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the.misguided.girl

462d

why is there not enough medical professionals aware of H-Eds. I have known what it is for years. anyway... I have had friends who are nurses question why I haven't been assessed (idk if that's the right paraphrase) for H-Eds when asked what's wrong and I say my joints are in agony or they hear my joints crack and make weird popping sounds. any uk peeps know if the pain management team are any good (2 weeks to go until I talk to them) I have been referred to them for fibro but I want to know if it's worth talking to them about H-Eds

Top reply
    • hello.its.me

      133d

      I find that it's not that they are not aware, its that they don't take it seriously unless you really fight back. Its been five years of me doing my own research to prove what I have and still they tried to tell me the official diagnosis doesn't matter if the treatment is the same. They even tried to diagnose me with fibromyalgia which i know i dont have. I fought back and a couple of days ago they agreed to send me for genetic testing in London. If your doctor isn't listening ask for another and advocate for yourself! Research and evidence like the hEDS diagnostic checklist for the EDS society might help!

    • hello.its.me

      133d

      I find that it's not that they are not aware, its that they don't take it seriously unless you really fight back. Its been five years of me doing my own research to prove what I have and still they tried to tell me the official diagnosis doesn't matter if the treatment is the same. They even tried to diagnose me with fibromyalgia which i know i dont have. I fought back and a couple of days ago they agreed to send me for genetic testing in London. If your doctor isn't listening ask for another and advocate for yourself! Research and evidence like the hEDS diagnostic checklist for the EDS society might help!

    • LifeInMulticolour

      461d

      It's definitely a struggle to get diagnosed with hEDS in the UK! I first went to the doctor's with knee pain at 11 and I was 29 by the time I finally got diagnosed, after years of knowing myself. I had to go to a private hospital in London specialising in hypermobility as I'd already been told I was fine by an NHS Rheumatologist, but I know not everyone can afford to do that. I haven't come across a pain management team. Though I did go in a pain management course years ago. I personally didn't find it helped me as it was very generalised and I'd already worked on all the acceptance etc that it was about. I don't feel like I've said anything very encouraging here, I'm sorry. All I can say is keep trying and keep seeing consultants and taking as much information as you can when you go for appointments.

      • the.misguided.girl

        459d

        @LifeInMulticolour I'm definitely going to keep on at them the same way I did with GP's. I don't necessarily accept the fibro diagnosis because it doesn't fully match the symptoms so hopefully the pain management team can bypass that and listen to what goes on

☝ 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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