RSDS/CRPS

Less than 3 months after this story was published, I entered Cleveland Clinic’s Pain Management Unit for a 3+ week stay. Over the previous 3 years, 15 different doctors had been little help to me, a few of them even making me worse. My being unwilling to go along with several seriously invasive procedures recommended to me over those previous years - which could easily have made me far worse still - was very fortunate. At Cleveland, some medication changes, along with support from the staff, enabled me to begin consistently walking for the first time in 3 years. So it was with profound gratitude - blended with deep determination – that, standing and walking, I comfortably pushed my wheelchair out their door on New Year’s Day 1991.

 
But a year and a half later the RSDS all came back - in both feet - in just 2 days. Neither everything we had done at Cleveland, nor some new alternatives I then tried, were now helpful. After a very demoralizing month or so, I was at least able to settle the right foot down enough to get around for short distances on crutches. But at that point, improvement stopped completely; the left foot remained essentially unusable. After 6 more frustrating months, I felt utterly defeated.

 
A friend then happened to tell me about a maverick anesthesiologist then at the University of Chicago who was doing unusual work with RSDS patients, and getting unusually good results. By then I was so worn down I was barely willing to investigate this, but still held out a little hope. It was actually the eagerness of this anesthesiologist to work with me that finally roused me to make yet another try at healing, So I got on the train and went to see him in Chicago on a snowy February day in 1993.

 
After I arrived in Chicago, he took me to his wife’s massage studio. There they both proceeded to make extended use of some fairly involved and relaxing guided imagery with me as I comfortably sat in their recliner. Then, while still continuing with the imagery, his wife simultaneously began doing some simple massage as I continued to relax – first on my tight shoulders and neck, and next on my ‘good’ right foot. Then she asked for permission to work with my ‘problem’ left foot. Despite having become fairly relaxed by now, I still did not feel up to allowing her to touch that very reactive foot, and quietly said so.

With not the slightest trace of reproof, she completely accepted my refusal and, along with her husband, did some more guided imagery with me. There was no attempt to ‘talk me into’ letting her work on that problem foot, and the total respect with which my wishes were met had a deeply positive impact. In 10 minutes or so, she again gently asked for permission to work with that foot, and this time I thought to myself, "Oh, what the hell... Why not," and willingly agreed.

The Shift
As soon as she ever-so-gently touched my left foot - far away from the spot on it where the problem had originated - the whole foot started to burn – not super-strong, but the RSDS was clearly re-ignited. This was quite typical, however, and not at all surprising to me. But now, in my somewhat relaxed state, my own thought was - in a sort of ‘who cares’ mode: “Let it burn…  Just…let it burn…” Partly because of how respectfully they were treating me, which helped me feel increasingly safe, and partly because their guided imagery was indeed helping me feel more relaxed and comfortable, I was somehow able to sink into, and surrender completely, to the situation, to just let go of fighting it at a very deep level. Within the next 20 seconds or so, as the foot continued to burn, some combination of the very gentle quality of her touch, the positive words she was continuing to say to me, and the caring in her soothing voice … these qualities somehow blended with that relaxation they had already created in me to begin a profound shift deep inside me. Though the imagery she was giving me had nothing whatever to do with esoteric “energy” or anything of the sort, I then literally felt some kind of “energy” rather suddenly start to flow down from my head, down through my body, down my left leg, and out my left foot, all in about 2 or 3 seconds. The moment that "energy" flowed out of my foot, the burning simply vanished, evaporating like a puff of smoke. And it stayed vanished, even though she continued very gently touching that foot. I said nothing about any of this at the time, so they were unaware of my 'shift' until after the relaxation part of the session was over and they asked me about my experience of it.

Now for quite some time this burning in my foot would frequently come and go all on its own. Though I was intrigued with this rather dramatic ‘shift,’ I was still very dubious that it was anything more than a fluke.

The real clincher for me came the next day when, back home in Kalamazoo, I noticed the burning starting to return. I then mentally put myself back in their office and re-created that sense of complete surrender that they had helped me experience the day before. And almost immediately: Poof! The burning again evaporated, vanished! Now this was HUGE! For the first time in all the years I’d dealt with this condition, I could now do something myself, within myself, on my own, that had a dramatically powerful - and very immediate - effect on this burning pain. This was quite exciting and encouraging.

In the succeeding several days, every time the burning would try to come back, I’d stop whatever I was doing, mentally put myself back in their office, and again go into that feeling of surrender. And each time – Poof!  - the burning would disappear like a puff of smoke! About the 5^th day of my doing this, I started noticing that now, each time the burning tried to re-establish itself, its attempts were becoming noticeably weaker and weaker. In the most profound way it’s possible to know, I now became very clear that I had its number! Instead of being chased by this fearsome RSDS dragon, I was now becoming empowered to not only stand my internal ground, but to completely turn around and chase the dragon back into its cave! It was now running from me! What a turnaround!!

I saw the anesthesiologist and his wife for 4 more treatments over the next few months, mostly to help ‘set’ the benefits. I started walking freely within a month or so of this first visit, and in a few more months was able to go back to work full-time as a Clinical Massage Therapist (see the "Clinical Massage" page in this website). Additionally, I eventually went on to teach 2 semester-long weekly T’ai Chi classes for several years (see "T'ai Chi" page). My escape from RSDS seemed complete. 

But 9 years after this, my ‘great escape,’ some serious over-use during a household move suddenly seemed to tear apart what were still some vulnerable structures in that left foot, weaknesses that I strongly suspect happened during - and because of - those wheelchair years. This was a 3-year period when my left foot had been almost continually and quite badly swollen, so that the tendons on the top of the foot were almost never visible. With the trauma from this move, the RSDS burning made a mighty effort to re-assert itself, but, relying on these past experiences in Chicago, I was once again able to chase the burning RSDS dragon back into its cave.

But the already weakened physical structure of that left foot had become even more damaged, and it turned out to be unable to support me for many years after that, once again forcing me to use crutches. But without the extremely reactive burning pain of RSDS, using crutches was now very do-able, even though it was still quite limiting. You might notice in the photos of me on the “Clinical Massage” page of this website, that at no time was I standing with weight on my left foot; I was always supporting it by kneeling on a stool, and that actually worked fairly well. So, while I was limited to doing just part-time work during this 6-year time period, that was still far more than I had ever been able to do when the RSDS burning was active.

I still notice occasional attempts of the RSDS burning to re-appear, and my left foot definitely remains very vulnerable to physical stress, as well as being especially sensitive to cold. The technology described on this website’s Homepage has repeatedly shown itself to be quite helpful for me in such situations. I believe it has also assisted me in successfully regaining my growing capacity to again walk freely without crutches, though I still need to be careful about that. 

Nevertheless, compared with the absolute nightmare of living with active RSDS, I am enormously grateful for my past and present good health. I consider myself to be basically in remission from RSDS for the last 20 years. People afflicted with it as seriously as I was will easily appreciate the great depth of my gratitude, and they know very well how uncommon such remission is for someone who had been so deeply in its grip for so long. Anyone trying to cope with this incredibly cruel condition most assuredly has my deepest support and goodwill.


A professional paper by Dr. Flemming, his wife and others, describing in general the process they went through with a total of 41 RSDS/CRPS sufferers, was published in 1997 in the Clinical Bulletin of Myofascial Therapy. A link to the abstract of that paper is http://www.tandfonline.com/doi/abs/10.1300/J425v02n02_05

I of course wish to make it quite clear that I am not a doctor. Nothing on this page - or anywhere in this website - is intended in any way to diagnose, treat, prevent, mitigate or cure any disease or condition. Any specific health problems should be referred to a qualified health care provider.