Did my doctors miss something?
How can I recover?
According to Dr. Gary Kaplan, conventional thinking about the nature of chronic pain and depression is essentially flawed. Although physicians continue to diagnose conditions like migraines, fibromyalgia, chronic fatigue, chronic back pain, depression, anxiety, and PTSD, a growing body of research shows that these are in fact symptoms of something else—a deep-rooted inflammation in the brain. This inflammation can affect the nervous system for months-even years-to devastating effect.
In Total Recovery, Dr. Kaplan demonstrates that it is possible to quiet the inflammatory state at the root of chronic pain and depression, and lays out a revolutionary new medical approach to ending your suffering and reclaiming your health.
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THE ONE-TWO PUNCH
WHAT IF ASSAULTS ARE CUMULATIVE?
Study the art of science. Learn how to see. Realize that everything connects to everything else.
Leonardo da Vinci
This was the moment he lived for. Perched on a single snowy peak surrounded by a formidable range of peaks yet to be conquered, Billy surrendered to gravity. Leaning forward, he slid quickly down the slope, faster and faster, casting plumes of powder in his wake.
With so little effort --less than a thought--Billy was back where he belonged, carving up the mountain with carefree pirouettes, deep into the powerful compulsion that he and his snowboarding tribe called shreddin' the gnar.
Like most 14-year-old snowboarders, he was still considered a "grommet," but Billy Kass could hold his own. His parents had given him his first Never Summer board when he was 5 and his brother, Travis, was 8. Like some kind of rite of initiation, Travis introduced Billy to the secrets of the mountain. Nodding for Billy to follow, Travis had shown him how to ride a slow S-curve to the bottom. He'd been following Travis ever since.
The 3-year lead Travis had over Billy gave him a distinct advantage. At 16, Travis was all flash and fury. Billy was more wry and understated--not that he couldn't have been the one making noise, but that riff was already taken. So Billy played counterpoint.
Gliding down the slopes together, they wove in and out like a perfectly syncopated song. Travis would line up a 180 "fakie," a 360, a 180, and Billy would intuitively echo the moves.
Gillian, the boys' mom, had almost gone pro back in the day, and their dad, David, had managed to build a meaningful career in environmental science that kept him on the mountain and made skiing a constant part of his life. Travis and Billy dreamed of one day making their fortune together with an environmental tech start-up.
At 14, Billy was more of an idea guy than Travis. As he swooped down the mountain, Billy realized that, of the two of them, he would probably be the one to come up with the brilliant tech idea they needed. He decided to mention that to Travis when they reached the lodge. The idea might not come to him for years, but there was no reason he couldn't start lording it over Travis now.
First, he wanted to "jib" the 20-foot rail up ahead with an enticing 10- foot drop to flat. Leaping on the rail, he rode it all the way down, planning a smooth 180 at the end, but he didn't quite make the full revolution. His hand slammed into the rail on the way down and he landed hard, twisting his back and almost wrenching his knee from its socket.
The emergency medical team at the ski resort stabilized Billy's broken wrist and sent him to the hospital. Doctors there confirmed that he did not have a concussion and set his wrist. His left knee was very swollen and tender to the touch. If he tried to stand, his knee wobbled so badly he nearly fell.
When the orthopedic surgeon ran an MRI, it showed an anterior cruciate ligament (ACL) tear. The ACL is one of the four major ligaments in the knee. It emerges from inside the femur itself. An ACL tear is a common injury in athletes, and the ligament is so vital to the stability of the joint that it has to be repaired as soon as possible.
The surgeon scheduled surgery for a month later. In the meantime, Billy would have to keep his knee immobilized in a brace. He couldn't even use crutches. When the doctor rolled out the wheelchair, Billy's heart sank.
Travis reminded him that sports injuries were a drag but only temporary. Still, Billy counted the days till he could take off the brace and get back on the slopes. By spring, he would be back to normal again. Or so they said.
After surgery, Billy had to wear the knee brace for another month. On top of physical therapy, he spent an hour every day locked into a continuous passive motion device to keep the knee moving in a controlled way and help it regain its full range of motion.
The physical therapist explained that his knee would gradually become more flexible as it healed, but that isn't what happened at all. As the weeks went by, the swelling in Billy's knee continued. The slightest pressure caused an unusually painful reaction.
Eight months after surgery, Billy was only one wrong move away from full- body pain at any time. Horsing around with his friends in the living room one day, he bumped into the doorjamb with his shoulder. A jolt of pain shot through his arm with startling intensity. After that, Billy had what his doctors described as generalized pain--his whole body ached all the time.
In almost imperceptible increments, he gradually started to move like his elderly grandmother, feeling fragile, afraid of being hurt. Travis tried to tease him out of it, but Billy's discouragement was too deep. He lost all interest in hanging out with friends.
Despite his family's concern, he was sliding down a precipitous slope into depression. Travis couldn't even interest him in daydreaming about their future in environmental tech. If snowboarding wasn't going to be a part of that life, Billy wasn't interested. Under the assault of the constant pain, Billy reeled and couldn't catch his balance, just as he couldn't save himself in the fall. Increasingly, he was in danger of letting that fall become a metaphor for his life. Looking on, David and Gillian were heartbroken to realize that if something didn't change, their son's life was going to be defined by perpetual pain.
During the next 6 months, he would be rushed from one hospital to another. Again and again, the x-rays, CT scans, and other testing would show no pathology. A spinal tap failed to provide answers.
Neurologists, pediatricians, physical therapists, pain specialists, knee specialists--any specialists they could find--were consulted, to no avail. Not knowing what else to do, the doctors would hospitalize Billy on intravenous morphine until the crisis gradually subsided; then a few months later, the pain would flare up again.
When no physical explanation could be found, the psychiatrists were called in. It was easy to assume that if the doctor couldn't find the problem, the patient must be imagining things.
Accusing any patient of exaggerating pain to get attention would have been humiliating. When the patient was a happy, dedicated teenage athlete with a tight-knit social circle, it bordered on malpractice. After a 5-minute interview, one psychiatrist jumped to the conclusion that Billy was "malingering" to get attention and all but told him to snap out of it and "man up!"
From Gillian's point of view, it should have been obvious to anyone-- especially a professional--that Billy simply didn't have the temperament of a malingerer desperately feigning an illness to get attention. He had plenty of attention. What he needed was to get back on his board.
Travis was 18 now, heading for the slopes with their friends every weekend, which didn't make it any easier. Even in the off-season, he finagled a coveted job at Oregon's Timberline Lodge, the only ski resort in the country with lift-accessible snow all summer long.
In near constant communication on Twitter and IM, Travis tried to lure Billy back into the game, raving about 20-foot elbow rails, big wall rides, pole jams, jibs, and jumps. He never really came out and said he didn't believe that Billy was in pain, but his relentless enthusiasm was laden with expectation. Whether he meant it or not, it sounded like he felt that if Billy really wanted to, he could shake off the pain.
"Remember that crash of mine where I plowed into that mogul 2 years ago and broke my wrist in three places?" Gillian overheard him saying one day. "Hurt like hell . (. (. "
"But you went back out with a cast on. Yeah, I know," Billy muttered. The implication did not slip past him; it slid right through, like a sliver in his heart. "It's different for me, Trav." What else could he say?
As the pain became chronic, the growing list of emergency hospitalizations with normal test results started to work against Billy. Rather than wondering if something had been missed, doctors would assume the pain was psychological before they even met him. On top of Billy's chronic pain, the doctors--and an increasing number of his friends--were adding a new barrier for him to contend with: disbelief.
Months went by without any sign of hope. Then one night, David and Gillian attended a dinner party with David's colleagues in the environmental sciences. The keynote speaker was a medical doctor and avid skier. After dinner, the conversation turned easily to their mutual passion. When Gillian mentioned Billy's unusual symptoms, the doctor asked a few questions, then frowned thoughtfully.
"We haven't heard anything that remotely explains what he's going through," David said.
"Have you heard about reflex sympathetic dystrophy?" the doctor asked.
When David and Gillian got home and looked up the condition late that night, they were startled by how well the diagnosis fit.
AN UNSOLVED MYSTERY
Reflex sympathetic dystrophy (RSD) is characterized by severe and continual pain out of proportion to the original injury. It later became known as complex regional pain syndrome.
Widespread physical pain can be caused by a number of conditions. Under any circumstances, it is difficult to make a firm diagnosis. Even when the diagnosis is accurate, the pain's origin is often mysterious. A punctured finger, a bumped head, a broken toe--small injuries usually start the process. The initial wound heals, but for some reason, the pain spreads and intensifies.
When they first heard the diagnosis, Billy and his parents were relieved. Until then, his symptoms hadn't made any sense. After the ACL surgery, he should have felt better, not worse. Naming his condition gave it a kind of validity. It meant he wasn't imagining things. Other people had it, too.
"At least now we know what it is," Gillian sighed.
What she didn't realize was that naming a thing is not at all the same as knowing what it is. The truth is, we've known about reflex sympathetic dystrophy for more than 160 years and we still don't know what causes it.
The first doctor to describe it was Silas Weir Mitchell. In the 1860s, at the height of the American Civil War, he spent his days in triage for soldiers dragged from the battlefield with brutal gunshot wounds and bayonet injuries. At 30 yards, a musket ball could pass all the way through a soldier. The damage was almost always fatal. Often the less serious wounds were so contaminated by mud or bits of cloth and gunpowder residue from the barrel of enemy muskets that, by the time Mitchell saw them, his patients were already septic.1
What puzzled him more were the men who experienced debilitating pain even after their wounds had healed. A relentless burning sensation around the wound would move to an uninjured part of their bodies for no apparent reason. Gradually, all of their skin would become so sensitive that the slightest touch or vibration would cause them searing pain.
Dr. Mitchell, who would one day be known as the "father of neurology," originally called the condition causalgia, building the word from the Greek kausis (burning) and algos (pain).2 "Of the special cause which provokes it," he wrote, "we know nothing, except that it [is] sometimes followed [by] pathological changes from a wounded nerve to unwounded nerves."3
Almost 100 years later, physicians were still speculating. In 1952, Victor Kuenkel thought he had found a connection between the condition (known then as reflex sympathetic dystrophy) and the peripheral nerves. He pointed out that when any of the nerves outside the brain or spinal cord suffered injury, the blood vessels naturally constricted and caused pain. But if a patient had RSD, the pain could be prolonged indefinitely. Kuenkel suspected this was because the body had become hypersensitive to the normal levels of adrenalin in the blood.4 He may have been onto something.
Recent theories have also focused on the connection between RSD and adrenal hormones. Animal studies have shown that these hormones can activate pain pathways after nerve or tissue injuries.5 There is also some evidence that RSD may trigger and sustain an inflammatory response that prevents the body from healing.6 But none of these theories tell us why.
It's hard to treat a disease without understanding what causes it. So it should come as no surprise that, according to the Department of Neurosurgery at UCLA Medical Center, the standard medical treatment for RSD "is usually ineffective."7 Spontaneous remission sometimes occurs, but even the National Institutes of Health admits that people suffering from RSD occasionally experience "unremitting pain and crippling, irreversible changes despite treatment."8
Motivated by compassion, neurosurgeons have resorted to radical intervention: severing nerve pathways. Anesthesiologists have administered strong nerve blocks. Neither one is consistently successful.9 It seems logical that early treatment would help minimize the burgeoning cascade of pain, but there is no clinical evidence of this.10
When he was struggling to help wounded soldiers in the Civil War, Dr. Mitchell found that the most effective treatment was amputation. And even that didn't always help.11 As disturbing as it was to suffer unrelenting pain without an ostensible cause, it was more disturbing to experience the same feelings in a phantom limb.
Since Dr. Mitchell's day, the neurophysiology and treatment of RSD have remained elusive, but the unfortunate progression of the disease has become clear. For the first few months, RSD causes incessant, burning pain with joint aches and muscle spasms. Over the 6 months that follow, it intensifies. Bones turn soft as joints grow stiff. The area of injury, long since healed, remains swollen. The pain is unyielding. Arms or legs contort as muscles atrophy. Eventually these symptoms become entrenched. The patient descends into permanent disability.12
To be plagued by such intense suffering--from a trivial injury--with no possibility of relief is a prescription for despair. Is it any wonder that emotional suffering always accompanies this disease? "Under such torments," Dr. Mitchell wrote, "the temper changes, the most amiable grow irritable, the bravest soldier becomes a coward, and the strongest man is scarcely less nervous than the most hysterical girl."13
PAIN WITH NO EXPLANATION
The doctors at Cleveland Clinic prescribed aggressive mobilization of Billy's leg in physical therapy every day to treat it. To improve the temperature of his foot and leg, he was given sympathetic nerve root blocks 14 times. Afterward, the relief lasted only 12 hours at most before the pain came screaming back.
Table of Contents
Introduction: Thinking About Zebras: What Had to Happen First ix
Part I Asking New Questions
Chapter 1 The One-Two Punch 3
What If Assaults Are Cumulative?
Chapter 2 Listening for Clues 33
What If Physical Traumas Build Up?
Chapter 3 The Canary in the Coal Mine 61
What If Pain and Emotion Are Signs of the Same Thing?
Part II Solving the Mystery
Chapter 4 Eureka! 83
Discovering the Single Point of Origin
Chapter 5 Hidden Connections 107
How Allergies and Malnutrition Created Panic Attacks
Chapter 6 Conflicting Truths 129
How Food, Malaria, and a Fender Bender Led to Fibromyalgia
Chapter 7 Unsuspected Impact 155
How Childhood Abuse and Infection Caused Chronic Pain
Part III The Path to Total Recovery
Chapter 8 Stacking the Deck in Your Favor 179
What You Can Do
Conclusion a Game-Changing Insight 205
What It All Means