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
Many experts believe fibromyalgia is triggered by a physical or emotional trauma— a car crash, a divorce, a sexual assault—that sends the body into fight-or-flight mode. But even something as simple as Emily’s twist of her head can bring it on. “Normally, the sympathetic nervous system turns on to prepare the body for a stressful situation, tightening the muscles and connective tissue to increase their strength, then shutting off when the threat is gone,” says Ginevra Liptan, M.D., author of The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor. But with fibromyalgia, the brain gets stuck and the stress response never stops, like a smoke alarm sounding without a fire.
Over time, a chronically activated sympathetic nervous system can cause chaos throughout the body, keeping muscles tense (leading to pain and tenderness), preventing deep sleep, and ultimately prompting pain-sensing nerves to crank up their signals.
A difficult diagnosis
With well-recognized conditions like cancer and diabetes, doctors have tools like biopsies and blood glucose tests to help make a concrete diagnosis. With fibromyalgia, many doctors are still using criteria that originated in 1990, which calls for them to press on 18 spots (including specific points on the neck, elbows, back, and knees). “If the patient is tender in 11 of the 18 spots, and other causes have been ruled out, you diagnose them with fibromyalgia,” says Dr. Liptan. In 2010, the American College of Rheumatology stopped recommending the tender-spot exam because of its subjective nature (a patient may feel sore in 13 spots one day and only 10 the next) and added “fatigue” and “brain fog” to the criteria—along with allover pain lasting three to six months that can’t be explained by another diagnosis.