Fibromyalgia Can Be Brutal

At the young age of 29, Kathleen Davies discovered she had fibromyalgia syndrome (FMS). Typical of this baffling disease, the mysterious pain continued. She couldn’t sit for more than a few minutes at a time, and she had to sleep on her stomach on a dozen pillows strategically placed to hold her in a pain-free […]

fibromyalgiaAt the young age of 29, Kathleen Davies discovered she had fibromyalgia syndrome (FMS). Typical of this baffling disease, the mysterious pain continued. She couldn’t sit for more than a few minutes at a time, and she had to sleep on her stomach on a dozen pillows strategically placed to hold her in a pain-free position. It resulted in her having to visit the Haven Recovery Center.

In the fourteen years that followed, Kathleen’s life took strange and unexpected turns, starting with her search for a cure from both conventional and alternative doctors. Neither could offer solutions. If Kathleen had been told at that point that she would never be fully cured, that her pain would continue for years, that she would remain out of work, she might have considered doing what one woman with this disease did–ask Jack Kevorkian to help her end her life. But despite all the pain and limitations she continues to face from her disease, she has never fallen into despair. Quite the opposite.

In the Beginning

Kathleen discovered firsthand that FMS does not fit neatly into any of conventional or alternative medicine’s molds (see “The Mystery of Fibromyalgia”). She endured countless rounds of misdiagnoses and neglect by bewildered health care providers. More than once it was suggested that her symptoms were psychosomatic. During one of her flare-ups, she told her physician that she believed her legs and arms must be injured. After observing her walk down the hall, he concluded that nothing was wrong because she walked normally. He referred her to a psychotherapist.

Hoping psychotherapy would help, Kathleen embarked on a four-year tour of personal growth programs. One of her therapists suggested she was repressing her emotions and that this was causing her many symptoms. Kathleen followed her counselor’s suggestions and began to look critically at how she handled her feelings.

“I became hyperaware of my emotions,” she recalls. “I went through a lot of emotional catharses, which did seem to help my pain, so I figured `This must be it.'”

This theory took a dive, however, shortly after one of her many attempts to return to work. That’s when the muscles of her lower back suddenly and inexplicably began to bum and stiffen again.

“It felt like energy was trying to burst through my back, but I couldn’t attribute it to anything I had done or to emotional stress. I really searched, though: `Who am I upset with? What am I stressed out about? How did this happen?’ There was just nothing I could pin it on. My back just flared up, and there was nothing I could find that I had to `release.'”

What’s worse, the psychotherapy played right into Kathleen’s life-long tendency to blame herself whenever something went wrong.

“Whenever I had a flare-up, I’d try to figure out what I’d done to cause it, and vow never to do that again,” she says. “Eventually the blame became worse than the pain.”

Working Through the Pain

I first met Kathleen in 1988, five years into her illness. She had decided to join my group mind-body program in Menlo Park, California.

My approach to working with FMS follows several guiding principles. One, I see medicine as a secondary source of help, a complement to what we do for ourselves when faced with a chronic illness. Two, I encourage meditation. And three, perhaps most important, I teach people to let go of the outcome, to accept what has come into their lives. Kathleen and I worked together, and with a larger group, trying to incorporate these principles into her life. We had our work cut out for us.

Often we found ourselves grappling with the new-age, guilt-inducing notion that she was “creating” her disease. I, too, had once been naively sympathetic to this idea, but a decade of working with hundreds of sufferers of fibromyalgia and chronic fatigue syndrome convinced me otherwise. It took several years, but gradually Kathleen realized that she hadn’t brought the disease on herself and, for the most part, she had little control over it. This realization allowed her to let herself off the hook.

“Once I realized that I couldn’t control the flare-ups, I stopped striving so much and began feeling more compassion for myself. That was a turning point,” says Kathleen.

But learning to see her disease in a new light was not enough. Kathleen’s old network of friends had collapsed–as happens all too often with people who have chronic illnesses. She was lonely. She realized that her next step in healing depended on connecting with others, so she moved across the Bay to live in an apartment on the grounds of her church’s spiritual community. Her sense of well-being improved immediately. She felt less isolated and, with a sense of belonging, she could relax more.

She began taking meditation classes at her church, and the payoff was big. Meditation not only relaxes, it releases endorphins, amino acids made by the pituitary gland that relieve pain. More important, the meditation gave her a sense of inner well-being she’d been without for years.

“I couldn’t work, I couldn’t have a relationship, but through meditation I found an inner security,” she says.

Twice a day for an hour each time, Kathleen meditated lying face down, supported by her collection of pillows in order to minimize her pain. Before long, her meditation became the centerpiece of her daily life.

“I found I was able to feel joy even though my symptoms hadn’t changed,” she says. “I’d discovered a place within where I was untouched by illness. I wanted to be able to contact that peace and joy any time.”

Today, at age 43, Kathleen lives a quiet, meditative life. She still can’t drive a car or walk to the bus stop because of the pain in her knees, so she must depend 6 friends or her home health aide to help her get around town. “I’m pretty much a homebody,” she says.

She does participate in some of her church community activities, and she has taught people how to transcend pain through meditation. Also, with the help of voice recognition software (because typing is too painful), she’s writing a book about her experience.

A Mended Spirit

In contrast to the sometimes miraculous healing of cancer patients or people with other serious disease, healing FMS is a long, slow, and subtle process. There’s no question in Kathleen’s mind, however, that she has been getting better.

“My inner healing is translating into physical healing,” she says. “The burning went away about three years ago, and the stiffness and pain started decreasing this year. My muscles are much looser now, and recover from flare-ups faster.”

Her disease continues to limit her physically. To the outside observer, Kathleen’s life may look bleak. But she would disagree.

“I’ve become much more calm and accepting of everything,” she says. “The self-blame is gone. The restless, anxious, results-oriented person that I used to be is gone. Now my measuring sticks are love, joy, peace, intuition, and creativity… these are the real signs of healing.”

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