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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.