Hello and Welcome to NeuroTalk - you will meet many great people here who I am sure will be more than happy to help you in anyway they possibly can!!

I'm so very sorry to hear that you have RSD and I really hope that you find something to help you and ease your symptoms real soon. Your story sounds pretty similar to mine - I was told I had "just" a VERY bad ankle sprain and I was placed in a cast which made things soo much worse!! We had to go to 5 different hospitals before I got an accurate diagnosis as no doctors had seen a case of RSD before so didn't know what to look out for. I developed RSD when I was 12 years old after an ankle sprain to my left leg and it has since spread to my right arm - I am now 13.

Nothing has really helped me other than Ketamine. My doctor was VERY afraid to use the Ketamine because of hormones etc but eventually decided that it was worth a shot. I had a splint moulded under Anaesthetic as I suffer from Dystonia as well as RSD and it was decided that they would do a Ketamine epidural as they knew the splint would make my pain worse. The epidural helped and it took my pain from an 8 and a half on the pain scale to a 6ish. The Block wore off after a few hours and I was later put on Oral Ketamine however I am only allowed to take it when the pain is unbearable as my PM Doctor feels that it could make me worse.

I'm sorry that you had such a bad reaction from the nerve block. I have only had 1 nerve block other than the Epidural and I had a Guanethidine block. My PM Doctor injected directly into my leg which has RSD and it made me soooooo much worse!! When I woke up from the block, I was unable to co-ordinate my legs and kept falling backwards and spent 13 months in a wheelchair. It was only after I had the nerve block that we found an article on the internet stating that you should NEVER inject directly into an RSD limb unless you absolutely have to ... my PM didn't know that at the time unfortunately. My Doctor wont do any more nerve blocks now and I am pretty thankful in a way as I DON'T want to go through that again at all - it was awful!!!

I really hope you find something that helps you soon! Please bear in mind though that no two cases of RSD are the same and everyone reacts differently to different drugs, treatments and procedures etc.

If you ever need someone to talk to, please know that I am here for you because I DO understand some of what you're going through!!

Love, Alison.