Medical Examiner

My Doctor Told Me My Pain Was All in My Head. It Ended Up Saving Me.

After a decade of mysterious running injuries and countless specialist visits, I found a treatment centered on neuroscience.

Woman walking with her hands on her head down a sunlit pathway with trees on either side
Emma Simpson on Unsplash

It began with a pulled muscle. Each day after school, as the sun sank dusky purple over the hills of my hometown, I’d run with my track teammates. Even on our easy days, I’d bound ahead, leaving them behind. It wasn’t that I thought myself better than them—it’s that when I ran fast, and focused on nothing but the cold air burning my lungs and my feet pounding, my normally anxious thoughts turned to white noise. Until, one day, something popped in my leg. I stopped. I limped a little, and then tried running again: sharp, hot pain radiated down my thigh. Panic flooded me, as I imagined weeks without running: weeks without a predictable break from my own thoughts, weeks immersed in adolescent loneliness. I was 14. Pain was about to define a decade of my life.

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First, I took a break from the sport—five months of stretching, icing, and waiting for the leg to heal. I returned to running, but soon after, I developed a throbbing pain in my back. The cycle repeated. Less than a year later, the pain showed up again, this time in my foot. My focus on healing my body became singular: I tried physical therapy and massage and acupuncture. I researched conditions that could lead to repeat injury. Maybe I had a rare soft-tissue disorder, I thought, or maybe early-onset rheumatoid arthritis. I let an osteopath stick a giant needle into my spinal ligaments, and inject me with sugar water, which is just as painful as it sounds. After a chiropractor recommended an anti-inflammatory diet, I subsisted on only meat and vegetables.

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I’d get a few good months—a joyful summer, a successful cross-country season. Then the pain would return again. As I prepared to leave home for college, my knees and ankles throbbed. For several months, my hip hurt so badly I dreaded even walking to the dining hall. Then, while scrambling to finish my senior thesis, neck spasms prevented me from leaving my bed for days. When I saw doctors, I hoped that they would discover something terribly wrong. They never did. “Have you tried psychotherapy?” one asked me. I had. I’d been in therapy for years.

When I eventually limped into the waiting room of a chronic pain specialist at New York University, it was my last-ditch effort before leaving the city and putting my graduate studies in science journalism on hold. I was incapacitated by a sharp popping sensation in my arms and burning in my hands and feet. I couldn’t climb a flight of stairs, type on a computer, or grasp the handrail of a subway car without pain. I would arrive at class or work already exhausted from the effort of getting there.

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The clinician listened to the story of my search for relief. He gave me a thorough examination. Then, he sat down across from me, looked me in the eye, and smiled as he told me that I was in excellent health. My pain was happening in my head. This answer was familiar. But unlike other physicians, this doctor didn’t seem perplexed by my pain. He assured me he believed that my pain was real, and that he was confident I’d get better. He had something to give me that would help.

In medical school, little time is devoted to pain—just 11 hours of lectures on average, according to an evaluation of more than 100 medical schools published in the Journal of Pain. Instruction on pain focuses almost entirely on elucidating a physical cause and fixing it, said James Hudson, medical director of the pain rehabilitation program at Mary Free Bed Rehabilitation Hospital in Grand Rapids, Michigan. Checking for signs of physical damage is an appropriate and necessary response to pain. A sudden searing pain in your knee might signal a torn ligament and require surgery and rest. But pain experts say that this understanding of pain, as a sign of physical damage, is woefully incomplete. Pain exists to warn us of danger, Hudson said. But when pain becomes chronic, as it does for around 20 percent of Americans, it often stops serving that purpose. Chronic pain lasts longer than three to six months. It may have a physical cause—it could be a sign of cancer or a gastrointestinal illness, for example—and all my doctors’ appointments to rule one out were important. But in many cases, pain outlasts injury and refuses to abate with treatments focused on healing the body.

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Contrary to how most people think of it, pain is more than just a message sent from point A (our body) to point B (our brain), said Luana Colloca, a pain neuroscientist at the University of Maryland School of Nursing. Instead, it’s more accurate to characterize pain as our brain’s interpretation of that message—an interpretation influenced by our emotions, thoughts, and beliefs. Pain might be a warning worth heeding; it might be a wild distortion of reality. This is the central message of pain neuroscience education, or PNE, which is what the clinician at NYU prescribed for me. PNE does not involve drugs or physical exercise. It was an unlearning of everything I knew about pain, in exchange for a new truth: My chronic pain wasn’t an indicator of physical damage in my body.

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PNE was developed in the early 2000s, when Australian pain scientist Lorimer Moseley began delivering hourslong lectures on pain neuroscience to patients with lower back pain. At that time, it was common practice for these patients to attend “back school,” where they’d learn about spine anatomy, proper ergonomics, and how to safely lift things—the kinds of things that help protect the back from further physical damage, but don’t necessarily change the pain someone already experiences. Moseley’s research found that back school didn’t seem to help these patients—but teaching them about the brain did. In the research world, Moseley’s ideas caught on quickly. Just a few years after his first clinical trial of PNE, the intervention began appearing in leading scientific journals, including the prestigious journal Pain. In the clinical world, it’s taken much longer to gain ground, said Daniel Clauw, director of the Chronic Pain and Fatigue Research Center at the University of Michigan Medical School. Recently, he’s been noticing more general physicians and physical therapists talk about the need for PNE. “It’s crept into the clinical fields,” Clauw said. “It’s not a tsunami. It’s more of a slow ooze.”

At its heart, PNE is pretty simple. One of the most common metaphors used in lectures describes pain as a smoke detector: It’s there to warn us of danger, but isn’t always totally reliable. Sometimes there’s a fire; sometimes it’s just your toast burning again. And sometimes the detector fails to go off—there can be damage to the body without any pain at all. In 1989, researchers at George Washington University Medical Center performed MRIs on 67 volunteers, none of whom had ever experienced back pain or sciatica. The study, published in the Journal of Bone and Joint Surgery, found that about one-third of them had “a substantial abnormality,” including spinal stenosis and herniated disks—conditions often attributed to chronic back pain. Remember, none of these volunteers had any symptoms. Seven years later, a follow-up study found that about half of the volunteers did go on to have back pain—but a solid half of that group had no physical defects. A more recent review, in the British Journal of Sports Medicine, combined the results of many different studies and found that between 19 and 43 percent of people 40 years of age and older with no knee pain actually had physical signs of arthritis.

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Then there’s the electric guitar metaphor, to which Clauw is partial. He explains to patients that the brain can act like an amplifier on an electric guitar: As it receives signals, it can turn the dials up and down, producing wildly different sounds from the same input. Fear, for example, turns the dial up. So when people react with panic to their pain, fearing that their pain will only continue to get worse, it acts like a self-fulfilling prophecy. In one study, published in 2017 in the European Journal of Pain, scientists followed 104 young men for three months after receiving back surgery. The strongest predictor of persistent pain—a common complication of the surgery—was the participants’ anxiety about their pain and tendency to pay attention it. Another way the dial can turn up: Chronic-pain sufferers learn to expect pain with specific movements or activities, bracing for it before it even starts. This expectation can create a phenomenon called the “nocebo effect”—what neuroscientists like to call “the evil twin of the placebo effect.” When you expect pain, it primes your nervous system to amplify the most innocuous sensations and interpret them as pain. To extend the guitar amplifier metaphor: The brush of a string might sound like a resonating boom.

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A central goal of PNE is to teach patients that they can control that amplifier or smoke detector—however you might think of your brain’s system for interpreting what your body is telling it. Nowadays, PNE comes in many forms. It might be a brief explanation given by clinicians in tandem with physical therapy or cognitive behavioral therapy. It might be an intensive lecture series and take-home worksheets. I was offered a lecture series and a support group. My graduate student insurance didn’t cover these services, so I went the DIY route: Alongside regular follow-ups with my chronic pain specialist, I turned to a multitude of workbooks, YouTube videos, and phone applications, all of which teach users about pain. I listened to interviews with chronic-pain researchers and to testimonials from former chronic-pain patients, explaining how changing their mind about pain helped them recover. I personally came to think of my pain as a neurotic parent who was doing their best to protect me, but whose hand-wringing I need to take with a grain of salt.

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What PNE is consistently good at is helping patients feel less anxious about their pain. Recently, pain scientists combined the results of 16 different studies on PNE, ranging in size from 12 to 120 participants. Their results, published in 2019 in the Journal of Pain, found that patients who received PNE were less afraid of activity and spent less time ruminating over their condition. In one of the studies covered in that review, scores measuring patients’ fear of movement decreased from an average of 28.7 on a 44-point scale to 16.1 for those who received PNE along with physical therapy. In a control group that only received physical therapy, scores decreased to only 24.1. That decrease in fear can translate into an increase in the ability to move, complete tasks, and participate in daily activities. In another study, which combined PNE and aquatic therapy, 72.4 percent of participants who received PNE experienced long-term improvements, compared with 44.4 percent of those who only received the therapy. It’s important to note that PNE is likely not working alone in these cases. Pain scientists emphasize that while PNE can have its own therapeutic benefit, it often acts as a foundation for other treatments, such as physical therapy that gradually introduces feared or painful movements.

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Since I was working my way through treatment mostly on my own, in addition to watching videos about nerve synapses, I learned to make lists of all my anxieties and to meditate to calm the fear of my own pain as I tried to go about my life. I remember a long walk I took on a Saturday morning shortly after I began PNE. The pain still radiated through my feet and ankles, but knowing that it wasn’t going to hurt me, I let it fade into the background. Instead of focusing on it, I remember noticing the way the early autumn light fell on the brownstone-lined streets, and thinking about breakfast. Within weeks, I began to notice that the pain wasn’t so bad.

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No longer worrying that it would worsen with exercise, I dug my running shoes out from under my bed. At first, I just ran for one block. My feet smarted, but I grinned as they pounded the pavement. The rhythm was familiar—it took me back to the joy of running alone at sunset as a teenager. The next day: two blocks.

Most people only experience small, temporary improvements in pain after PNE, if they experience any change at all. An analysis of five clinical trials found that participants’ pain didn’t decrease on average—but up to 45 percent of them experienced more than a 10 percent change in their pain. However, there are case studies that document patients who experience near total recovery after PNE. Pain researchers don’t totally understand why responses to PNE vary, why the smoke alarms in some brains seem to be simply broken, even in the face of repair efforts. I asked Akiko Okifuji, a pain researcher at the University of Utah Health, why some patients recover totally and others don’t. She laughed. “That’s the golden question.”

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What can make pain worse, however, is the cycle of being told that everything is just fine, without the help of a program or expert guiding you through what’s happening in your head. When I first began experiencing pain, my running coach tried to tell me that because my pain moved around my body, it probably didn’t have a physical cause. I took extreme offense at his dismissiveness. When doctors could not find a physical cause and summarily sent me on my way, the result was a spiral of frustration and worsening pain. I began to wonder if I was just dramatic or a hypochondriac. In a study published in the journal Pain, researchers found that clinicians are more likely to judge the chronic pain female patients report as exaggerated, less likely to offer pain medication, and more likely to offer psychiatric referrals—but without the specific recommendation of PNE. Regardless of the pain’s cause, “they don’t anticipate that it might affect patients’ lives” nonetheless, said Amanda Williams, a professor of clinical health psychology at University College London and an author on that study. Health care professionals walk a fine line when communicating with patients about their pain, she explains. Dismissal can trigger fear. Fear can worsen pain.

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In contrast, I found PNE deeply validating: It assured me that there was something wrong, something that I could work on. “These psychological components don’t mean the pain isn’t real,” Okifuji told me. “It’s a real phenomenon. It’s a biological phenomenon.” Most importantly, PNE offered me hope. “You’re young, you’re healthy. I’m confident you’ll get better,” my pain doctor told me.

It might have been an exaggeration of the odds, but he turned out to be right. In January, I drove out to a nature park in the middle of a weekday. The fields were golden-brown, and rain fell in a spray. The rhythm of my breath and feet drowned out my thoughts. As I hammered a hill, I felt a familiar twinge in my foot. I stopped and walked and felt my hot skin interfacing with the cold air. As I started running again, the pain became as innocuous as the burning in my lungs. And then, it was gone.

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