Living with Pain
Two days after my mother moved a concrete flowerpot from our living room to our patio, her feet went numb. A week later, she discovered that she couldn't straighten her back. She felt bowed, as if contorted into the beginning of a back bend. Then her lower back began to throb. She went to a doctor, who stuck needles in her calves and, perplexed by her lack of sensation, ordered an MRI. He showed her the results, explaining that 12 of her spinal disks — the soft jellylike cushions between her vertebrae — had degenerated, causing her spine to compress and pinch the nerves. An additional disk was herniated. Sometimes a degenerated disk can be removed through surgery, with the surrounding vertebrae fused. But 13 disks, more than half the total in a human spine, were far too many for an operation, her doctor said. So she went to another doctor — and another. Seven doctors said the same thing: Nothing could be done. That was in 1995. My mother has been on painkillers ever since.
I was 13 when this happened. I remember that she spent a year and a half in bed, and I know her condition will likely worsen as she ages. I've gotten used to her medication schedule, and I understand that sometimes the pain gets so bad that she has to lie down for a few hours until it subsides. When I go home to visit, I have to carry everything for her, even her purse. But I don't know much else about her official condition, known as degenerative disk disease. I have a hard time imagining what it's like to live with constant, debilitating pain — pain that dominates your thoughts, dictates what you can and can't do and alters your relationship with your body, your place in the world.
Chronic pain is an umbrella term for any type of persistent pain, from migraines to fibromyalgia, that lasts anywhere from several months to the rest of your life. The National Center for Health Statistics estimates that 76.5 million Americans suffer from it, with arthritis and back pain accounting for up to 60% of the cases. For some reason — researchers have not yet figured out why — most of the sufferers are women. We're familiar with acute pain, of course: the type that results from a specific injury like a burned finger or broken bone. When you hurt yourself, nerve fibers called neurons send electrical signals to your spinal cord, which transmits some of those signals to the brain, which in turn interprets the location and severity of the pain. The sensation of pain reminds us to keep the injured area protected (do you want to keep using that broken arm? I didn't think so), giving it time to heal.
But sometimes there isn't an easily identifiable reason for the pain. Sometimes the thing that's broken is the nerve. Maybe it continues to send pain signals long after the original injury has healed, or maybe there was never an injury at all. Until the 1960s, scientists believed that the paths that nerve impulses take when they travel to the brain were predetermined, a sort of neural highway. But actually, the routes are flexible, and a damaged nerve can affect those around it, altering the paths. Research has shown that if your brain feels pain for a long-enough period, it will change. "Eventually, neurons start to die," explains Dr. Michel Dubois, chair of pain medicine and palliative care at New York University's Langone Medical Center. "Pathways change. The emotional part of your brain is affected. But even though we know more about the neurons and the way the body works, we don't know much more about pain than we did 200 years ago. Pain is still pain. We don't know how to make it go away."
All the Things Pain Isn't
Without her wrist brace, Kristi Shaffer doesn't look injured. She is tall and athletic, with long, wavy hair that she dyes red — except for her bangs, which she prefers to keep blond. She is 37, but her two-toned hair and triple-pierced ears make her seem younger, which makes her pain all the more surprising to those who meet her.
Shaffer's employment history is a series of unusual jobs — leading trail rides through the desert, monitoring security cameras at a casino — but now she is unemployed and on disability, living at home with her parents and her 8-year-old son in Pahrump, Nev., about an hour outside Las Vegas. She has chronic regional pain syndrome (CRPS), a rare but debilitating disorder that affects an estimated 1.5 million people in the U.S. — or fewer than 2% of all chronic-pain sufferers. Her condition is permanent.
In October 2007, she was working for a company called Best Bet Products, which repairs and delivers slot machines to nearby casinos. Slot machines weigh anywhere from 50 to 300 lb., depending on their size and what's inside them; Best Bet employees were supposed to use dollies or forklifts to transport the equipment, but, Shaffer says, sometimes none were available. One afternoon she was standing on scaffolding in the company's warehouse, lifting empty machines onto a storage shelf. "I reached down with my right arm to pick one up — it was only about 50 lb. — and when the machine's weight settled on my arm, I swear I could hear a pop. Then my arm went numb," she says. Within a few hours, her wrist doubled in size. She drove to the ER, where the attending doctor told her she had pulled a tendon. "He gave me some Vicodin and sent me home. That was it."
The next morning, she was in an alarming amount of pain, and she worried that maybe a bone was broken. She returned to the ER, but an X-ray of her wrist turned out clean. Tendinitis, another doctor told her. There was nothing to do but wait it out.
She was put on disability leave from work. She kept taking Vicodin, but the pain only got worse. Nothing she tried — using her wrist, not using her wrist, elevation, compression — made any difference. Shaffer owns a horse; before she got hurt, she spent her free time carrying huge buckets of water and throwing 100-lb. hay bales around a barn. "I used to have biceps that made men envious," she says. "Suddenly, I couldn't even open a jar of peanut butter."
Most illnesses are diagnosed by identifying their symptoms. If an X-ray reveals a fracture, your bone is broken. If the throat swab comes back positive, you have strep throat. But CRPS is diagnosed the opposite way, by a process of elimination — ruling out all the things that it is not. It occurs after what would otherwise be a normal injury, like tendinitis in a wrist, except that for some reason, the injury never heals. "The bone will knit or the tendon will heal, but the patient will still complain of pain," explains Dubois. That's because a damaged nerve is still sending signals to the brain, tricking it into thinking there's still an injury when there isn't. After a while, the nerve may even affect the surrounding area, causing the skin to become swollen and pinkish, sometimes warm or cold to the touch. But it's hard to identify damaged nerves, and most CRPS patients bounce from doctor to doctor, trying to find out what's wrong. Shaffer went to a hand specialist (it wasn't carpal tunnel), an orthopedist (it wasn't her spine) and a chiropractor (she didn't need to be realigned). By now, her pain had lasted for over six months.
Doctor-hopping is common among chronic-pain patients, especially those like Shaffer who don't have an easily diagnosable condition. According to an American Pain Society survey, about a quarter of chronic-pain sufferers switch doctors three or more times in search of proper relief. "So many patients I talk to say they'd go to a doctor and be told they couldn't find anything wrong and to go away," says Dr. Rollin Gallagher, the Veterans Health System's deputy national program director for pain management. "Meanwhile, there are consequences of being in constant pain all the time, in terms of brain physiology. It interferes with your cognition, your attention. It causes emotional distress and depression." Pain is not just about how much it hurts.
When she was first diagnosed, my mother spent a year and a half in bed because her doctor was unknowingly undermedicating her. "All I could manage to do in a day was drive you to school and go to the grocery store. That was it," she says. "I couldn't even carry the grocery bags into the house. I had to wait for your dad to come home. Eventually I said, 'I can't live like this anymore. This is not getting any better. I just have to deal with this and live my life.'"
Searching for Answers
In February 2008, four months after her initial injury, Shaffer returned to Best Bet with a note from her hand specialist saying she was to be put on "light duty" until her wrist was fully healed. But there's no such thing as light duty when it comes to slot machines, and she quickly found herself sent on delivery assignments by herself. "I couldn't afford to lose my job," she says. "So I strapped on my wrist brace, took my Vicodin and drove 65 miles to deliver these 150-lb. machines to a casino. I did what I had to do." She had barely been at work a week and a half when, getting dressed one morning, she found she was too weak to grip her hairbrush. She called in sick. The next day she was fired.
Shaffer's workers'-compensation case was still open; she was referred to a pain specialist, Dr. David Ezeanolue at Apex Medical Center in Las Vegas. "He did some tests and said that I was fine. The pain was either all in my head, or I was lying." She was stunned. She told Ezeanolue about the hairbrush and said her pain was shooting as far as her elbow, "like someone had jammed a knife into my forearm." She noticed that she had trouble remembering conversations. She misplaced things. Coffee cups slipped through her fingers. Making a sandwich to pack in her son's lunch box caused tears and anxiety. She lived with her parents, who picked up, carried and opened things that she couldn't. But Ezeanolue found nothing wrong with her, and workers' comp closed her case. (Ezeanolue called Shaffer's story "incorrect" but declined to comment further.) Shaffer now had no job and no medical coverage. Her last Vicodin prescription ran out.
The money she received through unemployment disqualified her for Nevada's Medicaid, which would have provided basic insurance. "They were giving me food stamps when what I really needed was medical care," she explains. So she went without care for eight months. Her pain was so unbearable that she doesn't remember very much about that time. "I know I spent a lot of time on the couch," she says. "I took a lot of Advil."
Shaffer's unemployment benefits ran out in September 2009, so she applied for Medicaid and found herself a new doctor, Pouya Mohajer, an anesthesiologist at Southern Nevada Pain Specialists. Mohajer was the seventh doctor she had seen — the second pain specialist but the first one to test her for nerve damage. He ordered two stellate-ganglion blocks: injections of local anesthetic to the sympathetic nervous system, the part that mobilizes the body under stress. The blocks often decrease pain in patients' arms and hands; her failure to respond to them indicated severe nerve damage. Mohajer diagnosed her with a neuropathic pain syndrome, most likely CRPS. He broke the news to her as she sat with her mother in the doctor's office. "He told me that the life I knew before was gone," Shaffer says. "I looked at my mom, and I started laughing that weird laugh people use when they're trying to hold themselves together. I didn't want to cry."
Mohajer prescribed Lortab (the same type of opioid as Vicodin) and helped her figure out a physical-therapy routine that would prevent joint soreness and muscle atrophy without causing further injury. "If I sent her to physical therapy here, they probably wouldn't know what to do with a CRPS patient," he explains. "So we worked on things she'd like to do at home." Shaffer found that with a few adjustments, she could keep horseback riding. She bought a machine on which to knit. Mohajer was surprised by and pleased with his patient's determination. "Kristi isn't interested in just sitting down and giving up," he says.
When asked to describe the ideal form of treatment for chronic pain, every doctor I talked to recommended a multifaceted approach that combines medication, physical therapy and psychological support to help patients cope with the knowledge that they will probably never be cured. But this multidisciplinary model is costly and complicated and is rarely practiced. Even if every patient were fully insured and properly diagnosed, there are only an estimated 8,000 pain specialists in the U.S. That's one doctor for every 9,500 chronic-pain sufferers. Most people who seek treatment for pain are not managed by a board-certified specialist. My mother sees just her regular internist.
There Isn't a Cure
Now that Shaffer had a diagnosis, she began to regain as much as her former life as possible. But there were problems. Mohajer prescribed her four Lortab pills a day, but sometimes the pain was so bad, she took five or six, which meant that at the end of the month, she'd come up short. Pharmacists in Nevada are barred by law from refilling prescriptions for drugs like Lortab early unless a doctor authorizes it. But Shaffer didn't know this. The first time she was turned away, she borrowed some pills from a friend. They were a different drug, Tramadol; she took them for four days until her prescription could be refilled. "What else could I do?" she says.
The second time she ran out, Shaffer contacted a friend who had a friend who knew some "disreputable people" who sold her the pills she needed. "It's not the most legal thing in the world," she admits, "but people have caused this to happen. When you have a legal prescription but the government won't let you fill it because other people abuse your drugs, you're between a rock and a hard place." She eventually told Mohajer that the Lortab wasn't working well — though she declined to mention her two unprescribed acquisitions. He switched her to Percocet, a more highly regulated opiate. She now takes 15 mg of Percocet three times a day. So far, she has not run short.
You may find Shaffer's dubious actions unsettling. But you may also consider the panic she felt when she was denied access to an addictive drug that doctors led her to believe she needed. Legal and illegal opioid use has skyrocketed in recent decades, with doctors now writing 50% more prescriptions for opioids than they did 10 years ago. The increased prevalence of these drugs opens the door to abuse. According to the Centers for Disease Control and Prevention, emergency-room visits for abuse of opioids increased 111% from 2004 to '08. Even patients with valid prescriptions who never abuse them in any way may be putting themselves at risk for other health complications.
Very few studies have examined the long-term effects of extended opioid use. When I talked to doctors, some, like NYU's Dubois, spoke positively about them. Others, like Dr. W. Michael Hooten at the Mayo Clinic's Pain Rehabilitation Center, find opioids wholly unnecessary. "It's very clear to me that long-term opioid use for chronic pain doesn't provide long-lasting benefits," he says. Shaffer's doctor agrees. "Opioids are the enemy," Mohajer says. "They don't do well against nerve pain. There are a lot of side effects, like constipation and decreased hormones. But sometimes they're still the only option that patients have until they can get surgery — or if surgery doesn't work."
"You have to understand. I don't want to be on drugs," Shaffer says. Percocet makes her sleepy, occasionally causing her to nap for hours in the middle of the day. CRPS gets worse with time, and the pain was shooting as far as her shoulder. When her son asked her to play on his Nintendo Wii with him, she didn't know how to explain why she couldn't swing the remote. She didn't want more drugs; she wanted a solution.
The Last Resort
Chronic pain has no solution, just a collection of imperfect options. The best one, Mohajer suggested, was a spinal-cord stimulator: a little device implanted beneath the skin of the lower back, about the size of a keyless car-door opener. When it's on, wires that extend from the device up a patient's spinal column send an electronic pulse to override the person's pain, replacing it with a tingling sensation. The stimulator has been known to work for neuropathic pain in the lower back, arms and legs. Although it requires only an outpatient surgical procedure, thick scar tissue builds up around it, making it very difficult to remove. People with spinal-cord stimulators can't have MRIs or ultrasounds or be revived with defibrillators. Because of the location of Shaffer's pain, the wires would have to be implanted near her neck, where the spinal-column opening is very small. "She needs to realize that it's possible that she'll go in with hand pain and come out paralyzed," Mohajer says. Shaffer understood this. But the possibility of getting her life back was simply too tempting to let go.
On Feb. 4, Shaffer underwent what she called the "test run," a preliminary surgery in which wires were implanted in her neck and attached to an external stimulator that she wore affixed to her waist. The exposed wires made her look like some sort of futuristic machine; she joked that she was slowly turning into the Terminator. She would try the stimulator out for 10 days. If it worked — if her pain decreased — Mohajer would schedule the permanent surgery.
It did work: she barely felt her pain. But the results weren't perfect. Her arm constantly felt as if it had fallen asleep, and sometimes, when she turned the current up too high, the electronic pulse caused the muscles in her arms and back to spasm. "I lost most of the feeling in my right hand," Shaffer says, "but I will take this over the feeling of pain any day." She cut back to two Percocet pills a day.
At the time this article was written, Shaffer's temporary stimulator was declared a success and was removed. But the surgery to implant the permanent one is risky — within the past few years, three patients operated on by three surgeons in the Las Vegas area had developed some form of paralysis — and Mohajer has struggled to find a doctor willing to operate on Shaffer. She is back at home, on drugs and in pain, exactly as she had been. "It's been depressing," she says. "I found out how good my life could be, and now in the morning I wake up and think, Crap, I hurt all over again."
To live with pain is to live with a series of choices. It's been three years and four months since Shaffer's original injury. She can continue to take drugs, or she can have a machine implanted in her body that could leave her paralyzed (and will definitely decrease her sense of touch). She can take an extra pill one day, knowing that she will run out at the end of the month. My mom faces the same decisions. She'd rather hurt a little every day than worry about running out of medication. "Everyone has to do their pain time sooner or later," she tells me. "If you want to do something, you just have to figure out how much it's worth."
My mom is divorced now, living alone in a Chicago suburb. When several feet of snow fell on the city earlier this month, she went outside and shoveled a path to her front door. "What do you want me do?" she asks when I point out that it would hurt her back. "Eventually, I have to leave the house." True, she would probably spend the next day in bed, but she had made her choice. "If the price for living my life is that sometimes I'm in tears, well, then that's what I'll do," she says.
I ask my mom if she has any advice for someone like Shaffer, a young mother with decades of her life stretching before her but also, most likely, decades of pain. She is quiet for a moment, and then she says, "She has to get used to crying in public. As soon as she gets over that, everything else will be O.K."