Written by Keven Mosley-Koehler for the RSDSA blog.
Physical activity has always been a defining point of who I am. I grew up as a ‘tomboy’, spending most of my time outdoors climbing trees, swimming, or ice-skating on the nearby river, and playing football with the neighborhood boys. As I got older, working hard to excel in athletics became a major focus. Once in college, it seemed natural for me to get undergraduate and graduate degrees in physical education, and then later to manage employee fitness and recreation programs for various workplaces in Seattle. And, when I wasn’t competing in some sport or working, I was usually out “recreating”- hiking, biking, or skiing to my heart’s content in the Pacific Northwest, an outdoor “mecca” of sorts for active types.
Such an active lifestyle led to various injuries and aches over the years. This helped me get to know my body and its healing processes well. So, when I was 32 years old and sprained my ankle playing soccer one day in March of 1993, I knew that my body’s reaction to this injury was anything but normal.
Unfortunately, my physician at that time lacked the education and experience to diagnose anything except a severely sprained ankle. Five months later, after seeing numerous doctors, I was finally correctly diagnosed with Reflex Sympathetic Dystrophy (RSD). By that time I was on crutches, in unbearable pain, and had the classic symptoms of the condition such as extreme temperature changes, burning pain, discoloration, edema (swelling), atrophy (tissue wasting), hyperalgesia (exaggerated pain response), and nail and hair growth slowing in my affected leg. However, once correctly diagnosed, I was referred to an anesthesiologist for what, at the time, was considered the appropriate treatment for CRPS. Unfortunately, the useless protocol consisted of numerous sympathetic nerve blockades over a period of three months, none of which improved nor stopped the steadily worsening symptoms.
Let me back up just a bit before proceeding. When a local and well-respected sports medicine doctor had correctly diagnosed my condition and referred me to the anesthesiologist for nerve blocks, he told me something very important to gaining control over CRPS. He said, “I want you to pool walk for as long as you can every day, twice a day if possible. You have got to keep using the leg no matter how bad it hurts.” I took his advice to heart and, for the next year, no matter where I happened to be or how far I had to drive, I found a pool to walk in every day of the year except for holidays that pools are not open. However, in spite of the daily pool walking, the CRPS progressed and the symptoms worsened. I continued pool walking though because it gave a little boost to my confidence. That daily act, regardless of the pain and inconvenience, was my way of taking action against a condition that had by then taken almost everything else away. This disease had slowly robbed me of my self-confidence, my joy for life, and my independence.
At the time I was diagnosed with CRPS, the aforementioned physician also noted how my anxiety level had steadily increased since the day I had that triggering ankle sprain. Anyone who has had a painful illness go undiagnosed for months can relate to the tremendous fear and distress generated by the absence of a clear diagnosis and treatment plan. He suggested that I seek psychological support to better cope with what he termed to be “the biggest battle you will ever face, the battle against CRPS.” I took his advice to heart, and psychological support proved to be therapeutic.
While undergoing the nerve blocks, I participated in physical therapy with a therapist who was not experienced in working with CRPS patients. His protocol may have contributed to the progressive worsening of my condition. Physical therapy that would be normally applied for the rehabilitation of a soft tissue injury, such as a sprained ankle, may be too progressive for CRPS, increasing at a rate that may exacerbate the condition. Additionally, I sought other forms of treatment such as acupuncture, Transcutaneous Electrical Nerve Stimulation (TENS), ultrasound, and other alternative therapies. After the period of unsuccessful nerve blocks and these other methods, the anesthesiologist referred me to the University of Washington (UW) Pain Center. He said that a physician there “has a special interest in CRPS.” Little did I suspect that this referral would be the beginning of a several-year remission/recovery process.
Finding the Pain Center
Eight months after developing CRPS, I hobbled into the UW Pain Center. By now I walked with either a cane or crutches; my foot was swollen, blue, and ice-cold; the hair on my legs and toenails had nearly stopped growing. The slightest movement or touch caused extreme pain in my foot that would last for hours. My life consisted of forcing myself to go to work, sit “captive” at my desk trying to force my attention off the throbbing pain and onto my job, then go to the pool, limp around in the shallow end, and endure the drive home. The vibration of the vehicle caused excruciating pain. Evenings at home were nothing but emotional “blackness” too weary to describe. Depression had really set in, my weight dropped to 98 lbs, and my left calf muscle shriveled profusely from disuse. My mental state matched the state of my leg – a sort of withering of spirit, of tissue, of life. With a horror I wanted to deny, I observed as the CRPS symptoms began to creep into other foot and, for a period of time, it invaded one shoulder (but then subsided within a few months). I slept poorly, and had random crying spells accompanied by extreme withdrawal from everyone. I felt like a tremendous burden to my husband of just two years. I worried that he received a lot more than he had ever bargained for when he said those two words, “I do.” In addition, to my despair, some of my physically active friends drifted away from me, mostly in disbelief, unable to accept that a simple ankle injury so long ago had become so debilitating and life-altering.
Dr. Bradley Galer was the doctor at the Pain Center with the “special interest in CRPS.” Right away, that first morning, he performed a lidocaine infusion in-house to see if oral lidocaine (Mexilitene™) would help with my pain control. The infusion quickly and mercifully reduced the pain for several minutes, so he prescribed this drug as my first CRPS medication. He then asked me to participate in the Pain Center’s new trial six-month outpatient CRPS program. The multi-disciplinary treatment program would consist of physical therapy (PT) four days a week, structured pyschological support, and ongoing medication treatment. I wholeheartedly agreed to give it my best effort … there was nothing else to hope for.
Three weeks later, I went to my first PT session on crutches and with much fear and trepidation. My physical therapist, Sherri Antonucci, explained the “quota based” progressive exercise program devised especially for CRPS patients. First, she and I established my “baseline ability” to perform a whole series of various stretches and strengthening exercises for the lower extremities. This meant that I did as many repetitions of each exercise as I could. On that first day, I could perform between zero and five repetitions, depending on the exercise and body part. Every day I was to add one repetition for each exercise. After I could do 30 repetitions of an exercise (which took about one month), we would add some resistance, start at five repetitions and repeat the process. ‘Quota-based’ aerobic exercise was also one of the daily requirements.
In addition to this regimen, physical therapy included a gait ‘retraining’ program where I gradually learned how to walk again first without crutches, and then without a limp. My brain seemed to have forgotten how to direct my body to walk normally, and it took several months to achieve either task. Occasionally, therapy would include a deep tissue massage or passive stretching, but this was rare. Most of the PT sessions were hard work and unnerving, because I never knew what sort of new activity she might decide to add.
Function, Not Pain Level
Early on in PT an event occurred that served as an attitudinal “wake up call” for me. It was my fourth day and my foot felt as if it were on fire and throbbing. The PT had really exacerbated the symptoms. After five minutes of exercise, I told Sherri that I was in terrible pain and could not do the exercises that day. I will never forget what happened next – a life-changing moment! Sherri looked at me and said “If I EVER hear you say the ‘P’ word in here again, you are no longer welcome here! We measure progress here NOT by your pain level, but by the EXERCISES you accomplish!” Shocked by this statement, I went home distressed. Not measure progress by pain relief? What is she saying here? This could not be…does this mean I have to live with this disabling pain forever? I had just assumed that the program was designed to help people get better, not simply learn to live with this incredible pain! I thought hard about this and slowly realized that focusing on my pain level and discomfort was not productive. Sherri was right: I needed to focus on the positive, which was my increasing function. I recall Dr. Galer once saying that the only way to beat CRPS is to physically work through the excruciating pain, but in very small steps, such as with the quota system. He said that with chronic pain, there is no harm being done to the body part even though pain signals are screaming to stop. He said you must train your brain to accept this fact, and this will help turn the pain signals down.
So, increasing function became my new focus. I still had ongoing pain, but kept doing the daily exercises anyway. It was impossible to ignore the pain though, and it continued to rule my world…progress would come as one step forward, two steps back, followed by a little progress, then another set-back. The pain had not noticeably improved, but after a few months I was able to do more physically.
The second and very critical part of the CRPS program consisted of psychological sessions with Dr. Lauren Schwartz, who specializes in management of chronic pain. Initially we talked about how CRPS had disrupted and changed my life for the worse. It was cathartic to talk about this to someone who understood the devastation of chronic pain and the loss of who one is. But then she began to focus the sessions on developing coping techniques, such as progressive relaxation and deep breathing. We also began experimenting with controlling pain via my thoughts and attitudes.
One hypothesis is that CRPS is a malfunction of the autonomic nervous system, which runs our involuntary body functions such as body temperature, blood pressure, heart rate and respiration; smooth muscle function; the sweating process, etc. Biofeedback is a process of learning how to voluntarily and purposefully control these body functions with one’s thoughts. Dr. Schwartz believed it might be possible for me to gain control of these ‘involuntary’ body functions with my thoughts, thereby reducing the CRPS symptoms. She taught me how to visualize my ice-cold foot being warmed by a fire, the foot gradually warming as the heat penetrated. She also reinforced the importance of visualizing myself as healthy and pain-free, walking smoothly without a limp or pain.
I have always been a visual person. As a top-flight competitive tennis player in high school and one year in college, I regularly visualized myself playing well, making tough shots, staying focused, etc. Through tennis and other competitive sports, I learned that mind and attitude impact our body and our performance. With Dr. Schwartz’s help, I used these techniques in my battle against CRPS. It did not come easily however, and I had to practice a lot before I could actually visualize myself walking down a path without a limp and without pain.
The next step in my therapy was to visualize myself healthy and pain-free, jogging down the street. Again, it seemed to take ages to conjure this up, but the mental scene eventually emerged, bringing a flood of confidence and a sense of control. I felt that if I could make my mind believe that I could walk properly and without pain, then possibly, in time, my body would follow suit.
A breakthrough came for me one day when I was practicing visualization. Not only did I see in my mind’s eye the raging fire next to my foot but I could also visualize the constricted and narrow blood vessels in my foot opening up wide and allowing the hot blood to course through them and into my foot. Then suddenly I had a short dizzy spell and my foot simultaneously warmed up….but it stopped as quickly as it had come. However, I had actually made a physical change over an involuntary response via my mind, which was a breakthrough in my therapy.
During this treatment time, it dawned on me that since getting CRPS, I had somehow made a psychological disassociation between my brain and my foot. Had I unconsciously done this in order to cope with the physical degeneration of my foot? How else can one deal with seeing a part of one’s body slowly die off? I had felt so betrayed, shocked, repulsed, by the physical changes in my foot over the last several months. However, I learned that by psychologically dissociating myself from the limb, I had probably made the CRPS even worse, since by doing so my brain had slowly shut my foot off from its life giving functions.
With the medical team’s help, I realized that healing was rooted in re-integrating my dying foot back into myself. One method that worked well eventually became a nightly routine. Every evening after work, I rolled up my pant-leg and took off all my socks (I usually wore two or three pairs all the time to try to keep warm). I would proceed to force myself to look at my atrophied and discolored leg and send it positive life-giving thoughts. In those several minutes each night, I tried to open my mind and heart back up to the dying limb. Then John would rub and massage the leg for several minutes. By having him validate and acknowledge the condition of the leg, I was more able to re-accept the limb back into myself, as a part of me. Rubbing my foot also increased circulation. Initially I could tolerate rubbing for only a few minutes due to resulting pain, but as my skin became de-sensitized to the stimulation, I learned to tolerate several minutes.
Over time these short dizzy spells and blood flow bursts became more frequent. They would happen periodically when I was doing visualization or they would happen unexpectedly at any moment. To me, these signs indicated progress. Somehow the visualization, positive “foot talk”, daily exercises, pool walks, nightly massages, and pain medications had begun to slowly turn the tide. The combination of strategies was tediously wearing down the CRPS.
Part of the psychology of recovery for me meant avoiding any negative information about CRPS, including negative articles, Internet chat rooms, stories, and research studies. This did not mean that I avoided all information about CRPS, but instead I filtered the information, choosing to read only the positive and encouraging news while leaving the rest behind.
Pain Medications and Their Side Effects
The third program component centered around medications to reduce and control pain. As mentioned earlier, lidocaine helped take the edge off the pain. However, since lidocaine is an anesthetic, and since the oral form doesn’t discriminate on what part of the body it acts on, it also appeared to numb my mind and senses. My food tasted bland, my mouth was bone-dry, my emotions seemed a little muted, and I felt fuzzy-headed.
This medicated mental and emotional “fog” did not serve me well either at work or at school. New concepts were hard to grasp. Things often felt surreal and I no longer felt like “myself”. But the medication took the edge off the pain somewhat and allowed me to tolerate the daily exercise sessions, which were a critical part of the program. Therefore, I was willing to tolerate the burden of the side effects.
After a few months Dr. Galer added an anti-depressant called paroxetine hydrochloride (Paxil™) to the drug regimen. In addition to improving my mood, it also had a pain-reducing effect. However, it made me more groggy. Neither Paxil™ nor lidocaine completely stopped the pain or the flare-ups, but they did help reduce the pain to a more manageable level.
Attitude: We Can Create Our Reality
When someone has an ailment and is struggling to get well, is it more healing to portray oneself to the external world as healthy and well, or is it more healing to let others know you are hurting? I chose a path somewhere between the two and I believe this middle road was important to my recovery.
I believed that if I accepted myself as having CRPS then it would become my reality because I would be living, behaving, and functioning in a way that would cause the world to respond a certain way to me. In essence, I would be sending both verbal and non-verbal messages to the world that CRPS was my “fate.” A vicious cycle would then ensue and my world would become a sort of “prison,” treating me as “disabled.” If I let this happen, it would probably become one battle that I most likely would not win. Therefore, it became critical to me to keep my condition concealed to the “public” as much as possible. In this way the world would continue to respond to me as a healthy and normally functioning individual.
In order to deal with the fact that I had CRPS, I presented a private self to my family, friends, and physicians and a public self to the rest of the world. The private self allowed me to hurt, feel the unrelenting pain, and share my troubles with family and close friends. My public self, however, attempted on a daily basis to deny to the general public, various acquaintances, and co-workers the pain and hurt I was experiencing. Instead I portrayed myself as healthy, painfree, and as capable as anyone else. The world then responded to me in this way. I hid the problem as well as I could, went out of my way to use my leg normally, to not be treated any differently, and to carry on all of life’s responsibilities as normally as possible. “fake it to make it” was something a friend who was aware of my health problem once whispered to me. I took that slogan to heart and repeated it often, especially on those days that faking it seemed especially hard.
Life Goes On
Although getting to work and functioning as best as possible each day was still so hard (the tiniest movements caused my foot to ache terribly), it created a distraction from the pain and allowed me to avoid falling completely into a cycle of self-pity. As an Injury Prevention Specialist for electrical utility employees at the City of Seattle, my job was to develop physical re-conditioning programs for injured employees, as well as make appropriate modifications to their work equipment and work environment to minimize re-injuries. Focusing on employees’ needs and on their recovery was indirectly healing for me.
In addition to working full time, I attended graduate school on weekends. Both work and school kept my thoughts directed away from myself and also forced me to physically move about, use my leg, and get out of the house nearly every day.
After three months of religiously attending and participating in the CRPS program, I was able to do more physically than before, but the pain was still incredibly limiting. I decided to add one more piece to the exercise puzzle. I started wearing a pedometer. I kept track of the number of steps I took each day, careful not to go more than a certain number of steps further than the day before lest a flare up be triggered. The number of steps I initially started at was about 200 per day. Each day I would add about 20 more steps. If it was nearing the end of the day and I had not yet put in enough steps to match the prior day’s number I would force myself to walk the needed number of steps regardless of pain. The pedometer method fit well into my other quota-based exercise scheme, and it helped reduce the frequency of flare-ups because it eliminated the guesswork of how much I could safely walk.
Another “treatment” that I began applying of my own accord was nightly hot baths. They were calming and soothing and they worked well for increasing circulation in my leg. They also warmed me up all over since one of the systemic (body-wide) side effects of CRPS for me was being cold. I often wore layers of sweaters and used several blankets on my bed year-round and was constantly chilled.
By this time, approximately four months had transpired. My gait had improved but I was still noticeably limping. My therapist was not satisfied with our rate of progress and was frustrated that I had not stopped limping in spite of months of therapy. At one session she strapped a device onto my thigh that would deliver a stimulating electrical shock to my quadricep muscle in the middle of a step. She explained that my thigh muscle was not still “firing” at the right time. The device forced the muscle to fire at the right time thus reducing the limp. I recall a slight dizziness each time I took a step as if my brain was re-programming itself. For the next several sessions I walked with the device and tolerated the dizzy spells. My brain and thigh muscles eventually learned how to work normally together once again.
It was around this time (month four of the program) that a very encouraging phenomenon began to occur. For a few seconds the burning aching unbearable pain in my foot would completely stop! Sometimes bursts of warm blood into my foot would accompany this “pain intermission”. The relief would last for only a few seconds but it was a sign to me that something positive was occurring. Could it be that my nervous system was slowly, finally, normalizing itself?
The pain intermissions did become more frequent and began to last several seconds. Around this time my husband noted during the nightly massages that the skin color was looking healthier. We could now see the veins protruding a tiny bit in my foot just below the skin, a sign that had long been absent.
Sherri discharged me from physical therapy one month earlier than expected. I was doing too well to need the final month. Although formal physical therapy at the clinic was over, a life-long commitment to daily home exercise was just starting. I still invest about 1.5 hours in home exercise every day. The next several months following program discharge proved to be challenging. My recovery continued on its roller-coaster path of constant ups and downs.
Pain flare-ups were common. When the flare-ups had first developed several months earlier, they were psychologically and physically devastating and usually resulted in a bout of feeling very depressed. But during the program, the medical team helped me change my attitude. The team taught me that, although during a flare-up it may be appropriate to cut back on exercise, completely stopping all activity only worsened the pain and extended the flare-up. They helped me build the confidence to continue exercising at a reduced level throughout the flare-up, in spite of the tremendous fear exercise provoked. I also learned to have a “plan” in place to help keep me busy and occupied while the flare-up lingered. My plan included having a good book nearby and ready to read, seeing friends, going to movies, spending time with my husband. The goal was to keep my mind and emotions occupied until the flare-up passed.
Although the flare-ups continued after the program, I learned how to better cope with them. Over time, they became less frequent and of shorter duration. One post-program flare-up was particularly bad and sent me back to the Pain Center. I had been riding my bike one day, twisted my knee, and to my shock, CRPS symptoms developed in my knee. Sherri immediately got me started on some special exercises, and Dr. Galer prescribed a new drug to add to my current ones. This new drug was gabapentin (Neurontin™). I learned that Neurontin™, an anti-convulsant, had recently been used successfully to treat nerve pain.
Within about two months, the Neurontin™ began to deliver some exceptional pain-reducing benefit. I was amazed and determined that it was one more helpful tool to add to my arsenal of CRPS weapons. It was also the final tool that I needed because from that time on, my CRPS symptoms continued to gradually diminish.
Over the next two years, I continued all of the daily recovery strategies religiously, and gradually added and changed my exercise regimen to incorporate things like golf, cross country skiing, and low-impact aerobics. I added new activities with great caution, applying the quota-based system of progression to everything that I started. Usually I developed some mild pain and aching when I started a new activity but it would disappear after a few days. Without applying the quota system, a long-term flare-up would probably occur. I have learned great patience as a result of having CRPS.
Gradually, I gained some weight back and my calf muscle increased to a more normal size. I also began wearing a larger variety of shoes which I had been unable to do since developing CRPS. The temperature of my foot slowly became more normal although on cold days to this day, it still remains very cool.
Tapering off Medications
After two years, Dr. Galer and I decided it was time to start tapering off the medications. We started with the lidocaine first, and then Neurontin™. It took about a year to get completely off of each drug and tapering was not without its problems. The final medication to be eliminated was Paxil™ and this seemed to give me the most tapering trouble. Each time I tapered the dosage, I would develop aching pain that would simply not go away unless I went back up to the original dose. It took nearly a year before I was able to quit taking Paxil™.
My Current Remission Regimen
To stay healthy, I stretch and walk three miles daily, do some form of aerobic exercise two to three times a week (biking, stair climbing, rowing, swimming, etc.), and lift weights one to two times a week. In the summer, I play golf and hike. Periodically, I massage my foot and I take hot baths almost nightly to increase blood flow to the extremities. I avoid contact sports, such as soccer and basketball, because I am aware that injuries can trigger new bouts of CRPS. I have not yet tried other non-contact sports such as tennis, but plan to in the near future.
I have found that if I miss just one day of exercise, my foot will begin to ache and subtle CRPS symptoms will creep back into my foot and leg. Therefore, regardless of the weather, or how ill I happen to feel (for example the flu), I walk at least 45 minutes nearly every day. To help keep me in the walking habit, last year we adopted two very active and energetic Australian Blue Heelers, who need a lot of exercise.
The question has been asked: Why did the CRPS go into remission? None of my care team is really too sure. I want to share my experience with others who either treat or who have CRPS so that they can have hope and something to believe in, and that is the reason for writing this article. Maybe there are one or two new strategies here that are new to other CRPS sufferers and can be one more strategy they can add to their treatment plan. Here are my thoughts about what specifically helped me recover from CRPS.
First, there was no one treatment or modality that made me better. It was the combination of treatments, attitudes and strategies that worked synergistically. Each treatment by itself probably would not have been effective but by being combined they gradually began to work.
Second, I was relentless in applying the treatments regardless of whether progress was being made or not. I focused my energy on the PROCESS of getting better not on the OUTCOME of getting better. This focus gave me the persistence to spend two hours a day on therapy, to accept the side-effects of the medications indefinitely, and to keep to my treatment plan, even when results were not forthcoming.
Third, the treatments and strategies were applied consistently over a period of years. I believe that it takes a very long time for improvements to occur. It is imperative to face the condition with tenacity and a commitment to continue with the plan for as long as it takes.
Fourth, I keep my mind and emotions off of my problems as much as possible by keeping involved in projects and activities that made me feel good about myself and gave me a sense of control. CRPS has a way of trying to take over every aspect of someone’s life and it will succeed if one lets it. One thing CRPS can never control is attitude. As Dr. Charles Swindoll has written, “The longer I live, the more I realize the impact of attitude on my life. Attitude to me is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. I am convinced that life is 10% what happens to you and 90% how I react to it. And so it is with you….we are in charge of our attitudes.”
Finally, in spite of the pain and debilitation, a person with CRPS can try to avoid allowing the world to treat you any differently from anyone else. See and present yourself as well, healthy, and as having something valuable to offer no matter what your physical or emotional state. You will find that the world will reflect this healthy attitude back to you in a healing and positive way. This, in turn, will help you create a new personal reality, one based on health, control, and well-being.
Since writing this story, I have had at least one significant recurrence of CRPS, initiated when I twisted my knee. I immediately got back on the medications and dropped back to a very low level amount of daily structured physical activity, adding a bit more each day over a period of several months, until once again I was completely symptom free. So the condition remains something that seems to be able to re-surface with minor sprains and strains to soft tissue. Therefore, I am cautious and work daily to keep the symptoms in remission by exercising and by trying to minimize stress in my life. But I know that should an exacerbation arise, if I get back on my rehab “plan” and stay with it, the symptoms will dissipate again in a more reasonable timeframe that what occurred when I first developed the disease.