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Moon_Fawn

313d

Has anyone with EDS been diagnosed with Fibromyalgia first? I’m starting to question my diagnosis now that I’ve looked into EDS… anything helps. Thanks!

Top reply
    • str8outtacollagen

      297d

      I was diagnosed with fibromyalgia when I first started having chronic pain and my doctor at that time essentially said “it’s a catch all diagnosis when we don’t really know what’s causing you pain, and not all doctors believe it’s a real condition”…soooo that was really discouraging and not necessarily accurate? It took me 8 years to be diagnosed with hEDS and the specialist I saw at UTSW who diagnosed me said I could keep fibromyalgia on my chart if it’s helpful for me to get the treatment I need, but that at the end of the day hEDS is the root cause of my fibromyalgia, POTS, allergy issues, nerve issues, etc. Whether fibromyalgia is the root for you or if something lies beneath that diagnosis - you deserve care for the pain you’re experiencing…and if peace in pursuing more answers is worth the long process of getting to the bottom of things then I hope that you’ll be blessed with a team of doctors and friends that support your health journey 🖤

    • str8outtacollagen

      297d

      I was diagnosed with fibromyalgia when I first started having chronic pain and my doctor at that time essentially said “it’s a catch all diagnosis when we don’t really know what’s causing you pain, and not all doctors believe it’s a real condition”…soooo that was really discouraging and not necessarily accurate? It took me 8 years to be diagnosed with hEDS and the specialist I saw at UTSW who diagnosed me said I could keep fibromyalgia on my chart if it’s helpful for me to get the treatment I need, but that at the end of the day hEDS is the root cause of my fibromyalgia, POTS, allergy issues, nerve issues, etc. Whether fibromyalgia is the root for you or if something lies beneath that diagnosis - you deserve care for the pain you’re experiencing…and if peace in pursuing more answers is worth the long process of getting to the bottom of things then I hope that you’ll be blessed with a team of doctors and friends that support your health journey 🖤

    • Zebra67

      311d

      Yes I was diagnosed with osteoarthritis at 18 and fibromyalgia in my late 30s after I injured my neck at work. I always wondered about getting osteoarthritis so young and how my joints all cracked and my back would go into spasm even primary school ! I also had joint subluxations as a child but didn't know what they were - overall pain too but didn't know it was abnormal. I assumed everyone was like this. It makes me really cross that it took a friend to suggest I look into hEDS and sent me the checklist. I had seen numerous rheumatologists over the years and had to have knee replacements quite young and yet noone ever thought of it ! I was 50 when I took the hEDS list to my rheumatologist and he changed my dx from fibromyalgia to hEDS.

    • Doglover25006

      311d

      I’m wondering the same thing. I feel like my hEDS diagnosis could replace multiple other diagnoses I received first, but idk how to start working through that. The specialists are all in their own silo and I don’t even have most of them replaced from when I moved almost a year ago.

      • Moon_Fawn

        309d

        @Doglover25006 I just moved to a different state and I have yet to get insurance 😩

    • Chronicdecay

      313d

      I was diagnosed with fibro maybe 8 years before a diagnosis of hypermobility spectrum disorder, which was changed to a hEDS diagnosis when I got a new rheumatologist a few years later. For me at least, both diagnoses seem to be correct. The hEDS diagnosis didn't replace the fibro one, just added to it. And none of the many doctors, physical therapists, etc I've seen over the years have disagreed with the diagnosis of both (along with a few other issues/conditions). It's definitely possible to have both. But if you're concerned about EDS, I would definitely try to see a rheumatologist.

      • Moon_Fawn

        312d

        @Chronicdecay thank you that’s good to know!

☝ 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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