Hello Sarah 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 sorry to hear about everything that you have and are still going through!! I really hope that things start getting better for you soon and you are in my thoughts.

I also suffer from RSD. It currently affects both arms and my left leg. I developed it when I was 12 years old after I fell and sprained my ankle and am now 14. I have tried all sorts of treatments to try and help but none have helped that much really. I am now on Oral Ketamine although my doctor doesnt like me taking it too much as he feels that it could mess up my hormones because of my age etc.

You dont have to have all of the symptoms of RSD to get diagnosed. I think when my Doctor diagnosed me, he said that you have to have at least 5 of the symptoms to get diagnosed. I have all of the symptoms of RSD and when I was diagnosed, my doctor told me that I was the first case he had seen in over 20 years that was text book RSD - it's a shame that my other Doctors didn't pick up on it before then!!!

Everyone is different when it comes to dealing with this awful disease and no two people are the same which makes it really hard for Doctors to diagnsose and treat it properly. Some people might have most of the symptoms whilst others might have them all etc.

If you dont truly believe your diagnosis, I would consider getting a second opinion if you haven't already. I KNOW it can be very stressful but it would probably put your mind at rest and you need a doctor that you feel comfortable with and that knows about RSD.

Please feel free to post anywhere on the forum and ask any questions you may/will have!! No question is silly and im sure someone will try and help you if they can!! Everyone is so nice here and I honestly dont know what I would do without this forum!!!

I understand what you are saying about having a hard time accepting this disease and im sure many others too do!!! I had a real hard time accepting that I had RSD and would literally spend hours in bed just crying and I didnt go out of the house for months because I didn't feel up to it and didn't want others to see me as being 'different'!!!! I got really depressed and it got to the point where I actually wished that I was alive. I eventually found a nice Psychologist in London and she really helped me and gave me coping mechanisms to try and help. I still get depressed, especially if I cant do things that my friends can but im not as bad as I was and can control it a little better. I also have my Psychologist's email so I can talk to her whenever I need/want to.

Do you see a Psychologist?? It might be something to look into if you dont already as they can really help. I actually want to be a Psychologist when I am older and am trying to get accepted onto a Health and Social Care Course!! This disease has taught me a lot and I want to try and help others who are in the same situation as me. There's a few people on here that see a Psychologist/Psychiatrist to help them come to terms with their illness so it might be worthwhile speaking to them about it.

Take care and if you need anything, please know that I am here for you because I DO understand some of what you are going through!!

Alison.