Are you one of the 5 million Americans living with fibromyalgia pain? Although the specific cause of fibromyalgia remains a mystery, how the nervous system perceives pain may very well play a role. “It’s like the volume is turned up on the pain,” says Kristi Mizelle, MD, MPH, director of the Rheumatology Holistic Care Clinic at Johns Hopkins Hospital in Baltimore.

In many people with fibromyalgia, their entire sensory system is amplified, making them highly sensitive to touch and other stimuli: something as simple as a clothing tag on the back of the neck can be unbearable, and even a hug from a loved one can trigger pain. Others report that noisy gatherings or crowds can overload the senses, making their fibromyalgia symptoms that much worse. And some people with the chronic pain disorder are much more sensitive to medications and chemicals, Dr. Mizelle says.

Sensory sensitivities, fibromyalgia, irritable bowel syndrome, and other chronic pain syndromes seem to “travel together,” she adds. Emerging data are showing that these factors are somehow connected and may be part of a group of disorders being called central sensitization syndrome, she says.

The Highly Sensitive Person and the Fibromyalgia Connection

Barbara Keddy, PhD, considers herself a highly sensitive person (HSP) with fibromyalgia. A professor emerita at Dalhousie University School of Nursing in Halifax, Nova Scotia, Canada, Keddy is the author of Women and Fibromyalgia: Living With an Invisible Dis-ease. “In my book, I wrote about a theory I developed, which suggests that in order for a person to develop fibromyalgia, that person’s personality must be that of a highly sensitive nature," Keddy says. "By the term 'highly sensitive person,' I mean someone who is hyper-vigilant, easily aroused with too much stimulation, highly intuitive, and so on.”

In her case, Keddy says, her nervous system is easily overly aroused. “I seem to be able to feel someone else’s pain and am overly empathetic — all characteristics of highly or overly sensitive people,” she says. Keddy says she was brought up in a home that wasn’t peaceful, and she developed panic attacks and fainting spells as a child. Her first full-blown attack of fibromyalgia came years later during the difficult labor and delivery of her first child. Today, four decades later, she is still living with fibromyalgia pain and fatigue.

Elaine Aron, PhD, a San Francisco psychologist and author of the The Highly Sensitive Person, says there’s no evidence to support the idea that HSPs are more prone to fibromyalgia than less sensitive people. But she says, in general, HSPs “who are living a stressful life or had a stressful childhood tend to be more prone to illness than others, and they are certainly more sensitive to pain.”

Keddy agrees that being a highly sensitive person does not mean you're destined to develop fibromyalgia. That being said, she notes, “I have never met anyone who has fibromyalgia who is not highly sensitive.”

In the research for her book and through her blog posts, Keddy says she’s interviewed and heard comments from hundreds of people with fibromyalgia. She says a common thread exists: They all say that even as children they were “overly empathetic, unable to tolerate violence in movies, cannot bear loud noises, and have a tendency to be caregivers over and above what is necessary.”

Coping With Both Fibromyalgia and Sensitivity

Mizelle suggests developing adaptive techniques, especially if you are sensitive to touch. She says a complaint she hears a lot from people with fibromyalgia is that they can’t hug their loved ones. To help loved ones understand what you’re experiencing, try saying, “When you hug me this way, it’s painful.” Placing hands in a different way may help, she says, or come up with a special signal to show affection and love that doesn’t involving hugging at all.

Because chronic pain can lead to depression and other mood disorders, psychological therapy can also help people living with fibromyalgia, says Mizelle. She suggests that cognitive-behavioral therapy (CBT) is especially helpful for people with fibromyalgia who have a tendency to catastrophize, or have thoughts like “my pain is never going to get any better.” Those types of repetitive, negative thoughts can end up being a self-fulfilling prophecy, she explains. Therapy teaches that you’re not helpless in the face of your pain and that you can learn how to manage it. CBT, according to Mizelle, can help you change the way you look at the world and your illness.

Keddy says she always ends up feeling pain and fatigue when she's over-stimulated. Because of that, she keeps a “fairly quiet” routine that involves meditation, exercise, and qi gong, a Chinese relaxation technique that uses gentle movements, mental focus, and deep breathing. “I do these things throughout the day — not all at once — and listen to music and read quietly,” she says. Along with medication and being careful about avoiding sugar, this way of life helps her take control of her nervous system.

For people living with fibromyalgia pain, says Keddy, planning such a routine does require some discipline. But since there’s no cure for fibromyalgia, “we must become experts in our own lives,” she adds.