When The Pain Won't Go Away

More women have fibromyalgia than breast cancer, but the disorder is rarely talked about. WD breaks the silence.

- Leslie Goldman

In 2001, Emily Shaules was an active, happy 25-year-old lawyer living in Chicago when a casual toss of her hair triggered a sudden, excruciating snap in her neck. Fearing she might have torn something or given herself whiplash, she headed to the emergency room, where she was diagnosed with a pulled muscle, prescribed Vicodin, and assured her symptoms would blow over in a week. Instead, the pain began to radiate throughout her body. A month later, she could no longer bear to hug her boyfriend. “Imagine if someone chopped off your finger,” she says. “I felt that level of pain, everywhere.”

Doctors tested Emily for everything from bulging disks and hypothyroidism to lupus and multiple sclerosis—all came back negative. By 2003, she couldn’t pick up her 12-pound dog, she had been let go from her job for failing to keep up with the demands, and her relationship was over. “I remember praying that a scan would show a brain tumor, because at least then I would have a concrete diagnosis,” she says. “When no medication will even touch your pain, but all the doctors say nothing is wrong, you start to think you’re insane.”

Emily wasn’t imagining things. She was finally given an answer: fibromyalgia, a chronic condition with symptoms including widespread pain and tenderness, disrupted sleep, and memory and cognitive troubles (also called “fibro fog”). Six million to 10 million Americans are thought to suffer from fibromyalgia, and the majority are female. But there’s enormous confusion over what fibromyalgia truly is, and no reliable diagnostic tests or cures exist. As a result, women often hear their doctor say something along the lines of what Emily heard: “You’ll just have to get used to the pain.”

HOW IT ALL BEGINS