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Crps

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
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.
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.
I live in hope that the research teams will find an answer for us soon. Take care.
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.
Scope