Don't want to live any more with CRPS

Hi all well still here and I'm waiting to have some injections in to my elbow the gp said it may help with the movement because it's getting hard to move, doc also said no more operations so that means if I need a op on legs or right arm at any time they will not do it, but I said to him what if I broke my leg and I needed a op to put it right he just said they would just put me in plaster and hope for the best.

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Hi sorry you are having problems I remember you had an arm amputated so really hope the injection helps your elbow.it must be difficult enough manahing with one arm so hope you get more movement back in it, good luck

[sharelle]

Hi it sounds like you are having a bad time of it and as a fellow pain sufferer I am shocked at how many people have had horrendous times with doctors, etc. I have done a questionnaire whereby I hope to use the findings to improve things or at least highlight things. If you would like to complete it, please email me on [e-mail]

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So sorry to here your suffering I wish I had help for you ,I to was told no more ops! At anytime. All I can say is get as much help with pain control, try to love yourself and accept how the pain makes you feel both physically and mentally taking each moment as it comes,try finding distractions I find that helps at times but my heart goes out to you and other RSD sufferers, take care , trying to send you positive thoughts as this terrible pain is so hard to understandx

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Hi peacerose

Yes I try and think of things when the pain is really bad but some times when the phantom limb pain is worse than the CRPS I can not explain how I feel at time, the pain specallist can only do so much for me I have tried more or less most things he has done for me. I just wished I never had the carpool tunnel op done and that meant I would not have got the CRPS that lead me to have the amputation off my left arm.

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95% of the medical profession have never even heard of RSD?CRPS and even our specialists, according to one there are only 15 and I've seen or talked to 7 of them are 20 years behind the rest of the world. 1993 US states Guanethedine blocks are useless. 2012 UK declares Guanethedine blocks are useless.

Any operation according to Bath is virtually certain to cause a spread although some US doctors have known how to do it with no risk since 2000. This is the debate my MP got last year publications.parliament.uk/...

Norman Lamb has broken his word including use me as a guinea pig for a possible cure so we are now trying to form a big enough group of MP's to take action. Sufferers of Facebook and the Pain Support forum are arranging visits with their MPs if you want to do the same please message me