Hello everyone
It's been several years since I posted on this board. I had been in recovery a little while then. It has now been about 3 years since I have been pain free. I posted that I would write a booklet on everything I did that worked for me and then life took over and I never did, so I apologise. I wanted to post today as I wanted to give some hope that complete recovery is possible. I now have no symptoms of rsd and have had lots of knocks and bangs and my legs recover as normal. I had rsd that started in both knees and spread to both legs and feet. I could hardly walk when it was at its worse. I realised pretty quickly that the doctors didn't know how to help - pain meds made the situation worse and intensive physiotherapy made the pain worse and my fear level extremely high. I realised I would have to it myself! I began doing gentle pilates exercises and exercises using a balance ball. (I can give the names of the DVDs I used if anyone is interested. I went for very short walks - at the time I could only take short, shuffling steps and could only walk for about 5 mins to start with. It hurt, but I perservered within my own limits - I listened to my body. I had to keep telling myself that there was nothing structurally wrong with my knees (I had had an MRI to prove this). A GP recommended The Mindbody Prescription by John Sarno as it had helped a patient of hers with chronic pain to recover. This book was key in my recovery. I would read it every day. I also read lots of books on healing - people who had recovered from things that the doctors said they would never recover from. I had to get my mind in a place where it would believe I would recover. I also read books on meditation and I used a mindfulness meditation CD for an hour a day, every single day. I also journalled to let out my anger at what had happened to me - I did this every day. By sticking to this routine every single day I made progress - I could walk further and further (but believe me it was an extremely slow and gradual recovery). I also massaged my legs every day with almond oil (with some lavender and rosemary essential oils added). At first I could barely touch my legs but increased pressure very gradually. I had acupuncture, which would give me a few hours relief from the pain. I took lots of vitamin c and omega oils to help reduce inflammation. The key to really ridding me of that final bit of pain was definitely learning how to talk to and control my mind and to control the fear of the pain and for this the John Sarno book was key.
This is my routine, which I stuck to religiously everyday:
Morning - warm bath with rosemary and lavender oils added and epsom salts.
- massage legs and feet.
Afternoon - go for a walk (a step counter was motivating)
- balance ball exercises, followed by pilates (I only did the exercises that were within my limits or pushed me a tiny bit)
- read books on healing. Read 'The mindbody Prescription'. Read Jon Kabat-Zinn book on meditation - 'Full Catastophe Living'.
- meditate for an hour - 'Guided mindfulness meditation' CD -Jon Kabat-Zinn.
- Journal.
- Massage legs and feet.
I also had acupunture once a week when I could afford it!

I really hope this might help someone. I know different things help different people. One of the keys for me was overcoming the fear that the pain was telling me I was damaging myself if I tried to walk and the fear that the pain would get worse. The meditation and john sarno's book helped with these fears. Don't let the doctors take over your recovery - in my opinion they are still very much in the dark. Trust your own body and mind's ability to heal - it is a powerful thing.

Ness -

I know a lot of teenagers go into remission when adults cannot. May I ask how old you were when you first got RSD and how long it lasted altogether?

Thanks.

Mike

Ness,

Your advise is wonderful. I do many of the same routines as you do and it does wonders for me also.

Great Post,

Gabbycakes

Thanks for sharing your story. I do what you did and will try to patiently wait. We all need hope and you have given it to me. God bless you and keep you peaceful and healthy.

Grace and Peace

That is great I hope I will get to that point. currently I am in the 2nd year and still fighting for everyone to believe me. (including my attorney) the last week was very stressful with the hurricane and my workers compensation wanting to cut me off.
In fact, I really felt like I would be better off having my foot amputated then they all might believe me.
Your post gave me some hope. Thank you.
Anita

Ness, Thanks for your encouraging news. Are you still on medications and if so what do you take?

This has really given me hope. I am only 20 and just caught this in its first month of occurring. I am hoping I can have a full recovery too, it's good to know that some people can get through this well again!

Thanks for sharing. I will try what healed you!!! I am sooooooooooo happy for you

Just a question. Did you have delayed pain? That is my main problem. I can push myself and like Dr. Sarno says, I convince myself that there is nothing wrong with me structurally. But that is not my problem. The problem is that I have unbearable delayed pain. For example. Last Thursday I was feeling great and I walked twice as much as I normally can, I tried new shoes, new orthotics. I was so happy I was doing so much better. Two days later I could hardly put any pressure on the foot. Today the same story. So I can move, I can walk, I can do lots of movement with my foot. The problem is what comes the days later and the pain gets worse, and worse and worse and there is almost nothing to stop it. Did you experience this? If you did, how did you deal with it?

Thanks so much for posting!!!!

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.

Hi Ness,
You are truly an inspiration to us all. Thank you! I found the most important thing you said to be: "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." Wow that is soooo true. Anita--You need to follow Ness's advice on this matter because it does work. I got so sick and tired of negative people (and still do today) that I decided about two years ago to get the negativitiy out of my life. Anita, I too was in your boat (and still am). I now don't care who does or does not believe me as I have to live in survival mode each day...not them. You worry about your state of mind and your health and always have positive things around you. It will really work to do so.

Ness--I had been given John Sarno's book about five years ago (in the beginning) and was clueless about how it worked but after many years of my "journey" I understand how majorly important our mind is over our bodies. I will be reading his book again today just to keep me going. I have tried just about everything over six years and after a fall in the icu last sept (which made the ketamine not work and made me so much worse) I thought I was going to die (and wanted to as the pain was so horribly bad from the fall). I had an amazing gift from God during that time where I asked Him to take me and he said clear as day "No. I need you to stay there because I have more things I need for you to do." That is the ONLY thing that has kept me going. It gave me the strength to go on. In Feb this year I got off ALL opiods and weaned off all pain medication. Yes, I still have full-body rsd but I will not let that control my life anymore. I guess you could say I am sick and tired of being sick and tired lol. I started my own PT program and I went from not being able to move out of my bed to only lately doing 7 mins straight on my exercise bike! A year ago I would have told you you were crazy to think I could do it. Every day I try to do a bit more. As you said yourself it is a very slow process and I know my body is healing. I have done alot of spiritual work over the years and laughter is good medicine too. I am down to three meds and weaning off them too. Also, I should say I have been having iv's of all natural vitamins and trace minerals once every month now (since Oct last year when I was on death's bed) and it is really helping me alot. Thank you for letting us know how you are doing. Who knows...maybe I can meet you in Italy someday and we can both hike there. I would love that. Take care and keep up your great work. It is nice to give us hope as we travel down our journey.
kathy d