Hi Pete,

I do agree with what you are saying about 'Use it or lose it' however for some people, that is really hard.

I spent 13 months in a wheelchair after a nerve block caused me to lose my coordination (PM Doctor injected into my leg that has RSD - something which you aren't supposed to do). During that time, I couldn't do anything hardly and had to rely on my mum and dad to take me everywhere. I did try and move as much as possible but it was really hard when I couldn't coordinate my legs properly.

You have to remember that some of us have other issues other than RSD which can stop us from moving as much as we'd like. I have Dystonia which means I can't move my foot at all so weightbearing can sometimes be a real issue. I also suffer from Dyspraxi which means I can't co-ordinate things well so when my PTs were giving me exercises, I often found them hard to do.

When I went on the intense PT program, the PTs and Doctors there made me realise that I am in pain whether I am sat or moving so I may as well be doing something. It was a real eye opener to realise that and I think it takes a while to get to that point - you have to try and "accept" this disease first. After realising that, I try and move as much as possible even though it can be extremely hard at times. If you notice on my Facebook account, I try and go out as much as possible, even though it's hard! RSD has took a lot from my life so I don't want it to take anymore (even though it does!).

I do agree with your comment about pain meds. I really don't get why some people are on them if they aren't helping. I used to be on LOTS of meds and all they did was mess up my body. They didn't help with the pain - they just caused more problems as I couldn't function due to even more fatigue then I now have, sickness etc.

When I went onto the PT Program, they weaned me off all my meds to see if any were actually working. It was really hard coming off the meds but it turned out, none of them had been helping and were just causing more problems. I often get comments from people such as "How can you possibly have RSD and not be on any meds?" which really annoys me. The fact is, none of the meds worked and after so long, your body starts to get more 'tolerance' to pain.

A girl that's on a placement in the Care Home i'm currently at was talking to me about tattoos a few days ago. I asked her if they hurt and she said, at first they do and after so long, your body starts to get used to it a little. I guess that's a bit of whats happened to me.

Just remember though that some people have problems moving due to mobility problems and other issues not related to RSD. I do agree that no matter what state you are in, you should move as much as possible but for some people, it's really hard and RSD has a mind of it's own and will do what it likes, when it likes!

I hope all is well with everyone! Sorry I haven't been around much - have been so busy with placements so that has took a lot out of me so I hardly ever get time to myself anymore!