered if I have Fibromyalgia but my Dr actually thinks I have EDS. After quite a bit of research,I feel like my symptoms match EDS more closely than they do Fibromyalgia. However, I'm not "circus level" flexible. I just started with a PT who specializes in hypermobility. She said my joints feel a little loose but not too terribly so. While EDS feels the most true right now, I also feel like an imposter by claiming to be a part of that diagnosis (given I think unofficially by my Dr. Haven't had genetic testing or anything done yet). The whole thing is exhausting to me. I just want to feel good more than I don't. I'm tired of working so hard to feel good. I also started on low dose Naltrexone about a month ago. It seems to be helping some of the pains (exercise recovery seems to be improved) but I also think it's too soon to say. Any thoughts or ideas are welcome! 🙏

    • PainterShock

      839d

      I recently went through an insane year of trying to figure out if i had JHS or hEDS and ended up getting diagnosed with JHS in the end. It can be really nuts trying to get into genetics. I had to go through screenings for my heart and eyes to ensure i was healthy enough for it and they during the consultation before they decided to actually test me or not they essentially had me strip down and checked my body head to toe for lose skin, hypermoblity in my joints, and even measured my legs. Then once they decided and took my blood it was a few months waiting game and extremely expensive. If you wanna go through genetic testing its going to be super expensive so i recommend only doing it if its suspected you have a dangerous type of EDS or so. hEDS has no genetic marker and even then the treatment is the exact same has JHS. I'm not a major case when it comes to my joints or skin streachablity either so really i'd decide if you wanna go through a bunch of testing based on what type they think you might have. If its vascular i 100% recommend you get checked out ASAP for example.

    • Joy

      840d

      Most of the EDS cases aren’t at “circus level”, but usually suffer from repeated dislocated joints. And I know it’s not easy 🥺🥺, but please stay positive. Have you tried physical therapy as well?

☝ 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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