Hello and Welcome to Neurotalk, I am so very sorry to hear about both yours and your sisters health problems and I really hope you can find something that will help you both real soon!

I have RSD in my left leg and my right arm - I developed it when I was 12 years old after I sprained my left ankle and am now 13. The main thing that really helps me is knowing that I have friends and family that I can rely on when I am having a bad day and wont just tell me to "suck it up" and stop being so miserable. I have SO many family members that just don't understand or don't want to try and help so it really does make a difference knowing that my mum is there to support me whenever I need someone to talk to. Unfortunately, there isn't much our family members and friends can do to try and help us but it really does make a huge difference to me even when my friends and family just ask me how an appointment went or how I am feeling - it makes me feel not so alone in my battle against this horrible moster (RSD)!

I agree with what MomInPainRSD said also about researching, it really does help if someone does a lot of research about this horrible illness as sometimes we aren't able to get onto the computer due to pain etc. When I was diagnosed with RSD, my mum did so much research and it really did help me as she found out what treatments were available, what sort of doctors I should see etc etc.

I think it will really help both of you that you both have an illness so you can relate somewhat to what eachother are going through. I hate that you both have such horrible illnesses but I think it might make you closer to eachother because you understand what the pain is like and you can both be there to support one another.

Another thing that helped me when being diagnosed with RSD was this forum and others like it. Whilst family and friends try to understand what RSD is, they will never totally understand unless they suffer from it also so it really helps having others to talk to that are going through the same thing as me. I would really encourage your sister to become a member of a support group such as this if she is able to as they really do help and don't make you feel as alone and depressed!!!!

If you or your sister ever want to talk, please know that I am here for you and I DO understand what your sister is going through! I hope and pray that you both find something that can help you and ease your symptoms!

Love,
Alison.