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.

Thanks so much for your post. It is great to hear someone post a story such as yours.

I will look into the books you mentioned. Pain meds have not helped, nothing has helped really. I also learned to push just a little at a time. fmichael told me of Shinzen Young's book, Break Through Pain. It taught me, through meditation not to be afraid of the pain. I don't know where I would be today without that book.

You have inspired me to get back into it more often. And, I had been thinking of doing some kind of tai chi or something, as my body has really been getting tighter, and my ability to move more difficult.

If you could share here or by PM Dvds or other ways to learn beginning pilates or other movement work other than going to classes, that would be great.

With the help of my service dog, I do go walking. It is not easy, and I practically collapse after, but I do it.

I applaud all you courage, perseverance and very hard work.

Well done!!!

Wow - Congrats. That is awesome!!

Thanks so much for sharing your story.

Sandy

Thanks ness on the book info! Your experiences certainly gives hope!!

I agree with the point that I had to get over the fact that I was telling myself that I was further injuring myself when I did any walking. And getting through the maze of bureaucracy and the bureaucrats that go with it was causing so much stress, I could really see how stress was impacting my pain levels. I had to let go of a whole lot of my life. Simplify.

Hi
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.

Thank you!!!!

This is excellent information to know! I will see if my local library can get them from interlibrary loan first. Then I will try Amazon's used books/DVDs.

Thanks so much!

I think sometimes people who get better do not take the time to come back and post.

Wishing you continued success!

Dear Ness -

Your user name and reference to an absence of "several years" (the last three of which have been pain free) suggest that once again, we have the pleasure of the company of Vanessa, aka InHisHands, see Need advice: article I wrote about me/ why I need Ketamine treatment... sound ok??, post #1 at http://neurotalk.psychcentral.com/sh...d.php?p=149652 And please correct me if I"m wrong, but with a last posting of March 11, 2008, my money is on IHH.

So, if I guessed right, all the medical and mind/body stuff aside, how and what are you doing? Are you in school? What's going on?

Mike

ps Ironically, only four days ago a junior member responded to InHisHands' thread of December 17, 2006, Full recovery from RSD/ CRPS, which appears at the bottom of this page, after long since going platinum with 61 posts and - as of right now - 12,292 hits!

Sorry - I'm not IHH. But funnily enough I did reply to that thread. Page 4 - Ness. Actually, I reread it and I feel a bit ashamed because I sound quite arrogant and maybe a bit rude - so apologies.

When I was diagnosed I remember looking for stories on the internet of people who had fully recovered and I never found any. It really scared me, so for all those looking now - here it is - I HAVE FULLY RECOVERED FROM RSD / CRPS. I have no pain. As I said in that thread, there was a point where I told my boyfriend I wanted to die - I couldn't cope with a life filled with so much pain and with not being able to walk. The journey to full recovery was long and slow. I realised I had to look inward for healing, not outward to doctors and specialists. The fear was the hardest hurdle to overcome, but eventually I got to a point where I would laugh at the pain - the opposite of what you would normally do. I think this sends a powerful message to the brain that it does not need to continue sending pain signals. I really think I need to write the whole of my recovery story for this to make sense - probably sounds a bit odd on its own!

I agree, it is very nice to hear positive reports once in a while, be it a remission, full recovery, or some progress! Happy to hear the results you have had Ness!!

Here is my "progress report"......

I was diagnosed in September 2009 with CRPS in my big toe. Result of multiple surgeries on that toe. It spread to my entire foot and up my ankle, because I was put in a camwalker for a couple of months while we were trying to figure this out (not good to immobilize!)

I received physical therapy for a couple of months. My PT was an absolute guru and genius, very familiar with CRPS, and I clicked with him immediately. I was very lucky to find a PT of this caliber and with a good CRPS knowledge base. We got the foot to settle down after about 10-12 weeks, and the CRPS now exists in only my toe; the original site of the CRPS. Big score here!!!!! Compared to what so many of you are going through, I consider myself very, very lucky.

Together with my physical therapist, we developed a personal management plan. Below is what I do. And I do it RELIGIOUSLY, every day.

*Warm water therapy for a half hour to start the day. (soaking of foot). It loosens up the foot for therapy and feels great.

*Meditation during the water therapy (what the heck, I'm a captive audience). As mentioned by Ness, the "mind-body" connection should not be ignored and cannot be overstated. It can be very helpful. It can actually change your brain.

*Open your mind to complementary therapies. Below is a link to a site that gives a good overview of many of the complementary therapies that can help you. Look at the bottom of the page where it says "healing practicies A-Z.

http://www.takingcharge.csh.umn.edu/

*Full exercises, yoga stretches and physical therapy (self) for foot and lower extremities after the warm water therapy soak

*General exercise of one hour sometime during the day, depending on what I can handle on that particular day. It must be low impact. I love my stationary bike! It also helps me keep my knee strong, (I need a full knee replacement on the opposite leg, which of course I am putting off as long as possible).

*Chiropractic treatments at least once a month to help keep my spinal alignment, as I have compensatory hip problems related to my foot and the "altered gait" that I have because of the CRPS. I receive ultrasound therapy for the hip while at the chiropractor.

*Massage once a month. Not the "relaxing" kind of massage; rather the therapeutic kind that hurts! Gotta find those trigger points!

*Daily meds consist of neurontin (gabapentin) three times a day, naproxen twice a day, trazadone, amitryptiline. This cocktail sure beats the heck out of percocet which I was originally on but weaned myself off of; another big score there!

*My "team" consists of my Podiatrist for foot issues, my GP for general stuff (sleep meds, anti-depressants, blood tests, etc), my Chiropractor, my Massage Therapist, my guru Physical Therapist, and my Pain Management doctor (whom I saw for sympathetic lumbar blocks and some pain meds early on, but don't need his services right now.....yea!) I think it is important to take a "multi-disciplinary" approach to CRPS. Hit it with all guns and don't ignore the mental health ramifications as many of us suffer from depression. Actively seek out professionals who have had experience with CRPS! If any professional gives you that doe in the headlight look or if you find that you know more than they do after talking with them, keep looking! This is a WIDELY misunderstood disorder, even among professionals. I saw one doctor that had only seen two cases of CRPS in 26 years!

I spend a minimum of 3 hours every day working on managing my CRPS. I've literally "waged war" on this disorder! Without a high level of effort, I get into trouble very, very quickly. Considering I had never heard of CRPS until 2 years ago, I've learned so much about this condition.

Is my CRPS gone? In my dreams! No way! I have days that aren't too bad and I also have days with quite a bit of pain. Is it manageable? YES. And for that, and never knowing what tomorrow will bring, I am very thankful!