Cerebral Palsy
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kez19kez19 Member Posts: 8 Listener
hi I’ve been diagnosed with crps after breaking my wrist last January  the doc said most people only have it for a year but occasionally it lasts longer but my pain seems to be getting worse month by month , how will I no if this is going to be forever or if it will disappear ? Do I just wait and see how I go or ? 


  • Ghost4287Ghost4287 Member Posts: 13 Connected
    I have had it since 2010 and it just kept spreading over my body. My advice is to bug your doctors to help because you don't want to end up like me.
  • kez19kez19 Member Posts: 8 Listener
    I’m waiting an appointment at the pain specialist now after all tests etc being done taking months on end , what pain meds do you find work best ? 
  • Wondermum54Wondermum54 Member Posts: 12 Connected
    Hi Kez19

    I have answered you on your other discussion regarding CRPS.

    I agree with Ghost - you need to be proactive and push the doctors and quickly.  Do not take no for an answer.  You should have already been referred to the RNHRD in Bath - see the NHS NICE protocol for CRPS - but this doesn't seem to happen often - so you can download the info from the hospital website and take it into your GP and ask to be referred - do not take no or 'it's so far' etc as an excuse for non referral.  Yes, the journey is a pain, but worth it.  

    Sadly, there seems to be some  lack of info, or deniability about CRPS.  As in 'oh it will get better' etc.  I have yet to meet someone with CRPS that 'got better!'  Also the NHS quotes 7% of patients having a spread of CRPS, whereas some research from America says that it spreads in 70% of cases.  Hard to know who to believe! Orthopaedics seem to be the worst at denying it spreads...but my thermal imaging scan showed clearly my spread in exactly the places I said it had spread to.  I have since declined appointments with my original ankle surgeon as he is not longer treating me and has pushed me onto pain management etc.  I was originally told that pain management had a back log and that I would have to wait 7 months for an appointment which is not acceptable for CRPS as treatment needs to start as soon as to minimise spread, etc.  So do not be afraid to push the system and use PALS if you need to - it is what they are there for.

    Pain medicines wise....

    I started with ibuprofen, prednisone and nifedipine, and 4 x spinal blocks, and amitriptyline.  I currently take amitriptyline, tramadol, pregabalin and have just been given another medicine to help with stomach issues - my latest and new concern.  They are not sure if it is stress or CRPS spreading.....I am hoping it is just stress....However, sadly I have had very little success/relief from medicines, hence my spinal cord stimulator implant. 
  • kez19kez19 Member Posts: 8 Listener
    Thank u for your kind advice I will look into it all and go back to my gp with the information as my doctor at the fracture clinic basically said he’d refer me ti pain specialist as he knows nothing about it and gave me next to no info at all 😩x
  • Wondermum54Wondermum54 Member Posts: 12 Connected
    It is so bad how they basically tell us we have CRPS, and that there is no cure and then push us out the door....The doctors at Bath were not impressed as there are information sheets, etc that are supposed to be given to us as soon as we are diagnosed...but like you I was given no information by the Orthopaedic Dept.

    It shouldn't be up to the patient to research a condition and push for appointments.

    That is why I ended up pushing pain clinic to see me urgently, as I came home from the appointment with a diagnosis, did my own research and how the sooner treatment is started the better our outcomes.

    All the best and fingers crossed something works for you treatment wise and you get some stability.

  • kez19kez19 Member Posts: 8 Listener
    That’s the same for me basically told me I had it go home x it’s scary as the only things I know what I’ve read online and u have have told me more in ur few messages than the orthopaedic surgeon and my gp have said in the last 7 months it’s ridiculous and I will be going back to my go now I have more info and pushing fir this pain specialist app as I’ve been waiting nearly 4 weeks already and not heard anything back from the referral x 
  • Ghost4287Ghost4287 Member Posts: 13 Connected
    I have found that getting a referral can sometimes take up to a year, so I hope yours comes through soon.
  • fenfisherfenfisher Member Posts: 18 Connected
    It’s I’ve been under care of pain clinic for sometime now chronic pain lower spine  have injections which if I’m lucky reduce pain so less pills for good few weeks.
  • Ghost4287Ghost4287 Member Posts: 13 Connected
    hi @fenfisher I haven't had pain injections yet but I am on a few things for the pain and have been a test subject a few times to try and figure out what doesn't try to make me worse.
  • fenfisherfenfisher Member Posts: 18 Connected
    Trouble is side effects on some 
  • Ghost4287Ghost4287 Member Posts: 13 Connected
    Yes I have had side effects that nearly gave me a heart attack so I understand the problems, but at the time the doctors were trying to figure out what my body worked best with.
  • fenfisherfenfisher Member Posts: 18 Connected
    I try to use one pain killer one month then a different the next  month I have to be carefull as I have asthma as well and have to be carefull as hopefully in remission for C.
  • SpudsterSpudster Member Posts: 4 Listener
    Hi i was diagnosed  with crps in 2009 after breaking my wrist i now cannot open my hand because of the crps and classed as disabled  ive had all different types of meds and injections  one which left me in critical care as it went wrong,ive now got muscle  wasting on my left arm which i am trying to get to the bottom of this via phyio,to me its like crps so i do wonder if it  does mirror its self as i have no explanation  for the wasting in my arm and pain. 
  • Wondermum54Wondermum54 Member Posts: 12 Connected
    Hi Spudster - Sadly CRPS does spread and if you read the medical journals - it usually spreads on the same side of the body, which so far mine is/has done; i.e. mine started right ankle and foot, then spread up my leg, and now also affecting my liver and stomach - (lucky me...sigh). My spinal cord stimulator does seem to have slowed down the spread a bit, as well as providing a bit of pain relief. And I can have leads added to my system if it spreads to any new areas. However, CRPS can spread to the other side, so in a mirror type fashion whatever is happening to one of your wrists can happen to the other - and it can also spread diagonally, so right foot to left arm, (but this spread happens to fewer people). See article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3162139/ .  There are various theories as to why it happens - the most common theories being that 1. CRPS is a disease of the central and sympathetic nervous system, 2. the closeness of the nerves in the spinal column = spread, and 3. the changes in the nerve fibres in the affected CRPS limb causing a spread via a cascade type affect. Do see my replies to Kez 19 regarding advice on pushing and pushing re appointments, referrals etc.  I too  am classed as disabled and it sucks..I was really fortunate in getting a really fab physiotherapist at my local hospital and he is not adverse to looking into any research I have found and he was also given tips and hints treatment wise from Bath for me.  My ankle and foot are really limited flexibility. movement wise however, we have worked really hard and I can now put my heel down, so when I knew it was spreading up my leg I have been proactive at trying to keep my knee and hip moving as much as possible despite the pain, and stiffness as with CRPS you need to move despite the pain to minimise the loss of function. Mornings and getting out of bed are the worst, takes me ages to get sorted.  It is critical that you find a physiotherapist who either knows about CRPS, or who is prepared to research, learn and work with you.  

    I live in hope that the research teams will find an answer for us soon.  Take care.
  • SpudsterSpudster Member Posts: 4 Listener
    Thankyou for you comments really helpfull i am having severe pain in my ankle and heel at the moment but have not seen the physio yet till 22nd may appointments are hard to get these days so i will mention crps to him but its very hard to explain if they dont know what it is ,i once went in a ambulance when my mum had a fall on holiday and the paramedic said he was more concerned about my arm than my mum as he had never heard of crps he was intrigued ,my mum was fine by the way .
  • mikeymikemikeymike Member Posts: 40 Courageous

    hi only recently joined and I was told way back in 2003 that I had rsd as crps was known back then and I yet have had to find any getting better in fact back then I was told that unless it is diagnosed withing a few months its irreversible. my OT at the time who was a specialist in CRPS also said he could line up 100 of us with it and everyone of us would show different symptons I was on so many different pain meds back then at one point 32 tablets a day but to be honest nothing really helped with the pain to any real degree now all I take is pregab but if I have a very bad flare up I often end up in hospital and the only thing they have found is an infusion of ketamine and morphine not a nice mixture.  It still amazes me that very few GPs over here have even heard of it in Australia every one I saw knew about it the same in Canada. I have not been able to work since I was diagnosed as any kind of stress really pushes up my pain levels, and it took me such a long time to get disability benefits as no one had heard of it and when it spread to my left foot which left me unable to walk very far at all, so with the dwp and social services you have to keep pushing.

    now I have care in twice a day to help me shower get dressed etc.

  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,997

    Scope community team

    Glad you're getting some assistance now @mikeymike. Is your current GP more understanding of the condition?
    Senior Community Partner
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