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willownyx

366d

Does anyone from the UK know any good charities or healthcare / doctors that know about hEDS and could help me with a diagnosis and support? I've been waiting just over 4 months now for an "urgent" rheumatology referral and honestly I'm loosing any remaining hope lmao I've been in a ton of pain recently, tonight was probably the worst it's ever been, to the point I'm going to make an urgent call to my GP tomorrow even though I don't think they can really do much, I'm just that desperate at this point lol. I've taken Naproxen and Cocodamol throughout the day today just to cope with walking and actually doing everyday tasks and have taken amitriptyline tonight since it's been so unbearable. Honestly surprised I can still be in pain with these main painkillers in my system lol!!

Top reply
    • CriCri

      366d

      Hellooo, it's already been mentioned but I wrote an email to EDS Support UK with my location (I'm in Scotland) and they advised which rheumatologist to go and see and I got my diagnosis straight away! I already had a diagnosis from many years ago of hypermobility but no health professional took it seriously and now I've had multiple joints surgery so it was necessary for me. I'm certain they will help you, they are wonderful! I also advise joining the Facebook group as there's lots of support from the team and peers on there. Hugs 🤗🙏

    • CriCri

      366d

      Hellooo, it's already been mentioned but I wrote an email to EDS Support UK with my location (I'm in Scotland) and they advised which rheumatologist to go and see and I got my diagnosis straight away! I already had a diagnosis from many years ago of hypermobility but no health professional took it seriously and now I've had multiple joints surgery so it was necessary for me. I'm certain they will help you, they are wonderful! I also advise joining the Facebook group as there's lots of support from the team and peers on there. Hugs 🤗🙏

      • willownyx

        366d

        @CriCri thank you for sharing! that definitely gives me a bit more hope to try them :D hugs 🤗🤗

    • Ballet_Bot23

      366d

      I second the EDS helpline, they might be able to recommended a Dr in your area who you might be able to get a referral to to help with diagnosis. Here's the number:0800 907 8518 they're open 9am to 3pm Monday to Friday.

      • willownyx

        366d

        @Ballet_Bot23 tysm!!

    • SirenSupanova

      366d

      With healthcare and doctors I’m not sure but EDS support uk has a phone line you can call aswell as support groups both on zoom and in person for different counties/ cities as well as like a 25 and under group, lgbt one, neurodivergent group and a 40/50+ one as well I think it’s all on their website hope this helps

      • willownyx

        366d

        @SirenSupanova tysm, will definitely look into this :)

☝ 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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One user mentioned reaching out to an EDS specialist in the Oxford area privately for a diagnosis. While specific charities or healthcare providers are not mentioned in the provided context, you may consider discussing your concerns with your GP and asking for recommendations or referrals to specialists who have experience with hEDS.

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