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Should I Get Tested for H-EDS?

sickgirl1234

432d

Im already diagnosed with fibro, but im also showing several signs of H-EDS. Is it worth trying to get tested?

3

6

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Ehlers-Danlos Syndrome (EDS)

Fibromyalgia (FM)

Edema & Anasarca

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Top reply
    • the.misguided.girl

      428d

      @FreyaB this comment makes me hopeful! Fingers crossed they are on the ball for me and I don't even have to hint at it

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    • charleystokes

      431d

      Yes it is as I got diagnosed with both at the same time x

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      Reply
    • LifeInMulticolour

      431d

      They haven't yet discovered the genetic marker for hEDS. They diagnose using the beighton scale, I think you have to score at least 8 to get a diagnosis. Have you looked at the beighton scale to see how many you think you fit to? Unfortunately the fact there's no official tests for it makes diagnosis a very subjective thing. What country you're in will make a big difference to how you go about getting a diagnosis.

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    • the.misguided.girl

      431d

      I am in the same place. I was only recently semi-diagnosed with fibro (I say semi because they said I highly think it's fibro but hey the pain management (pm) team will say for sure) but I have been suffering with H-Eds symptoms for years so when I see the pm team I'm going to ask them about it.

      1

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      • FreyaB

        428d

        @the.misguided.girl this is exactly where I'm at atm. I was semi diagnosed with fibro and had my assessment with the pain management team yesterday who also suspect Ed's.

        1

        Reply
        • the.misguided.girl

          428d

          @FreyaB this comment makes me hopeful! Fingers crossed they are on the ball for me and I don't even have to hint at it

          1

          Reply
    • Equinox

      432d

      hEDS typically doesn’t show up on genetic tests. It’s a diagnosis of exclusion, in most cases. You can ask a rheumatologist or similar doctor for a screening though. They’ll do the Beighton scale/score and go through family history (which is what distinguishes hEDS from HSD in most cases). Do you have parents that are hypermobile? Or what symptoms are you having?

      4

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☝ 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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