The Pain Chronicles (14 page)

THE SHAPE-SHIFTER

Every pain patient is a testament to the dangers of the conservative wait-it-out approach to pain, as some weeks spent observing treatment at a pain clinic demonstrated. Inside the cement tower of the pain clinic in downtown Boston, all sights and sounds of the neighborhood—the swans in the Public Garden, the lanterns of Chinatown—disappeared, collapsing into a small examining room in which there was only this triad: the doctor, the patient, and pain. Of these, as the daily parade of desperation and diagnoses made evident, it was pain whose presence predominated.

What the majority of doctors see in a chronic pain patient is an overwhelming, off-putting ruin: a ruined body and a ruined life. “Chronic pain is like water damage to a house,” Dr. Daniel B. Carr, then the medical director of the New England Medical Center Pain Management Center, told me. “If it goes on long enough, the house collapses.” It is his job to rescue the crushed person within, to locate the original source of pain—the leak, the structural instability—and begin to rebuild, psychically, psychologically, socially.

“Some of my patients are on the border of human life.” He sighed. “The mistake physicians make with chronic pain patients is that they assume that if they can’t fix most of the patients’ problems, they can’t fix anything. They’re too overwhelmed to find the treatable piece.”

Dr. Carr’s interest in pain began as an intellectual one. After training as an internist and an endocrinologist, in 1981 he published the landmark study of runners that showed that exercise stimulates beta-endorphin production. He hypothesized that the increased endorphins lead to a runner’s high that temporarily anesthetizes the runner—the stress-induced analgesia of our ancestors running from the tiger. If the runner’s high is an example of how a healthy body successfully modulates pain, Dr. Carr began to wonder, then what abnormality leads to chronic pain? One way to think of pain is to see it as the presence of a disease—a nervous system gone amok—but another way to think about it is as
an absence of health
: the failure of the normal controls that successfully modulate ordinary pain.

Dr. Carr decided to do a third residency in anesthesia and pain medicine, and he became a founder of the multidisciplinary pain center at Massachusetts General Hospital and a director of the American Pain Society. Pain clinics are scarce: the time-consuming nature of patient care, and the lack of quick moneymaking procedures on which insurance reimbursement systems are based, means that these clinics tend to lose money, and they maintain a precarious existence.

I had had pain for a few years when I was randomly offered a magazine assignment to write about chronic pain. The assignment had been one of several article possibilities: personal bankruptcy, a murder, a profile of a celebrity I pretended to have heard of. My editor and I were at a Japanese restaurant in midtown; I was poking at my sushi, thinking wistfully about how hungry I always used to be, before I had pain, and how I used to love being taken to lunch and ordering lots of courses. Through the glaze of misery I heard the editor’s idea. “Pain?” I said, waking up. “Does pain treatment even work?”

After I had finally gotten a diagnosis, I tried some pain treatment, which mitigated but decidedly failed to resolve my pain. I had no confidence in any treatment methods because I didn’t understand how they were supposed to work, and I didn’t want to understand—I just wanted to be cured. But for the first time, in Dr. Carr’s clinic, observing other patients’ treatment, I began to wonder about the nature of pain itself.

Before going to the clinic each morning to observe Dr. Carr for my article, I dressed carefully in a skirt and pointy shoes, anxious that the patients not realize that I am one of them. Still, it surprised me that none of them saw it, this scarlet
P
on my chest. I smiled tightly when the patients caught my eye. “Sounds dreadful!” I would say when they regaled me with their stories. “Hope you get better!”—
I haven’t.
—“Thanks for letting me observe!”

“If for some disease a great many different remedies are proposed, then it means that the disease is incurable,” a character quips in a Chekhov play—a truth surely illustrated in the field of pain management. A pain doctor’s kit has plenty of tools. There are drugs, such as antidepressants, antiseizures, anti-inflammatories, opiates, and opioids. (
Opioids
is the general term both for natural opiates derived from the opium poppy and for their synthetic counterparts, such as methadone and OxyContin, even though
opiates
is commonly—if incorrectly—used to refer to both.) There is also physical therapy, traction (to reduce pressure in the spine), chiropractic manipulation, steroid and other kinds of injections, surgery, and psychological treatments and techniques such as hypnosis, stress management, biofeedback, acupuncture, meditation, and massage.

Rarely do any of these prove to be a cure, but they can help modulate pain, offering patients “a toehold” to climb out of chronic pain syndrome, Dr. Carr said, “or at least slow the descent.” Without intervention, the descent can be steep indeed. Most people with chronic pain sleep poorly (a problem exacerbated by opioid medications, which fragment sleep). Over time, sleep deprivation—a time-tested form of torture—can create the symptoms of mental illness. Yet insomnia can be treated with medication such as trazodone (which, unlike many sleeping pills, is not physically addictive, and the effects of which do not generally diminish over time). Many pain syndromes cause deconditioning and guarding behavior of the afflicted area, which can lead to muscle atrophy, which further impairs mobility and causes greater pain; physical therapy can intervene in the cycle. Pain can cause depression, which in turn causes more pain, yet depression can often be treated.

Dr. Carr’s patients acquired their pain through all manner of diseases or accidents. They suffer from migraines, multiple sclerosis, rheumatoid arthritis, osteoarthritis, and fibromyalgia. And many people who suffer from chronic pain have no specific diagnosis at all. Back pain, for example, is one of the most common reasons for visiting a medical clinic, yet studies have suggested that for up to 85 percent of such cases, no definite diagnosis can be made. People whose backs look normal on a scan can feel extraordinary pain, and people with scans that indicate problems often feel fine. The back is too tightly wired to distinguish nerve from joint from muscular pain. This causes patients much unhappiness. What they don’t realize, however, is that it is not necessary to have a definite diagnosis in order to get well; treatment options are sufficiently limited that a patient can systematically work through each one.

Of all the patients of Dr. Carr whose treatment I observed, the last patient on one day, Lee Burke, was perhaps the one whose story provided the most insight into the current state of contemporary pain management because her diagnosis and treatment turned out to be so simple, while the fallacies that worked against the diagnosis being made earlier were so numerous and so revealing of the problems of pain treatment.

Seven years earlier, Lee told Dr. Carr, she had learned that she had one of the most survivable varieties of brain tumor, a growth known as an acoustic neuroma that nestled behind her left ear. The tumor was benign, but its effects were not: as it grew, it threatened to squash useful parts of her brain. The recovery period from the surgery to remove it was supposed to be a mere seven weeks. Instead, she said, she awoke from surgery with an unforeseen problem: headaches—lancinating, lightning-hot pain—that knocked her out for periods ranging from four hours to four days. She lost her job as vice president of human resources at a real estate firm. A delicate-featured fifty-six-year-old woman in a blue cotton sweater that picked up the blue of her eyes and the gray in her hair, she cried as she told Dr. Carr how pain came between her and her husband when her headaches kept her in bed. She left him, and their money, and their million-dollar condominium in downtown Boston.

“It was easier to be alone with the pain,” she said. Like the wounded animal that instinctively separates itself from the herd, many patients with chronic pain are alone. “I couldn’t hold anyone,” another woman who was suffering from a frozen shoulder explained to me. “My hands were full with pain.”

Because the head is the exclusive home of four of the five senses by which the brain is informed of the outside world, it is commensurately well protected by sensory nerves. Indeed, with the exception of the hands, the brain devotes more space to processing sensory information from the head than it does to the entire rest of the body. Damage to facial nerves thus has the capacity to cause great suffering.

Dr. Carr asked Lee to describe the headaches. Like most of the hundred-odd patients I observed in various pain clinics trying to describe their suffering, Lee seemed stumped by the question. Elaine Scarry characterizes pain as not only
not
a linguistic experience, but as a language-destroying experience. “Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language,” she writes, citing Virginia Woolf’s famous observation that “English, which can express the thoughts of
Hamlet
and the tragedy of
Lear
, has no words for the shiver and the headache . . . [L]et a sufferer try to describe a pain in his head to a doctor and language at once runs dry.”

Part of the curse of pain is that it
sounds
untrue to people who don’t have pain. Patients grope at metaphors that seem melodramatic, both far-fetched and clichéd. “A hot, banging pain, like an ice pick,” a homeless man described the diabetic neuropathy that scalds his thighs and feet as the small nerves die, deprived of oxygen by the disease. “It heats up and then sticks it in, again and again,” he told Dr. Carr. “It holds my feet in the fire.” He broke off, his face twisting into the particular stricken bewilderment that I observed on the faces of patients whom I watched in different pain clinics describe their afflictions:
What is tormenting me and why?

“It’s like being slammed into a wall and totally destroyed,” Lee said. “It makes you want to pull every hair out of your head. There’s nothing I can do to defend myself. It’s like knives are going through my eyes.” She started to weep again.

I felt the need to interrupt—to contradict or console. But Dr. Carr sat calmly as she blotted her face, his concentration fixed, his hands folded reassuringly across his lap, with the equable, impersonal kindness of a priest or a cop. Almost all of the patients during the long day broke down during their appointments. Perhaps because their lives echo the chaos in his own blue-collar Irish-Catholic upbringing as the son of an alcoholic bartender, he said, he isn’t alarmed when patients scream at him. He is neither indifferent to emotion nor distracted by it; at all times, his focus is on the culprit—the shape-shifter, the pain.

Dr. Carr asked Lee to close her eyes, and he tapped her head with the stiff corner of an unopened alcohol wipe. Within a few minutes he had found a clear pattern of numbness that suggests that one of the main nerves in her face—the occipital nerve—was severed during her surgery. It was clear from their differing expressions that Dr. Carr regarded this as revelation—the demystification of her pain—and that Lee had no idea why.

I felt her bewilderment:
What was the connection between tapping with an alcohol wipe and the bottomless sorrow of her experience?

Lee’s voice became small as she asked, “If the nerve was cut, how could it cause pain?”

THE UNDEADNESS OF DEAD NERVES

How, indeed?

It is only recently that such phenomena have been understood. Doctors used to be entirely confident that severed nerves could not transmit pain—
they’re severed!
Nerve cutting was even seen as the solution for many pain syndromes in the nineteenth and the first half of the twentieth centuries, a treatment no more effective than the old European practice of cauterizing wounds with boiling oil (standard until Ambroise Paré ran out of oil on the battlefield one day and noticed the next morning that the patients he had neglected to cauterize had fared better than those whose limbs had been helpfully scalded with boiling oil).

Americans are routinely schooled about many things, yet the inner workings of our bodies remain more remote than the turning of the planets. Certainly I had no model in my mind of the nervous system. I knew that severed nerves in the spinal cord cause paralysis. But I did not know that there are different types of nerves and that movement is enabled by motor neurons, whereas pain is transmitted by sensory neurons. Damaged or severed sensory nerves can cause only numbness, but they can also grow back irregularly and begin firing spontaneously, producing stabbing, electrical, or shooting sensations. Destroying sensory nerves as a treatment for pain usually makes sense only in the case of terminally ill patients who will die before the nerves begin to regenerate.

“Sensory nerves can come back,” Dr. Scott Fishman quipped, “and when they do, they come back angry.”

Indeed, nerve damage is now understood to be the cause of many chronic pain syndromes. The undeadness of dead nerves is at the center of the mystery of chronic pain—the ghost ringing the church bell in the empty steeple, signaling destruction on the land. Much chronic pain is now understood to be neuropathic—a pathology of the nervous system originating either in damage to the central nervous system of the brain and spinal cord or in damage to peripheral sensory nerves.

I took notes on science, medical terms, and studies in a pink spiral-bound notebook, which (unlike my green “Patient Interviews” or my yellow “Representation of Pain in Art, Lit, and Religion” notebooks) I presumed would be the boring notebook. In fact, I had allotted science my favorite color in order to offset its expected tedium. But the more I researched the science of chronic pain, the less dry and the more menacing it seemed.

Physical pain changes the body in the same way that emotional loss watermarks the soul. The body’s pain system is not hardwired, but soft-wired (what neuroscientists call “plastic”), and it can be maladaptively molded by pain to increase its pain sensitivity. Ordinarily we think of neuroplasticity as being a positive trait: as the brain adapts to its circumstances and learns new things, new nervous pathways are laid down and old neural pathways disappear, the way the forest reclaims an untrodden path. But in the case of persistent pain, neuroplasticity is negative. The nerves in the spinal cord become hyperexcitable and begin spontaneously firing and recruiting other nerves in their service, and the whole system revs up to be increasingly responsive to pain, in a phenomenon discovered by the pain researcher Clifford Woolf and termed
peripheral sensitization
(when hypersensitivity occurs in the periphery of the body) or
central sensitization
(when hypersensitivity occurs within the central nervous system).

While the threshold to trigger the damage-detecting sensory neurons (nociceptors) is normally set by evolution at a relatively fixed point for all members of a species, peripheral sensitization and central sensitization lower that threshold, so that ordinary stimuli become painful. Central and peripheral sensitization routinely happen in a mild way after any injury, to protect the area. If you burn yourself, for example, an hour later a circle of redness will develop around the wound as the injured nerves transmit messages to the neighboring nerves, and the whole area develops an abnormal sensitivity. This heightened sensitivity serves the adaptive function of discouraging contact with the damaged tissue. If you take a bath, warm water that feels pleasant on most of your body will suddenly sting the burned area. To someone whose nervous system has been sensitized by a migraine, loud noise or bright light will hurt.

Normally, the wound begins to heal and the sensitization disappears. But in some chronic pain syndromes the sensitivity endures. Harmless stimuli—pressure or light touch—become painful, in a phenomenon known as
allodynia.
Ordinarily, light touch is transmitted by different nerves from those that register pain. In allodynia, however, the light-touch nerves change so that they function as pain nerves. To someone suffering from allodynia (which can afflict sufferers of the pain syndromes trigeminal neuralgia, postherpetic neuralgia, fibromyalgia, and peripheral neuropathy caused by injury or by a disease such as diabetes), tears can scald, a caress can feel like a blow, and the light pressure of a sock can feel like the hot iron shoes in which the wicked queen in “Snow White” was forced to dance until she died. Patients become, literally, afraid to move.

While allodynia involves harmless stimuli being misperceived as pain, chronic pain sufferers can also suffer from heightened sensitivity to painful stimuli, in a process known as
hyperalgesia
that involves an amplification of pain signals (in the periphery, or in the spinal cord, or in the brain itself). Hyperalgesia can endure long after its initial protective function has been served.

Pain begets pain. The longer that pain pathways relay pain messages, the more efficient those pathways become, causing greater pain to be transmitted, the way a stream carves a path through land, so that over time, it flows more quickly and turns into a river. Research by Allan Basbaum at the University of California, San Francisco, has shown that progressively deeper levels of pain cells in the spinal cord are activated with prolonged injury.

Hyperalgesia is a feature of many pain syndromes. Diabetic neuropathy, for example, can damage the nerves in one foot, causing local pain and numbness in it. Yet as the sufferer’s entire nervous system is changed by pain over time, the other foot can become hyperalgesic as well, even though the nerves in that foot appear to be normal. Like the multiplying swarms of demons who slipped through the unguarded openings of the ancients’ bodies to gorge on their blood and feast on their organs, the pain that pain spawns is ever more malign.

In short, I scrawled on the cover of the pink notebook,
“Bad, bad news.”