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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.