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Crps

kez19kez19 Posts: 7Member 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 ? 

Replies

  • Ghost4287Ghost4287 Posts: 13Member Whisperer
    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 Posts: 7Member 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 Posts: 8Member Listener
    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 Posts: 7Member 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 Posts: 8Member Listener
    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 Posts: 7Member 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 Posts: 13Member Whisperer
    I have found that getting a referral can sometimes take up to a year, so I hope yours comes through soon.
  • fenfisherfenfisher Posts: 10Member Whisperer
    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 Posts: 13Member Whisperer
    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 Posts: 10Member Whisperer
    Trouble is side effects on some 
  • Ghost4287Ghost4287 Posts: 13Member Whisperer
    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 Posts: 10Member Whisperer
    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.
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