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Complex regional Pain Syndrome

Jacky67Jacky67 Posts: 4Member Listener
edited December 2017 in Dealing with chronic pain
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

Replies

  • steve51steve51 Posts: 5,865Community champion 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_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Hi @Jacky67

    Welcome to the community, you might like to look through the dealing with chronic pain category.
    Scope
    Senior online community officer
  • Jacky67Jacky67 Posts: 4Member Listener
    Thank you both so much..I am checking it out now
  • Jacky67Jacky67 Posts: 4Member 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
  • TopkittenTopkitten Posts: 1,003Member 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.
  • Jacky67Jacky67 Posts: 4Member 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
  • mossycowmossycow Posts: 486Community champion 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. 

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • OddJoShoeOddJoShoe Posts: 7Member Connected
    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. 
  • AStonehamAStoneham Posts: 7Member 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.....
  • ClaireSaulClaireSaul Posts: 82Volunteer community adviser 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
  • AStonehamAStoneham Posts: 7Member 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  😤
  • ClaireSaulClaireSaul Posts: 82Volunteer community adviser 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
  • chrisvanfchrisvanf Posts: 59Member 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, 
  • AStonehamAStoneham Posts: 7Member 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 😩
  • chrisvanfchrisvanf Posts: 59Member 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, 
  • OddJoShoeOddJoShoe Posts: 7Member Connected
    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. 
  • chrisvanfchrisvanf Posts: 59Member 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, 
  • hengsterhengster Posts: 10Member Listener
    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_ScopeChloe_Scope Posts: 5,837Administrator Scope community team
    Welcome to the community @hengster! @hdeakin has previously mentioned the Walton Centre so I hope she will be able to offer some more information. :)
    Chloe
    Online Community Officer
  • hengsterhengster Posts: 10Member Listener
    Thank you for the direction @Chloe_Scope !

  • atlas46atlas46 Posts: 827Community champion Pioneering
    Hi @hengster

    A very warm welcome.

    I attended the Walton Centre about 12 years ago, for the four week pain management programme.

    I cannot speak to highly about this programme, if you can get a referral for the course, grab it with both hands.

    I note you live in London, so it might be better trying the Royal National, which is based in Bath.

    I would give Them a ring, there is a telephone number for the Pain Management 01225 473427, ask if you could speak to one their Clinical Psychologist’s.

    They will be happy to speak with and explain how they could assist you.

    Please Let us know if we can be of any further assistance.

    PS
    sorry about typos, iPad playing up!
  • hengsterhengster Posts: 10Member Listener
    Hi @atlas46
     thank you for the welcome and advice, that's been very helpful. May I ask what the Walton Centre's pain management programme involved for you? And was advice provided on how to manage and maintain CPRS after you left?
    Were you being treated for CRPS?

    I did call the Royal National but spoke to someone on a different telephone no to the one you quoted, and will hear back more info next week.

    thanks!

    Rachel
  • atlas46atlas46 Posts: 827Community champion Pioneering
    Hi @hengster

    No I do not have CRPS.

    The Walton programme is a generic course, for those patients suffering chronic and poorly controlled pain.

    You have a planned day across a whole range of rehabilitation.

    You have group discussions, with specialist in pain management.

    There is a great deal of effort, to increase your health and well being

    There is good discussion and sharing of insights, between course members.

    You could have a look at the Walton, home page for more details.

    Keep us informed.

    Best wishes
  • hdeakinhdeakin Posts: 74Member Pioneering
    Welcome to the community @hengster! @hdeakin has previously mentioned the Walton Centre so I hope she will be able to offer some more information. :)
    Hi @hengster  welcome to the forum 😊 I am sorry to hear that you have been diagnosed with CRPS. I have CRPS and now many secondary complications(dystonia, FND, hypermobility syndrome/EDS, osteoporosis, spiral fracture of neck of femur, resulting in 2 lots of major surgery and plated femur and deformed hip, the beginning of arthritis. My CRPS is improved alot although still a problem however I have a lot of problem with the secondary complications. CRPS is a horrible and extremely painful condition. I am near London too. I have not been to the Walton hospital however I have had an assessment at Bath but was too poorly back then. There is a good consultant who used to work at Bath who now works at Royal national orthopaedic hospital- Stanmore called Dr Helen Cohen who specialises in CRPS and EDS. Stanmore also run a 3 week pain management course specifically for CRPS. I have been there for rehab but not on that program. I have just been an inpatient at Queen Mary's hospital Roehampton. In the wolfson unit for 3 months, I don't know whether I just ticked the box there due to the FND but it maybe worth enquiring, it is a good place. If it is any support I have written about the wolfson unit on my blog hannahdeakin.blogspot.com Water therapy is definitely worth continuing as it is also good for desensitisation. If you can cope with it I know it is hard. My advice would be to try and keep moving and pace as much as possible! I hope this is a little helpful 😊
  • OddJoShoeOddJoShoe Posts: 7Member Connected
    My neurologist is Professor Mark Edwards at St Georges, he works with a lot of dystonia patients. I also have dystonia as well as CRPS and this time last year had RBK amputation because of the dystonia. Anyway Mark works alongside the team at Stanmore RNOH so I am hoping that I can get a referral to the pain team over there as my pain consultant has had to leave due to illness. 
  • hdeakinhdeakin Posts: 74Member Pioneering
    I am also under proff mark Edwards at St George's. He is lovely. I was referred to Mark from Stanmore RNOH. Good luck @OddJoShoe
  • OddJoShoeOddJoShoe Posts: 7Member Connected
    I used to be under Mark Edwards when he was at Queen Sq but because he was so nice I followed him to St Georges. 
    Is Mark a pain consultant? Is he good? 
  • hdeakinhdeakin Posts: 74Member Pioneering
    I was under him at Queens Square and followed him to St George's too! Sorry I meant Mark Edwards-Stanmore RNOH referred me to him because of my spasms/functional neurological disorder (FND). FND only really affects me in the way of spasms. Prof Edwards said he sees a lot of people with CRPS that also get spasms/FND. 
  • OddJoShoeOddJoShoe Posts: 7Member Connected
    Oh I see. I also get spasms because of my CRPS... not a lot helps them, I just have to ride the storm until they are over!  
  • hengsterhengster Posts: 10Member Listener
    edited November 9
    Thanks both @hdeakin and @OddJoShoe. May I ask & to anyone else here,when you were referred fir the first time to pain management or a pain clinic was a mri scan required by the pain management specialists of your afflicted area? Or did they already have mri scans done by another dept specialist to use?

    Also, has anyone with CRPS  had EMG and NCS neurophysiological testing done ? If so is it really painful ? And is it really necessary to do in order for the specialists to help diagnose and treat?
  • hengsterhengster Posts: 10Member Listener
    Hello @mossycow, I read your previous post back in 2017. How are you doing now? 
  • OddJoShoeOddJoShoe Posts: 7Member Connected
    I have had EMGs done on more than one occasion can't remember NCS though. I don't remember them being exceptionally painful but I'm going back years now. 
  • Chloe_ScopeChloe_Scope Posts: 5,837Administrator Scope community team
    Hi @hengster, how are you doing today?

    Thank you for this @OddJoShoe. :)
    Chloe
    Online Community Officer
  • hengsterhengster Posts: 10Member Listener
    edited November 14
    Hello @Chloe_Scope, not too bad today thank you. I went for my third self-hydrotherapy session on tuesday and it was better than the last two. I was able to walk alittle better than before in the water. I've also read about pacing in order to prevent flare ups. Had the EMG test done yesterday and it wasnt as bad as i thought it would be! @OddJoShoe, sorry i didnt realise until before my neurophysiological tests that NCS was carried out as a part of my EMG test. NCS is nerve conduction studies. I had MRI scans done as well. So hoping to find out some results soon from a neurological point of view. How is everyone else on this discussion doing?





  • hengsterhengster Posts: 10Member Listener
    Hi again, i'm assuming everyone who's got CRPS, had had to go to their local hospital pain services team first, is that right? I'm waiting for my referral for pain services. But i'd like to know what kind of things are involved and what various types of professionals get involved to help and how they help with someone with CRPS? Thanks!
  • hdeakinhdeakin Posts: 74Member Pioneering
    Hi @hengster I was diagnosed as a child and the local pain team would not see me as I was under 18. From friends I have heard there is things like nerve blocks and other drugs alongside education about pain and methods of trying to manage pain including learning to pace, relaxation, mindfulness as well as support from psychologists and sometimes physiotherapists.
    I am glad the hydrotherapy is going well and the tests were not as bad as you thought. Best wishes, 
    Hannah 
  • Chloe_ScopeChloe_Scope Posts: 5,837Administrator Scope community team
    Hi @hengster, really glad to hear hydrotherapy has been beneficial, how are you doing today? :)
    Chloe
    Online Community Officer
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