On March 24, 1999, my life took a sudden detour. I was typing at my keyboard just as I did most days in my job as a computer programmer. This time, however, I felt a strange and unpleasant sensation – the muscles in my left forearm were cramping.
I was immediately nervous. A fellow singing enthusiast I’d met recently named Leslie had been diagnosed with thoracic outlet syndrome. According to her doctor, it was caused by excessive laptop use while flying cross country, and her condition was frighteningly severe. In addition, Dave, a good friend of mine from graduate school, had recently been diagnosed with tenosynovitis; he had been forced to stop working, and he had been advised that any time he felt pain, he was prolonging his recovery – as much as two weeks. I called him to describe my symptoms to him, and he advised that I purchase Pascarelli & Quilter’s Repetitive Strain Injury.
I rarely visit the doctor, and I hadn’t been to one since my move to San Francisco in March of 1998. In fact, I hadn’t even chosen a primary care physician under my Blue Shield of CA HMO. I was anxious enough in this case, however, that I chose a physician – Dr. Potter – and booked the earliest available appointment.
By the end of the day, my left hand had deteriorated dramatically. After brief periods of typing, the letters on my screen began to appear out of order; sometimes, they weren’t anything like what I intended to type. My arm also became very weak, so that, for example, opening a Snapple had become impossible. In addition, the aching, cramping feeling had developed in to a combination of burning and tingling that resembled a nasty sunburn melded with the familiar pins-and needles sensation of a limb falling asleep.
Over the next two weeks, I used my left arm less and less, with the result that my right arm began to complain as well. By the time I met with Dr. Potter on April 7, 1999, my right arm was nearly as bad as my left. In addition to misfiring fingers and pain, both my arms were amazingly weak. I dreaded the heavy door to my apartment. Fortunately, I was able to walk to and from work, where I was reduced to a slow, Count Basie style of typing.
Dr. Potter did a couple of carpal tunnel tests, declared that I had tendonitis, and sent me home with a prescription for Naproxen and wrist splints. Furthermore, he recommended that I do everything I could to allow my arms an opportunity to rest.
Having read Pascarelli’s reservations regarding anti-inflammatories and splints, I didn’t take the Naproxen, and I avoided the splint as well. I found that its primary value was in reminding my coworkers of my condition. I did, however, stop all of my extra-curricular activities, including playing my guitar yoga, and a part time programming job I had on the side.
Reducing my activities significantly seemed to help. When I went to see Dr. Potter for a follow-up appointment two weeks later, my strength had improved somewhat. Although I was still in a lot of pain, it seemed like progress. I declared to Dr. Potter that victory was imminent, and he was optimistic as well.
Round and Round
A month later, however, I was still in a great deal of pain. I still couldn’t play guitar, and I avoided driving at all costs. A couple of times my pain had woken me in the night. I kept thinking about what my grad school buddy Dave had told me about recovery time growing faster than one can heal. I became more and more afraid.
I decided to visit Dr. Potter again, but learned that due to some financial debacle, I would either have to find a new doctor or upgrade my insurance to a PPO. I chose to switch to the PPO, which turned out to be a fabulous decision.
In mid-May I went for an evaluation at Hand Therapy of San Francisco, whom Leslie (my singing friend with TOS) had recommended. They suggested a combination of abdominal exercises, active release therapy, and contrast baths. As soon as my PPO went into effect, I got a prescription from Dr. Potter for treatment at the clinic. Although the abdominal exercises didn’t seem to help, I found both the physical therapy and the contrast baths to reduce my symptoms somewhat; however, the pain returned to its usual ferocity in a matter of hours.
On June 1, 1999, I reduced my work hours to half. Fortunately, my boss understood. Unfortunately, my symptoms did not subside.
In July 1999, I found a local CMT and started going once week – sometimes twice. As with the hand therapy program, I experienced some improvement in my symptoms for a few hours after the treatment. I also joined a gym and started swimming. It hurt, but I could do a few laps, and I was still hearing from the folks at the hand clinic that muscle weakness in my torso was a significant contributing factor.
I also purchased Dragon Voice Recognition 3 in July, 1999. Impressed though I was, it soon became clear that it was hard to write letters with it and impossible to program with it.
In August 1999, at a coworker’s suggestion, I decided to try acupuncture treatment at the California Acupuncture Center. I went twice a week for several weeks. Again, the results were not quite what I had hoped for, and they only lasted for a few hours.
In September 1999, I went to a Hellerwork practitioner named Merijo Kobe once. I did not experience any obvious benefit, and I did not feel confident that Hellerwork could help me. Perhaps this was because she was the first person to suggest that mental issues could be involved. At the time, I didn’t appreciate her suggestion.
Modeling the Winners
On January 11, 2000, I attended the East Bay RSI Support Group Success Stories meeting. I felt ambivalent about what I heard.
Those who were better were far from cured, and much of the advice dealt with coping rather than healing. No one seemed to have a solution that directly addressed my pain and function. Furthermore, those who were better had made significant lifestyle changes. There was a great deal of helpful information, but not what I wanted to hear.
However, I was determined to find out as much as I could from those who were, though not cured, much better than I was. I left the meeting with two key ideas:
RSI is all about blood flow.
Retraining your neurology can restore some of your movement abilities.
That night I hired two of the speakers: Elise Chavel, who had recovered significantly by becoming a Feldenkrais practitioner, and Chris Carrigg, who had made extensive improvement in his condition through exercise. I planned to meet each of them several times to learn as much as I could so that I could follow in their footsteps. Looking back, the decision to model those further along in recovery than I was one of the best decisions I’ve made in my life.
Due to my lack of progress, Dr. Newkirk ordered me to stop working entirely on January 31, 2000. Frankly, my productivity had been so low for so long, I imagine my employer was happy to see me go. In retrospect, it was the right decision; however, at the time, my financial situation compounded my anxiety, which exacerbated my symptoms.
Although I continued to receive occasional physical therapy, SCIF made it more and more difficult to get treatment from Dr. Newkirk’s clinic. Therefore, throughout the spring of 2000, I focused on my workout program with Chris and Feldenkrais with Elise and, at her recommendation, Frank Wildman. Both pursuits taught me ways to make subtle improvements in my function. Through exercise, I was temporarily increasing the blood flow to my arms, and I could feel the difference, especially after each workout. With Feldenkrais, I was restoring somewhat the range of motion of my head and arms. I was even driving a little again.
Meanwhile, in April, I finally received some money from Unum Provident which enabled me to pay down the debts I’d been accumulating and continue the alternative treatments I was pursuing.
A Near Miss
After a Feldenkrais session in May, 2000, Elise mentioned Dr. John Sarno’s work on chronic back pain. Skeptical but ready to try anything, I made an appointment to see Dr. Bruce Eisendorf, who is the only doctor in the Bay area who has studied with Dr. Sarno. On June 5, 2000, Dr. Eisendorf examined me and diagnosed me with tension myositis syndrome. I attended his class and was interested to learn that Eisendorf himself had suffered from tennis elbow for many months before being cured through Sarno’s approach.
I was still skeptical. However, for the next month, I studied Sarno’s books and talked into a tape recorder for 15 minutes a day, trying to figure out from what feelings the pain might be distracting me. Certainly I’d been under a lot of stress at the time of my injury – work was difficult, I was keeping very busy outside of work, and I was dealing with the aftermath of a divorce. However, I already knew about those things. The pain certainly wasn’t distracting me from them. I got nowhere.
Based on the encouraging progress I had made through Feldenkrais, I took a few Alexander Technique lessons in July, 2000. However, these came to an abrupt halt when…
…in mid-July, Elise called to tell me about a fantastic new book on RSI called It’s Not Carpal Tunnel Syndrome . The authors made three points which struck me.
RSI is a comprehensive upper body problem,
One RSI patient saw significant improvement using Sarno’s approach, and
Damany had developed a physical therapy program that consistently got patients back to work in roughly six months.
The first claim resonated with my experience and was consistent with Dr. Newkirk’s view. I was excited to see it codified for the first time in book form.
The second claim was intriguing. One person had made some progress via the Sarno route, where so far I had failed. Perhaps it was worth exploring further.
The third claim, on the other hand, seemed outrageous. No health practitioner I had met had ever claimed any kind of consistency with RSI sufferers. I knew personally several RSI sufferers who had struggled for years and were still spending most of their time at home in severe, constant pain.
The book cover mentioned that Damany was in private practice in Allentown, PA, so I called information and got the phone number of her office. I called and left a message on an answering machine; a couple of hours later Suparna returned my call herself.
I immediately questioned Suparna regarding her claims of speed and consistency, and she supplied me the names and phone numbers of more than ten patients. I was impressed; other health practitioners I had asked for referrals hadn’t been able to give me a single one. Meanwhile, I made an appointment for an evaluation, got off the phone, and used Dragon to order a plane ticket online.
Suparna’s patients corroborated her claims. Like Chris and Elise from the January 2000 East Bay RSI meeting, they were not pain free. They had limitations. They took frequent breaks and followed their stretching and exercise programs. They had changed jobs or at least modified their jobs significantly. At the same time, every one of them was leading a relatively normal life. They had manageable symptoms that were not stopping them from working, from raising families, from riding motorcycles, you name it. All of them credited Suparna with improving their health from varying degrees of pain and dysfunction to tolerable.
A few days later I arrived in Allentown where an old hometown friend of mine named Vinnie let me sleep in his guest bedroom. I was in a lot of pain when I arrived at Suparna’s office the next day, as I wasn’t used to driving so much. Suparna’s assistant Beth welcomed me and asked me to wait. Soon I was on the sole massage table, and Suparna was patiently listening as I relayed my story. Then she announced that, unlike much of the physical therapy I was used to, this was going to hurt. A lot.
With that, Suparna began digging into my shoulders, neck, back, chest, and arms, perceiving with her fingers what she wanted to know to evaluate my condition. She continued for two excruciating hours. She did her best to distract me by asking me questions and getting to know me, but it was difficult to carry on a conversation through the pain. At the end of her exam, she declared I was well in the severe category as defined in her book, and that she was confident that I would return to work in roughly six months if I chose to work with her.
During the fall of 2000, under the care of Suparna, Beth, and Bella, I experienced a gradual reduction in symptoms and a gradual increase in function. Physical therapy was 4 times a week, and the visits were 2 hours long. I met with Bella 3 times a week, and my program grew gradually from 30 minutes to 2 hours. At home, I was doing stretches and exercises Suparna had asked me to do – often every hour. On bad days, Vinnie helped me out with activities around the house like groceries, cooking, and laundry. It was intensive care, and it was caring.
Meanwhile, I continued to research RSI online using Naturally Speaking. In October, 2000, I came across the Harvard RSI Action website. Although I’d been to the site before, somehow I had missed that there was a Sarno faction in that group that was making available its own success stories audiotape. I sent an email request. With some persistence, I eventually received a reply from Rachel that she had the tape and would send me a copy.
On December 8, 2000, I had an MRI performed by Dr. James Collins at UCLA which demonstrated conclusively that blood flow was severely restricted in my upper chest, confirming Dr. Newkirk’s TOS diagnosis as well as Suparna’s view that my RSI problem stemmed from my upper chest, back and neck. The MRI also corroborated what Chris Carrigg had taught me: RSI is all about blood flow. This MRI also turned out to be extremely valuable in my negotiations with both Unum and SCIF.
I was discouraged by Dr. Collins’ view that I was really messed up. In his opinion, I needed to have my topmost rib removed. After nearly 2 years of various kinds of treatments, had I really made any substantive progress on the core issue?
For Christmas, I drove a couple of hours to my folks’ home in Delaware. This was the first time I had done significant driving in a couple of years. My symptoms were only mildly exacerbated.
At Suparna’s insistence, I started playing guitar again in January, 2001. Just a little bit, a couple of times a week. I noticed that, although I certainly wasn’t symptom free, it took about 10 minutes before the pain stopped me. This was a huge improvement over not being able to play at all.
Out of the Drink
Also in January, 2001, I received Harvard RSI Action’s Sarno Success Stories tape. Although the audio quality of this tape is abysmal, I learned a great deal from listening to it, especially Rachel’s opening remarks. I finally had testimony, from someone with whom I could identify, that Sarno’s approach had worked for her. Further, her account of her months of struggle – not the instant miracle cures touted in Sarno’s book – gave me renewed hope.
So inspired, I did further research online and found Dr. David Schecter’s materials as well as mention – in an old post on (what was at the time) deja.com – a book called Rapid Recovery from Back and Neck Pain by Fred Amir. I ordered both.
Meanwhile, Vinnie had some relatives coming to visit from out of town, and I had to find somewhere else to live. In spite of the progress in my health, the quest to find a new apartment made it appallingly obvious that I was still far from ok. After a weekend of driving around Allentown, making notes, phone calls, and filling out applications, I was flared up severely.
Near the end of January, I spoke to Rachel on the phone, and she patiently tried to explain her understanding of the mind-body nature of RSI to me. A few days later I was talking with a fellow RSI sufferer over the phone, attempting to convey what Rachel had told me. Without warning, something clicked inside me. It was like learning to ride a bike – suddenly I was balancing, and I wasn’t sure what had changed. As soon as I got off the phone, I went to the computer, and I played a very hand-intensive game (Tombraider IV!). For 2 hours!
Did I experience pain? Yes. But it was Mickey Mouse pain compared to what I would have felt hours before. It didn’t prevent my fingers from doing what they needed to do. And most importantly, when I stopped playing, the pain gradually went away!!!
What happened? Somewhere in my brain, a switch controlling blood to my arms had been switched from off to on. Previously, whenever I left the gym or the physical therapy office, my mind had switched off the blood flow, and I had consistently slipped back towards a dysfunctional state. Now, in an instant, my body finally started to heal on its own.
When I arrived at the gym the next day, I told Bella not to set up the lat pull-down machine for me; I could do it. One eyebrow went up. I set the weight to 60 lbs, which was triple the weight we’d used two days before. Bella protested, but I insisted. “I’m better,” I declared. I pulled the weight comfortably. Bella smiled.
A few days later, I received Amir’s book as well as Dr. Schecter’s tapes and workbook. Schecter’s advice was along the lines of Eisendorf’s, and I didn’t want to go down that road again. On the other hand, the steps in the latter half of Amir’s book were just that: specific, simple steps to follow. Following the steps didn’t even require me to believe anything. Even though I felt I was already cured, I saw how the steps would solidify my new state of well-being, and I began applying them.
I saw Suparna only five more times. The last time was to go bowling!
I started playing guitar everyday. I continued to use much heavier weights in my upper body exercises at the gym. I incorporated Fred Amir’s advice into my daily routine: I set goals (large, medium, and small) and rewarded myself for achieving them. One day I walked into Suparna’s office with chocolate cake and announced, “It’s part of my new program!”
A week after my breakthrough I was in Boston interviewing for a part-time teaching job. An old college buddy had lined it up for me. I was fortunate, because jobs were not as common as they had been a couple of years ago, and I still had some doubt as to whether I was ready for a full time job. Before I started work, I got clearance from Dr. Newkirk who still was, as far as insurance was concerned, my primary treating physician.
I set about doing everything that I had been doing prior to the onset of my RSI. When I arrived in Boston, I took up the drums and took an ashtanga yoga class. I played computer games. I was euphoric! When I picked up the bass guitar, however, I experienced some pain. Yikes!
What was going on? I was performing similar, arguably more strenuous activities with my hands without pain. In fact, I hadn’t had much pain at all for a couple of months at this point. I decided that I needed to decondition the bass separately; that in fact, each activity needed to be deconditioned individually. I just hadn’t realized it in the beginning of my recovery when I started doing everything I could, because I still had a small amount of pain. Only after having no pain for a while could I notice the problem. So I kept playing the bass, and the pain went away. This was a critical lesson for me, because I would soon return to work full-time, and that was very challenging.
When the job in Boston was over, I took a few weeks off to decide on my next move. I played Diablo II pretty much full time for a month (except when I wasn’t doing yoga or playing my guitar). I persuaded myself if I could mouse like that, I was ready to go back to work full-time. I decided to return to the Bay area where I had more friends and job opportunities; besides, my belongings were still in a storage bin in San Francisco.
In July, 2001, I drove across the southern US at a few hundred miles a day (with extended stops in Nashville – which rocks, even if, like me, you don’t like country music – and the Grand Canyon).
When I got to California in August, 2001, I started another part-time consulting job. Once I had the ok from Dr. Newkirk on August 31, 2001, it became a full time programming job. I was excited to be back in full swing. However, by the end of my first full day, I had some RSI symptoms. For an instant I was afraid I would fail. Then I realized that my fear was the root of the problem.
I was reminded of my difficulties in playing the bass. I was asking my mind and my body to make the biggest leap yet; it wasn’t surprising at all that I had some symptoms. I regained my confidence. I had to keep working at this positive outlook for nearly two weeks, when my symptoms went away completely.