Hello Butterflylisa 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 am SO sorry to hear that you have RSD also and really hope that things start improving for you real soon!
I have RSD in my left leg, right arm and possibly left arm also (although it is still to be confirmed by my PM Doctor although the PTs believe it is RSD as I have all of the same symptoms). I developed RSD when I was 12 years old after an ankle sprain and am now 14. I have tried all sorts of things to try and make it better but nothing has helped so far and we are looking into other treatments as a last resort.
I can totally relate to not wanting to go out. I spent many long months just laid in bed because I couldnt cope with facing the world and being "different". It really annoyed me when I used to go out and people would just stop and stare at me because I was in a wheelchair and couldnt walk. I go out quite a lot now but it still really frustrates me when people stare at me just because I look different. I guess I have learnt to try and 'cope' with it better now though and dont let people bother me too much. I went onto an Intense Physical Therapy Program and that really helped me - it hasn't improved my pain or anything like that but it made me realise that in order to try and overcome the RSD, I have to go out and do things. The PTs explained to me that I am in pain whether I am sat doing nothing or doing something so I may as well try and do something and it really made sense to me as I never thought of it like that before - I think a lightbulb went off in my head then. I still have a very hard time going out but I try and force myself to go and do something fun - even if I have to pay for it afterwards!!
I'm sorry to hear that you cant walk at the moment
! That really upsets me as I KNOW how hard and frustrating that is! I spent 13 months wheelchair bound as my legs would just shoot out in front of me and I had no co-ordination in them. I am just now starting to walk again and can walk short distances but still have to use the wheelchair long distances.
Have you tried doing exercises with ankle weights?? They really helped me and were the exercises that got me walking short distances again - my walking is no where near perfect still BUT I can walk short distances and that makes such a big difference!! I still have the exercises so if you would like me to PM them to you, please let me know as I would be happy to do so!!!
Please dont give up hope!!!! I KNOW it is extremely hard at times but without hope, we have nothing!! One thing that I try and do when I am feeling really down is concentrate on the things that I can do instead of the things I cant - its hard at times but it does seem to help a bit!! Do you see a Psychologist? They can be really useful in helping you come to terms with illnesses and prescribe meds that could help you - I actually want to be a Psychologist when I am older and am going through a program at the moment that should help me get a job in the health and social care society if I get accepted!!
Do you see a Pain Management Doctor?? They are usually the doctors that treat RSD as they can prescribe meds and do nerve blocks etc. It's really important that you find a doctor that knows about RSD and doesnt just pretend to. Dont ever let your doctor force you into doing anything you dont want to either - its your body and you know yourself better than anyone else!!
As i've already said, please dont ever give up hope!! There is always research going into RSD and different medications available to try and help you cope with the pain and other symptoms.
Take care of yourself and if you ever need anyone to talk to, please know that I am here for you because I DO understand some of what you are going through!!
Alison