my rheumatologist told me i somehow jumped the TWO YEAR wait list (i literally just called the regular scheduling office bc i was confused when the EDS clinic messaged me). he evaluated my history & gave me that Beighton Score test. we had to test some other things like lupus first (which came back negative) but he essentially confirmed it for me. the treatments? tai chi and “getting out of my head.” but he validated that everyday things are so difficult for me to my mom. idk it was a weird😭

7

My rheumatologist misdiagnosed me with fibromyalgia when I was 10 and then told my family that they needed to ignore me when I was exhibiting “pain behaviors.” My neurologist dislocated my shoulder when she was examining me and she asked if that happened often, sent me to a geneticist and said it’s a far stretch but she had a patient like me decades ago and might be the answer to my issues. I had never heard of EDS before, but 6 months later I was diagnosed by a geneticist.

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for me personally, the main difference it made was it made my mom stop gaslighting me and start actually trying to help a little. it can be useful for getting referrals to certain doctors and stuff but i’ve also been turned away from a doctor for the diagnosis 🙃

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