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Need advice on talking to doctor about possible EDS diagnosis

willownyx

516d

Does anyone have any advice on how I should talk to the doctor about me most likely having eds? I've been in so much pain for the past few weeks and I've been putting off making an appointment because they didn't take me seriously last time I brought it up and they blamed constant join pain and dislocation on anemia? But it's gotten to the point I'm missing college and all sorts because everything hurts, so does anyone have any tips on what I should say or does anyone have similar experiences? Thank you :D

5

4

4

Joint pain

Generalized pain

Joint Stiffness

Anemia

Hypermobility Syndromes

Ehlers-Danlos Syndrome (EDS)

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Top reply
    • murdermittens

      508d

      Honestly I got tired of all my doctors telling me it was nothing and I finally demanded a genetics referral. I got fed up and I wasn't especially kind when asking for this. However I did get diagnosed and I was validated that I wasn't crazy and it wasn't imaginary

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    • murdermittens

      508d

      Honestly I got tired of all my doctors telling me it was nothing and I finally demanded a genetics referral. I got fed up and I wasn't especially kind when asking for this. However I did get diagnosed and I was validated that I wasn't crazy and it wasn't imaginary

      2

      Reply
    • EDSdancer

      516d

      Some doctors don’t even know about EDS unfortunately, but I definitely recommend seeing a pain specialist or someone who has a bit or knowledge on the syndrome.

      1

      Reply
    • elle.parks

      516d

      This same thing happened to me and I’m really sorry bc it sucks. I had to find a new doctor. In addition, I wrote down my symptoms and when I had them and details so that it was more difficult for them to wave it off like it was nothing. Good luck!

      1

      Reply
      • willownyx

        516d

        @elle.parks glad I'm not the only one, it definitely sucks, but I'll try writing everything down yeah!! thank you so much!! :)

        0

        Reply

☝ 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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