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CHAPTER 1
The Politics of Pain
Start by doing what's necessary, then what's possible, and suddenly you are doing the impossible.
— St. Francis of Assisi
Speaking with 32-year-old Heather was a draining experience. As a newly minted pain specialist, I had been asked to assess her head, neck, and shoulder pain, which had been plaguing her since she slammed into a wooden fence while chasing down a fly ball during a softball game. I actually had to read that part of her patient record a couple of times, for it was very hard to believe that this tired-looking woman slumped in a chair could have been dashing around a softball diamond just one year earlier. Now, simply walking was nearly impossible for her, for with every step, severe pain shot from her shoulders to the top of her head.
Depressed and anxious, unable to participate in any of her favorite activities — even going out for coffee with friends had become too difficult — Heather went from being an athlete to being "a champion sitter," as she put it, who had packed on thirty pounds in just twelve months.
According to her chart, Heather was on a number of different medications, but she still suffered from debilitating pain, plus depression, and had trouble doing her usual chores. The pain made sleeping through the night very difficult, no matter how many pillows she piled up, or how many different mattresses or sleeping aids she tried.
"I'm desperate to get a good night's sleep," Heather told me, "but either I'm awake because of the pain, or I have nightmares about hitting my head that keep waking me up." Constantly fatigued, Heather had trouble concentrating at work and was terrified of being fired from her job as a bookkeeper.
"My boss stuck me in the back room," she told me, her tone tinged with embarrassment. "I think it's because no one likes to see me grimacing and fidgeting all day as I try to get comfortable. Some of my work has been given to other employees because it takes me so much longer to get things done these days. And I can't even do what's left; at least, not very well. I have to write down every single thing because I'm so forgetful. Sometimes I even forget that I made a note. I can't remember when I'm supposed to pick up the kids, when their events are coming up at school, or what they told me ten minutes ago." She added, ruefully, "I'm not much of a mother anymore."
Since her injury, Heather had seen her primary care physician many times. He did his best to help her by trying various medications, then referring her to a bevy of specialists, including two neurologists, two spine surgeons, a psychiatrist, a pain specialist, and numerous physical therapists.
"But nothing has helped much," she sighed. "And a lot of them look at me that way."
"Which way is that?" I asked.
"Like I'm faking it because I'm really a drug addict who wants more drugs, or I'm some kind of nut. But I'm not a nut and I'm not a fake!" she said indignantly, her eyes tearing up. "Why won't someone believe me?! I'm not making this up!" Then she handed me a picture of a beautiful young woman with a big smile and shining eyes, standing next to a handsome young man. They had two smiling little children in their arms. I almost gasped out loud at the difference between the picture and the woman sitting before me.
"This is the real me," she insisted. "That's my husband and kids. We look like a happy family, don't we? And we were, but now I snap at the kids when they ask me for something. I really feel guilty about that — and about not wanting to be intimate with my husband anymore. I mean, I want to; I love him, and he's so nice to me. But when I come home I just ... I don't know, I just avoid everyone, go into the bedroom, close the door, and watch TV. I don't even like to be touched anymore; I'm afraid it will make me hurt worse. But that's not me! I don't like the way I behave now, and I don't like the way I look with all this weight. I just don't like me anymore."
How could the medical system have failed her so miserably?!?
A Daunting Problem
When I began practicing pain medicine in the 1990s, spinal surgery was really taking off. Armed with new diagnostic tools, implantable devices and surgical techniques, surgeons often operated on patients who had very complicated problems: long-standing chronic pain, associated difficulties such as depression or anxiety, addiction to pain medicines or other substances, work injuries, economic hardship caused by an inability to work, and more. Surprisingly, all of these problems were addressed anatomically. That is, the doctors used MRIs and other diagnostic tools to find some physical anomaly in the body that might be causing the problem — like a bulging disc — then tried to fix it. It's kind of like examining a person suffering from diabetes, finding elevated blood sugar, treating it with insulin, and believing you've cured the disease. Yet all you've really done is brought the blood sugar level down to normal temporarily; the underlying disease process continues.
Unfortunately, with this approach, most chronic pain patients left the hospital with more pain and greater anxiety, taking stronger medicines, and finding themselves less able to return to work or re-engage in other meaningful life activities. I often saw patients for the first time at this point, after they had been thoroughly disappointed by standard medical care. Why did standard treatment fail so often? Because chronic pain is not just a "body problem" triggered by a bulging disc, hairline fracture, strained muscle, or some other physical malady that refuses to heal. Chronic pain is aninterconnected body–brain problem. It starts with a body issue, but soon causes physical changes to the brain that quite literally turn a healthy brain into a "pain brain." Just like an errant immune system that attacks the body in the form of rheumatoid arthritis or lupus, the "pain brain" perversely floods the body with pain signals. And while the pain itself is bad enough, over time it leads to additional problems, including depression, forgetfulness, anxiety, fear, problems with work and relationships, and much more. Think of the "pain brain" as the accumulation of all of the changes that have taken place within your central nervous system that perpetuate your pain experience. It is the remodeling of the brain into an irritated, sensitive, inflamed, and beaten-down version of itself that must be overcome so that you can successfully conquer your chronic pain. We will dive deep into the latest science discoveries about the "pain brain" in the next chapter.
In the early days of my practice, I did what everyone expected of me, managing pain with the latest medications and procedures. But after I had seen many patients over the course of years, it became clear to me that while standard treatments could often reduce pain over the short run, they were not very good at decreasing it over the long haul, or eliminating it entirely. They were "quick fixes," not lasting solutions. Dismayed, I began delving into the scientific literature, "studying the studies" as it were. And two things quickly became apparent.
First, the overwhelming majority of studies on pain patients were flawed because they didn't follow the patients for a sufficient length of time. They showed good results over the course of days, weeks, or several months, but they didn't look at what happened after many months or years.
Second, even a casual look at the "pain numbers" made it clear that the health system was failing its pain patients. The numbers were frightening back then and today they're even worse. In 2011, the Institute of Medicine, which is part of the National Academies of Sciences, Engineering, and Medicine, reported that:
• At least 100 million American adults (one-third of the U.S. population) suffer from chronic pain — more than the combined total of people suffering from cancer, heart disease, and diabetes.
• Chronic pain costs the nation between $560 billion and $635 billion every single year to cover the costs of medical treatment and lost productivity. (This does not factor in the cost of human suffering, which is incalculable.)
• Caring for chronic pain patients places an enormous strain on the nation's medical resources, taking time and resources away from the treatment of other ailments.
When one-third of the population continues to suffer from the same disease, there is clearly a problem with the treatment being offered. More than that, as you will see, the entire system for dealing with chronic pain is seriously flawed. Despite more and more powerful drugs and cutting-edge diagnostic tools, flashy high-tech procedures and surgeries, and huge amounts of money spent on the problem, more people are suffering from more serious chronic pain than ever before. And the problem is only growing worse.
That's why the authors of the Institute of Medicine study called for a "cultural transformation in the way pain is viewed and treated." Unfortunately, they did not offer a blueprint for that transformation. While everyone seems to agree that the problem is daunting, finding the best approach is a difficult task. We now know that medicating patients heavily isn't the answer. Yet the primary focus of pain therapy continues to be how best to distribute pain medications. This is not acceptable! It is time we offer chronic pain sufferers paths to true and meaningful change. Medicine must stop being part of the problem and become part of the solution. For a major transformation to take place, chronic pain treatment must stop revolving around unnecessary surgeries and how many pills to give or take away. We must develop a deeper understanding of pain, the true goals of treatment, and ways to promote sustainable recovery.
Kate's Story
Forty-seven-year-old Kate went to see her primary care physician, complaining of low back pain.
"It's been hurting for months," she explained. "I'm not sure what caused it; it was just there one day and kept getting worse."
"On a scale of 1 to 10, how would you rate it today?" the doctor asked.
"Six," she replied. "But it's not just the pain. I'm having trouble getting around, so I have to rely on my husband and daughter a lot. And it's hard to sit all day at work."
After examining her and looking through her previous medical records for any clue to the cause of the pain, the doctor ordered an X-ray and gave the Kate a referral to physical therapy, plus a prescription for an NSAID — a more powerful version of a popular pain pill available over the counter at drug stores.
Physical therapy went well, with Kate's pain rating dropping to a 4 while she was undergoing therapeutic massage and TENS. But shortly after the therapy ended, her pain began to increase, so she returned to her primary care physician.
"It's now a 5 or a 6," she replied, in answer to his question about her pain level.
"I'm sorry the physical therapy didn't do the trick," he said. "Your X-ray showed a little disc degeneration, but nothing that would explain this level of pain. Tell you what. I'm going to give you a prescription for some stronger pain medicine. An opioid. It should do the trick. I'm also going to send you to an orthopedist to take a closer look at your back."
Kate was relieved. Surely the stronger medicine would control her pain and the specialist would figure out what was wrong — then fix it!
The orthopedist performed his own examination of Kate, asking her questions, asking her to bend this way and that to see what triggered the pain, and more. Concerned, he ordered an MRI of her back, which showed degenerative disc disease and a bulging disc.
"It's not huge," he said as he pointed to an area on the MRI. "But you can see the bulge right here. And see how the spaces between these discs are narrow compared to the other discs? That's degenerative disc disease. There's inflammation in the area, and that causes pain. It's what we call the 'pain generator.' I'm going to refer you to an interventional pain specialist, an expert in dealing with problems like this."
A few weeks later, Kate was lying on a table in an outpatient surgery center as the interventional pain specialist injected anti-inflammatory medication into her back. Working carefully, guided by a type of live X-ray called fluoroscopy, he injected the medicine in exactly the right spot.
"I'm glad we caught this when we did," the pain specialist said, smiling. "You should be fine."
Kate was indeed fine for a few days, but then the pain returned. Over the course of several months, she returned to the pain specialist several times, and each time he injected medicine into her back. Unfortunately, her pain grew more intense, not less.
"I can't believe it got worse!" she said to her primary care physician. "It's a 7 now, sometimes an 8, especially after I've been sitting all day at work. It's hard to sleep; I have to take a pill every night. I don't clean the house or shop anymore; my husband and daughter have to do all my chores. Isn't there something else you can do?"
"Well," the doctor replied, "I can send you to a different pain specialist. Maybe he'll find something the first one missed."
The second pain specialist agreed that the problem was the disc bulge and spinal degeneration, and injected a different medication into Kate's back. But like the other medicines, it only helped for a while before wearing off. Meanwhile, the pain remained severe and Kate became depressed. She couldn't get through the day without popping pain pills and antidepressants, and wouldn't even think of trying to sleep without taking sleeping pills. The pain and depression kept her from doing anything other than dragging herself to and from work: no more visits with friends or relatives, no more brisk morning walks in the park, no more nights out with the girls.
A year after that first visit to her primary care physician, Kate was a wreck. She was in constant pain, depressed, withdrawn, and feeling guilty about "turning my back on my family." Not only that, she had packed on 25 pounds and developed hypertension (elevated blood pressure). Her primary care physician put her on antihypertensive medicines and admonished her to eat better and exercise.
"Oh, great," Kate sighed to her husband. "Another thing to feel guilty about."
Desperately hoping to find relief, Kate saw a neurosurgeon referred by her primary care physician, and agreed to have spinal fusion surgery. Although the surgery seemed to go well, it took her an awfully long time to recover. Twelve months after the surgery, she was still taking large doses of opioid pain killers, as well as anti-depressants and medicines for anxiety and sleep. Because she wasn't able to return to work following the surgery, and her health insurance didn't cover all of her costs, the family budget was seriously strained. Family relations were also pushed to the breaking point.
"I don't know when my husband and I last had sex," Kate sighed. "I'd like to, but ... and there's another thing to feel guilty about."
"My recliner chair is pretty much my life," she continued. "I sleep there because it hurts too much to lie flat. And since I'm not at work, I sit there all day watching TV; my daughter even brings me my meals there. I used to try to keep up with my friends through Facebook, but I gave it up. Seeing what they're doing just makes me cry. The surgeon said he wanted to put a spinal cord stimulator in my back. I said okay because I want this to end, but I really don't have much hope."
Is Your Doctor Set Up to Fail You?
Kate's story is sad but not unusual. You may have gone through something similar yourself. But let's think it through again from a doctor's point of view to understand why we can't simply tweak the system a little bit to solve the problem of chronic pain.
As a whole, we doctors are well-trained and dedicated to making you well. That's what drives us: We love to heal! What we didn't realize back in medical school is that there are many pressures on physicians that make it difficult to stay focused on the patient's best interests. No matter how hard we try, we cannot dodge these pressures, because we're forced to work within a broken system. And the dysfunction is present at many levels. To begin with, the system rarely covers the type of integrated care needed to treat pain adequately, which usually means doctors are not allowed to provide the best treatment for chronic pain. As a result, we struggle every day to work with patients who have very challenging pain problems, but do not have the best tools at our disposal. In addition, the pressure to see patients quickly and do something now, pushes us to prescribe medicines and order tests, rather than dig deep into what's happening with our patients. Our current healthcare system, then, presents doctors with a multifactorial dilemma. Let's take a look at some of the key problems and pressures.
(Continues…)
Excerpted from "Conquer Your Chronic Pain"
by .
Copyright © 2016 Peter Abaci.
Excerpted by permission of Red Wheel/Weiser, LLC.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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