Not much is fair about chronic pain, least of all sucker-punches that hit without warning: a new development after my second surgery. I would be minding my own business, when out of nowhere it would hit, knocking me to my knees. It felt like a hard muscle cramp combined with electrical shock waves shooting into the ends of my toes or through the middle of my left foot, as if I’d plugged my toes into a light socket. And yet, there was no muscle contraction, no visible problem at all.
This pain had the potential to stop me in my tracks and take my breath away, rendering me motionless and speechless for fifteen to thirty seconds, sometimes longer. It’s the worst type of pain I’ve developed and the only one that rates between a 9 and 10 on a pain scale of 1 to 10 (10 being the worst pain you can imagine). Even worse, these strikes are completely unpredictable, hitting me when I teach, while I drive the car, or even when I am sitting quietly and watching television. In time, I learned that after a first blow hits, I must stay totally relaxed and speak softly. It’s the only way I can avoid after-shocks, a continuation of one lightning bolt after another.
It’s so easy to look back and see what we couldn’t see in the heat of a moment. In September, a few months after the second surgery, I sat in an exam room talking to Dr. B—. As I explained the newest developments, he examined the area around the incision and gently touched the puffy flesh on either side, near the middle of my ankle—and brought me to tears. Of course, the tissue near an incision is apt to be sensitive, but there was no reason why I should react as I did, especially when I was able to endure incredibly painful injections into other parts of my foot.
Dr. B— looked at me with sober concern, “Glenn, I think I know what this may be—and you don’t want it…” He rattled off a series of letters, words, and phrases that I didn’t catch and didn’t ask him to repeat or explain. Denial is also a powerful drug. What he discovered was that I had developed an abnormal sensitivity to touch (Allodynia), a trait characteristic of RSD/CRPS—the letters he spoke that day. In his chart entry for September 11, 2008, Dr. B— wrote, “The patient is in danger of having RSD.” Or spelled out, Reflex Sympathetic nerve Dystrophy,a diagnosis more recently described as Chronic Regional Pain Syndrome (CRPS).
At the time, all I understood was what I felt: burning/aching pain, new electrical spasms striking randomly, and an odd sensitivity to touch. I may be slow, but it began to dawn on me that there might not be a silver bullet, no realistic hope for a solution to my pain. And, with this gradual realization, an old family friend moved into my life: depression. This sense of despair further took away my hope, while it also blinded me to the unique ways it amplified every pain: the aching and burning, the sensitivity to touch, and every hit of the lightning bolt. My depression also let the air out of the tires on my car and my boat trailer, leaving the trailer parked in the garage on beautiful Saturday mornings and taking me off the road; I didn’t preach or teach anywhere outside my university classes that fall.
Dr. B— was correct. He was the first to identify or diagnose what was happening (two years after we first met). With what I’ve learned about CRPS since then, I’m convinced that it began two years earlier, as is typical, in response to a minor injury: my stress fracture (click image or here for American RSD Hope web site). This is the reason my pain before the first surgery was already out of proportion to the objective findings of the nerve conduction study. And because the nerves were already confused, despite the technical success of the first two surgeries, these nerves continued to irrationally report pain signals for which there was no underlying cause. In other words, what I hoped for was beyond my grasp from the very beginning. I just didn’t know it. At the time, no one could have known or diagnosed CRPS on the basis of my slowly developing symptoms. For my particular style of CRPS, only the luxury of time and the failure of standard medical intervention enabled Dr. B— to reach an accurate diagnosis.
For the first two years, we made the best decisions we could under the circumstances, a frustrating reality for life’s most important decisions—our goals, our hopes, our dreams. At best, we work with partial information and educated guesses. The best we can do is act on what we know in the present moment—and grant ourselves grace for what we can only see at a later time.
The next time I saw Dr. B— I asked about the diagnosis, wrote it down, and began to do my own research. What I found did and didn’t make sense of my symptoms and Dr. B’s words “you don’t want this.” I had some of the symptoms, but what I found online was a far worse variant of the condition. So I concluded that I must have a “minor” case of CRPS, not knowing or realizing that I’d only just begun my journey. Sometimes it’s good not to know. But in fact, it was impossible for me to know because CRPS is a medical mystery. So far as anyone knows, the problem is pain or the factors by which nerve cells communicate pain, not another underlying cause that can be treated and cured. One nerve cell agitates surrounding cells, they agitate others—and soon a feedback loop is established: the original cells being further agitated by others now involved. Round and round it goes, where it stops nobody knows.
Dr. Kendra, a physician friend (not a CRPS specialist), wrote a letter to me shortly after she learned of the diagnosis, a letter I have saved and reread many times. She began with simple, painful truth about CRPS: it’s “a lousy diagnosis since we don’t know what causes it and don’t have an effective cure.” Dr. Kendra explained that there are a lot of things that can be done to calm nerves that are out of control. So don’t settle for a long-term narcotic solution. It will become less effective over time, is physically addictive, will cause mental slowness, and can contribute to depression and sexual dysfunction. “Furthermore, chronic narcotic use blunts the body’s natural ability to tolerate pain, and other insults or injuries will be less well tolerated without even higher doses of narcotic.” Find a treatment plan that uses multiple approaches: both medications and therapies. That said, “The prognosis of RSD is variable—some patients recover, some go on to severe impairment.”
Dr. Kendra then told me three things I needed to do, all related to chronic conditions, and all terrifically important for me. First, “be as physically active as you can be.” Take up some physical activity that you enjoy and do it with a vengeance. Second, watch out for the connection between depression and chronic pain—especially for men: “think seriously about some counseling and/or medication.” And third, set some goals and think big. Chronic pain patients easily fall into a: “how—am—I—going—to—get—through—the—next—few—hours mentality. This robs one of joy, the hope of something to look forward to in life, and in effect focuses all one’s thought on pain, which is counterproductive—especially if you wind up having to deal with some degree of pain indefinitely.” I must have something that I look forward to, something that gives me something bigger than pain to think about: a hope, a dream.
In my own research I found that the few treatment options for RSD/CRPS are all educated shots in the dark with the hope of hitting a target we can’t see (Click TedTalks Icon or here for a great video from Dr. Elliot Krane). Since no one understands what causes RSD, no one understands how to treat it. Sometimes we get lucky, but only if—and on this point the research agrees—if the diagnosis and treatment come quickly; in other words, if the target is still close to us we have a better shot at hitting it. The further the target is removed from us in time, the less likely it is that any therapy will coax RSD into remission. So the question of the day for me was simple: did we catch it in time?
—to be continued—
Excerpt from a working manuscript, A Fire in My Bones: A Memoir of Life with CRPS (copyright Glenn Pemberton).
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