Is this the place for me?

cslo90
cslo90 Member Posts: 1
in Chat to our Helpline Team

Hi, I have been diagnosed with Hypermobility Syndrome since my early 20s, but have had dislocations since my teens. I have been trying to manage as best I can but I don't seem to have any care team to reach out to when I am struggling. I have widespread joint pain and have had surgeries to stabilise my knees and ankle, on top of regular visits to physiotherapy. Can anyone recommend who I need to get a referral to so I can learn how to manage this better, how to recognise flare ups, who to speak to if I'm at my wits end. Since may I've had 2 big flare ups and I really thought I might have to go to a&e, but working in healthcare I know that's not helpful for anyone. I've never been diagnosed with EDS but have a lot of the symptoms too. Rheumatology told me today I'm not for them but to reach out here to see if there was someone who could help. Should I be talking to immunology? Or is there really no one?

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  • helpline_team
    helpline_team Posts: 3,202

    Thank you for your message, @cslo90 We're so sorry to hear that you haven’t received support from rheumatology and that you’ve been experiencing flares.

    We’re a helpline here to listen and support you, but please note we’re not medically trained. If you suspect you may have HSD, EDS, or another condition, your doctor is the best person to provide a clear diagnosis. They will review your symptoms and family history, and can refer you to a physiotherapist or occupational therapist if that hasn’t already been done. Immunology referrals are more specific to immune-related concerns, not hypermobility itself. But if your symptoms suggest an immune or allergic component, your GP or specialist may consider it.
    In the meantime, you’ll find a link below with guidance on managing symptoms while you wait.
    Managing hypermobility often involves a combination of approaches—such as hydrotherapy, tailored exercise, emotional support, and complementary therapies. It’s about finding the self-management strategies that work best for you.

    https://www.versusarthritis.org/about-arthritis/conditions/joint-hypermobility/


    Best wishes
    Sarah, Helpline Advisor

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