Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-19-2011, 08:44 AM #11
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This is really my issue. Even going shopping and using a wheel chair or electric cart when we get home and I sit down, it is like a switch turns on and every neuron I have begin bombarding my feet and legs. Even if we were only out 3-4 hours. In the house if I do more than 1.25 hrs of light housework it is the same response.

My doc says "stop when it hurts". It doesn't hurt(well, it does) til I stop.

It is more putting shoes on and walking more than the walking.

I read recently the average case of RSD lasted six years. Don't know how they came to that conclusion, but it is a hopeful sounding statement.
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Old 09-21-2011, 05:26 PM #12
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Dear Ness!

Thank you a million times for posting and for telling us what you did. I promise you I will do exactly what you did and I KNOW I will heal too. I started the massages, and reading the Sarno book. And I do feel better already!!!!!!! I think I will owe my life to you. Thank you so much!

You said that you used to watch a video of a girl who healed but that it's no longer there. Could you please consider posting one or yourself walking in the mountains, or anywhere? I know privacy is always an issue, maybe it can be a private video you only show to a few people and not say your name or any identifiable information of who you are. I would loooooooove to see you because I also feel it would help me to see it. Visual feedback is so important to the brain. In a way we live what we see, not what we think, to see is to believe in a way.

Once again, I thank you and cannot tell you how happy I am for you and how thankful I am to have read your post.
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Old 09-24-2011, 12:48 PM #13
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Ness,
Thank you for the inspiration. I was diagnosed this year after knee surgery last September and I want my life back! I ordered the boof you recommended & can't wait for it to arrive. Quick Question - were you to be employed while you were working on your recovery?
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Old 09-25-2011, 02:39 PM #14
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Default Thank you for your inspiration. God Bless you.

Your story is such an inspiration to me. I am going to do everything you did. Please keep in touch. you give us all hope. M

QUOTE=ness;800365]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.[/QUOTE]
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Old 09-30-2011, 10:48 AM #15
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So glad to hear that a couple of you are going to give the John Sarno book a try. If I am able to help one person on their way to recovery it will make me so happy. Just wanted to say that with the John Sarno book you have to really commit to it for months. It really is no good to read it and then put it aside. You have to ‘do the programme’. I underlined sentences that really spoke to me – that really applied to me. I re-read and re-read. I journalled about the anger I felt, both present and past, every day. I went to counselling. I tried to challenge my fear every day. I basically brain-washed (in a good way) myself into believing, and it worked. I am a fairly cynical person. I am not easily convinced by anything. I did not completely believe at the start it would work but I put this aside and decided I would do it and I would aim at convincing myself it would work. Remember, this was recommended to me by my GP because a patient of hers who had had a chronic pain condition similar to mine had, after many years of suffering, recovered. The GP was going to phone me to tell me about this book, but couldn’t remember my name (I only had seen her occasionally). It was only because I happened to phone her about my pain medication that she was able to tell me about it. I feel incredibly lucky because of this. The book set me on the right path.
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Old 10-15-2011, 11:53 PM #16
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Ness,
Did you try the conventional therapy such as the blocks, etc prior to your own programs?
Thanks for your encouragement which offers a lot of hopes to many of us who are still searching for relief.
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Old 10-17-2011, 07:16 AM #17
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I was able to obtain a copy of the book from the library and just finished reading it. Like you, I am very skeptical but I have nothing to loose but to give this my absolute best try. I will purchase the book, reread it, underline in it and try the suggestions. Even if it doesn't cure me but gives me some relief and makes me a better person than I will be happy.
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Old 10-31-2011, 05:36 AM #18
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Hi
Sorry for taking so long to reply. To answer your questions - I didn't try having blocks. The only thing I had tried was going to a physio - which made me a lot worse because he pushed me too much and I wasn't able to listen to what my own instincts were telling me. He was also a really horrible man - he made me cry several times. The whole thing was really counter-productive because after I'd see him my pain would be so much worse I couldn't do anything for days. My own program of little and often worked so much better. I could increase what I was doing by small degrees. The physio was too impatient.
I did try amytriptaline (sp?) but this had no effect and gave me bad headaches, so I stopped pretty quickly. I tried acupuncture - this gave me relief - but only for a day at a time.
To anyone trying John Sarno - keep going - don't give up.
My thoughts are with you all. Don't give up hope.
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Old 11-23-2011, 12:27 AM #19
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Hi. Can u pls tell me if you had tingling after the pain stopped. My burning stopped after only 3 weeks but I was left with tingling in both legs now for 3 months. I can walk normal but its driving me crazy. Thanks
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Old 11-23-2011, 12:50 AM #20
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This has made me believe I can recover! I have it in both legs also but the burning pain stopped in 3 weeks. I can now walk normal but have tingling up both legs which is better in morning and worse at night. Did u have this? You said you had some remaining symptoms but they went away. Was this one of them? Take care.. Kim
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