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Transformation and Hope - The Means to Recovery
By Kathleen Campbell, M. Div

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.

» Introduction
» Onset and Diagnosis
» Things That Didn't Help My Recovery
» Challenges and Setbacks
» Appendix 1: My Goals for Therapy and Recovery from CRPS
» Appendix 2: Physical Therapy Exercises