The Pain Chronicles (13 page)

Pain Diary:

I Get a Diagnosis

“I’m ordering scans of both your cervical spine and your right shoulder,” my internist said. “It’s good to get to the bottom of problems before they become chronic.”

“How long does it take to become chronic?” I said.

“How long have you had it?” he said.

ONE’S WHOLE LIFE AND ONE’S FATE

I hope you get a good result,” Kurt had told me with a measure of anxiety the night before my MRI—anxious for me, but not only for me. I could sense his desire not to have a girlfriend with a health problem.
A good result—
I should concentrate on hoping for a good result. But what would that be? Ordinarily, it would be no result at all, proving the test to have been superfluous.

In the basement of the hospital, I shed my earrings and rings and blouse and bra and lay still, as if in a sarcophagus, as the MRI machine illuminated not merely the vertebrae but also the tendons, cartilage, and disks of my spine. The spine: the stem of the body, the vine from which everything flowers. I could feel the pain even then, like a white electrical current in my neck that flowed quickly through my right shoulder and sizzled in my hand—a pain I had come to know so well.

I tried to calm myself with the Christian Scientist tenet my grandmother taught me: “There is no life, truth, intelligence, nor substance in matter. All is infinite Mind and its infinite manifestation, for God is All-in-all.” The greatest fear of pain patients, doctors sometimes say, is that it’s “all in their head.” Infinitely scarier, I realized as I lay there, is the idea that it isn’t. I knew the machine was seeing my body in a different way and that its record would be irrefutable. My pain would no longer be a tree falling in the forest with no one (but me) to hear it. Through feeling and thought, pretense and denial, hope and despair, the machine knew: the tree crashing, the tent bones breaking, the leper laughing—the truth.

“There are situations in life in which our body is our entire self and our entire fate. I was my body and nothing else,” wrote the French philosopher Jean Améry of his time in Auschwitz. When I read his account in college, years away from pain, I thought,
Let that time never come. Let my body never be my fate.

The next week, when I was to meet with my internist, I would know my fate; I would know, that is, whether my body was to be my fate.

“Ah yes, the films and the radiologist’s report,” my internist said. He tacked the films up on a lighted screen set into the wall beside a life-size yellow plastic model of a skeleton. He traced his finger over the films, referring periodically to the structures on the skeleton as he began to explain. The more he talked, the more animated he grew. He liked to explain things, I could tell; he knew the material, he felt confident.

I pictured my body as a skeleton in a medical school class.

This is an example of cervical spondylosis
, the doctor was explaining to a sea of eager students.
Cervical spondylosis is a type of osteoarthritis. If you look closely at these vertebrae, you can see osteophyte formations on their surfaces. As the disks degenerated, the unprotected vertebrae rubbed against each other and developed calcium deposits, which are also known as bone spurs. The bone spurs impinge on the nerve roots, causing pain and weakness. Note that the opening of the spinal canal is abnormally narrow as well, the congenital problem of stenosis, which, in this case, aggravated the spondylosis.

This skeleton belonged to a woman, age thirty-three. She reported right-sided pain and weakness. Looking at the skeleton as well as the MRIs, we can see that the degeneration was, in fact, more significant on the right side.

Additionally, we can see a problem with the right shoulder here. In some people the space between the undersurface of the acromion—the bone at the top of the shoulder—and the top of the humeral head is narrow. This narrow passageway squeezes the rotator cuff—the tendons that connect the shoulder to the arm and allow it to rotate—causing what is known as
impingement syndrome,
with which this patient was diagnosed.

The only unusual thing about this skeleton is the patient’s age. Symptoms of cervical spondylosis typically first appear between the ages of forty and
sixty, although cases have been found in people as young as thirty. Normally, osteoarthritis is associated with aging, but in cases of premature wear such as this, the origin is presumably genetic, possibly aggravated by trauma.

It is not known if any specific trauma brought this on, but the patient’s history notes that she described herself as accident-prone and had broken this arm, as well as having incurred other injuries that may have contributed to the development of the condition.

What is the treatment?

Primarily symptomatic: physical therapy, pain management. The disease is most devastating when it begins early, as in this case. Over time, as the stenosis continues to narrow the vertebral passage, it may begin to impinge on the spinal cord itself—an emergency requiring immediate surgery to open up the vertebral spaces and try to preserve the cord. Patients must be monitored for signs of cord impingement such as loss of motor skills.

Married or single?

Single.

The relationship with Kurt—the long, false relationship—was over, I realized. Of course, of course, of course. I had deluded myself about the relationship, just as I had deluded myself about the pain. The two had seemed so confusing—confusing and confused—but now they were clear. My pain was not a manifestation of a personal, spiritual, or romantic problem and could not be alleviated by thinking of it that way; it was a biological condition, plain for a stranger to see.

“Questions?” the doctor said affably, and sat down at his desk. “Come now. What about what I said don’t you understand?”

“Will it get better over time?”

“It’s degenerative.”

“Can it be fixed?”

“No, it’s structural. Do you see?” He paused. “You’d need a new spine.” He smiled.

I almost asked whether as it degenerated, I would have more pain, but I was too afraid of the answer.

I broke up with Kurt that night.

III

TERRIBLE ALCHEMY:

Pain as Disease

A PARTICULAR CHAMBER IN HELL

In an antique illustration of hell I saw once, each of the damned had his or her own chamber, equipped with particular instruments of torture designed to fit—or rather, not fit, as the case was—the inhabitants, from the long rack for the short woman to the Procrustean bed for the giant fellow. It was a clever painting, a vertical cross section, like the bisected rooms of a dollhouse. Thick, damp walls separated each grotto so that if the damned could hear the screams of others, they would sound faint and faraway, and anyway, who can listen with ears filled with one’s own screams? No one came, and no one left. Even the devils seemed to have abandoned the place, leaving pain to do its perpetual work. Or perhaps the devils were pain itself: the invisible agent of agony writ on each inhabitant’s face.

Pain is eerily common. A consensus estimate, widely used in the field, is that as many as one in five Americans suffers from chronic pain. Pain costs society as a whole billions of dollars in disability and lost productivity. Demographics have changed as baby boomers age, so that a growing portion of the population is at risk for the diseases that lead to chronic pain. Life expectancy continues to increase, but who wants a life lasting 120 years if the final third of it is spent in daily pain?

Although pain is one of the primary complaints for which people seek medical care in America, there are only 2,500 board-certified pain specialists in the United States—roughly one doctor for every 25,000 patients with chronic pain. According to a 2006 survey, just 5 percent of chronic pain patients ever see a pain specialist. Consequentially, the treatment of pain remains primarily in the hands of ordinary physicians, most of whom know little about pain and don’t want or seek to know more. Medical schools and textbooks give the subject scant attention. Pain medicine as a specialty did not even exist until after World War II, when Dr. John J. Bonica—an anesthesiologist who had treated wounded soldiers—wrote the first comprehensive textbook on pain management in 1953 and was instrumental in the creation of the International Association for the Study of Pain, the first medical organization devoted to pain.

In the sixteenth century, Ambroise Paré defined the task of medicine as “cure occasionally, relieve often, console always.” How could pain have strayed from such a compelling imperative?

The reason that pain per se has not, until recently, been a focus of research is that pain was understood as a symptom of an underlying disease. On this theory, the remedy was plain: treat the disease, and the pain should take care of itself. Specializing in pain medicine seemed as absurd as specializing in fever—a form of making the cart lead the horse. Yet the actual experience of patients frequently belied the assumption that pain was merely a symptom, for chronic pain often outlives its original causes, worsens over time, and takes on a puzzling life of its own.

The idea that pain leads a life of its own turns out to be not a metaphor, but a biological reality. There is increasing evidence that over time, untreated pain eventually rewrites the central nervous system, causing pathological changes to the brain and spinal cord, and that these in turn cause greater pain. Even more disturbingly, recent evidence suggests that prolonged pain actually damages parts of the brain, including those involved in cognition.

One way of explaining this shift is to say that pain itself can now be a diagnosis. “Ninety-eight percent of doctors still say pain is a symptom, not a disease,” Scott Fishman explained to me. Dr. Fishman is chief of the Division of Pain Medicine at the University of California, Davis; head of the American Pain Foundation, an important patient advocacy group; and the author of
The War on Pain
, a genuinely helpful self-help book (that I wish I had read when I first got pain!). “Yes, pain is usually a secondary disease stemming from an underlying problem, just as blindness can be caused by diabetes. But that doesn’t mean it isn’t real and doesn’t need to be treated. And over time, it often becomes the primary disease.”

At first glance, the distinction between diagnosis and symptom might seem merely semantic. But in the medical context, semantics have proved to be of great importance. Getting depression recognized as a disease was half the battle in finding treatments and making them accessible to patients. The real question, then, is practical: What is the value of regarding pain as a disease? What are the results of doing so or not doing so?

Categorizing pain as a disease underlines the gravity of the threat it poses. “Pain can kill” is a motto of the new field of pain medicine—a motto that is not hyperbole. Far from being merely an unpleasant experience that people should endure with a stiff upper lip, prolonged pain turns out to actually harm the body by unleashing a cascade of neurochemical and hormonal changes that can adversely affect healing, immunity, and kidney function.

Evidence suggests that patients treated with adequate doses of opiates heal more quickly from surgery. Pain keeps people in bed after an operation, increasing the risks of problems such as blood clots. Chest and pulmonary injuries are associated with a high rate of death in part because the pain they cause makes patients breathe more shallowly. The air in their lungs stagnates and permits ordinarily harmless germs to settle in and cause diseases like pneumonia, necessitating the use of a respirator—which, in turn, introduces further risk of infection.

Adequate pain treatment may be important for general health and recovery from disease. Many of the hormones that regulate the processing of pain in the brain are also critical in regulating immune function. Stress hormones like cortisol increase with pain and impair immunity. Pain and immunity are both regulated by endorphins and local mediators of inflammation.

How could treating pain be controversial? one might ask. Why wouldn’t it be treated? Who are the
opponents
of relief? Very few physicians would declare that they don’t believe chronic pain exists, and although some might profess ignorance, few would say they are unwilling to treat chronic pain. Likewise, few members of the public would advocate suffering (especially if it’s their own). Yet conceptions about pain, like those about pleasure, are deeply entrenched—culturally, socially, and psychologically. Chronic pain is a disease that resists measurement, and patients’ self-reports are easy to dismiss or disbelieve. The cultural evolution of the understanding of depression may serve as a model for that of pain. Depression was once treated with denial (as not a real, medical problem), dismissal (as irrational emotion), and stigmatization (as something shameful that could and should be overcome). Eventually these attitudes gave way to the recognition of depression as an organically based, potentially fatal disease with both subjective psychological and objective physiological components.

If arriving at a new medical understanding of pain has been a difficult and protracted process, disseminating the knowledge will be more so. Although there is a scientific consensus about the reality of the disease, it has not gained widespread acceptance outside the small circle of pain specialists.

“My patients have seen an average of five doctors about their condition before they get to me—and some have seen a dozen, and gotten complicated and contradictory diagnoses—yet for the most part, their pain has not been treated in
the most obvious ways
,” Dr. Fishman said. California and other states have mandated continuing education in pain management as a requirement for renewing a medical license, following court verdicts such as a $1.5 million judgment awarded in 2001 against a San Francisco–area internist for having undertreated a terminally ill patient’s pain. In that case, the internist’s defense team argued that he had never received any specific training in pain management and that he had treated his patient as best he knew how—which is probably true.

Jim Mickle, a family doctor in rural Pennsylvania (and my friend Cynthia’s husband), described the leeriness ordinary physicians feel about treating pain: “Is it objective or subjective? How do you know you’re not being tricked or taken advantage of to get narcotics? Chronic pain patients are, generally, well—a pain. Most doctors’ reaction to a patient with chronic pain is to try to pass them off to someone who’s sympathetic. Or just to try to pass them off.”

What makes a doctor sympathetic to pain? Jim thought about it. “Someone who has pain himself,” he said. “Or has an intellectual interest—who isn’t interested in immediate results, doesn’t want to make money, has a lot of degrees. We’ve had a few in this area, but then they get all the pain patients sent to them, and eventually they burn out and quit.”