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xenith

713d

so, i’m not officially diagnosed with EDS, but i have gone to doctors and many have said they are pretty sure i have hypermobile EDS and that i need to get genetic testing, issue is my guardian does not believe anything is wrong with me and that i’m faking it all, i’m stuck because she says it so often that it almost makes me think that i am faking it and don’t realize, i have a lot of symptoms including joint pain, hyper mobility sin just about every joint, very stretchy skin, bad wound healing, and very easy bruising. doctors have said that i don’t have arthritis or fibromyalgia. there is one person in my family that has been officially diagnosed but it is suspected that a few more have it. so, does anyone have any advice on basically anything? i feel very defeated and i’m just not sure what to do

Top reply
    • UselessBagOfMeat

      710d

      I had a horrible dr tell me that I’m too short for hEDS. Excuse me, douche. You’re thinking of Marfan syndrome, not EDS. He also told me that my shoulder was fine despite the absurd pain any time I moved it. And he explained why my shoulder obviously wasn’t fully dislocated. Uh huh. I said possible slight subluxation.

    • UselessBagOfMeat

      710d

      I had a horrible dr tell me that I’m too short for hEDS. Excuse me, douche. You’re thinking of Marfan syndrome, not EDS. He also told me that my shoulder was fine despite the absurd pain any time I moved it. And he explained why my shoulder obviously wasn’t fully dislocated. Uh huh. I said possible slight subluxation.

    • BlueTheOctopus

      712d

      That's rough. I definitely agree with a lot of what's been said already and if your doctors are suspecting it you probably have it. With that being said, people who are faking usually know they're faking. If you have to ask yourself if you are faking your symptoms, you mostly like aren't. I hope that everything gets better, for you with your guardian. 💕

    • littlebug

      713d

      of course! you can check out the diagnostic criteria for hEDS on the eds foundation website

    • xenith

      713d

      ah that makes sense, well hopefully my doctors can figure something out and hopefully my guardian will start to beleive me, thank you for the information!

    • littlebug

      713d

      it may just be that your doctors are misinformed. i had many doctors tell me i couldn't have eds since they only knew information on one type.

    • xenith

      713d

      oh that’s so odd, i wonder why it’s different

    • littlebug

      713d

      if you have hypermobility type, the genetic test will just rule out the other types. when i went to the genetic specialist, they didn't do a genetic test, they did the clinical evaluation

    • xenith

      713d

      the rheumatologist and my regular doctor both told me i need the genetic testing so we can confirm i have eds and then they can try to figure out what type, i’m not completely sure i just know i’ve been told to go to a genetic specialist

    • littlebug

      713d

      just so you know, hEDS is just a clinical diagnosis so far. they don't have the genetic marker found yet to test for it. genetic testing will just rule out the other 12 types. what doctor told you that you need testing?

    • Bijoux_bean22

      713d

      Just remember that there is NO WAY any other human on the planet knows your body better than you. I had a similar experience, my living situation explicitly forbid mobility aids, I am now in college and use whatever aids I need to whenever I need to. Stay safe and listen to your body the best you are able. Dm me if you want to talk more.

☝ 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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