Oh Pebbles I'm so sorry you are having such a horrible time. It's awful when the 'system' that is meant to help you in times of crisis actually seems to be designed to make things even worse....

Hang on in there and keep fighting. Have you got anyone who can help you with this? They could help you fill out forms and send emails, and come with you to appointments - having someone else there seems to get better results than being alone, for some reason docs etc take more trouble over you if you have back-up.... If you are on your own, try finding a local advocacy group through your local hospital or clinic, they should be able to help.

My best advice is to read around this board and pick up as many tips as you can from other postings, and read up on the condition from reliable sources. Don't go near any scary CRPS pictures (does your psychological self no good at all...), and avoid any really negative sites as they can just make things feel even more hopeless than they do already. Don't go near ice, try to keep your hurt limb gently moving as much as you can reasonably bear, and eat healthily to keep your strength up. 500 mg of vitamin C a day has been proven to reduce the chance of spread, and is well worth taking if you can. Quite a few of us use Epsom salts, they really help with some of the burning pain. Get the unperfumed kind and use it either in a warm bath, or wrapped in a damp cloth and placed on the sore area - it can really help. Avoid extremes of temperature like very hot or cold water too as over time they can make things worse.

CRPS pain tends to change over time. It starts off as a raw intolerable pain that drives you mad and depresses the hell out of you, but it does get easier to deal with. I am just starting my third year of CRPS, and have got some of my mobility back (I was on crutches and in a wheelchair for a while, not fun). I am still in pain, but I cope better with it, and can do more. You have to believe that you will enjoy life again, and that good things can still happen. It feels as if your life has been ripped apart along with your body, but don't ever give up on yourself - you are strong and obviously brave as a lion to deal with what you have, and you will get through this bleak time

You have to protect yourself as far as you can from crappy medical and psychological care, and that means learning as much as you can about the condition and standing up for what you know is your right. If your doc is hopeless, then try to find another - you need and deserve much better care. Ask friends and neighbours who they would recommend, and ask the least useless medic you have seen to give you some advice. If your politician won't help (his is a pathetic excuse, grr) keep sending letters politely reminding him of his obligation to support and assist his voters, then consider contacting his opposition or your local press.

Talk to friends and family about what you are going through, and print off some info from a good site like rsdsa.com (? Hope that's right!) for them to read. It's hard for them to understand the condition, and most of the time they don't mean to make you feel bad.

I really really hope hope you can catch a break soon and get some relief. Stories like yours just make me so angry and sad, because your life doesn't have to made so terribly hard like this, just when you are trying to deal with such a horrible and painful condition. Sadly, you are not alone, and the complications of CRPS seem to give the system a lot of excuses and loop-holes to stop them from caring for you like they should.

Take care of yourself and keep posting. I hope tomorrow is better

Bram