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New member with Sitting Disability

ReikiSongReikiSong Posts: 5Member Listener
Hi everyone!

For nine months now I have been unable to sit without pain that starts at level 5 and gets worse the longer I sit.  The condition has stumped an array of Western and Eastern medical professionals.  Cortisone injections (four times).  MRI of lumbar area doesn't explain the pain.  I found an actual Wikipedia page on "Sitting Disability" which basically concludes many of us have it and no one knows how to treat it.  Fortunately, I work from home either at a standing desk or a lapdesk I have modified to allow me to type on my Mac Air while lying flat on my back.

I am hoping that here at SCOPE I might find not only support, but maybe some solutions (other than surgery, which has no assurances associated with it).  Pain relief, for the time being, is a 50/50 combo of THC and CBD, but that only takes an edge off and obviously doesn't address the core issues, whatever they are.

Replies

  • steve51steve51 Posts: 5,824Community champion Disability Gamechanger
    Hi @ReikiSong

    Good Evening & Welcome 😃😃

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

    Yes we have got another member who is in the same situation as you.

    I will forward your post onto them & I do hope that this is helpful????

    Hi @notebooksandglasses

    Can you please help me with this post????

    @steve51 ;


  • thespicemanthespiceman Posts: 4,804Community champion Disability Gamechanger
    Hello @ReikiSong   Pleased to meet you welcome.

    Thank you for joining and sharing.

    Sorry to hear about your medical condition.  You come to the right place for support and information.

    I am one of the team of community champions. We guide, advise and help new members who join the community.

    Please if we can help with anything . Please ask. Some one will know a member of our team or a member of our community.

    Please take care.

    @thespiceman
  • AilsAils Posts: 774Community champion Pioneering
    Hi @ReikiSong and welcome to the Community.  It is nice to meet you and thank you for sharing.  I am very sorry to hear about your Sitting Disability and the fact it causes you so much pain.  You have come to the right place for support so please let us know if we can be of any further help to  you.  All the best.  :smile:
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    Hi @ReikiSong and a very warm welcome to the community! 

    Thank you for taking the time to share this with us all. I hope the community will be able to provide support and guidance.

    You may find the disability equipment board interesting if you are looking for adaptions.

    Please do have a look around the community, get involved, and let me know if there is anything I can do to help!
    Chloe
    Online Community Officer
  • emmarenshawemmarenshaw Posts: 270Community champion Pioneering
    Hello @ReikiSong welcome to the community. I’m sorry to hear of your struggles with your sitting disability. The community is a lovely bunch so if you need any information or any assistance getting around the community just let us know and we’ll be happy to help.
  • ReikiSongReikiSong Posts: 5Member Listener
    Thank you all very much for welcoming me.
  • pollyanna1052pollyanna1052 Posts: 910Member Disability Gamechanger
    Hi, I`m a full time wheelchair user and can only get really comfortable when sitting in my recliner. I had an Occupational Therapist come out and assess me. She had a bespoke chair made for me.

    I realise you are still working, but maybe an OT could advise you. It would be very difficult to self assess for this problem.

    Best wishes x
  • ReikiSongReikiSong Posts: 5Member Listener
    Pollyanna, that's a very good/interesting idea.  And I have a friend, also, who I believe is an OT, I will ask her!!!
  • newbornnewborn Posts: 298Member Pioneering
    When you think of all the population, possibly during  their  lifetimes most will suffer  with Bad Backs, of some sort.
    That will  of course  include  some, some of the time, who need to keep a straight spine, to ease pain, so they stand, or perch on the edge of a table, or find some other makeshift.   Or, they are so desperate they just lie on the floor if all else  fails. 

    Most people  most of the time will be happy to sit down.  But the o.p. does point up the problem that even those with back troubles of their own cannot often comprehend any problem with leaving 'cripples' in a right angle seated position, even for hours on end.   
  • ReikiSongReikiSong Posts: 5Member Listener
  • croxiecroxie Posts: 4Member Listener
    I too cannot sit down. 30 mins is the most I can sit.  So no car journeys beyond that time limit, cinema, long lunches, etc you don’t realise how much not being able to sit affects your life, until you have a sitting issue. So I remain on my feet or lying down. The pain is still there but nothing compared to sitting. It’s like having a burning jagged rock sticking into you bum! Unfortunately other people just don’t get it. 
  • pollyanna1052pollyanna1052 Posts: 910Member Disability Gamechanger
    croxie said:
    I too cannot sit down. 30 mins is the most I can sit.  So no car journeys beyond that time limit, cinema, long lunches, etc you don’t realise how much not being able to sit affects your life, until you have a sitting issue. So I remain on my feet or lying down. The pain is still there but nothing compared to sitting. It’s like having a burning jagged rock sticking into you bum! Unfortunately other people just don’t get it. 
    oooh I know that feeling of sitting on jagged rocks.....hence my OT had my recliner made for me.
  • ReikiSongReikiSong Posts: 5Member Listener
    Croxie - EXACTLY!  Wish me luck, everyone, new doc today, expert on "Piriformis Syndrome."

  • pollyanna1052pollyanna1052 Posts: 910Member Disability Gamechanger
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