The Pain Chronicles

by Melanie Thernstrom

  The drug also made him disinhibited—impulsive and loopy. He was a self-made man, driven and disciplined, and with the disappearance of those qualities, so went the life he had constructed. He wrecked Lexuses. He quarreled with people and was unable to recall the quarrels. He abruptly abandoned his new wife, with whom he had been very happy, rushing through divorce proceedings, and then he just as abruptly reversed course to reunite with her.

  He switched to methadone (which many pain specialists regard as more effective for neuropathic pain), but it had the same psychological effects. “I lost friends, relationships, business opportunities—I lost ten years of my life,” he said. But like many people, he had had such searing experiences with pain that he had developed a horror of it and believed that his pain had to be completely medicated away, regardless of the damage to his life.

  After he had had pain for more than a decade, he had a surgical procedure on his heart called a cardiac ablation. While he was in the hospital recovering from complications, he realized his pain had changed. He was accustomed to being aware of the precise moment in each day that his medication wore off and he needed another pill. But this time, that moment failed to arrive—he found he was able to reduce from eight methadone doses a day to two to alleviate the lingering discomfort. “Just as mysteriously as it came, it mysteriously went away,” he said with wonder. He felt as if he had woken from a dream and returned to his former self. If only his decade could be returned to him!

  What was the connection between the heart procedure and his leg pain? A cardiac ablation attempts to cure abnormal heart rhythms by destroying the section of tissue causing a signal in the heart muscle to misfire. Had the procedure somehow reset his nervous system as well? Marc asked his doctors for an explanation, but they had none.

  It was as the Righteous Sufferer said:

  My illness was quickly over, [my fetters] were broken . . .

  The relentless ghost . . . returned [to] its dwelling.

  Many people are unable to go off opioids, because their nervous systems are accustomed to the drugs. As soon as they try to reduce their dose, they feel terrible “rebound” pain (which they do not understand is actually being caused by the drug and which they misinterpret as a sign that their underlying chronic pain is unendurable). For others, though, simply taking opioids causes neurological changes over time that worsen pain.

  Jose, a building superintendent in his early sixties, had come for a consultation because his pain had steadily worsened. The year before, he had injured his back while installing an air conditioner. He went to see his primary care physician, who gave him Percocet (oxycodone with acetaminophen) and then, when that ceased to control his pain, OxyContin. But the pain—which had been localized at the base of his spine—began to spread until his entire torso was affected. The doctor escalated the dose; the pain escalated in turn. The doctor ratcheted up the dose once more, to no avail, and finally referred him to the pain specialist he was seeing that day.

  There is increasing evidence of a long-suspected condition known as opioid-induced hyperalgesia in which some patients (and animals in laboratory studies) on chronic opioids become dramatically more sensitive to painful stimuli (hyperalgesia) or experience ordinary stimuli as painful (allodynia). This opioid-induced enhanced pain sensitivity appears to be distinct from patients’ original pain problems; it is often located in other parts of their bodies and has different qualities. In short, for these patients, opioids enhance the same kind of pathological pain sensitivity that is at the root of much chronic pain.

  Jose did not want to hear that he needed to withdraw from the medication. As soon as the doctor began to talk about tapering down, he stood up, crossed his thick arms across his chest, and muttered, “It hurts me to sit too long.” The doctor continued to talk. Jose shifted his weight from one leg to the other in a way that conveyed he wanted to leave.

  I saw the doctor hesitate. Should he try to convince him? The next patient was probably waiting. He let him go.

  SINISTER IDEAS OF PATHOLOGY

  Studies suggest that one of the best predictors of whether a patient will adhere to a treatment plan is the patient’s relationship with his or her doctor. In a good relationship, the patient and the doctor collaborate to create a wellness narrative: a story he or she can use to get better.

  “I’m so tired of feeling like hell, trapped in a bad body,” Danielle Parker told Dr. Russell Portenoy, the head of the pain medicine service at Beth Israel Medical Center in New York. “I’ve been feeling like a victim for a long time.” She crossed her legs, leaned an elbow on them, and propped her chin on her hands, so that strands of shiny blond hair fell forward over her shoulders. She was wearing tight black jeans and a small, shimmery top that exposed her delicate collarbones.

  She had been seeing Dr. Portenoy for a year at that point. Her pain had begun at the gym four years previously, she told me later. It was just after her thirtieth birthday; she was living on the Upper East Side, working as a freelance writer and in the bloom of health. She loved sports: tennis, parasailing, running, yoga. One day she was finishing her weight-training routine at the gym when a trainer approached her and asked if he could help with her workout. He was a large, muscular, 250-pound former military man from South America; she had a petite, 98-pound body. He asked her to lie on a mat to help stretch her out. First she lay on her back, and he stretched her legs. Then he asked her to turn over onto her stomach. But instead of the usual stretch, he grabbed her torso and, without explanation or permission, did a chiropractic maneuver of some kind on her upper back. She heard a popping noise and screamed in pain. “Oh my God, what did you do?” she cried.

  “It was a horrifying, traumatic moment. In a split second my life changed,” she recollected for me later. “I went from being a healthy person to a sick person.” When she was twenty-five years old, her mother had been murdered in Arizona. The injury “felt like the physical manifestation of what I went through when I lost my mother. First someone took my mother away from me, and then another person took my health.”

  The injury had herniated a disk in her neck and destabilized her spine. A disk herniation (sometimes also referred to as a “slipped disk”) occurs when there is a rupture in the outer, fibrous ring of the disk, causing the soft inner material to bulge outward. It causes pain in several ways. The inner material of the disk is itself irritating to the nerves and causes inflammation. The material can also get wedged against a nerve root, causing nerve compression, resulting in pain and numbness (if it compresses a sensory nerve) or a loss of mobility (if it compresses a motor nerve).

  She stayed up all night after the injury, sleepless with pain and fear. Her entire upper body was paralyzed by muscle spasms, such that she was unable to turn her neck or torso. Although she regained mobility after three months of physical therapy, the pain remained. She had had many injuries in the past—from sports, gymnastics, dancing—and they had all healed. But this one did not. “I developed a disease of pain,” she says. “My brain reads pain on a constant basis.”

  Dani began a medical journey in which she would see eighty-five doctors and spend a six-figure sum. When, after years of freelance writing, she finally landed a good full-time job at a magazine, she found she wasn’t able to sit for enough hours to perform her responsibilities there. She continued to freelance when she felt well enough, scheduling periods of time to lie down during her workdays. Although her husband was supportive, she felt isolated. Because the pain built throughout the day, she stopped going out at night. Her friends didn’t seem to understand her situation. When she tried to explain “my neck is on fire,” they’d respond, “you look normal.” She felt a burning, stabbing, tingling pain, as if “someone was lighting fires in my neck.” When she typed, pain shot down her arm, making her fingers tingle, and she had to stop and ice.

  “It’s like being in a long war with my body. I became very despondent. I realized, Oh my God, my life as I know it is gone.” When her husband asked h
er what she was going to do that day, more often than not her answer was, I’m going to see Dr. So-and-So.

  As often happens with back pain, the original problem leads to new ones as the injury distorts posture and prevents exercise. A few years after the incident she herniated two disks in her lower back. The neck pain “switched off, and the back switched on.” She redoubled her effort to find treatment. She saw chiropractors and acupuncturists. Since there was no way to know what type of pain she had, she tried all the different classes of pain medications. She tried OxyContin, which made her break out in hives and itch all over. She tried Celebrex, but she believed it caused her to gain weight and she felt she had lost enough of her body as it was. Physical therapy seemed dull and futile, although she tried it on and off numerous times. She saw Dr. Portenoy, who prescribed Percocet and Klonopin, an antianxiety drug that can also quiet misfiring nerves.

  “Am I taking too many opiates?” she asked Dr. Portenoy, looking at him intently. “Am I addicted?”

  “You are not addicted; you are physically dependent,” he reassured her. “It is totally different.”

  Her husband touched her thigh. I felt a pinch of envy and wondered what it would be like to have a partner who attended doctors’ appointments. Her feet, I noticed, were clad in stylish high-heeled black boots: a token of her former self—the blithe young woman who had no need for sensible shoes. I wondered if she realized how they distorted her posture, so that wearing them actually made it less likely that she would regain that self.

  Dr. Portenoy had sent her to see the clinic’s psychologist—as he did most of his patients—but she said she had stopped going. “I don’t want to talk about pain all the time,” she said. “I want a break.”

  “It’s fine if it’s a break, but you need to get back to it,” he said.

  “You always emphasize the psychological,” she said accusingly. She glanced toward her husband, a nice-looking music executive.

  “I think Dani should go back to the psychologist,” he said, looking directly at Dr. Portenoy. Dr. Portenoy urged her to go on Wellbutrin, an antidepressant that is sometimes used for patients with pain because limited evidence suggests that it can help alleviate nerve pain and because it does not usually cause sleepiness or fatigue. Unlike Zoloft or Prozac, Wellbutrin acts not only on the serotonin system but on the norepinephrine one as well, both of which play a critical role in the brain’s pain-modulatory system.

  “I don’t like the label of antidepressants,” she said. “I feel uncomfortable with the association of being on that type of drug.”

  “You’d be using them for the analgesic effect,” Dr. Portenoy said, but he made no attempt to explain how they worked.

  “You love to focus on the psychological,” she said again.

  “My note says that your pain is multiply determined: neuropathic, muscular-skeletal, and psychological,” he replied. But in attributing three major categories of causes to her pain and weighing none more heavily than the others, it sounded like he simply didn’t know.

  “I can feel my back swelling up!”

  “I’m not seeing swelling or feeling heat. You have perceptions of your body that no one else does. You can get misconceptions that can frighten you.” Dr. Portenoy’s tone was clinical—not accusatory, but not warm either. He was trying to dispel (as Sean Mackey describes it) sinister ideas of pathology. But the message did not seem to reassure her.

  “You think my disease is now chronic pain,” she said flatly.

  “Exactly,” he said, sounding pleased that she understood. “The last time I saw you, we talked about a lot of strategies. Where do you want to go?”

  “I’ve been doing the quintessential thing of doctor shopping.” She sighed. “Getting eighteen different opinions.”

  “No one can tell you it’s time to stop looking,” Dr. Portenoy said, “but I think it’s in your best interest to stop looking.”

  She asked about a steroid injection, but Dr. Portenoy said he couldn’t recommend one—by this point her pain was too diffuse to know where to put it. He recommended trying a new anti-inflammatory drug, a low dose of an antidepressant, and a return to physical therapy and to seeing a psychologist. But Dani seemed disinclined to do any of these things. The appointment was at an impasse.

  “You look a lot better,” he concluded. She had a fresh, wholesome girl-next-door beauty; despite her dark, sophisticated New York attire, she looked positively perky. The invisibility of her pain seemed to both flatter and disturb her. She put her lips together and smiled, a suspicious, quizzical smile. “But,” he added, showing his experience as a practitioner, “this isn’t to say you aren’t miserable.”

  “I sometimes felt that my husband and Dr. Portenoy were ganging up on me,” she told me later. “I kept feeling like, Is anyone really hearing what I’m telling you? I’m not freaking out, I’m in pain. Somebody, please help me . . .”

  THIS CURSE THAT I’M LIVING WITH

  The neurosurgeon John Loeser says that if a doctor does not believe his or her patient, the appointment will necessarily be a failure.

  Dr. Portenoy was an agnostic when it came to Dani’s pain. “I don’t know what her pain comes from,” Dr. Portenoy told me in his even, well-modulated voice at the end of the day as we walked out of the hospital. Of modest height and build, he has rust-colored, gray-flecked hair, with a beard, large glasses, and the serious, impassive, yet attentive demeanor of a psychiatrist. “She has disk herniations, but many people have herniations. Her pain may be partly neuropathic. Or it may be largely muscular. Or it may have been primarily psychological—depression and anxiety feeding muscular pain. If you ask me if a single incident could cause chronic pain for the rest of someone’s life, I’d say yes—absolutely. Whether Dani is that person, I don’t know.”

  Dani had sued the gym and the trainer, and that suit was still pending. Sometimes, Dr. Portenoy pointed out, chronic pain patients do not get better until their suits are concluded, because the necessity to prove their pain provides a conscious or unconscious disincentive to get better. But winning a suit does not always provide the imagined satisfaction. Daniel Carr recalled a patient of his whose lower back was crushed owing to a defect in the installation of the seat of his new car. During the years the patient was fighting his suit, he endured the pain by fantasizing about reparation: how the law would come down on the car company and compensate him for his suffering. But when the big check finally arrived and he truly understood that he could not buy the only thing he really needed—his old body—he ended his life.

  Three years later, when I checked in with Dani, she was worse. She was still trying lots of therapies. She received injections of Demerol, morphine, and Valium in her lower back. She took Klonopin and Vicodin. The Vicodin helped her pain, Klonopin helped her sleep, but nothing really helped. Her weight had dropped, and she felt weak and depressed. “I feel like I’m deteriorating,” she said.

  Although she told me that her lawsuit against the gym settled in her favor, the resolution did not provide the expected catharsis. “I felt victimized that I didn’t get to go to court and tell them what that bastard did to me,” she said, but her lawyer had advised against it, on the grounds that juries—especially after 9/11—were not always sympathetic to chronic pain. But at least the settlement money could help pay for her treatment.

  “There are cures for much more serious diseases,” she said wistfully. “I imagine a lot of pain patients die depressed and lonely—not able to live life as before.” She asked about other patients I had interviewed. “I bet you won’t find one person who is all better,” she said. She keenly felt “the domino effect of what it does to a person’s life. You lose friends; you lose coworkers; you lose everything. I felt like I was being stabbed in the heart when my mother died. Now I’m being stabbed in a different way—lying in bed, screaming in pain, being knifed over and over. Pain killed me. There was a different Dani before the injury.”

  She felt she had exhausted Dr. Portenoy�
��s repertoire. She recalled how one day she went to him and said, “I can’t live like this. When I think of living for the next fifty years in pain, I don’t want to do it.”

  The detachment she felt in his clinical manner gave way to a shared sadness and failure. “I saw a glimpse of his humanity. For once, he seemed like he was really sorry. He had a tear in his eye.” But she felt like they were talking about a patient with a terminal disease, for whom nothing more could be done—a message other doctors reinforced. She went to a surgeon and begged him to operate on her, but he declared her condition nonoperable. (Disk herniations do not usually require operations, because the fluid is eventually reabsorbed by the body.) Although she was lucky the surgeon was so honest, as back surgeries often worsen the original problem, she understood the word nonoperable to mean that her condition was hopeless, rather than simply that an operation wasn’t necessary.

  “I told the surgeon that I really want to have a baby, but I’m in so much pain I can’t imagine carrying a child. I asked him if he could give me a referral, and he said, ‘No—you’ve tried everything. You’re going to have to learn to live with the pain.’ It’s disgusting to be told you have to live with pain. It disgusts me!” she reiterated, as if trying to remind herself to reject that kind of thinking.