On a mid-September Sunday, two days after my 52nd birthday, an unusual burning pain began in my left forearm extending to my palm. I made the presumptive diagnosis of herpes zoster. Later, as I sat at my computer, just gently resting my palm on my desk triggered a lancing pain that took several minutes to diminish. I searched for typical zoster lesions and found none. Sleep was disrupted that night by relentless, burning neuropathic pain from axilla to palm.
Two days later, I developed my first lesions on my back in the T1 dermatome. They were painless. That evening after work, I went to a local urgent care clinic. Thinking that this pain would be of short duration with an antiviral, I returned to work the next day.
By the end of Wednesday, finding no relief with the antiviral and with hydrocodone, I was exhausted from the constant pain and the lack of sleep. Zoster lesions occurred in the T1 and T2 dermatomes down my arm and across my back. (Dermatomes often overlap.) My supervisor kindly told me to stay home, which is a dual-edged sword, because although a few of the scheduled morning patients would be seen by a newly hired PA, most of my patients would be scheduled into my already full schedule over the next two weeks. For that reason, I returned to work two days later and implored a PA student to work with me and type my progress notes. Because of the sedation that can be associated with the gabapentin I had been prescribed, I was titrating up the dose gradually to try to achieve some pain relief while still being able to work. But before I reached maximum dose, the pain ended as abruptly as it had began three weeks earlier.
I was relieved to be over that saga of my life. Of course, I had no idea of what was to happen later.
A Temporary Reprieve
At first myalgias anteriorly of all four limbs came and went intermittently. By mid-November, though, the aching anterior pain had increased in my legs to the point that I couldn't get up my townhouse stairs without using the banister. Concerned about polymyalgia rheumatica and worse, I returned to the urgent care center two months after my first zoster lesions. Feeling as if I must have an ESR of at least 70, I was surprised (and relieved) that it was 4 (normal is up to 20).
However, that was the beginning of, "Well your tests are normal," combined with increasing pain that would plague me. My internist repeated the ESR and also performed a CK; "Well, they're normal. Let's do an EMG."
In the meantime, I decided to utilize the expertise of a rheumatology fellow at my work; he offered to get me an appointment at the University. Knowing that the University Medical Center is very busy with patients, I was surprised that the secretary paged me that afternoon and offered to schedule an appointment; I was less surprised that the appointment was three months away. Nonetheless, a few days later, the rheumatology fellow left a message that there had been a cancellation and I could be seen the next week. Feeling that this would surely reveal an answer, I was disappointed again that all the blood tests were normal. I needed a diagnosis and treatment. In December, the constant aching pain increased to a constant burning pain, still anteriorly in all four limbs. Because of the pain, I avoided such normal activities as putting anything on my lap and crossing my legs.
I went to a neurologist for follow-up of the EMG, which I already knew would be normal. Because three doctors had evaluated me by then, the neurologist felt compelled to order a cervical MRI to evaluate for anterior motor neuron disease. The MRI, of course, was normal. He prescribed muscle relaxant. When that didn't relieve my pain, he advised tonic water in case the pain was secondary to "muscle cramps," which didn't fit my burning anterior limb pain.
About a month after the zoster episode had begun, I had also developed a constant pain in the tuberosity of my left fifth metatarsal�a new problem. I searched out a podiatrist close to my home, who diagnosed a stress fracture of my metatarsal. My X-rays were, of course, "normal."
A stress fracture was the only diagnosis I would have come up with as a primary care PA, but I thought it was unusual, since I'd stopped my walking exercise during the zoster pain. He treated me with a surgical boot, and the foot pain decreased in a month. I began having some mild lumbar pain beginning in November, but I didn't think much of it. I'd had worse pain in the past secondary to internal disk disruption, but I had learned to avoid this pain by not torquing my back.
The day before Christmas, on my way to visiting my parents, I walked seemingly for miles in the airport, wearing hiking boots in case I returned home to snow. On Christmas Day at my parents' house, when I got out of bed, pain began immediately in my left foot from my heel to the metatarsal region. Plantar fasciitis, I thought. My parents were both coughing severely, so we all went to the local urgent care center the next day, where they received antibiotics and I got crutches.
When I got home from visiting my parents, trying to work at a large medical center on crutches was a challenge, which I ended up doing for two months. I became very grateful for the rides and support from family, friends and colleagues. It was a change from my lifelong independence. The podiatrist decided that the recurrent metatarsal pain was secondary to flat feet and a subluxating cuboid, which caused plantar fasciitis after my long airport walk. Having never had foot pain before, I'd never even examined myself for flat feet, which is impossible to accomplish. He advised orthotics but delayed casting my feet for two weeks; making the orthotics took another two weeks. I was frustrated that he hadn't examined my feet better in October and advised support shoes and orthotics then. That would have prevented the plantar fasciitis and crutches, which added additional pain to my increasing four-limb pain.
A nurse at work, who had experienced arthritis foot pain for years, provided more information about the best support shoes than I'd even known. I didn't mind having to wear "grandma" shoes two decades before I had expected�as long as they prevented further foot pain. Eliminating any source of pain had become a primary goal in my life.
Finally, a Diagnosis
In early February, a doctor whom I'd been seeing for over a year for prolotherapy to my neck from a previous rappelling injury did quantitative sensory testing (QST) of my arms—a test I'd not heard of previously that was more sensitive than the traditional EMG. QST has become commonplace in clinical neurophysiology units; measurement of the thermal and vibratory senses provides an estimate of the function of sensory small and large fibers.
The physician knew that I had a high pain tolerance. She told me that the QST results were consistent with complex regional pain syndrome type 2 (CRPS-2), presumably secondary to the herpes zoster. CRPS, previously known as reflex sympathetic dystrophy and other names, had been reclassified in 1994 as CRPS-1 (RSD) and CRPS-2 (causalgia or definitive nerve lesion). That was the good news and the bad news. She said, "Now no one can doubt that you're definitely in pain."
I'd ignored the subtle signs of CRPS for the past four months because of ignorance—the increased mottling of my skin, the mild edema and skin thickening of my wrists and ankles.
In mid-February, I began awakening every two to three hours with terrible pain in all four limbs. The pain was not only constant burning pain, but also a lancing, stabbing pain in my upper arms. CRPS can suddenly crescendo. I called in sick and tried to cope. In previous years, I'd experienced such severe pain from endometriosis and migraine headaches that I'd prayed to die; mercifully, that pain would diminish in a couple of hours. However, this neuropathic limb pain was relentless. I found a dark side beyond praying to die: There's a level of desperation I'd never known before.
Pain in Perspective
But there was another interesting level to that pain: While waiting for the hydrocodone to even slightly decrease my pain, I'd think of the millions of impoverished people in the world who have no analgesics, nor food, nor even a decent bed. An estimated 65 million Americans suffer from chronic pain. That's probably an underestimation. The suicide rate among people suffering from untreated pain is incalculable.
Because I was supposed to be making my third medical trip to Haiti in March, I thought a lot about the poorest nation in the Western Hemisphere with such terrible conditions and unbelievable suffering.
When I called in sick again, a nurse practitioner called me back to see if I would be coming into work that week. I could tell that she'd assumed I had a short-term viral illness. In tears, I told her that I had RSD. She responded, "You'll never get better." It was the worst thing anyone could say. We had all seen or heard of patients who lived with chronic, unremitting RSD pain. I knew that I'd live through this, but with how much pain and for how long?
I returned to my prolotherapy doctor in tears because of the increasing pain. She knew I needed more help than she could give. She began calling pain specialists whom she knew, asking them about doing sympathetic blocks to my limbs. The first specialist was going on vacation for two months. The second doctor was too busy. However, the third doctor offered to see me that day and try an alternative therapy to a block. This physiatrist discussed with me doing percutaneous neuromodulation therapy (PNT). PNT is FDA-approved and involves the targeted delivery of electrical stimulation directly to deep-tissue large nerve fibers near the spine. This appears to induce a lasting neuroplastic change in the dorsal horn of the spinal column, restoring a more normal response to non-noxious stimuli and improving the patient's ability to function.
At that point in time, he could have offered to shoot me and I would have accepted. So I desperately tried it. After my first 30-minute treatment, I returned home hoping and praying this new treatment would help.
Pain on Top of Pain
That night, I kept touching my upper arms, thinking that the lancing pain actually was less intense. After four treatments, the physiatrist told me that he didn't think I had sympathetic pain. I convinced him that while the pain in my legs hadn't decreased, the pain in my arms was improving. That's when we both realized that I probably had two sources of neuropathic pain.
After six PNT sessions, my arm pain was remarkably improved, but my leg pain was unchanged. The physiatrist ordered an MRI of my back, which revealed L5, S1 internal disk disruption, and he recommended trying a steroid epidural. I was willing to try anything that would make walking without increasing pain possible, but worried that L5, S1 didn't correspond with my leg pain.
Unfortunately, the epidural caused intense pain in the sacrum, with bilateral radicular-type pain posteriorly. Pain on top of pain had been my life for months.
That night I called a good friend, Lori, who had previously worked as a PA in a low-back clinic for a decade. I wanted to know when the sacral pain would end. Lori avoided answering the question. The next day, there was no position without pain. I called the clinic, only to find out that the physiatrist had Fridays off. His medical assistant wanted me to come to the clinic and see a physical therapist about an RS-4i muscle stimulator.
"You don't understand!" I said. "I'm in too much pain in any position, let alone to drive to a clinic more than 50 blocks away." Surprisingly, she replied that she would arrange to have a representative bring the device to my home. Even more surprisingly, the representative called shortly thereafter and made arrangements to come that morning. However, she became stuck for a while in a snow bank, and then had to go to the hospital to do her day's work there, so she didn't arrive until evening.
The RS-4i stimulator is different from the TENS units that have been used for years in that it provides, through electrode pads, 15 minutes interferential stimulation for acute and chronic pain; it also provides 30 minutes of muscle stimulation for relaxation of muscle spasm, prevention or retardation of disuse atrophy and increase of circulation. The result is a release of endorphins and, thereby, pain relief.
That night, my friend Lori and her husband, Jeff, came over. They brought food and provided music—they're professional musicians, as well. Nourishment was needed. Music distracts from pain and helps heal. Over the ensuing weeks, the sacral and radicular-type pain from the epidural decreased. The burning, lancing pain of my arms resolved with PNT. The burning pain of my anterior legs was believed to be secondary to my sacroiliac joint; it has decreased to a tolerable level with prolotherapy and medication.
What I Have Learned
Remember our important responsibility in relieving pain. We must get patients in severe pain from the proverbial edge of the cliff.
Keep in mind that degenerative joint disease can cause significant pain for years—especially in adults over 50�before it shows on X-rays. Many people can't take nonsteroidals because of gastrointestinal problems.
Shelley L. Wood is a PA in Peoria, Ariz.