Hi all

Sorry for the delay in answering your questions. I have been away for a couple of weeks - walking in the mountains in Italy. I say that not to say "hey, lucky me!" but to give hope of full recovery.

My reason for posting these messages is that in the early stages of discovering about the illness I needed to hear some stories of healing. Hope was important my recovery. The posts that I found helped me and I would like to pass this on to others.

In answer to your questions - I am on absolutely no medication - not even ibuleve anymore (that was the last to go). I am 37 at the moment (not a teenager - I'm afraid!). My RSD started in December of 2006. I was diagnosed by an orthopaedic consultant/surgeon. I know I was lucky to get a diagnosis. It took me about a year to be mostly pain free. (Even when the pain stopped, I still had some of the symptoms of RSD - the bright red /mottled skin turning up randomly etc) After that it took me until pretty recently to get my muscle strength back to normal - to where I can say I am back to where I was before RSD in terms of walking. Walking up and down hills was the worst. Now I don't even think about it - apart from to be incredibly grateful. I can keep pace with my partner who is 6ft and walks pretty fast! I have not managed a 'normal' run yet. I lost the muscle memory for running, but I think it will come with time. However, I can't say I ran that much before!

Just to make myself clear – I have no pain now. I have not had RSD pain for about 3 years. I do not believe it is in remission. I believe I have recovered. Even if it were to come back, I would know how to recover again, so I do not fear it. (At the beginning I did fear a return of the RSD and so was incredibly cautious of my body. This was like the last hurdle – to rid myself as much as I could of this fear and the hold it had over me).

Janejane – to answer your question. Yes I had exactly what you described. It really sounds to me like you’re on the right path (just my opinion). I made the decision to sometimes do more – if we went away for a weekend I would push myself a bit more and do more walking. Yes, it would take me a few days to recover. I think this was a combination of things. At the beginning I think I had not mastered the fear of the pain and so it did return. John Sarno talks about how we are programmed to expect the pain to return if we do certain activities. This is a powerful thing. Even after I had mostly mastered the fear, I would get muscle pain (not RSD pain). My muscles had atrophied and it took me a long time to get back to normal (we’re talking years, not months). Do not underestimate how long it can take for your muscles to fully recover. However, muscle pain is fine, it’s normal – I’d have this any day over RSD. Now I really don’t get muscle pain anymore, unless I do a really long trek up a mountain – just like anyone else. So I would say you need to conquer your fear – this takes time and perseverance but you can do it. I used to shout at my mind to ‘stop it!’ when it started to get worried and absorbed by the pain. By the end I used to laugh at my mind! I’d say it was good for me to do the occasional long walk – it did give me a sense of achievement. However, what really worked in the long term were the daily walks with a step counter. I recorded in a diary the amount of steps I walked. I could then see I was very gradually improving over the months. The local park where I walked was very small and so I could eventually do a circuit and this felt like such an achievement. Sometimes, however, I would feel like I was not making any progress because it was so gradual. However, I was lucky in that a made a friend at the park who walked his dog. If I hadn’t seen him for a while, he would say how much I had improved. This really helped to keep me going. Positive people and positive comments are so important when you’re trying to beat this thing. I had so many people tell me negative comments about what I would not be able to do. I used to get really angry about this. (I found a video on youtube about a teenage girl in a rehab centre, at the end of the video she was running up the ‘rocky steps’. I watched this video over and over – it made me cry and gave me hope. I can’t find it anymore – has anyone else come across this?) When I did have RSD pain I would journal about my emotions, my anger (about present and past events). It’s so important to take the focus from the physical to the emotional. I had counseling which really helped. I also found using my meditation CD for an hour would help. I hope I have made sense. You will find your own way through.

I have posted this information before, so I hope no one minds me posting it again. These are things you can order from amazon.

This is the balance ball DVD:

Balance Ball Beginners Workout-Suzanne Deason (by Gaiam)

and the pilates DVD:

Pilates for Beginners-Jillian Hessel (Gaiam)

I used to put the DVD on on my computer and stretch the mouse lead out on the floor so that I could forward through exercises until I found ones I could do. At first there were only a few, but over time I could do more and more. It is a really good way to prove to yourself you are making progress. It also helped to release the endorphins! Using a balance ball was good for me because getting down on the floor and back up again was very hard.

I also sometimes did/do Chi Kung exercises. I use a DVD called 'The healing Code' by Dermot O'Connor. There is a book that goes with it. He overcame MS. Most of the exercises are done standing and since I couldn't stand for long I would do most of them while sitting on a balance ball.

I also really like a book called 'Anatomy of an Illness' by Norman Cousins.

But above all, give Dr Sarno – ‘The Mindbody Prescription’ book a try. It took me a long time to believe it would work but you just need to convince yourself and do it. What have you got to lose? And keep moving - as much as is possible for you.

Sorry this post is so long. I hope it’s been helpful to someone. Please feel free to ask me anything. I don’t know if this can be done on this site but if you want to send me a pm please feel free.