Cerebral Palsy
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joint hypermobility

kelly2016kelly2016 Member Posts: 30 Listener
edited June 2016 in Cerebral Palsy
Hi I was wondering if someone could tell me how this becomes a syndrome.  
My child's been refered to GOSH hypermobility clinic as she has cronic pain and even after doing physio 7 days a week for a year this hasn't helped.  She has fractured her wrist and fingers from falling over. She injures herself easily.  She has always had pain in her legs and can't walk far but now is complaining if back and neck pain is this related to joint hypermobility?
Also what will happen at her appointment at GOSH hypermobility department can they diagnose her with joint hyper mobility syndrome and if so will this open services up for her to get extra help ? 

Replies

  • NikiiNikii Member Posts: 1
    By in no means am I am expert - but I thought I'd chime in as I was diagnosed with ME/CFS and Hypermobility Ehlers-Danlos Syndrome 2 years ago and know how complicated googling can get!

    So, generally, Hypermobility Syndromes and Hypermobility type Ehlers-Danlos Syndrome are used as interchangeable terms for a condition which causes joints to be more flexible than they should be, and is normally diagnosed by the Beighton and Brighton criteria to assess the joints. It then becomes a 'syndrome' when there are other symptoms such as easy brushing and sometimes GI symptoms. Muscle pain is extremely common, as it's thought that the muscles very work in order to compensate for the weakened connective tissue. More info can be found on EDS UK's website or The Hypermobility Syndromes websites.   

    Hope this helps a little!
  • discodevilxdiscodevilx Member Posts: 3
    kelly2016 said:
    Hi I was wondering if someone could tell me how this becomes a syndrome.  
    My child's been refered to GOSH hypermobility clinic as she has cronic pain and even after doing physio 7 days a week for a year this hasn't helped.  She has fractured her wrist and fingers from falling over. She injures herself easily.  She has always had pain in her legs and can't walk far but now is complaining if back and neck pain is this related to joint hypermobility?
    Also what will happen at her appointment at GOSH hypermobility department can they diagnose her with joint hyper mobility syndrome and if so will this open services up for her to get extra help ? 
    Hi Kelly

    i have EDS Type 3 (hypermobility type). Well done in getting your daughter seen and diagnosed early in life! Hypermobility is quite a complex condition which is not easily understood by many in the medical profession. It also has many different aspects to it and not exclusively joints as previously thought. I think it becomes a syndrome exactly as Nikki described. Neck problems and leg problems are common particularly as the neck can't support the head properly in some EDS HMS people . I'm hyper mobile all over including my neck and I get horrendous pain in it! I also suffer orthostatic hypotension which is common with HMS EDS. Mind, lots of people don't suffer orthostatic hypotension either. The best advice I can give is get an excellent physio and try to keep your child as fit as possible. Accupuncture is great for pain relief, massage and hydrotherapy. Obviously take advice but keep her as fit as she can be even if she only does a little exercise a day. Core strength is crucial so Pilates if possible, yoga generally hyperextends joints. Hope this helps 
  • discodevilxdiscodevilx Member Posts: 3
    Forgot to add back pain is common including scoliosis and lordosis 
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