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Ehlers-Danlos Syndrome

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StephanieMaria
StephanieMaria Community member Posts: 11 Listener
edited September 2017 in Disability rights and campaigning
My life has changed an awful lot recently and i was told for a long time that many of my symptoms were because I was depressed and overweight.  I decided to start researching my symptoms and demanded to see a rheumatologist, who referred me to see a specialist who finally diagnosed Ehlers-Danlos Syndrome, I already had Disc bulge in my lumbar spine, Labral tear on my right hip with impingement which I'm now unable to have surgery on becaus I'm too high risk with having EDS.  I sustained a rotator cuff injury to my left shoulder from falling
downstairs, making it difficult to use my crutches as often as I'd like. My mobility has deteriorated a lot over the last few years and the big changes are hard to get used to, as is asking for help. 

Anyway, I look forward to chatting to you all.

Stephanie :) 
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  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
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    Hello Stephanie and welcome

    Thanks for sharing a little about yourself, you are having a tough time.

    We are here to listen when needed, help when we can and support all the time.

    Please, if we can help in any way just ask.

    CR
    Be all you can be, make  every day count. Namaste
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  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
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    Hi.

    Welcome on board our online community.

    Don't worry about asking for "HELP" that's what we are hear for.

    Please let me know if I can help you in anyway.

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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
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    Hi @StephanieMaria welcome to the community, we have a few posts about EDS including this guest post you might like to read.
    Scope
    Senior online community officer
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  • timoglock
    timoglock Community member Posts: 23 Courageous
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    Hi @StephanieMaria,  totally understand.  Isn’t it annoying when we are told to keep fit, in some cases lose weight, sometimes to put on weight, yet can’t move as we injure ourselves if we do? However, the injuries will improve if you can get EDS aware physio, hydrotherapy if available.  People do have surgery with EDS but it depends what type.  Rotator  cuff can get better but takes time and needs consistent resistant exercises. You don’t have to walk to do core and shoulder exercises- I think they called concentric exercises. Are you in a local support group in your area?
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  • StephanieMaria
    StephanieMaria Community member Posts: 11 Listener
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    I'm part of the community pain team @timoglock and I see their specialist physio, occupational therapist and psychologist, also try and go to their support groups too, but can prove difficult when I'm having anxious days. 
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  • timoglock
    timoglock Community member Posts: 23 Courageous
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    Hi, actually sounds like a really good support pain team.  We do not have them in our area.  Can I suggest you contact EDS UK SUPPORT, the charity, as they have support online groups in your area so if you don't want to or can't physically meetup to get advice then you can chat online?
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