Hi Deb,

Please don't be sorry for coming here and asking any questions! It's so important that you post and get the help you need and deserve!

I'm so sorry to hear that you suffer from both RSD and MS and hope you find some treatment that will help you soon! My nanan had Progressive MS so I know how much of an horrible condition it is ... I can't imagine having both RSD and MS - you must be very strong!

I have RSD in my left leg and both arms. I developed it when I was 12 years old after an ankle sprain and am now 14. I spent 13 months in a wheelchair after a nerve block caused me to lose all coordination in my legs. I had to go through intense Physical Therapy to learn how to walk again. My right arm has also locked into a fist several times and stayed that way for months. I couldn't write with my arms which was a real battle when trying to cope with School work etc.

I still have to use a wheelchair now when going anywhere long distance and must limit how much I do. I am unable to go to mainstream School due to my RSD so attend a specialist school centre for kids with illnesses etc. It's so much easier to manage there as it is all in one place and the teachers are really understanding about my RSD etc. I go to College 3 half days a week too to do a course in Society, Health and Development. It's REALLY hard sometimes trying to get up and get ready as I have fatigue (Fibromyalgia). I tend to find that on a weekend, all I ever do is collapse and sleep ... it's sort of like my body shuts down and can't take anymore.

Are you having any PT for your MS and/or RSD? It's really important that you try and keep moving as much as possible. I've lost all movement in my foot due to a movement disorder called Dystonia so am having PT to try and help with that also, however my PTs are wanting to try other options now as a last resort. Seeing as it looks like your RSD is spreading, try and do some gentle exercises. Start and do small exercises and then build them up whenever you feel up to it and can. Hopefully that will help you a little.

I really admire your positive attitude and am sure that will help you a lot ! I know how hard it is trying to stay positive with RSD. I get Depressed a lot however, I try and stay positive the best I can as I know I can't change this unfortunately so I may as well try and live life the best I can, despite all of the limitations I have.

I hope you get to feeling better soon. Are you on any meds to help with your pain? It might be worth asking your Doctor if there's any more meds that might help you now seeing as you aren't feeling too good if your current meds don't seem to be helping too much.

Take care and if you ever want to talk, i'm here for you!

Alison