Physical impairments and mobility issues
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Hypermobility Spectrum Disorder, daughter, aged 13

Hi, my daughter was diagnosed with joint hypermobility syndrome at four days old. Since 2015, her symptoms have manifested significantly, the main one being at present chronic pain all over her body. She is seeing an NHS paediatrician and has had a number of tests. She is also seeing a osteopath who trained with Dr Alan Hakim, consultant in rheumatology. We are members of HMSA and I have recently ordered Claire Smith's book, Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder. I would hugely appreciate if anyone has any further advice in how they manage on a day to day basis. 

Replies

  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Jon_Barker

    Good Afternoon & Welcome it’s great to meet you today.

    I am one of the Community Champion’s here at Scope.

    We have got a senior member who will hopefully be able to offer you some help/advice.

    I will forward your post onto them for there take on things for you???

     Hi @Adrian_Scope

    Can you please offer me some help/advice with this post.

    Many thanks.

    @steve51




  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Jon_Barker and a very warm welcome to the community! Thank you for sharing this with us. I have hyper-mobility in my hands (although I also do have CP which counteracts it slightly). For me, I have also found it hard to write with a pen due to the pressure this would put my joints under.

    Has your daughter been seen by an occupational therapist? I had one when I was about her age and they were able to implement support at school and also equipment which made things easier.
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  • chiariedschiarieds Member Posts: 7,915 Disability Gamechanger
    Hi @Jon_Barker - Welcome to the community from me too. I have the hypermobile type of Ehlers-Danlos Syndrome, & I'm also a physiotherapist, tho I qualified a long time ago. Have you considered joining the Ehlers-Danlos Syndrome Support group? See: https://www.ehlers-danlos.org/ You would be most welcome, & you might find it helpful, as there is also information on the hypermobility spectrum disorders (previously called Joint Hypermobility Syndrome) there; coincidentally Dr. Hakim is one of the Medical Advisors.
    Has your daughter had any physio? There's some info here: https://www.ehlers-danlos.org/information/physical-therapy-for-hypermobility/
    My mainstays are above all correct posture, & exercise (of the right muscles), heat for pain (tho some do better with ice) & distraction. When possible, I'm sure hydrotherapy would also help.
    I also have a silver ring splint which holds my problematic thumb in the right place. I bought this from a lady that has EDS herself (she also takes orders through the NHS). If you're interested, please let me know. If your daughter has problems with any finger or thumb joints, they're so much nicer, & more comfortable than some traditional splinting. Mine has even been admired by people thinking it was a piece of jewellery. With my best wishes to you & your daughter.  :):smile:


  • Jon_BarkerJon_Barker Member Posts: 2 Listener
    Hi all, many thanks for welcoming me to the community & your kind comments. @Chloe_Scope thank you for your comments. We bought my daughter some pens to help with her writing, during lockdown she has been using a laptop. Occupational therapy have been very helpful, installing a bannister and shower rail, they follow up with us on an annual basis. @chiarieds thank you for the links. Interesting that you are a physiotherapist. We have recently found someone locally who provides therapy and has hypermobility. It makes such a difference when you have someone who understands the issues. Both ice & heat do not seem to have any effect. Hydrotherapy is on the list once pools can get back into action. The chronic pain seems to have flared up in the last two weeks, unfortunately a pain clinic informed me on Friday that it will be at least six months before she is seen due to COVID-19. 
  • chiariedschiarieds Member Posts: 7,915 Disability Gamechanger
    edited June 2020
    Hi @ Jon_Barker, thank you for your reply. It's great to read that you've found a therapist that will truly relate & have a lot of understanding; not great that they have hypermobility issues, however.
    There's some thought that you have pain, which leads to possible de-conditioning, which results in more pain, & is therefore a vicious cycle in those with hypermobility. This from a lecture Dr. Hakim gave in 2019 that I've just been watching. It's certainly difficult to manage, & it's unfortunate in your daughter's case that, due to Covid-19, it may take some time for her to be seen in a pain clinic.
    I do feel for her. My problems started at a similar age, but I became a physio & had a family. All things are possible if a way can be found to manage her pain.
    Please keep in touch & let us know how you're both getting on, thank you. :)
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Jon_Barker, I'm really glad you have an occupational therapist that has been so helpful.

    Sorry your daughter has been in more pain. The Live Well With Pain website is a great resource and a website that I have personally found helpful.
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