Hi, my name is Maybon27! — Scope | Disability forum
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Hi, my name is Maybon27!

Maybon27
Maybon27 Member Posts: 1 Listener
Hi, I'm struggling with fibromyalgia and hypermobility, the latter making my joints destabilise rapidly this past couple of months. I'm also a uni student about to go back to a course which involves going on placement and this all makes me kinda nervous. 
Just joined, hoping to find other people going through similar stuff so I don't feel so alone. 

Comments

  • janer1967
    janer1967 Member Posts: 16,509 Disability Gamechanger
    Hi and welcome to the community Feel free to join in or ask any questions 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @Maybon27 - & welcome to this friendly & supportive community. I have the hypermobile type of Ehlers-Danlos Syndrome, so understand about unstable joints.....not much fun, & you're certainly not alone, as there are quite a few of us with hypermobility issues. What are you studying at Uni? :)
  • xenia
    xenia Member Posts: 5 Listener
    Hi , I have a 4 Yr old with hypermobility and other issues I just wanted some advice how to help manage this and his pain. Also  any advice how to get a sen in school for him. Tia
  • poppy123456
    poppy123456 Member Posts: 31,407 Disability Gamechanger
    xenia said:
    Hi , I have a 4 Yr old with hypermobility and other issues I just wanted some advice how to help manage this and his pain. Also  any advice how to get a sen in school for him. Tia

    Hi,

    I'm afraid we are unable to give any medical advice regarding your childs pain and for this you should speak to their GP. For your other question i've answered that on your other thread. https://forum.scope.org.uk/discussion/83741/hi-my-name-is-xenia#latest

  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @xenia - & welcome to the community. Have you looked at the Ehlers-Danlos support website? Personally I have the hypermobile type of this, but the website is also for those with Hypermobilty Spectrum Disorder, so for many with hypermobility disorders. Please see: https://www.ehlers-danlos.org/
    You mention your child also has other issues, these possibly related to their hypermobility, but perhaps not. Just in case giving you a link to the GP's toolkit about Ehlers-Danlos Syndrome, & related disorders, as these can affect many systems of the body. Please see: https://www.rcgp.org.uk/eds
    Hoping looking through these links may help you have a better discussion with your GP about your child.
  • xenia
    xenia Member Posts: 5 Listener
    Hi @chiarieds , thankyou for this advice I will have a look at the links that you have given me. I will let you know hoe we get on .
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 3,113 Pioneering
    edited September 2021
    Hi @Maybon27

    Welcome to Scope's forum. It is great to see that you have joined us here at Scope. I also have fibromyalgia so I can understand how difficult this must be for you but well done for making the first step in reaching out to us for support. You mention that you are nervous about going on placement as part of your university course. I am wondering if you have heard about Disabled Students Allowance (DSA)? It is a type of needs-based support that covers costs you may have as a result of studying with fibromyalgia and hypermobility and you do not have to pay it back (https://www.gov.uk/disabled-students-allowance-dsa). Thanks @janer1967 @chiarieds @xenia and @poppy123456 for being welcoming and supportive to each other in this discussion  :) 
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her.

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