Me Too


yes I do I seem to be the only one iwth this phenomon until now you have joint hyermobility not elasticted joints, I ws called a realife plastic man by a consultant once! back to the pain yes I have itto starts in the knee like somone is twisting a srewdriver trogh my joints it radiates down my led like an awake dull ache unbearable I get numbsness and loss of use of leg temporarily it helps if im mobile but only for a while or I get it standing to its a nightmare.

Nice to meet you I am from Belfast,


5 Replies

  • Me too: mine is mainly Ehlers Danlos type hypermobility, eg with paroxysmal haematomas, and internal tissues + organs involved. Do you visit this wonderful UK hypermobility assoc (HMSA) website:

    It has a good online forum, and great archives of info

  • I didn't know it even exist or three where different forms my GP just says it's fibromyalgia but I know it's not and x rays are clear I can't understand it it stunning what little life I had left.

    Cam a consultant diagnose it?.

    Thanks for the link


  • Yes indeed: a good rheumatologist can diagnose basic hypermobility, as can a good osteopath or chiropractor, but for a more refined diagnosis, you can get referral to UK hospitals where the rheumatology dept specialises in hypermobility syndromes. The HMSA link I posted in my first reply gives lists of these hospitals...if you have trouble finding these lists, I suggest you contact the HMSA (the Hypermobility Syndromes Association) for assistance. Diagnosis at a specialist centre can help your own lupus rheumatologist a lot in constructing the best lupus treatment plan

  • Hi again,

    It can be difficult to get people to understand Ehlers Danlos hypermobilty doesn't mean "hey,that's great ,so you're really flexible then?," it means its not just your joints,its organs,bowels,tissues etc and is paiinnnffull! With understanding it helps and the hypermobilty site is full of good stuff.

    Take care


  • 3 weekes ago i saw a new rheumy who suggested i have hypermobility that my knee may need a firm strape just incase surgery is not used. I feel very sore in all my joints. Still trying to understand what is happening to my body.

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