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Hypermobility

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Blue Frog
Blue Frog Community member Posts: 358 Pioneering
Hi, does anyone have hypermobile joints, or experience of looking after someone who has this condition? I've not managed to find a lot of info on the internet about it - Thanks

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  • Debbie_Alumni
    Debbie_Alumni Community member Posts: 932 Pioneering
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    Hi Blue Frog,

    I'm not sure if you're already aware of this but there is information about Joint Hypermobility on the NHS Choices website and you can link to other organisations specialising in this condition from there http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Introduction.aspx
    I hope this is helpful.

    Kind regards
    Debbie
  • purpleape
    purpleape Community member Posts: 4 Listener
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    I have Hypermobility Syndrome. The Hypermobility Syndromes Association (HMSA) has been quite beneficial in helping me so far, after a real diagnosis in January!
  • Blue Frog
    Blue Frog Community member Posts: 358 Pioneering
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    Thanks purpleape, do you have any pain at all? My little girl is currently sat next to me with her feet above her head, and I am worrying she might do herself some sort of mischief!!!
  • purpleape
    purpleape Community member Posts: 4 Listener
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    I have a lot of pain constantly! When I was younger though I didn't have so much and mum always used to tell me I shouldn't do things like putting my feet on my head but I didn't see any reason not to! The only issue is whether it stretches the muscles so makes later subluxations/ dislocations become more likely. Maybe if you try to tell her this? But it also depends whether it is simply 'hypermobile joints' (basically asymptomatic) or 'Hypermobility Syndrome' (more problems). Hope this was somewhat useful!
    Purpleape
  • LucysLight
    LucysLight Community member Posts: 5 Listener
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    I have Ehlers-Danlos Syndrome, a more severe, genetic condition with hypermobility being one of the most prominent symptoms. In my case it is life-limiting/life-threatening. I also have multiple organ failure, osteoporosis, autonomic neuropathy, severe spinal curvature and my spine is crumbling and more. Just look out for any new symptoms, get them checked out and if you feel it would be beneficial and can afford to I'd go and see Professor Grahame at St John and St Elizabeth as he can advise on how best to manage your daughter's condition. I am extremely hypermobile (9/9 on the beighton score - a score of the degree of hypermobility) and my joints dislocate numerous times per day - shoulders can come out just rolling over in bed, my wrists and ankles slip out for no reason, as do my shoulders, hips and elbows mind you, and my kneecaps come out, including recently my dog jumped off my lap and pushed my kneecap up above my knee up towards my thigh.
    The best thing that can be done is physiotherapy exercises, staying active but non-contact sports, adequate, non-opioid (i.e. not morphine) pain relief, heat or cold depending on what helps best, and splints/braces if absolutely necessary, however these can weaken joints and allow muscle wastage so should not be used as a first-line treatment as they can do more harm than good if used too much/at the wrong time and/or in the wrong way.
    Let me know if there's anything else I can do to help.
    Lucy x
  • LucysLight
    LucysLight Community member Posts: 5 Listener
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    Oh and try not to let your daughter show off her tricks or extend her joints past normal range, as this can cause more problems. I know how hard it is though, especially when our hypermobile positions are comfortable for us!
  • Blue Frog
    Blue Frog Community member Posts: 358 Pioneering
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    Thanks so much Lucy that's brilliant info and advice. She is having lots of genetic tests so I will ask about Ehlers-Danlos x
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