The Onset and Diagnosis of CRPS
Transformation and Hope—The Means to Recovery
- Quota-Based Physical Therapy Exercises
- Setting Goals
- Texts and Tales of Transformation and Hope
- Keeping a Log and Journal
- Humor and Healing
- Music
- Spiritual Practices
- Massage
- Psychological Support
- Keeping My Foot Warm
- Medication and Medical Interventions
- Fulltime Work
- Working on Sleep
- Eating Well
- Starting Treatment When CRPS Symptoms First Began
Things That Didn’t Help Recovery
- Lumbar Sympathetic Blocks
- Acupuncture
- Thermal Biofeedback
- Physical Therapy without clear goals
- Dealing with an HMO
Appendix 1: My Goals for Therapy and Recovery from CRPS
Appendix 2: Physical Therapy Exercises
Service to others has been the focus of my life and work. I was reared in a parsonage where Jesus’ command to love our neighbor was part of daily life. Living next door to the church, I remember a transient at our door that needed money for gas and groceries. My parents provided what he needed. Such formative experiences led me to follow my father’s profession into the ordained ministry. During my years in ministry, I helped resettle refugees from Southeast Asia, organized congregations to respond to the political causes of hunger, demonstrated against the U.S. backed war in El Salvador, was arrested for civil disobedience as part of the anti-apartheid movement, and spoke out for the ordination of gay and lesbian seminary friends. In my years as a pastor, I provided spiritual direction, preached and taught classes, and prayed with the dying in nursing homes and hospitals. I took a leave from parish ministry eight years ago, but continued to be active in my congregation and also volunteered at my children’s school. My current work at the University of Puget Sound is grounded in a desire to help students obtain an education that will help them contribute something of value to the world.
When I was diagnosed in February 2002 with Complex Regional Pain Syndrome, a chronic and painful condition in my right foot, the ability to serve others unraveled quickly. The demands of therapy and recovery meant re-ordering my life, discarding many activities to cope with the essentials of life: managing my 40-hour work week and parenting two elementary-age children. I was 42 and in the middle of divorce proceedings. The children lived with me 9 of every 14 days. I write this essay after 16 months of treatment in order to provide support and hope to others who experience the challenges of CRPS. Recovery can happen. For those with CRPS in a lower extremity, it’s possible to enjoy an active life again. I walk 2.8 miles each morning, mow the lawn for an hour on weekends, ride my bike or swim four days a week, and play soccer and basketball in the backyard with my children. I gradually have resumed volunteer work at my church as the amount of therapy time decreases and energy returns for other activities. I write also to share with those in healing professions the multidisciplinary approach to recovery that worked for me so it might help you understand and assist those who have CRPS.
Before writing, I hesitated to discuss my recovery with others for three reasons. First, I’m not yet healed. I’m not even sure what it looks like with CRPS. People observe that I’m walking with a bounce in my step again, and remark that they’re glad to see I’m fine. They are wrong. Yes, I’ve made remarkable progress that I celebrate. But, I’m still not fine. The pain persists even as pain medication has been reduced significantly. My foot still turns red after certain activities; the nerves still do not react normally at all times. I still must follow a treatment protocol each day to keep the symptoms from returning and retain my level of function. Setbacks continue to flare up the pain and require that I return to exercises needed at earlier stages of the recovery process. I must pace myself at work and home and be clear with others when enough is enough. The end of this is not yet in sight, but I have accomplished all my functional goals in therapy. My hope is that though I still deal with this illness, there is something in my experience that might enable others to have courage to move through the challenges and reach their goals in therapy.
Another hesitation in writing arises from the uncertainty of exactly what was needed to return to a high level of activity, and what’s needed to stay in remission. In the months of treatment, I entered a world of therapists who measured and evaluated my progress with strict repetitions of quota-based exercises, and doctors who prescribed medication to cope with the pain. Recovery, though, included more than what therapists observed and what doctors prescribed. My healing has included facts that aren’t easy to prove. Is it worth sharing these anecdotal experiences that are outside the bounds of empirical science?
Dr. Denis Burkit once said, “Not everything that counts can be counted.” I found this to be true in returning to a high level of function again.
My last hesitation to discuss my recovery is the obvious realization that my experience is unique. I responded to the symptoms and treatment of this chronic pain condition with meanings and feelings that others might not share. I hope that the particulars of my story might connect with something familiar in your suffering and healing, or your practice of therapy and medicine. Perhaps anything unique may offer new hope, courage or wisdom in dealing with CRPS.
1. Remen, Rachel Naomi. Kitchen Table Wisdom: Stories That Heal. Riverhead Books, New York, 1996, p. xvii.
The Onset and Diagnosis of CRPS
My podiatrist diagnosed Reflex Sympathetic Dystrophy on February 21, 2002 but it was four months earlier on October 13, 2001 when a throbbing pain in my right foot woke me at 2 a.m. from my usual deep sleep. The next day the pain was unbearable and the only shoes I could wear to work were a well-worn pair of running shoes, with the laces as loose as possible without the shoe falling off. I began limping, couldn’t sleep well and found driving was difficult because of the pressure required to use the brake and gas pedals. I have never been one to seek medical help quickly. I birthed two children without taking drugs, and figured I’d get over this foot pain. I figured I must have somehow broken a toe and the pain would just go away in time. Instead the pain increased, and so after four weeks I saw a podiatrist who determined I had “Morton’s neuroma”, a swollen nerve between the third and fourth metatarsal bone. I received two shots of cortisone near the site of the neuroma over the next three weeks. The pain persisted. Dr. Barrett then suggested orthotics, which made no sense since I could barely tolerate the shoe on my foot. I couldn’t imagine jamming anything else into my shoe and making it even tighter. My other option was surgery. Cut out the nerve, and he promised that with each day I’d be getting better rather than dealing with this downward spiral of pain.
I was not convinced, and so found a Chinese healer instead, one highly recommended by a friend. A session of acupuncture flared up the pain and triggered temporary swelling throughout the foot. A follow-up session with acupressure, however, brought welcome relief. Somehow, she was able to touch the foot without stimulating more pain. But regrettably, it was only for the hour I was with her. By mid-December I could not wear any of my shoes, and was hobbling in a pair of newly purchased Birkenstock clogs that had a gel pad built in for “added comfort”. I did Christmas shopping with catalogs, and pared down grocery shopping to a ten-minute sweep for what was on my pre-planned list. I learned to drive with my left foot after an unexpected nerve spasm shot up through my right leg causing the car to jolt to a stop in the intersection on Proctor. Weary from the pain and lack of sleep, I opted for surgery on January 16th.
Two weeks post-surgery, Dr. Barrett reported the surgery a success. He removed a nerve that was looped up like a snake forcing it to pop out when he made the incision. Never in twenty years of practice had he seen a nerve under so much pressure. At the next post-surgical visit on February 12th, there was a marked reversal in his prognosis. He lightly touched the surgical site and I immediately pulled back. His eyes widened with concern and what seemed to express a personal sense of failure. His only words were, “We’ve got to get this under control or there could be serious long-term problems.” With that, he hurried from the exam room, leaving me alone and bewildered. What happened to the glowing success from two weeks earlier? He returned a few moments later with a syringe and began injecting my foot without explanation, leaving me more confused. Three syringes later, he finally explained what he was doing: trying to warm up the foot with anesthetic in order to produce a vascular flush. The foot had swollen out of proportion to normal, and there was a dramatic decrease in temperature and there was an aura of pain so great that his nurse was particularly hesitant in changing the bandages from the surgical site. He told me I had Reflex Sympathetic Dystrophy, which I later learned is now known as Complex Regional Pain Syndrome (CRPS).
CRPS is a painful condition that affects an extremity – a foot or hand. When it develops, it often follows some trauma or injury, sometimes as simple as tripping over a shoe or minor sprain. Its cause is unknown, but the clinical symptoms include burning pain, changes in skin temperature and color, allodynia (i.e., pain elicited by stimuli that normally are not painful such as a sheet on a bed, or the wind on the skin), edema (swelling), and tropic changes such as shiny skin, hair loss or abnormal nail growth. It can also involve loss of bone mineral, muscle weakness and problems with motor coordination. Those suffering with CRPS develop a pattern of protecting or guarding the limb because of the severe pain. I was using a walker at home at the time of the diagnosis and relied on a motorized grocery cart to shop. I managed to limp about work without the walker, as I was embarrassed to use a symbol of disability in public. For some patients, they cannot recover use of the affected limb because of the chronic pain and resultant disuse. I experienced all symptoms except the tropic changes to skin and nails.
With the CRPS diagnosis Dr. Barrett sent me home with instructions to keep the foot warm. He gave me a prescription of Dibenzyline to warm the foot, I took a hot bath each night and wrapped my foot in a hot sock and blanket while at my desk at work. A week later I returned to my podiatrist who still had no good news. The nerves weren’t responding to this heat therapy. My foot was hypersensitive to any touch, and my ankle had swollen to the size of my knee. On the day of this appointment, I had taken the day off work because it was my children’s mid-winter school holiday, and planned to take them from the podiatrist to their dental appointments and then a movie. Dr. Barrett changed those plans. He and his staff made calls to a nearby physical therapy clinic and to my primary care physician and insurance provider. “You need to get into therapy today. Reschedule the dental appointments.” This was medical urgency I’d never experienced. So, with one more syringe of anesthetic, enough to relax my foot so the therapist would be able to touch it, he sent me to a clinic down the street.
The owner was on vacation, and so I got Jennifer, the substitute therapist in charge. Jennifer matched my podiatrist’s alarm over the condition of my foot. I sat on a molded plastic chair across from her as my leg and foot rested on her arm, now easy to hold with the anesthetic at work. She demonstrated how to get my foot moving again: pump my ankle, draw the alphabet with my toes, circle my ankle to the left, and round to the right, press my foot against an inflated beach ball, and out in the hall, I practiced rolling on my toes as I walked. She watched as I tried to imitate her instructions: pump, circle, draw, press, and roll through the toes. Good. Sitting back in the chair with my leg in her arm again, she then measured the swelling of my foot. Putting down the measuring tape, Jennifer leaned closer while still holding my leg in her arms, and with the clarity of a boot-camp sergeant she made clear what was required
“You need to do these exercises every hour, on the hour, and set a timer if you have to. Three times a day you need to elevate your foot, way up high, above your heart, for twenty minutes or more at a time, then massage the foot, especially the toes that hurt and the surgical site. Your priority is not your kids, not your work, not anything else. Your priority is these exercises, or you’ll lose the use of your foot. Can you do it?”
Tears streaming down my face, knowing that my 8-year-old daughter and 10-year-old son were awaiting my return home and counting on Mom to take them to the movies, I nodded Yes. I had little to say to this therapist. I felt like my life was just blast to bits. Never had I stared into the face of God and lived. I wondered how I could hold on. Being a religious person, I took some comfort in the knowledge that it is far more God who hold us than we who hold Him. Somehow, I’d get through.
2 2 mg. of Dexamethasone Phosphate plus 5 mg. of Triamcinolone Acetonide on the first visit, and then 20 mg. of Triamcinolone Acetonide mixed with Xylocaine and Marcaine twenty days later.
3 These symptoms are described in Robinson, J.L. Complex Regional Pain Syndrome. Bulletin: State of Washington Department of Labor and Industries, November 1997, PB97-05, p. 4.
4 The anesthetic used was Lidocaine, 1% and Bupivacaine, ½%.
5 Weatherhead, Leslie D. A Private House of Prayer. Abingdon Press, Nashville, 1958, p. 23.
Transformation and Hope—The Means to Recovery
When I left the appointment with Jennifer Leyen, I drove back to my apartment in tears. My kids were home alone and waiting to go to the movie I promised them. I needed to regroup and figure out how I could go on with my life and also deal with the relentless pain and expectations for therapy. We went to the movie anyway, and I began adapting to my new life. We took a seat in the second row and I propped my foot up and over the empty seat in front of me. I took along Jennifer’s beach ball and alternated between elevating my foot and pushing my foot on the ball under the seat. Thus began sixteen months of physical therapy.
Physical therapy exercises were just one component of what made recovery possible. As I describe the therapy and other means I used to overcome the CRPS pain and disability, the quota-based physical therapy approach was likely most important. The other strategies allowed me to deal with the challenges of therapy. Putting all the pieces together has enabled me now to walk with joy, dance in worship, bike with a friend, kick the soccer ball around the back yard and taper off the prescription pain medication. Over the course of treatment, I put in nearly 800 hours of working on this, some at medical appointments but mostly at home, the gym and the office. Doing the time was overwhelming while also working and parenting, but now that I can live well again, the ordeal was worth it.
Quota-Based Physical Therapy Exercises
The exercises were legion and evolved over time. I worked with three therapists during the 16 months. Jennifer Leyen got me started and instilled the fear of God into me so I took the work seriously. Then I worked with Bob Brown for two months until I ran out of insurance coverage. After a month of working on my own, I discovered Roger Allen who taught at the University of Puget Sound where I worked. He taught in the Doctoral of Physical Therapy program at UPS. By chance I was reading a staff newsletter and learned that he had a particular research interest in CRPS and had just returned from a continuing education event in Boston to train therapists on the latest ideas for treating CRPS. He took me on and introduced me to a quota-based approach to therapy. We worked together for the last 13 months of treatment.
The quota-based therapy method would begin by seeing how much of an exercise I could do, and then I was to do the same exercise the next day at home with just 80 percent of the number done at my appointment. I was then to add more repetitions or time to the exercise each day. As one exercise accomplished its purpose in helping my toes, metatarsals, and ankle move more normally, other exercises were introduced one at a time to help me move slowly and steadily toward more challenging activities. They were introduced slowly because of the pain, but became increasingly harder to help me reach my functional goals.
Roger also taught me that therapy for CRPS meant moving into the pain in order to feel less pain over time. Most every exercise hurt before it helped. Paper shoving and rolling on balls were two such exercises that fit this house of horrors approach to recovery. Moving into the pain was counter-intuitive. With acute pain, wisdom says to stop and rest. With the chronic pain of CRPS, movement is essential, even if it hurts. The best image I discovered to explain this was from a sermon preached by Rev. Emanuel Cleaver, pastor at St. James United Methodist Church and mayor of Kansas City. He describes sheep caught in a storm.
When a storm comes up in the cold of winter, and the wind comes from behind the sheep and blows the icy rain under their wool, they will freeze to death. As the storm comes, the sheep must turn to face into the storm. I do not suppose they choose to do that. Sheep are not very bright and must be carefully guided by the sheepdogs and shepherd. The shepherd and dogs turn the sheep to face into the storm so that they will survive.
So it was with Roger in physical therapy. He showed me how to move into the storm, and stayed with me during the process. Eventually I found the pain would pass after a few days of trying some new and more challenging exercise, with the results being that I was able to accomplish all the goals on my list.
The PT exercises I used to recover are found in Appendix 2. I tried to list them in the order introduced. However, as I experienced several setbacks during the 16 months of therapy, it meant I needed to return to exercises used earlier in treatment and begin again. Several exercises were done simultaneously with others. Recovery was far from steady, and the exercises evolved as pain and function ebbed and flowed.
Setting Goals
Within the first two weeks of starting therapy I wrote down a list of goals, the things I wanted to be able to do again and couldn’t at the time. I wrote down everything I could think of – both the mundane activities of daily living and the seemingly impossible hopes at this peak point of pain and disability. As the weeks and months went on, I added to my original list as I thought of things I wanted to accomplish. (My list is attached at the end of this paper in Appendix 1.) As I achieved one of the goals, I checked it off and felt a rush of satisfaction. This sense of joy in the midst of the pain and suffering helped me move forward to other goals. With more goals on the list, there were more reasons to celebrate as I accomplished some new thing. When I could do the harder activities on my list such as walking to work, riding my bike, dancing in church, and kicking the soccer ball in the backyard with Hannah, I treated myself to something nice – breakfast out, a new pair of earrings, a good book, a new sweater.
Texts and Tales of Transformation and Hope
Having earned a master’s degree and working at a college, I live in a world of books and naturally seek out new knowledge. The kind of reading that helped my recovery from CRPS had little to do specifically with CRPS. I searched the web for information on CRPS in the first week after the diagnosis, but after that only read CRPS articles when someone passed them on to me. Many of these I set aside for lack of time. My priority was not reading, but healing. And that meant hot baths, meditation, holding down my job, and hours of PT exercises. The reading I found helpful included books on the mind-body connection and inspirational stories of those who had conquered a challenging illness or grief in their lives.
From a sermon preached by pastor Jon Short at my church, I learned that transformation of suffering rather than acceptance of suffering was the theological insight I needed for recovery. The counselor I met with in the fall and winter told me that I needed to learn to accept my chronic pain in order to cope with the feelings of frustration and overwhelming demands of therapy combined with work and parenting. I couldn’t accept it, and began to feel like I failed counseling. My years in ministry were about challenging and changing unjust societal systems, not accepting what is harmful and hurtful. I brought that same attitude to my recovery from CRPS. It wasn’t fair and I wasn’t about to “accept it” like some mature stage of chronic pain akin to Elisabeth Kubler Ross’ stages of dying. Pastor Jon taught me that for people of faith, there is another stage when dealing with trials in life: transformation. By the grace of God, it’s possible to move beyond it.
Philip Yancey also argues that transformation rather than acceptance is the path to overcoming suffering in his book, Where is God When It Hurts? As I reached out to others by starting a chronic pain support group this year, learned to dance in worship again, and taught a class at church using Philip Yancey’s book, the CRPS experience was beginning to take new shape in my life. No longer was it simply an intrusion in my life, but the means to inspire and help others.
Susan Sonnenday Vogel’s book, And Then Mark Died: Letters of Grief, Love & Faith, was important as she brought hope in the midst of fear. When trying to cope with the searing pain of CRPS and the four months earlier when the neuroma disrupted sleep and my ability to walk, hope was elusive. Fear abounds with chronic pain: Fear of the pain itself. Fear of each new exercise that hurts before it heals. Fear it won’t get well. Fear I can’t do my job right when medicated, tired, confused and hurting.
What’s the pain like? Like a thousand tiny paper cuts, never cleansed, reopening with every step. Like scrubbing the kitchen floor and ammonia spills onto an open wound. Like Fourth of July sparklers spitting through my foot and leg. Like a Kansas City hail storm raging through my foot. Like Dante’s words in The Inferno when he wrote [my pain is] “….ever burning, but never consumed.” Sometimes I would get a break from the burning, the worst kind of CRPS pain, and just have these buzzing vibrations. These crawling sensations were not so painful but a distraction like a bad itch. Occasionally, I’d get a jolt of pain shooting up the leg, but this was rare after the neuroma was removed. Many times, the foot just throbbed and the ankle ached from moving through the day.
On an early spring shopping trip to Mervyn’s I took my third-grade daughter to buy new sandals. Remarkably, this daughter who scoured every store at the mall, and also Fred Meyer, Target, and K-Mart six months earlier for new school shirts, to no avail, found a pair of sandals she wanted in only 10 minutes. That was my outer limit for bearing weight and shopping in March. Elated we’d be going home, my fourth-grade son who came along also decided he needed new sandals. The strap on his pair at home had broken. Willing my mind to calm down, I told him, “Okay, but I’ve got to sit down, now.” And so I did: in the aisle, on the floor, as he opened boxes from the open shelves and tried to find the right pair he’d like and that would also fit. I hoped he’d figure out how to read the shoe sizes and styles on the box ends. I wasn’t getting up. It hurt too much. The clerk saw me on the floor as I waited for my son, my leg stretched out and pumping my foot to ease the throbbing and burning. No doubt she also noticed the heat wrap around my ankle, ever present in those first weeks of therapy. “There’s a bench over there,” she offered, pointing two aisles away passed the men’s running shoes. “It’s okay,” I told her. “The floor is closer.”
It was hard to believe the encouraging words of my physical therapists. One day, maybe six months to a year from now, I will be well, they told me. I felt like the caboose on the Island of Misfit Toys who had square wheels, and instead of hoping for round wheels, he simply hopes that Santa will take him to some girl or boy who will like a choo-choo with square wheels. I found it hard to believe the foot would roll smoothly again, and some days found that just to endure was enough. I am thoroughly American, enculturated with the belief that hard work will be rewarded. But after weeks and months of dutifully following therapy instructions and exercises, plus meditating and massaging the foot morning and night, for a combined total of two to three hours a day, my hard work did not consistently pay off. After respites from the narcotics, I’d be back on them as pain flared up with stress, setbacks, and new weight bearing exercises. Recovery was ragged and the fear persisted that the CRPS wasn’t going away.
So whence does hope come? Susan wrote this about dealing with the death of her son Mark 10 years earlier. She preached these same words at the seminary chapel when the twin towers collapsed in New York on September 11, 2001:
“The problem is that we always think of hope as grounded in the future. Wrong. Hope is always grounded in the past. Hope simply challenges us to remember, always, that we have survived everything in life to this point…”
I tried hard to be optimistic and imagine a healed foot during the months of treatment, a psychological strategy I’ve never found helpful. I couldn’t visualize the image. I had wrongly thought about healing and hope as grounded in the future…in a wish or dream that eludes me. From Susan’s grief experience after her son died, I discovered a hope that sustains me also. It gave me strength to get up each morning at 5:00 or 5:30 to walk the treadmill, shove paper across the floor, practice bearing more weight on the scales, and more.
Hope was not about being able to see a new future — I’m not optimistic enough. It’s also not about a present hope. My trust that the pain will someday end falters. I simply don’t have the faith to be made well. But I have found hope: a hope in remembering that I have survived life to this point: God saw me through the poverty of my seminary years when I had $4 in my pocket and 10 days until the end of the month. God saw me through a major depression in my late twenties when I wanted to say “No” to life and my brain was shutting down so I could not understand when others spoke to me. God wept with my grief in burying seminary friends who died of AIDS. God helped me endure the early months of my husband’s decision to move on and end our marriage. God saw the Israelite slaves to the Promised Land. God brought the Exiles home from Babylon. God raised Jesus on the third day. Jesus healed those who had faith, and those who had none.
By remembering God’s sustaining and mighty acts in my own life and religious tradition, in both recent times and long ago, I experienced a hope that sustained me through the tedious exercises and unrelenting pain that let go in only brief fragments of the day. My life was blast to bits for several months, but it was also the beginning of wisdom and hope. I found myself singing with Susan the song that expressed hope when Mark died. The words from the hymn Amazing Grace describe it best:
Through many dangers, toils, and snares,
I have already come;
’tis grace hath brought me safe thus far,
and grace will lead me home.
Other texts helped me find meaning, courage and strength: Marva Dawn’s Joy in Our Weakness: The Gift of Hope from the Book of Revelation, Norman Cousin’s The Biology of Hope, the PAX television series It’s a Miracle, the audio tapes from Bill Moyer’s Healing of the Mind series on PBS television, Bernie Siegel’s audio tape, Humor and Healing, and the book Mayo Clinic on Chronic Pain. Roger Allen also passed along some of the articles and research he’d written and used with treatment of CRPS.
Keven Mosley-Koehler was featured in a May 2003 Good Housekeeping article on chronic pain. She e-mailed her article describing her recovery, CRPS: Beating the Unbeatable. From her recovery she taught me to focus on the process of treatment and not the outcome. That allowed me to keep doing the daily foot work even as pain levels flared up and down and when functional goals were slow in coming. Her story was important because all others I met with CRPS were unable to work, seemed like a walking pharmacy shelf with all the medications they were taking, and were often depressed. Keven recovered, and so would I.
Keeping a log and journal of treatment
I kept a log that listed the exercises I did each day and recorded the medication I was taking and how often I took it. I felt like I had to keep fighting depression through the months of treatment. Common symptoms of depression include confusion, inability to concentrate and focus on a task. The mental fog I experienced may also have come from the Vicodin and Tramadol I was taking for pain, and difficulties sleeping. The logs helped me remember and stay on task. I also wrote out my feelings about treatment and the impact CRPS was having in my life at home and work, and my response to other stresses in my life that affected my ability to recover. Writing down my fears, frustration, exhaustion, and search for meaning and purpose helped me identify and deal with psychological and spiritual issues embedded in the relentless pain and demands of treatment. My writing was more fragmented than the exercise and medication logs. It’s scattered between a wire bound journal, letters written to family and friends, and email correspondence with my pastor and physical therapist.
Humor and healing
When diagnosed with CRPS I had already been walking with a limp for four months, and the 70-yard walk from my office to the bathroom down the hall at work was the extent of my aerobic workouts during the day. Observing my one-mile per hour pace, a colleague asked if I needed to request vacation leave to use the bathroom. Darrell’s humor took the edge off the eight hours of pain at work.
Another woman in my office used to sing me songs as I got new PT assignments to improve my gait. I practiced them while passing her desk on the way to the office copy machine so I could enjoy her songs. One gait exercise was to walk with longer strides. Peggy thought it looked like I was walking in the university’s commencement parade and so she began humming Pomp and Circumstance as I passed by her desk that week. Another gait exercise was to walk like Groucho Marx. This meant walking with a slight squat and knees bent. She then adapted Nancy Sinatra’s These Boots were Made for Walking and it became “These feet were made for walking, and that’s just what they’ll do.” Such episodes of laughter at the office took my mind off the pain.
Dr. Bernie Siegel explains the physiological mechanisms of why laughter promotes healing in his audiotape, Humor and Healing. If you want to get well, it’s good to laugh. Thus, I checked out every Garrison Keilor tape in the Tacoma library system, watched America’s Funniest Videos and Candid Camera with my kids, and we rented comedies from Blockbuster that included Saturday Night Live episodes, Shrek, Big Mama’s House, K-PAX, Dr. Doolittle, Miss Congeniality, and Bringing Down the House. I took a break from my favorite action-adventures during therapy.
Music
After five weeks of therapy, I found I could use the pedal on my piano for short periods of time. For 5 to 10 minutes each night before bed, I pedaled the foot, pumping right through the metatarsal heads that brought so much agony, and sang from the Songs of Zion, an African-American hymnal I first used in Washington, D.C. while training for urban ministry:
When peace, like a river, attendeth my way,
When sorrows, like sea billows roll:
Whatever my lot, Thou has taught me to say,
It is well, it is well with my soul.
Refrain: It is well (it is well), with my soul (with my soul)
It is well, it is well with my soul.
A couple of months ago I began playing my guitar again. The guitar case had been the prop to hold the blankets off my feet at night, but I hadn’t played for several years. With the encouragement of my pastor, I got it out again and I discovered that when I sang, my brain had no room for pain. Often my fingers hurt from pressing on the metal strings, which also helped me forget about the foot pain. Thus, for a few moments each night I could make the pain stop by singing old protest songs and hymns of faith. When my foot was especially weary of walking across the floor at night, and my leg began to drag, I would sing my way to belief:
Where He leads me I will follow
Where He leads me I will follow
Where He leads me I will follow
I’ll go with Him, with Him, all the way.
He will give me grace and glory,
He will give me grace and glory,
He will give me grace and glory,
And go with me, with me, all the way.
God’s grace and glory, invoked in the midst of therapy demands, parenting, and work helped me make it through the night, and also to get to the night with hope and faith.
Spiritual Practices
I found that integrating spiritual practices with the many physical therapy exercises a source of strength and healing. For example, Bob Brown gave me a Theraband to exercise the foot. He showed me how to place my foot in the center of the band, grab both ends with my hands, and pump the foot 20 times, then circle the foot to the right twenty times, and to the left another 20 times. I don’t like to count. I find it tedious. If I sang a hymn with it, the time passed more quickly. I’d find a verse or song that lasted the 20 counts of pumping the foot in the band.
Several other spiritual disciplines were incorporated into my recovery: journal reflections on biblical passages with a prayer group at church, regular worship on Sundays, receiving Communion each night at home, memorizing bible verses while walking the treadmill each day, and spiritual direction and counsel with lay and clergy family and friends.
The breath prayer was most helpful. I swim three to six days a week, 20 to 26 lengths of the pool each day and use a breath prayer. Each phrase lasts the four to six strokes I need before coming up for air. Likewise, at the fitness center when walking the treadmill or riding the recumbent bike, I would pass the time using another breath prayer. With each stroke, step or revolution, I’d pray: “Lord Jesus, thank you for healing. Grant me thy courage, thy strength and thy peace.”
Grant me courage…to roll on my toes when walking, to do what my therapists tell me I must do — move into this pain, face into the storm.
Grant me strength…to get up an hour earlier each day so I can do the exercises before getting the kids ready for school and me for work, and to stay awake another hour after my kids are in bed to do the exercises, elevation and massage all over again.
Grant me peace….to know that even when I cannot go on, God can. And, takes me with Him. For new life is always given in pain and with great cost, and I need God’s peace to deliver this new creation.
I also practiced meditation as a result of my work with the second physical therapist, Bob Brown. He was less helpful in prescribing exercises vital to walking and accomplishing the goals on my list. He did, however, help me to relax during this stressful year and a half of treatment. At the start of each session he had me lie down for twenty minutes with my foot wrapped in a warm compress, and elevated on a soft leather box. I began to meditate in the comfort of the dark room. It was a spiritual practice that returned easily to me after discarding it when my son was born 10 years ago and I found I was too busy in the midst of fulltime work and parenting to pray. For the first six months of therapy, I’d meditate for 20 minutes each morning and evening with my foot elevated and wrapped in a hot sock. After the swelling in the foot disappeared, I dropped the morning session but continue to meditate each night and find it brings the peace I need to sleep.
Massage
One of the symptoms of CRPS is being hypersensitive to touch. Bob Brown began massaging the foot at each PT session to work on tactile desensitization. After just five minutes, the massage seemed to normalize the skin color and temperature. The massage seems to retrain the sympathetic nerves and promote better circulation. For the first three months, I’d massage the foot myself three times a day. I would first elevate my foot and meditate for 20 minutes, and follow this with five minutes of massage.
After three months, I was able to cut out the mid-day session that was frustrating and difficult since I had no quiet space at my office. I work in an open work area with eight other staff members and students coming and going. The so-called staff lounge in our building was often used for meetings and events of other offices on campus. Occasionally, I could use the office of another co-worker, but mostly I just had to prop my leg on my desk and put a sign next to my foot during those 20 minutes asking students and faculty to “Please excuse the foot on the desk as I recover from recent foot surgery.” It was humiliating and awkward to live with this mark of disability. With much relief, I was finally able to drop this part of the daily therapy routine after three months. Only on rare occasions with a pain flare-up do I find it necessary now to elevate and massage my foot at work. It continues, however, be part of my nightly effort to keep this in remission.
Psychological Support
My third therapist, Roger Allen, gave me an article he’d written with two others that explained the importance of treating CRPS in a multi-disciplinary manner. “The key disciplines needed for the management of CRPS include medicine, psychology and physiotherapy.” Psychological support came primarily from an informal network of family, friends and coworkers who encouraged my efforts, listened to my fears and frustrations, and nurtured my sense of humor. The mainstay of support came from my best friend, Cindy, and my brother and his wife. My brother and sister-in-law were pastors in Tacoma and they knew from their own pastoral counseling the kind of advice that was helpful, and they knew the patience of listening. Since their children were the ages of mine, my kids often ended up overnight at their home on weekends, an enormous relief which gave me breaks from the stress of parenting, fulltime work, the pain and treatment demands of CRPS, and the divorce I was dealing with during my recovery. I attended my brother’s church in south Tacoma and was nurtured by his wise and humorous preaching. I attended a small study/prayer group at his church which included a couple of women who also helped me bear the stresses of CRPS, divorce negotiations, and court appearances.
I was beginning to get the CRPS in remission after six months of hard work when psychological challenges increased. The pain was down, I was tapering off medications, and I was about to begin pliometric exercises to prepare for soccer. Several major setbacks hit within a couple of months that summer. My brother and his wife were reassigned to churches in Spokane, my best friend Cindy took a job in New York, the divorce negotiations broke apart and we ended up in trial to settle the division of assets and parenting plan, I broke out with a shingles rash on my CRPS foot and lower leg, and I fractured the metatarsal bone in my CRPS foot.
The fracture meant I had to reduce weight- bearing activity by more than 50% during the six weeks the bone healed. When my podiatrist finally agreed I could return to physical therapy I found I had lost six months of previous hard work. Most of the goals on my list that I’d accomplished earlier I could no longer do. And so I started again shoving paper on the floor, twisting toes, and grabbing the washcloth -— the basic exercises of therapy I’d done months earlier.
With my brother, sister-in-law, and best friend gone, and now attending a new church where I knew no one very well, my psychological support fell apart. I found myself on the verge of tears at work, unable to manage the pain and stresses by myself. Having been through a major depression in 1986 and having some training about depression in seminary counseling classes, I knew how to deal with emotional and psychological turmoil. I found a counselor and met with him five times in the fall and winter, worked harder reaching out to new friends, entered a prayer covenant with my new pastor, and started a chronic pain support group at my church. Gradually, I rewove the fabric of my support network and healing began to unfold again.
Keeping My Foot Warm
For the first 13 months of treatment my right foot was cold, likely because of the disturbance to the sympathetic nerves that control circulation. The doctors and all therapists agreed on one point: keep the foot warm. When it was warm, the pain would subside. My doctor prescribed Dibenzyline to help warm the foot. I found that had limited value. It may have helped in the first few months, but didn’t seem to help as time passed. I tapered off the drug over a two-week period in June when I was walking better, and the warmer weather was approaching. I went back on it two months later when the foot began getting cold again and pain started increasing, and continued it for another 12 weeks from August through October. When I dropped it, my foot was still cold at times, but I didn’t like the side effects of the drug and it didn’t seem to help.
The other ways I kept it warm was to take a hot bath each night, to sleep with a hot sock (a cloth bag of rice warmed in the microwave), and to keep a heat wrap around my ankle. At my desk, I sometimes put a heating pad under my right knee to warm the artery sending blood to my CRPS foot. When really cold, I had an afghan wrapped around my legs and feet at the office.
I worked for a few weeks with thermal biofeedback, using a thermometer that would read the temperature of my skin. I’d try to visualize my foot warm by picturing a warm fire and a minister/teacher massaging the foot, someone I knew who had the hottest hands I’d ever experienced during a healing service some years earlier. I could raise my skin temperature slightly doing this, but didn’t work at it long enough to have much significance in recovery. I suspect it might be useful if the skin temperature of my foot drops again this fall, and know others who’ve found thermal biofeedback techniques helpful. I’ve not had a problem with temperature changes in the foot for last three months, and no longer have a need to work with heat therapy.
Medication and Medical Interventions
I rebelled against taking drugs throughout my recovery. I didn’t like the immediate side effects and was unsure about long-term effects. Persistent high levels of pain have a way of grabbing attention, and so I did need some relief.
Dibenzyline: To warm the foot (and thus reduce pain), I took 10 mg/day of Dibenzyline for the first 20 weeks. I then stopped taking it for two months, and then took it another 12 weeks until it no longer seemed to be having much affect. I was unwilling to increase the dosage, and tried other ways to keep my foot warm.
Vicodin: While taking Dibenzyline, I also took the opiod (narcotic) Vicodin on an “as needed” basis for the first 6 months. This was a combination of 5 mg Hydrocodone and 500 mg Acetaminophen. Generally, I’d manage on 1 or 2 tablets per day.
Tramadol and Ultracet: In the seventh month I switched to Tramadol (50 mg) and its lower dose version, Ultracet (a mix of 37.5 mg Tramadol with Acetaminophen). This acts like an opiod in that it interferes with transmission of pain signals. It also triggers release of norepinephrine and serotonin, neurotransmitters that help reduce pain. I experienced similar pain relief as with the Vicodin, but was less dizzy. Thus, I was able to concentrate better at work. Like the Vicodin, I took this on an as needed basis, generally 37.5 mg (the Ultracet) to 87.5 mg per day (1 Tramadol and 1 Ultracet). I experimented for two months by taking it regularly three to four times per day to see if I could control the pain by having a constant dosage in my body. The maximum dosage I ever needed was 187.5 mg in one day. Given that my doctor told me I could safely take up to 400 mg, I felt fortunate I was able to manage the pain levels with lower dosages, perhaps because of the multiple means of recovery I utilized. The high dosages were during a particularly busy time at the office when I needed to do some overtime and focus as best I could to get the job done.
Lumbar sympathetic blocks: Neither the Vicodin nor Tramadol are used specifically for nerve pain, but since they didn’t need to be taken all the time like the medications I learned about for nerve pain, I preferred managing the pain with these. But after 11 months of relentless pain, I was weary of fighting it. I tried another medical intervention: In January 2003 I had two lumbar sympathetic blocks, which brought relief for 3 hours the first time and only a couple of hours the second time.
Neurontin: After the blocks I tried Neurontin, an anti-seizure medication used commonly with nerve pain, including CRPS. I worked my way up to 3,000 mg/day and for about a week I found some relief from the burning and throbbing pain, but not the buzzing and crawling sensations. I was anxious about long-term side effects that seemed uncertain with the Neurontin, and the short-term side effects were much worse than the Tramadol. (It felt like I couldn’t control my bowels, and was bothered by mild tremors and increased appetite.) I was on and off the Neurontin within a four-week period. I decided I would rather live with more pain and manage it as I had earlier with a low dose narcotic-like drug, Tramadol and Ultracet. Since I was able to tolerate physical therapy exercises without being heavily medicated, and I functioned pretty well at work with the Tramadol/Ultracet taken as needed, I found this enough pain medication through most of my recovery period.
Other medications I tried, but which didn’t bring relief included a lidocaine patch and EMLA cream. The literature on CRPS and Dr. Robinson from the University of Washington Pain Center recommended that I try an early anti-depressant to control the pain, but my family doctor generally found these to be “dirty drugs,” interfering with other medications and more often having unpleasant side effects. I went with her advice, and continue to use the Ultracet or Tramadol as needed. Once I reached all my functional goals, I began to get breaks in the pain so that I don’t need any drugs for several days at a time. Becoming less reliant on the prescription drugs doesn’t mean I’m pain free yet, but it’s eased up enough with the help of regular exercise, and I can manage it on most days with massage, meditation and pacing my activities.
Fulltime Work
My job at the University of Puget Sound’s Registrar’s Office is to evaluate credits for transfer from study abroad programs and summer schools that our students attend. The 40-hour workweek was a mixed blessing in my recovery. Working forced me to get up and exercise the foot each day, even if only walking from the house to the car, and the parking lot to the office. Inactivity exacerbates CRPS symptoms and pain. Others I met who had CRPS talked about spending days in bed and not needing to put shoes on their feet (because it hurt) or sleeves around their arms (if CRPS was in the hand and arm). The simple act of wearing shoes each day meant I was able to overcome the hypersensitivity present with CRPS. Even though frustrated by not doing the level of volunteer service work I’d done before, there was tremendous satisfaction and strength to be gained in my work as I helped students make plans for study abroad, summer school and completing their degree requirements. Working meant I also had friends at work to support me and I could also help them with their concerns. I wasn’t isolated by staying home, which was particularly important after my divorce that occurred the same year of my recovery. Work provided my need for community. A fulltime salary also had an obvious financial advantage with the additional medical expenses of CRPS.
At the same time work brought its benefits, there were days I wished I could have worked only 5 or 6 hours rather than the standard 8. Especially on days that my kids were home (and not at their dad’s home), it would have been less stressful if I could have arranged 1 to 2 hours of sick leave to do the requirements of home therapy, involving 2 to 3 hours/day in the first few months. The chronic nature of CRPS made it hard to explain what I needed, and in hindsight the help of doctors or therapists would have been useful in this regard, helping with the education of supervisors and developing ideas to adapt to the needs of the work place. I didn’t want to be a burden to my coworkers by taking more time off. I knew these extra demands of fulltime work added to the stress, which then flared up the pain and made it necessary to take more of the narcotics than I wanted. With my perfectionist tendencies and loyalty to coworkers and our students, I was also careful not to schedule medical and therapy appointments during peak times. I often used my lunch hour for these appointments in order to get the job done during this long illness. I did came to work an hour or two late a few days because I hadn’t slept the night before, or because of the nausea when weaning off the narcotics, but I never missed a full day of work except for the week following neuroma surgery. Mostly, I worked in spite of the pain, dizziness from the medications, and mental fog during the four months I didn’t sleep well.
Working on sleep
If I didn’t sleep, pain and stress would increase. In the three months prior to foot surgery and the first month after, I rarely slept well. Bedsores were agonizing because I couldn’t roll over in bed or lay my foot on the left or right side without pain. I woke up when I tried to change positions. I had to work at sleeping through the night and used these strategies:
- I meditated each night and for months took a hot bath before bed.
- I swam up to six days a week to release the tension.
- I pushed the side of my foot against a beach ball to help tolerate the pressure of the mattress on the sides of my foot at night.
- I practiced lying down on the floor and rolling from side to side so I could do the same when rolling over in bed.
- I propped the blankets off the bed to reduce the pain from the weight of the blankets on my foot.
- I said “No” to PTA and church activities I’d done earlier so I wasn’t up late.
- I bribed my kids with a dollar if they’d get to bed earlier if I were particularly tired.
I rarely needed medication to sleep except in the first month following surgery. The pain medication allowed me to work, but was rarely used because I couldn’t sleep without it. These other strategies have worked and within a few weeks I was sleeping through the night. Even when sleep returned, I noticed I still was tired for months, I suspect in part because I was sleeping but not dreaming. I wasn’t getting to the deeper REM sleep. The first dream I remember was in February 2003, a full year after the CRPS symptoms began.
Eating well
I’ve always been healthy prior to CRPS and rarely missed work from colds, flu, or other illnesses in part because I was active, ate well and the stress I had was easily managed with supportive friends at work, home and church. With the CRPS, I took extra care to keep eating right so that I wouldn’t have other illnesses to deal with at the same time. I took 1200 mg of calcium plus a multivitamin to rebuild the mineral lost from the CRPS. Seven months after developing CRPS I fractured a bone in my CRPS foot. A bone density test showed osteopenia and my podiatrist was concerned how ghost-like the bones in my foot had become.
I reduced caffeine to make it easier to sleep. I brought yogurt and banana smoothies to work. I cut back on evening snacks to keep from gaining weight during the period of less aerobic activity. I cooked at home with more whole grains, vegetables, tofu, and other soy products. None of this was new, but trying to reduce processed foods, trips to McDonald’s and Pizza Hut meant planning ahead before shopping and some extra time in packing lunches for work. There were still nights when I was exhausted after work or taking the kids to some school or sport event in the evening, and it was just easier to feed the kids a frozen dinner or order pizza. I exchanged good nutrition to avoid the cooking and cleaning to get to bed earlier. It was a constant challenge balancing the benefits of healthier food with the benefits of less stress from processed foods and meals out. Focusing on better eating helped maintain overall health and energy as I only got one brief cold during the 16 months of treatment.
Starting Treatment When CRPS Symptoms First Began
I was not like other people I met who had CRPS. All the others spent several months moving from doctor to doctor trying to learn why they were in so much pain. My podiatrist knew the symptoms of CRPS and diagnosed it within the first month that symptoms developed. I began therapy immediately and this may be one reason I was able to accomplish all my goals and manage the pain with fewer medications than others.
Because of the pain, most people understandably stop using the limb that hurts. Unlike many signals of pain in our body, the pain of CRPS requires movement and not rest. The months of not using the foot or hand with CRPS can exacerbate the pain and other symptoms, making recovery much more difficult. If undiagnosed for long, a full recovery might not be possible and the symptoms can spread to another limb. Knowing the added pain and disability that came for others with CRPS, it feels a miracle to have had a doctor who understood the need to get me in therapy the same day he saw the first signs of pain, allodynia, edema, and the changes to skin color and temperature. More than once Roger kept reminding me I was doing well just keeping the pain confined to my right foot. Keeping the pain confined was a sign of progress.
Things that didn’t help my recovery
There were several strategies not helpful to me which others have tried with CRPS, most of which are named earlier. These included two lumbar sympathetic blocks, acupuncture, and biofeedback. I also tried a session of Reiki, but found it to be similar to the meditation I was already doing at home and not worth pursuing. Other things decidedly not helpful included the following:
Physical therapy without clear goals and strategies
Bob Brown, my second therapist, was very helpful in reducing hypersensitivity I experienced early on as he massaged the foot regularly and got me doing it at home. He also helped reduce my stress by letting me elevate my foot and meditate for twenty minutes at each appointment. He also got me started on the treadmill that was so helpful in walking without a limp. After the first couple of months when I ran out of insurance coverage, I found I was not progressing. I began to increase my time on the treadmill on my own because I knew I could do more, but got no direction from Bob on how to keep moving towards more challenging activity. I asked him how long he thought it would take to “get better”. His response was that nature had a way of healing, and some patients he’d seen take two months and others take twelve. It was as if I just needed to sit back and watch healing unfold. The lack of direction became frustrating as I approached the third month of pain and was still far from reaching my goals.
When I began with Roger Allen at UPS, I got lots more direction and the structure that I needed with the quota-based exercise approach. Still, I returned to see Bob every week or two because the massage continued to be useful in reducing my sensitivity to touch. Scheduling a medical appointment was also the only way I felt justified in taking twenty minutes during the day to elevate my foot and meditate, which felt very important in the first few months when the edema and pain were highest.
Dealing with an HMO
Midway through treatment my divorce was finalized and I had to switch insurance coverage. I now had the Group Health Options Plan. The “Options” piece meant I was allowed to see my regular doctors, but it was cheaper to use the Group Health practitioners so I decided to try them. I searched the website to review the backgrounds of the Group Health doctors and found one that seemed like a good match. She had a particular interest in neurology and so might know something about CRPS. On my first visit, I found I was right. She had worked with CRPS and knew the options for medication and the importance of integrating different disciplines in treating it. I was very organized with a list of questions when I first saw her, and was surprised as she got up to leave after 15 minutes. Unclear where she was headed, I told her I had one more question. Her response was “My time is up.” I could check at the desk to answer the question I had about their counseling resources. I never saw her again.
I tried later to get a referral to a pain specialist through Group Health and was expected to drive to Seattle where they have a Pain Center. An appointment in Seattle meant taking a half-day or more off work for just one appointment, and so I insisted on a referral to someone in Tacoma. I was referred to a neurologist at the Tacoma center who also evaluated my foot and discussed my situation for 15 minutes. As he entered notes on my chart, he told me he would use the term “RSD” in the chart since that’s what most call it. The condition was renamed ten years earlier in 1993. I couldn’t work with someone who refused to be current on the literature.
Fortunately, I budget well and had the financial resources to pay the extra needed to see my regular family physician and the podiatrist who first diagnosed the CRPS. While they didn’t have lots of knowledge about CRPS, they were willing to read up on it and consult other colleagues with their questions. I settled for that and continued my primary approach to treatment, which was the physical therapy, combined with psychological support systems and strategies, and spiritual disciplines. The painkillers they prescribed provided what I needed from their profession.
Recovery has been ragged. I’d improve my function and begin to get breaks from the pain and then the pain would flare up and functional progress would slow or reverse. This pattern to recovery was frustrating and also means the long-term prognosis is uncertain. Am I just having an extended period of success or is this the beginning of remission? The challenges and setbacks to recovery included the following:
Challenges of Stress
Since physical therapy exercises were added gradually, I didn’t experience many pain flare-ups from overdoing it. Increased stress at work and home flared up the pain fairly regularly during the 16 months of treatment. Roger Allen had done some research to suggest that stress can result in a pain flare up 10 days after the stressful event. This was a pattern I found also, and helped me understand when I experienced a setback in getting off the pain medication. There were five particularly stressful events during the 16 months of treatment: divorce proceedings that included a trial to settle parenting arrangements and the division of assets, the unraveling of my support network when my brother’s family and best friend moved from Tacoma, leaving the church where my brother was pastor, buying a house and moving from my apartment, and two periods of overtime at work. These stressors gave me ample opportunity to observe this 10-day stress-pain pattern. When the pain flared from these situations, it was generally only for a day, perhaps two.
Medical Setbacks
There were also three medical setbacks that helped me learn more about the nature of CRPS and how to treat it. While these setbacks were depressing, in hindsight I find the knowledge gained from those experiences helpful as I move beyond therapy to normal life activities. The first major setback was in August – six months after treatment began. I developed a shingles rash in my CRPS foot and up the inside of the leg. It took me a week to realize I had something other than CRPS because the burning and aching nerve pain from shingles was like the CRPS pain, just more intense. I thought I was experiencing another 10-day stress flare up. The rash of spots was unusual, but because CRPS also involves skin discoloration, it took several days before I realized the spots were different than the more even changes in skin color from CRPS. By the time I realized I had shingles, my doctor said there were no medications that would help. I just needed to wait it out and continue the Tramadol I was taking for the CRPS pain to manage the shingles pain. Shingles slowed me down, but didn’t stop my activity. I could still walk the treadmill each day and swim, but cut back the speed and time until the rash began to go away over the next few weeks. Maintaining activity is important in reducing CRPS pain, and it’s important to do what I can even when not feeling well.
The second medical setback was that I smashed my foot into a bathroom cupboard one morning and developed a compression fracture in my CRPS foot. The pain began increasing over the next couple of weeks, and the color was not right after I did this, but again it was hard to recognize something new might be wrong. My foot never stopped hurting from the CRPS and the pain from the fracture seemed to be more of the same. It took a couple of weeks before I began to sense the pain sensations felt different: they were sharper pains than those of CRPS. Fortunately, Dr. Barrett did not cast the foot. Roger warned me about the dangers of immobilizing the foot with CRPS. Instead, the podiatrist asked me to reduce weight bearing as much as possible, at least by 50%. He gave me an orthotic to wear in my shoe, which would transfer the weight to the heel and way from the fractured metatarsal head. I used a cane to take some weight off while walking. With no cast, I was able to keep pumping the ankle and drawing the alphabet with my foot. Even limited activity helps fight off the CRPS symptoms of swelling, cold and throbbing/burning pain.
It took 6 weeks for the bone to heal and Dr. Barrett let me return to physical therapy. In those 6 weeks of inactivity, I lost most all progress I’d gained in the 6 months earlier. When I fractured the foot I had just begun pliometrics — hopping off boxes and other work to begin running for soccer. I was within reach of accomplishing all my goals. When I returned to therapy after the fracture, I had to return to the basics —shoving paper, grabbing a washcloth with my toes, and back to slower speeds and reduced time on the treadmill. This setback was overwhelming when I realized all I’d lost. But after reaching my goals again, I realize that it’s still possible to come back after a setback. I also realized the importance of continuing to stay active. This extended period of inactivity brought back all the CRPS symptoms — the burning pain, the swelling, the muscle weakness and sluggish response, the cold temperature. I have also noticed this relation between inactivity and increased pain and stiffness every morning. Even after a night of sleep when not moving the foot for a few hours, it takes almost thirty minutes before I can walk well again.
The third setback was relatively minor compared to the shingles and fracture. A month ago I missed a step at home and banged my CRPS foot into it. The bone did not break this time, but the mishap flared up the pain just as I was getting 3 and 4 days without the Tramadol. Whatever maintains the pain of CRPS was disrupted, and I needed the Tramadol each day again. It took nearly three weeks before the pain from this incident began to subside. I realized after this experience that it might be important to avoid sports that involve contact. I also suspect that I’ll continue to have setbacks with minor mishaps like this, but with setbacks I have been able to recover with patience, work and time. What might take just an hour or two to heal or stop hurting in my unaffected foot can take days or weeks in the CRPS foot. This setback also seems a clear indication to be cautious about any future surgery or medical intervention in my CRPS foot and leg as it might trigger a particularly difficult flare up of the pain and other symptoms.
Challenge to Find Someone to Oversee My Treatment Plan
The final challenge to recovery was trying to manage the many aspects of treatment on my own. In the helpful article Roger Allen co-authored in Bonica’s Management of Pain, he names the importance of a multidisciplinary approach to treatment. Thus, it’s important for someone to manage or oversee the entire recovery process. The article suggests that generally a medical doctor take on that role. This strategy made sense to me, but was frustrating as I never could find a doctor to fill that role. Dr. Barrett, my podiatrist who diagnosed the condition, specialized in surgery, and freely acknowledged he had a tendency not to look beyond the foot in the healing process. It was hard to talk with him about anything beyond x-rays and medications, much less the need for psychological support, spiritual resources and the details of physical therapy.
Paula Schulze, my family doctor, was empathetic to the challenges of chronic pain from her own plantar faciitis condition and was familiar with medications used with CRPS, but didn’t seem to have interest in overseeing the treatment either. Her practice seemed very busy and she was perhaps as stressed as many medical doctors seem to be. The Group Health doctors I met were either ignorant or were bound by company policies to limit time spent with their patients. Dr. Jaspar, the anesthesiologist who did the sympathetic nerve blocks, knew the most about CRPS and treatment options, but was dedicated to his specialty of blocks and spinal implants. He would not even prescribe medications, as there was no money in this.
Dr. James Robinson, the doctor at the University of Washington Pain Center who did a consultation with me in the fall, would have been an excellent manager for treatment, but he was not taking on new patients and I would not have wanted to make the drive to Seattle for regular evaluations. Roger Allen at the UPS Physical Therapy Clinic was the closest I had to a manager for this as he put in the time to educate, treat and advise me on different aspects of treatment. I also thought about my pastor Joe Miller. He was helpful in that he understood something of chronic pain from his personal experience with cluster headaches and back pain a number of years earlier. He was familiar with some of my medical options even though neither of us had expertise in this area, and he was the only professional that I could discuss my theological issues and spiritual disciplines used in recovery.
In the end, I managed the components of recovery myself. It was lonely not having one person who understood it all. I may have felt that way even if I found someone to manage it. Even if someone understood CRPS, he or she may not have understood me and the feelings I brought to this. Not finding a manager may have been a blessing as it meant I took charge of my own healing. Not relying on any one person during the treatment process means I found a whole community of support. It means I got to know and experience many who taught me the art of healing in their own way: My physical therapists, Roger, Bob and Jennifer; my physicians, Dr. Barrett and Paula Schulze; my pastors Joe and Jon at Mason United Methodist Church; my new friends in the pain support group at church, Dana, Jill and Phyllis; members of my congregation who shared their own stories of overcoming suffering in the book study I taught on Yancey’s, Where is God When It Hurts?; and Keven, a CRPS patient who modeled and shared her process of recovery; my parents and siblings who listened well; my coworkers who helped me laugh and supported my treatment process; my friend Cindy who kept listening even after most went to bed; and Susan who taught me that hope arises from the ashes of the past. I am indebted to them all.
During a time of stress a hormone, thyroxine, is released from the thyroid into the blood stream. This hormone can increase pain with CRPS, make others irritable, cause insomnia, anxiety or digestive upsets. The thyroxine doesn’t have an immediate effect because it is wrapped with protein when it is released. After about 3 days the protein starts to wear away and by the 10th day, it’s fully removed, resulting in the anxiety, irritability, increased pain, etc. This stress-pain pattern doesn’t explain all CRPS pain flare-ups, but explains some situations when other factors, such as increased activity, are ruled out. The same pattern has been found with heart patients at Boston hospitals. Following heart surgery, patients had “relapses” about the 9th day, after being released days previously. Doctors are beginning to bring back patients on the 9th day to monitor the heart.
Appendix 1: My Goals for Therapy and Recovery from CRPS
• I want to put on my socks without pain.
• I want to cut my toenails without pain.
• I want to shop without a motorized grocery cart.
• I want to drive with my right foot again.
• I want to rollover in sleep without waking up from the pain and bedsores.
• I want to sleep with blankets on my feet again. (One of the early strategies for better sleep was to keep the blankets elevated over the guitar case at the foot of my bed.)
• I want to stand barefoot on the linoleum of the kitchen and bathroom floor without wincing in pain.
• I want to walk without a limp (a normal gait) on the tile floor at the swimming pool.
• I want to pivot on my foot and toes when taking a shower.
• I want to dance in church – barefoot and with grace on the oak floor of the sanctuary.
• I want to wear my running shoes, oxfords, sandals, thongs and dress pumps again.
• I want my Jamie Moyer shoes to get a crease in the right shoe. (I had purchased a new pair of tennis shoes in the middle of treatment, and noticed after three weeks a clear crease in the left shoe and not the right. I was not able to push through the metatarsals and toes of my right foot to bend the shoe leather. Getting the crease meant I was walking well again. I had them autographed by Mariners’ pitcher, Jamie Moyer, at the Festival of Lights at Safeco Field in December knowing he’d be starting Spring training soon, and so would I for my foot.)
• I want to walk faster and pass others on the sidewalk.
• I want to play the pedal on the piano again so hymns and songs of faith have more fullness and joy.
• I want to believe this pain and disability will finally resolve.
• I want to balance on my right foot while putting on the left leg of my slacks.
• I want to walk down steps correctly.
• I want to push down on the pedal of the blue revolving file cabinet at work with my right foot.
• I want to ride my bike to work and around town.
• I want to swim with a kickboard.
• I want to play soccer with Hannah, my daughter. (I want to run for short distances and take the impact of the ball.)
• I want to play catch and basketball with Isaac, my son
• I want to drive without pain.
• I want to walk to work and home (4 miles a day) without pain.
• I want to walk to the grocery store and shop on foot again (about 2 miles and an hour of “foot time”).
• I want to stand at a cupboard, pushing up off my right toes and reaching for something way up high like I do with my left foot.
• I want to be able to mow the lawn and take care of the garden
• I want a pain-free day at work.
• I want the pain not to flare up when under stress or other setbacks.
Appendix 2: Physical Therapy Exercises
Circles, Drawing, Pumping, and Flexing
While sitting at my desk throughout the day, at least once an hour for the first 3 months of therapy, I circled my foot to the right and to the left and pumped the ankle up and down. I drew the alphabet in the air with my toes, and spelled out my name in block letters and cursive. With my shoe off, I’d then flex the toes up and down through the day. Basically, I was told to develop a “nervous” foot – keep it in constant motion.
The Beach Ball
I pushed my toes and metatarsals onto a beach ball for five minutes every waking hour for the first three months also. I would sometimes miss an hour but never went longer than two hours without doing this. Hence, I brought the ball to work, church, my kids’ piano lessons, and family activities. After a few weeks, I realized that if I pushed on the ball with the sides of my foot, over time it helped me tolerate the pressure of the bed mattress so that I could lay my foot on both the right and left sides, enabling better sleep.
Therabands
I placed my foot in yellow, red, and blue Therabands and circled my foot to the left and to the right, and pumped my ankle with the bands. I did 3 sets of twenty times each when I got up each morning and before bed each evening for the first five months. The darker colored bands are thicker and require more force, and so were used later. When I got to the blue one, I decided to tie it underneath a pullout computer keyboard shelf at my desk at work. I wasn’t using the shelf for my keyboard, and having the Theraband looped under my desk at work meant I could keep my foot moving throughout the day.
I was constantly looking for ways to integrate therapy at the office to free up time for taking care of my kids when I got home at night.
Rocking Side-to-Side, and Front to Back
While making photocopies at work or washing dishes and brushing teeth at home, I would stand and shift weight from the left foot to the right foot. Over time, this helped distribute my weight evenly on both legs. In May I added rocking backwards and forwards, shifting weight from the heels to the toes. This helped me put weight more evenly on the front of my foot as my heel was carrying about 80% of the weight on my right foot when I began this.
The Treadmill
This was crucial to produce a normal gait. I walked the treadmill every day at the fitness center for 13 months. Often, it meant getting up at 5:00 to drive to the gym, walk, and drive back home and shower in time to get my kids up at 6:30 for school. The early mornings meant I had to cut out most every church and school volunteer activity I’d done before getting CRPS. It was essential I get to bed as soon as the kids were down so I had energy the next day for work, parenting and therapy exercises.
I began the treadmill using just my CRPS foot. I put my left foot on the metal track next to the revolving belt and let my right foot and leg practice a normal motion, setting the speed at 1.0 mph for 5 minutes a day. After a week of this, I was able to walk with both feet on the treadmill, still at 1.0 mph and 5 minutes a day. I added a tenth of a mile per hour every few days and added another minute or two every few days also. After two months I reached 2.3 mph for 16 minutes a day. When I then began working with Roger Allen in therapy he had me reduce my speed to 1.8 mph and shorten the time in order to increase the grade. A 7% incline would force me to roll through the toes when walking. I began with a 3% incline and added a higher grade each week until reaching the required 7%.
After one year of walking the treadmill, I reached 3.0 mph (average walking speed) and was walking 24 minutes. By then, I also was walking a couple of minutes each day backwards on the treadmill. Backwards meant landing first on the toes that hurt, and helped with my desire to move in different directions for liturgical dance at church. It also meant I could recover if I stumbled or tripped, being able to move well in both directions.
Leg Presses
These were done on a Total Gym at the therapist’s office or the Leg Press at the fitness center each day primarily to strengthen my leg and knee. Normally this was 5 minutes a day and with 5-15 pounds of weight. For 30 seconds to 1 minute I would push up on my toes as well. Except for pushing off the toes, this was gentle and easy to do. It didn’t seem to add much in the way of muscle strength but helped reactivate “muscle memory” of how to bend up and down with my legs.
Recumbent Bike
I added the bike at the second month, beginning with 5 minutes and increasing a minute or two each week until I was up to 20 minutes. The bike helped with overall aerobic conditioning, and helped achieve my goal to ride my bike around town again. I “rode” the bike most every day for the next two months, though if pressed for time I would skip it to be sure I had time for the daily treadmill workout. After two months, I was able to ride my regular bike from home to the store, a 5 mile round trip.
Shoving Paper on the Kitchen Floor
It was pure agony bearing weight on the front of my right foot. Roger asked me to put a piece of paper on the kitchen’s linoleum floor and then shove it backwards using the front of my foot. This exercise was one of the first that stretched my tolerance for therapy. Doing it each morning and evening was always an act of courage. I hated the pain and was not good at it early on, but did it anyway. Courage meant determination more than strength and ability. Courage meant trusting it would help me accomplish something on my wish list. The paper barely moved on my first attempts each day. I couldn’t press hard enough. Eventually I got the hang of it, and several pieces sailed under the stove and refrigerator during these weeks of pushing paper.
Grabbing the Washcloth
I took a warm wet washcloth and laid it on the floor with my heel in one corner and toes diagonally across to the other corner. The task was to try to “gather up” the washcloth by pulling it with my toes toward the heel. I did this ten times each morning and evening for 3 weeks in the spring and then again in the fall after I fractured a bone in the CRPS foot.
Twisting Toes
One of my first assignments with Roger was to grasp the bottom and top joint of all five toes between my thumb and center finger. I would then twist both bottom and top joint of each toe twenty times. I did this every morning and evening. Still holding each toe between my thumb and third finger, I moved both joints up and down, also for twenty repetitions each morning and evening. The purpose for this was….?
Standing on the Bathroom Scale
Roger’s research with CRPS and approach to therapy involved lots of measurements to see how I was progressing. Early on he wanted to see if I had symmetry when standing. That is, did I bear weight equally on my left leg and my right (CRPS) leg? To assess this, we laid two bathroom scales side by side. I stood with one foot on the left scale and the other foot on the right scale. This was easy, as I had spent the last two months rocking side-to-side at the copy machine and while brushing teeth.
I suspected, however, that I was not bearing weight equally from the back to the front of the foot. To assess this we put the two scales at the right and then placed a book the same thickness as the scales next to the scales on the left. This created a “triangle” with the book at the left and the two scales on the right. I stood with my left and unaffected foot on the book and then placed the back half of my right CRPS foot on the bottom scale and the front half of my CRPS foot on the top scale. My weight varies between 125-130 pounds. The right leg should normally bear half my weight, or 62-65 pounds. This amount should be shared equally between the front and the back of the foot for standing and other weight-bearing activities. Our first assessment showed I was only putting about 12 pounds or 20% of my weight on the front of the foot.
Newly aware of the imbalance, I began standing on my bathroom scale at home each morning and evening and gradually increased the weight on the front of my CRPS foot until I was able to reach 30-35 pounds or 50% of the weight carried by my right leg. That’s all Roger said was necessary, but for a long while I tried to get to the place where I could take my full weight on the front part of the CRPS foot, and so while holding on to a towel bar in the bathroom, I kept trying to add more pounds each week and got to about 80 pounds before giving up. It was just too hard. I wanted to reach 130 pounds to give me more moves for dancing. I also wanted to be able to reach for something on a high shelf at the office or home by pushing up on my right toes in the same way I could do with my left foot. It was not a necessary function since I could grab the just-out-of-reach object by pushing up on the toes of my left foot, but it would mean a lot knowing I could do the same activity with the right foot.
The same week I was discharged from 16 months of therapy, I discovered I could do it. I pushed a container of frosting to the back of the top shelf in the kitchen so I couldn’t reach it standing on flat feet. With my unaffected left foot, I stood on the toes and grabbed the frosting. I pushed it back to the same spot and tried the same with my CRPS foot. Taking a deep breath, I pushed up on my right toes, and got the grail!
Swimming
As a child I grew up in a small town and two blocks from the public pool. I took lessons in the morning, swam in the afternoon with friends, and returned often in the evening with my family. My favorite family vacations were to the beaches at Ocean Park. During college I chose swimming over coffee to help stay awake through long nights of reading and writing. I swam through the ninth month of my pregnancy with both children. After five weeks of therapy, I figured out on my own that I could swim in spite of the foot pain. The pool was not just a place for physical therapy. It was the chance to be immersed in familiar memories of home. The pool was the only place I could move during the day without pain. It was the only activity that wore me out, and thus helped reduce stress and made it easier to sleep at night. Occasionally I’d practice walking in the pool because the buoyancy of the water took weight off my foot as I practiced walking. Mostly, though, I just swam to add joy to my day. Once started, I swam between 3 to 6 days a week. For about a month in the winter I began having neck pain, which seemed to worsen at the pool. Adding new neck and shoulder exercises has allowed me to return to the pool three days a week.
Throwing a Golf Ball
Why Roger suggested I learn to throw a golf ball I’ll never know. This exercise was a particular challenge as I couldn’t pick up a golf ball with my good foot, much less throw one with my CRPS foot. After two months of futile attempts, I finally managed to spread the toes wide enough to get around the ball and tolerate the hard surface well enough to toss it across the living room. While it had no functional utility, it was nevertheless delightful when I finally had something I could do with my foot that my kids couldn’t do!
Biking
The first real bike ride felt like flight! The recumbent bike at the fitness center helped me regain strength and motion, but the gym is boring, noisy and smells like sweat. The freedom to ride gave me a huge boost of confidence. I was surprised that it seemed fairly easy once I started. In fact, it was much easier to ride the bicycle than walk because walking required rolling through the toes and metatarsal heads that hurt so much. I was able to bike around town a full year before I was able to exchange the treadmill work at the gym for walks on real ground. It baffles me why it is also less painful to ride the bike than drive a car. It may be because riding requires more dynamic motion than operating the car, and this may help ease whatever causes the pain of CRPS.
Rolling on balls – Pressure desensitization
This began late in therapy after a consultation with Dr. Jim Robinson at the University of Washington Pain Center. He noted in his report that while I was able to tolerate his gentle stroking of the foot after 10 months of therapy, I was still wincing and experiencing significant discomfort when applying pressure over the bottom part of the foot under the metatarsal heads. It meant it still hurt to drive the car. It also meant that even though I wasn’t limping, my goal to walk pain-free seemed impossible. To desensitize this part of the foot to pressure, I began a schedule of rolling different balls under the toes and metatarsals. The first week it was 3 minutes rolling a fuzzy and soft tennis ball, 2 minutes of rest, then another 3 minutes with the same ball. The next week I rolled an “Incrediball” for three minutes, followed by 2 minutes of rest, and then 3 minutes of the prior week’s tennis ball. The third week was 3 minutes of Incrediball, 2 minutes rest, and 3 minutes of Incrediball. The fourth week exchanged a softball in the first 3 minutes and kept the Incrediball the last 3 minutes. I continued this pattern of adding a new and more irritating ball every other week for three months. The pain and pressure increased weekly as I moved to harder, smoother and smaller balls. I progressed through following balls: tennis ball, Incrediball, softball, baseball, wooden croquet ball, golf ball, and a metal ball sold at Asian markets and normally used to roll in the hand while meditating. (It was the same size of the golf ball, but smoother and colder.)
During the weeks of rolling balls under my foot I’d come to therapy and press on a dynamometer with my foot. The dynamometer has a dial to measure pounds of pressure. The needle on the dial moves like a clock hand when pushing the “pedal” attached to the meter. Roger strapped the dynamometer to a block of wood with several layers of duck tape. We put this contraption on the floor to imitate the gas and brake pedal of a car. I would come each week and see how much pressure I could apply to the dynamometer pedal. The pressure desensitization was a huge success as eventually I was able to push the needle off the scale. More significantly, I was able to drive farther with less pain. And even better, was that I found my goal to walk pain-free was possible. The process of increasing pressure on the balls meant that I could take more pressure on the sole of my foot. This was the most joyous breakthrough of my entire 16 months of treatment when I realized the same was true in walking each morning. The distance I could walk pain-free expanded each week.
Pliometrics
In the last couple of months I was finally able to work on pliometrics — exercises which required more force on the foot such as stepping off a box, hopping and bouncing back and forth between each leg. Pliometrics would allow me to run again for soccer in the backyard with my daughter. I started with about 1 minute each night, making small leaps from one foot to the other, adding 15 seconds more each night. These leaps became more varied each week, as I began hopping side to side, then in diagonal patterns and around in circles.
Dribbling a Soccer Ball
I started with a soft Koosh ball as the impact of a real soccer ball brought on too much pain. I kicked the Koosh ball 20 times each night against the wall of the garage for a couple of weeks. Once comfortable with that, I switched to a rubber ball for another couple of weeks. Finally, I was able to tolerate the impact of a real soccer ball. I also worked on my aim with my daughter volunteering to be a goal post as I tried to shoot the ball through her legs. Having done the pliometric hops for several weeks, I then began dribbling the soccer ball for a couple of minutes each night in the yard in my final weeks of therapy. I still keep it to just a few minutes a day. That’s enough to allow me some time to play with my daughter again as soccer team practices begin this summer.
Walking the Neighborhood
After a year of work on the treadmill, I wanted to see if I could walk without a limp by practicing on real ground. I began with just 20 minutes, a few minutes less than I was doing on the treadmill. The real ground would be more tiring given the varying surfaces and steps up and down at curbs. I walked daily and each week I added another block to my route. I would also step off the sidewalk and walk instead along the grass to help the nerves and muscles respond to uneven surfaces. I now walk 2.8 miles each morning in 45 minutes – which is 3.7 mph and faster than average pace. I sometimes think this distance is not necessary to keep CRPS symptoms away, but with early signs of osteoporosis that runs in my family, it feels important that I continue to walk these longer distances.
Walking Barefoot on the Wood Aerobic Floor at the Gym
Dancing to the End of Therapy
This was an exercise I developed myself. I wanted to do liturgical dance for an Ash Wednesday service at church, and it meant moving across a wood floor barefoot. The choreography seemed easy compared to tolerating the pain on the floor. Having learned that getting over the pain means moving through it, I spent time each morning at the gym walking on the wood aerobics floor. For five minutes each morning I walked forward, backward and sideways, trying to desensitize my foot to the hard surface that was similar to the sanctuary floor at church. After six weeks at the gym, I spent the last week at the sanctuary reviewing the dance movements in my bare feet every day for 15 to 30 minutes.
It was really too much, as I pushed the time on the wood floor faster than a quota-based therapy method would suggest, and the foot ached more that week. But the night of the service made the effort worth it. Those longer walks on the wood floor meant that I’d managed to move my feet in a way that brought hope and inspiration to others as I danced to Be Not Afraid. This service also included an anointing and healing service. There were others that night that were more overwhelmed by life than I: a friend going through chemotherapy, a woman mourning the death of her husband and daughter, and a woman with CRPS in both feet and legs. We all understood the victory of faith and healing as I danced,
Though you pass through raging waters in the sea,
You shall not drown.
Though you stand amidst the burning flames,
You shall not be harmed.
Though you stand before the power of hell and death is at your side,
Know that I am with you through it all.
Be not afraid, I go before you always.
Come, follow me. And I will give you rest.
I danced again four months later on Pentecost, this time inviting 20 others to join me. The syncopated rhythm moved quickly and the lyrics were about the transforming Spirit of God, which gives vision and strength to preach good news to the poor, to bring release to the captives, recovery of sight to the blind, and liberty to the oppressed. It was a fitting song to celebrate my own release from therapy and the accomplishment of all goals on the list I made 16 months earlier.