The Pain Chronicles

by Melanie Thernstrom

  “In our clinic, we’re trying to undo eons of pain history—problems that began in the Mesozoic era,” Dr. Carr commented. “The only real cure for chronic pain is prevention. But everything from physician and patient ignorance to managed care policies of delay, defer, deny means that by the time a patient gets to a pain clinic, it’s late. Sometimes I wish I could send them back to their early doctors and say, ‘Don’t you see what’s going to happen to this person if you keep letting this go?’ ”

  Leigh Burke complained of pain for more than a year after the surgery for her brain tumor before she was referred to a cancer pain specialist and anesthesiologist whom she liked very much. Her records do not even note whether her occipital nerve was cut, and (since the risk of chronic pain is not an issue surgeons usually consider) her surgeon may not have noticed the dental floss–size nerve. At any rate, the Nice Doctor, as she thought of him, did not investigate the nerve; what were visible to him were severe muscle spasms in Leigh’s head, neck, and shoulders.

  It was a classic pain misinterpretation. He seized on muscular pain as the primary problem—the pain generator—rather than a secondary symptom, and he diagnosed tension headaches. He injected her forehead with Botox—a preparation that, when injected into muscles in minute doses, essentially paralyzes them and thus prevents spasms for a few months. Although Botox is known mainly as a cosmetic treatment for reducing wrinkles, it is increasingly being used to treat a variety of medical problems, including headaches (even migraines).

  He also prescribed migraine medicines and tricyclic antidepressants (an older form of antidepressants, which are considered more effective against chronic pain than the newer SSRIs, such as Prozac and Zoloft, but have more troublesome side effects). She tried range-of-motion physical therapy, stress-reduction courses, psychiatric treatment, yoga, and meditation. She also drank a dozen cups of coffee a day—an ill-advised treatment for migraines (small amounts of caffeine help headaches; large amounts produce dependency and can create rebound headaches). The Nice Doctor steered her away from opioids with warnings about their addictive qualities. Instead, she took dangerously large amounts of ibuprofen and Tylenol.

  The Nice Doctor later explained to me that he felt comfortable with anti-inflammatory drugs and uncomfortable with opioids. Yet while large doses of the drugs are sometimes needed to treat inflammation, contrary to popular opinion, for long-term use, opioids can be a safer and more effective analgesic. Certainly, when I was overdosing on Tylenol, Advil, Motrin, aspirin, and Aleve, I would have been astonished to learn that. While anything over-the-counter seemed benign, I believed the rhetoric that opioids are a “gateway drug” that turn ordinary people into tragic statistics.

  Anti-inflammatories are most effective at easing the pain of—surprise—inflammation, which comes from injury or inflammation-causing diseases such as rheumatoid arthritis. Tylenol, which works through an unknown mechanism, is not in fact classified as an anti-inflammatory. (The effects of its basic chemical compound were originally discovered when a pharmacist’s mistake caused it to be accidentally given to a patient, whose fever was dramatically reduced.) It was introduced into the market in the 1950s, where it was a huge success, undermining aspirin’s market domination. Although Tylenol does not upset the stomach, taking the maximum recommended dose longer than the short period the manufacturer recommends can cause liver toxicity, liver failure, and even death (risks that increase greatly when these drugs are consumed with alcohol, as I used to do). The most common cause of acute liver failure in the Western world is toxicity from acetaminophen (the ingredient in Tylenol). An often-fatal disease, liver failure annually affects two thousand people in the United States. According to a 2002 study, while a majority of the patients had exceeded the daily maximum recommended dose, nearly one-fifth had not. Three-quarters of the patients were women, although it is not known whether women are innately more susceptible to acute liver failure or are simply inclined to take more over-the-counter medications.

  Aleve, aspirin, Motrin, and other nonsteroidal anti-inflammatory drugs (NSAIDs), as they are called, pose an even greater problem, causing stomach ulcers in as many as one-fourth of all patients who take them on a long-term basis. Each year 6,000 to 7,500 Americans die from gastrointestinal bleeding and related complications associated with taking NSAIDs.

  “IT’S HARD WORK BEHAVING AS A CREDIBLE PATIENT”

  Even as they endangered her life, the massive doses of Tylenol and aspirin medications failed to reduce Lee Burke’s pain to a manageable level. Seven years—a biblical length of time—elapsed, during which she became increasingly disabled. She went from specialist to specialist—headache specialists, balance specialists, and behavioral pain-medicine specialists—and her worsening condition was met by skepticism, contempt, irritation, frustration, and pity.

  Women report more frequent pain, as well as pain of greater intensity and duration, than men. They suffer disproportionately from pain-causing conditions, such as autoimmune diseases, migraines, headaches, musculoskeletal pain, and abdominal pain. In addition, they are more likely to seek treatment for pain than men are, and when they do, they present—or are perceived as presenting—more psychological symptoms. In medical literature throughout the centuries, the archetypal “problem patient” is a woman. Thus, a woman coming into the office of a male physician may find herself having inadvertently entered a highly coded complex social situation, the nature of which she may not understand and which may not serve her well.

  A fascinating 2003 Norwegian study by Dr. Anne Werner, a sociologist, and Dr. Kirsti Malterud, a physician and researcher, focused on the gender dynamics between women with chronic pain and their physicians. Entitled “It’s Hard Work Behaving as a Credible Patient,” the paper detailed the ways in which women with chronic pain symptoms try to discern and comply with the hidden rules of the medical encounter in order to get the help they need. The women described struggling to present their pain in a way that others will feel is “just right”: to make their symptoms “socially visible, real, and physical” and to achieve “a subtle balance not to appear too strong or too weak, too healthy or too sick.”

  The balance proves to be elusive. As in many other studies, the women provided accounts of how they were “met with skepticism and lack of comprehension, feeling rejected, ignored and being belittled,” and continually “tested” and “assessed” for psychological factors. “How assertive can patients be without appearing too strong to pass as . . . ill?” the women wondered. Although they felt they needed to be assertive in order to get referrals, pain medication, sick leave, and treatment, some of the women were working to demonstrate “appropriate surrender” and to appear to follow the doctor’s recommendations. Rather than confront their doctor with unmet needs, they often left him without saying why and paid for treatment themselves elsewhere. “You have to tread rather softly,” one woman explained, “because once you antagonize them, it’s not certain that you’re any better off.”

  The women were also busy trying to achieve “appropriate appearance” because they felt—as in the case of rape—that their clothes and appearance were used to assess their credibility. “Comments such as ‘You don’t look ill’ . . . or ‘you are so young’ made them feel irritated, sad and frustrated rather than flattered.” They tried not to dress too attractively. They were concerned that if they exercised, their illness would not be believed. One woman felt she had tried too hard in a test of muscular strength and thus was seen as healthier than other patients who had tried less hard. Another woman discovered that spending time in the sun had given her too healthy a glow when the doctor greeted her by saying, “You’re not ill!” She gazed at him in stunned silence, and he changed it to, “You certainly don’t look ill!” The young women were told they were too young to have chronic pain; the middle-aged women were told their symptoms were merely menopausal.

  Dr. Carr gave Lee a new medication—Neurontin—that has been found to be specifically effective against ne
uropathic pain. Invented as an antiseizure drug, Neurontin quiets the misfiring nerves responsible for neuropathic pain. He also told her to replace Tylenol and aspirin with Darvocet (an opioid) and Soma (a muscle relaxant).

  When I called Lee four months after her appointment with Dr. Carr, she said she felt 50 percent better from a combination of Neurontin, Darvocet, Soma, and other drugs. The muscle spasms—so rigid that the Nice Doctor compared them to railroad tracks—had melted. She no longer needed a snorkel for her daily swim because she could move her head from side to side again. As with opioids, the side effects of large doses of Neurontin can be considerable. But while her headaches sometimes required so much Neurontin that she was too dazed to walk, Lee was glad to be able to sit up to watch television instead of simply lying prone in agony.

  “Dr. Carr is my savior,” she said. I recalled the way she left the appointment, clasping his hand as if she wanted to kiss it and looking at him with hope so intense it was hard to watch.

  THE PARADOX OF PATIENTS’ SATISFACTION WITH INADEQUATE PAIN MANAGEMENT

  The outcome of pain treatment is rarely measured,” commented Dr. Woolf. “The doctor hopes the patient has gotten better, of course, but often as not they simply got discouraged and went away.”

  He recalled a surgeon giving a talk about the success of the dorsal column stimulator—an electronic device implanted in the spinal cord on the theory that it interferes with the transmission of pain signals (a treatment I considered for myself). Dr. Woolf found that the surgeon’s impressions were contradicted by one of his residents, who had actually communicated with the patients. The device was a surgical success, it turned out (it was properly implanted; the patients didn’t suffer infections or blood clots, etc.). It just didn’t help patients’ pain—or at least not enough to offset the buzzing feeling patients describe as similar to having a bee trapped under their skin. Patients (such as a West Virginian coal miner with back pain whom I met) sometimes elect to have dorsal column stimulators eventually removed, but not necessarily by the same doctor.

  Most patients avoid returning to doctors for whom they will represent failure, which would force them to confront not only the physician but also their own anger and disappointment. Fitting this pattern, I never let the orthopedist know I hadn’t had a bicycle accident. Whenever I considered it, I pictured myself starting to yell, I don’t even own a bicycle, and perhaps even bursting into tears, and who wants to make a call like that? After Dr. Carr gave her a new protocol, Lee Burke never spoke to the Nice Doctor again, so he was left to assume that she was satisfied with her care and that she no longer consulted him simply because she no longer needed to.

  Yet by the time she consulted Dr. Carr, Lee had been under the Nice Doctor’s care for seven years. Why had she stayed so long if she wasn’t improving?

  Many studies document that most patients do not get good pain treatment. A 2005 Stanford University survey found that of the chronic pain sufferers who actually went to a doctor, fewer than half received adequate pain treatment, while the American Pain Society found that the same is true of cancer patients. A 2008 survey by researchers at the University of Pennsylvania and the National Cancer Institute found that more than a third of breast cancer patients who reported pain did not use medication to manage it. The primary reason patients gave: their health-care provider did not recommend pain medication. (This reason was followed by fear of addiction or the inability to pay.)

  Why don’t patients demand adequate pain treatment? A 2002 study by the U.S. Cancer Pain Relief Committee explored a more confounding barrier, which it termed “the paradox of patients’ satisfaction with inadequate pain management.” Although 43 percent of patients said that they had experienced moderate or severe pain in the previous three days, only 14 percent said they were dissatisfied with their pain management, and 77 percent said they were satisfied or very satisfied with how their pain was managed overall! The study’s puzzling observation: “Recent pain intensity was not a significant predictor of satisfaction with pain management provided by the doctor.”

  Patients expressed resignation to their pain (commenting that they were “not one to take pills,” “can stand pain,” “hate to bother people,” “have to live with it,” “getting used to pain,” “hurt a long time”). Many believed their doctor had done his or her best (“doctors have done all they can”). “Patients also expressed acceptance of their pain because it was chronic, implicitly endorsing the inability of doctors to manage this type of pain, through their maximally positive ratings,” the authors observed. Willingness to take opioids greatly increased if the doctor or nurse explained that—when properly used—they were not addictive.

  It had previously been demonstrated that by far the single most important factor in the successful treatment of chronic pain is confidence and trust in the provider. This study found that a primary care doctor or nurse telling the patient that alleviating pain was an important goal predicted roughly as great a satisfaction as the patient actually sustaining relief within the past year. In short, “inadequate pain management in the context of a caring or otherwise good relationship with the doctor can lead to inappropriately low patient expectations concerning pain relief,” the study concluded—a conclusion echoed by the experience of Lee Burke. She said she never questioned the Nice Doctor’s care because he seemed so empathetic.

  When Lee’s ex-husband—a malpractice lawyer—saw how Lee improved after Dr. Carr’s treatment, he suggested that they sue the Nice Doctor. “But I would never do that,” she said. “There were times I was in tears from the pain and he was in tears with me.”

  The drugs that ended up helping Lee—Neurontin, Darvocet, and a muscle relaxant—are extremely common. Apart from opioids, Neurontin is one of the most widely used drugs to treat pain, popular not only with pain specialists but also with primary care physicians because it has no risk of addiction. What prevented the Nice Doctor from thinking of these options?

  My heart beat faster as I dialed the Nice Doctor’s number.

  I agreed with Lee that he was nice. He spoke about his concern for Lee and his frustration at the intractability of her condition. He also advocated the importance of a mechanistic understanding of pain and asked whether I knew the work of his Harvard colleague, Clifford Woolf. Contrary to Dr. Woolf’s findings, however, the Nice Doctor believed that the pain of all the patients who had the type of tumor that Lee had should be similar, and in his experience most patients did, in fact, “respond to simpler, more holistic therapies.” He was convinced that Lee suffered from tension headaches because she had such severe muscle contractions that even a light touch could make her wince.

  Although Dr. Woolf and others had stressed that most doctors do not take account of neuropathic pain, it struck me as telling that even a pain doctor—confronted with a case in which there was a clear-cut cause for suspecting nerve injury—could still miss the diagnosis of neuropathic pain by focusing on secondary symptoms, such as muscle contractions, instead.

  Because the Nice Doctor hadn’t thought of Lee’s pain as neuropathic, he had not considered Neurontin, and he feared opioids. “We don’t always do patients a favor putting them on high-dose narcotics,” he chided, assuming the particular intonations people do when borrowing language from the war on drugs. “If someone’s dying of cancer, there’s no drug we’re afraid to prescribe. But when a patient is depressed or anxious, you’re leery about narcotics,” he said. “With Lee, I guess I’d have to say I was being cautious.”

  His voice changed—softened and quieted—as he got to the real point: “I was afraid.”

  Lee recalled that whenever the Nice Doctor sent her to other specialists, she would break down during the appointments in pain and frustration. “They all just figured I was a basket case,” she said. “And I was. I was a basket case.”

  A 2004 study at the University of Milan School of Medicine asked 151 doctors to “tell us about an episode during your professional experience in which you found your
self in difficulty whilst confronting a patient who was in pain.” The paper identified three modes of discourse in which the doctors talked about their patients: the biological perspective, the professional perspective, and the personal perspective. Many of the doctors did not talk exclusively in any of these modes, but fluctuated among them in discussing different patients or even in discussing one patient.

  The biological perspective involves a “depersonalization” of pain—splitting off the disease from the suffering person. The doctor who assumes the biological perspective views the patient through the prism of pathophysiology. Yet such a mode collapsed every time that a simple biological model failed to explain a patient’s pain—as it frequently did. In the personal perspective, the doctor becomes deeply identified with the suffering of the patient. But this perspective has risks: he may idealize her and turn her into a “hero patient.” And when the doctor fails to be a hero himself by curing her pain, he may become a “hurt healer” and defensively distance himself from her, becoming upset and overwhelmed and even blaming her for failing to get better. Only the third perspective—the professional perspective—is able to reconcile science with compassion so that a patient’s pain is seen as a biological phenomenon, but one that takes place in the context of the person’s life, of which biology is only a part.

  The Nice Doctor seemed to empathize with Lee, but in an excessively personal way that clouded, rather than clarified, his clinical judgment. He became overly focused on her psychic distress, trying to explain her pain through that prism: “Lee’s pain seemed to be better at the times she was happier, was forming new relationships or helping others,” he said. “And even though she was motivated and worked hard on stress reduction, the fact remains, she is a tense person.”