Complex regional Pain Syndrome — Scope | Disability forum
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Complex regional Pain Syndrome

Jacky67
Jacky67 Member Posts: 4 Listener
I am interested in chatting with people with Complex regional Pain Syndrome. Life has changed completely for me after distal radius break and I am finding it s hard to accept this is my life now.It has spread over two years to my legs head ears and I am now shocked to find after a recent angiograph that my central vision is going.Its grim..its christmas..and i cant even wrap my presents today..I am typical of sufferers..history of Fibro Myalgia .Hypothyroidism..TMJ...I am a 67 year old female...Hope everyone is coping and we can have at least alittle bit of Merry this Christmas...Jacky
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Comments

  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
    Hi @Jacky67

    ”Welcome”

    Its great to meet you this morning.

    Yes I do believe that I have got “CRPS”

    I have made the diagnosis myself as no professional will except it to date.

    As for treatment “It has been a Joke” too date.

    The “NHS” one minute wants to do something to help me & the next minute they won’t “Fund the Treatment “

    How are things with yourself ???

    “Merry Xmas”
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,673 Disability Gamechanger
    Hi @Jacky67

    Welcome to the community, you might like to look through the dealing with chronic pain category.
    Scope
    Senior online community officer
  • Jacky67
    Jacky67 Member Posts: 4 Listener
    Thank you both so much..I am checking it out now
  • Jacky67
    Jacky67 Member Posts: 4 Listener
    Hi Steve51..I was extremely lucky to have a consultant that had even heard of it..its so hard as they really are still learning about it here..I often refer to american sites ..they seem more on the case to be honest.I guess hearing the words..There isnt much we can do..is disheartening..and for some of us there isnt..I cant take Gapapentin..I am curious as to why you think you have it..have you had a trauma injusry ?..my sympathies to you..its vile..j
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Oddly I had never heard of CRPS until recently becoming friends with someone through Outsiders. She too suffers from it and I found it quite difficult to understand how such a debilitating problem started as a simple broken bone inflicted during a bad accident. Unfortunately it isn't my place to give you any details as she isn't on here as far as I know.

    I hope you have luck finding others to talk it over with.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Jacky67
    Jacky67 Member Posts: 4 Listener
    @Topkitten Thank you..it is very rare..a blip in autonomic nervous system and temporal lobe function...my brain still thinks my arm and hand are broken..its mad j
  • mossycow
    mossycow Member Posts: 485 Pioneering
    Hi guys, I think I have complex regional pain syndrome..... It's been suggested by a rather awesome lady who was the first to look at ALL my body. And not just in bits. 

    I am affected only from the waist up it's seems so it seems to be only one part of my nervous system. 

    Pain started at 12/13 in my hands and wrists.... Made school a bit tricky as handwriting was effected. At university I got some help and had help buying a laptop which completely saved me and my grades. I passed my 'fit to teach' medical and off I went into my chosen profession as music teacher in school... 

    But after pain start in my neck, then power back I'm a bit more 'unable' and really  began to feel 'disabled' when I started having to use a wheelchair and giving up work. 

    Anyway, sorry. Just been thinking about it 's lot at Xmas. It used to be my most mad busy time.... This year... Well, I've done next to nothing. I have 1 piano pupil left but in terms of concerts, carols, Kids = nothing. 

    But am grateful as been much less ill this winter so have put energy into being Mum and saving us money by making and cooking things. 

    The pain syndrome is just so weird isn't it. I feel like my body is totally unpredictable. 

    Does anyone else have ultra sensitive skin with it? It seems I feel touch, warmth and stuff differently too. 
  • OddJoShoe
    OddJoShoe Member Posts: 8 Courageous
    Hi, I just wanted to let you know that I've got CRPS (as well as Alloydnia and Dystonia). 

    Don't let anyone tell you that you are making it up. It is not psychological .. the pain is definitely real! 

    I've had it for over 17 years but it took them 10 years to diagnose me. I have got progressively worse in that time and I'm now at the stage where I'm going to be having my leg amputated shortly. 
  • AStoneham
    AStoneham Member Posts: 7 Connected
    Hi all,

    I'm new to Scope and i have CRPS, had it for 10yrs now because of originally herniating a disc at L4/5. Since original diagnosis the nerve pain has gone from my left lower back to left foot to gradually affecting my whole left side from head to toes. It causes weird sensations like pins & needles, hot/cold sensations, don't feel like i have normal feeling down that side anymore. I could go on.....
  • ClaireSaul
    ClaireSaul Member Posts: 92 Pioneering
    Hi everyone & welcome @AStoneham Aileen! We already know each other......

    I do wonder if too few doctors really understand what CRPS is?  Is this the reason it takes so long for a diagnosis for someone like @OddJoShoe?  Does anyone think about the fact that being in pain for all those years with no diagnosis and a feeling that you are being dismissed will inevitably cause psychological problems?  

    The nature of the syndrome, being autoimmune and affecting the autonomic nervous system, is unpredictable and different in everyone.

    I am so sorry @OddJoShoe that you are having to resort to amputation, but I do hope that this will help give you some relief.

    Best wishes, Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • AStoneham
    AStoneham Member Posts: 7 Connected
    Hi ClaireSaul, yes we sure do know each other. Hope you are well asyou can be. I've joined scope because I'm finding the psychological problems difficult at the moment and thought reaching out to others will help. 

    Your right the nature of the syndrome that makes us unique in being diagnosed unfortunately  ?
  • ClaireSaul
    ClaireSaul Member Posts: 92 Pioneering
    This is a good, supportive community Aileen,  @AStoneham - I have been poor at taking part in chats recently with the gut issues & repeat investigations, and then straight into a massive pain flare in the heat - it has affected my back/leg pain and all my EDS pain and POTS.  So not been great with the Chronic Pain advisor role!  
    You have had such a rough couple of years for so many reasons - def here to support you! x
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • chrisvanf
    chrisvanf Member Posts: 63 Courageous
    Hi
    I have CRPS Type 2.
    While I can have chats about CRaPSy and it's infinite ways to mess up your life could I suggest a specialist site that would help.
    I find Scope one of the best sites around and a fantastic site for info and general knowledge and the people on here really do know their stuff, 
    But,
    If I am allowed to say,
    Due to the complex issues and rarity of CRPS could I suggest also looking at CRPS UK Living with chronic pain, on there you will find fantastic support and information for CRPS as it deals specifically with CRPS .
    I am a member and find it a great place to talk about the problems of living with and dealing with CRaPSy on a day to day basis.
    Edited, re-edited, bits added, bits taken out spellchecked then edited again, 
  • AStoneham
    AStoneham Member Posts: 7 Connected
    Hi chrisvanf, i have recently come across CRPS UK  on Facebook up until now i have been using America, where it is more common! A lot of information posted about CRPS both types. It's good to know your not the only one, when it's such a rare ailment to have ?
  • chrisvanf
    chrisvanf Member Posts: 63 Courageous
    Hi AStoneham. It was a relief to chat to people who understood what it is like to have CRaPSy. , 
    The US sites are ok but I find the UK sites better for info about what's happening UK wise
    Edited, re-edited, bits added, bits taken out spellchecked then edited again, 
  • OddJoShoe
    OddJoShoe Member Posts: 8 Courageous
    Hi @AStoneham @chrisvanf i have spent a lot of time on different facebook groups about CRPS but in the end i found that they just dragged me down. I couldn't cope with hearing how bad everyones day was and who had had the least sleep and was in the most pain. I'd rather try and find something positive. 
  • chrisvanf
    chrisvanf Member Posts: 63 Courageous
    @OddJoShoe I totally agree with you on that some people on crps sites can be a little bit down trodden and whoa is me but I have also met people who exist in a world of pain but always seem to look on the bright side of things
    Everyone see's grey clouds, not many see the silver lining.
    TBH I'd like to find a site that looks on the brighter side of Chronic Pain 
    Have a lpd     
    Edited, re-edited, bits added, bits taken out spellchecked then edited again, 
  • hengster
    hengster Member Posts: 14 Connected
    Hello all,

    i am so glad to have come across a discussion about CRPS. I have been recently diagnosed with it. I'd like to know if anyone has received pain management services and therapy from either the Walton Centre and at the Royal National Hosptial for Rheumatic Diseases for CRPS, and what their experience of services and therapy has been like? I am based in London, and am willing to travel to get specialist help for CRPS. The CRPS has come about from having got medial tibial stress syndrome in my left lower leg earlier this year. Following physio exerices, things did not go well and then i was diagnosed with CRPS. This has spread to my lower back and my left shoulder and arm. I am now left without help on how to manage the pain and what therapy i should next do, as the wait to see the pain management specialists is around 2 months in london. I have also been discharged by the muskolotol physiotherapy team in london. I have started hydroptherapy myself just by walking up and down the pool this week. But i am unsure of what to watch out for and what i should not do. I have been told to stop taking ibroprufen since Oct 2019. After reading around online i have put myself on an anti-inflammatory diet as of 2 weeks ago to see if this would help. I also use Holland & Barratt's Extra Muscle Balm CBD and tub this on the afflicted areas, it seems to help alittle. Also, I'd like to know if anyone taken Magnesium supplements and what type of magnesium to help with CRPS?

    thanks

    Rachel
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Welcome to the community @hengster! @hdeakin has previously mentioned the Walton Centre so I hope she will be able to offer some more information. :)
    Scope

  • hengster
    hengster Member Posts: 14 Connected
    Thank you for the direction @Chloe_Scope !

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