CRPS

Hi all as u know I been to see the surgeon yesterday about my ankle they took some x-Rays they came back as ok then I went in and seen the surgeon he took one look at my ankle and told me that He will make a emergency appointment to go back to my pain specialist because I have CRPS in my ankle, he thinks it's coursed from the car crash I had last year. It did not see that coming I just don't know what to do any more. I had my left arm amputated because of the CRPS and I have it in my right arm and now I have it in my right ankle what's next I just cannot go on any more with this sorry to go on about it

[Hidden]

We all feel like that a lot of then time with this. I only left the house 8 times last year and 4 so far this. You have to find a reason it does help in coping. Mine is fighting for us all the diagnosed and un/misdiagnosed. If you want to join in you would be welcome

[crisso in reply to Hidden]

Hi

Good for you! Glad you are trying to do something for sufferers and get over and around the brick wall. If an influential politician could experience the pain and if they survived it you can bet your bum that something would be done to recognise and treat it. What counrty are you trying in and what have you been doing so far?

Cheers

[Hidden in reply to crisso]

I'm in the UK started 9 petitions worldwide. EU accepted mine carried out investigation and are now looking at the need for EU wide guidelines. Got debate in Westminster last year and have been asked to brief MP's and press in Janbuary is the short version

[Louisiana]

Try and hang in there yogibe.....wait till you get all the information together. Let us know how you get on....keep on this site and rant and rave as much as you want. Take care. Good luck

[Hidden]

HI

I too have crps I had my left leg amputated in may because of it

The worry about it jumping to another body part is always there, but I just take it one day at a time& try not to dwell on it.

I find getting tense and wound up doesn't help at all,after all there is nothing you can do to make it go away so try to stay calm

Hope you have more info when you see your pain specialist .

Fiona x

[Hidden in reply to Hidden]

Did they use Ice or Hot and cold water contrast therapy on your leg

[Hidden in reply to Hidden]

Hi kevscar no they did not

[Hidden in reply to Hidden]

no and I would n't have let them if they wanted too from my research that is one of the worst thing to do with CRPS/RSD

[Hidden in reply to Hidden]

That's correct but I have read of 2 UK sufferers who had to have amputations because of Ice use and I was refused amputation by a couple of professors and the specialist I was under.

[Chawner]

Oh wow what can I say.... Iam so sorry to hear about your latest CRPS, it really dosnt seem fare does it . I hope you have a really good pain specialist that can help you though this.

Do you have family support or kids!

I'm sorry that seems lame and stupid from me to say that sorry.

Well as you know we all care on this site so please rant and rave all you need to because there's always someone to talk to even if it's me who rambles on and dosnt make any sense .

Talk soon

[crisso]

It is upsetting to hear of anyone having an amputation because of this disease. I have studied this for many years now and although there are many conflicting opinions from "experts" regarding the best treatments one thing is sure, amputation is not the answer. Unfortunately no one really knows what the answer is. More research must be called for. Sufferers are currently isolated and unable to get together as a group to lobby the appropriate organisations and individuals needed to speed this up. Without that sufferers will remain out of sight and out of mind. Raising the profile is the only way to ensure funds are made available. When was the last time you saw hoards of runners in a marathon with CRPS or even Chronic pain on their T shirts?