Summer 2017

My Pain, My Passion

How a Tufts alum’s illness became her life’s work. 

By Ginevra Liptan, M04

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Illustration: Cristina Spanò

I had never heard of fibromyalgia before I was diagnosed with it. In the spring of my first year at Tufts School of Medicine, I felt a searing pain in my neck while lifting weights. It was a minor injury, I thought, and expected it to heal with rest. But the burning ache—like the soreness that follows a flu shot—slowly spread from my neck to my thighs. Then the profound fatigue set in, along with the worry that something must be really wrong.

My doctor ordered labs and imaging—all came back normal—and then referred me to several specialists. Months went by without a verdict. Ultimately, a chiropractor told me I had fibromyalgia, a chronic illness characterized by widespread muscle pain and exhaustion. At first, I was relieved. But I quickly learned that it was a poorly understood and highly controversial condition, largely because sufferers appear healthy and have normal test results. I wondered if it was all in my head. The day my favorite teaching physician told our class that he didn’t believe in fibromyalgia, I decided to keep my diagnosis secret.

At the end of my second year of medical school, I took a yearlong leave. Desperate, I turned to alternative medicine. I consumed herbs and sought out homeopathic remedies, saw acupuncturists and naturopaths. These experiments were expensive, frustrating and ineffective. Swedish massage finally offered some short-term relief, and my therapist suggested I try myofascial release (MFR), a manual therapy that involves slow and sustained pressure to stretch and ease tension in the fascia that surround muscles.

It was a revelation. The neck pain that had been my constant companion for almost two years all but disappeared after three MFR sessions. A couple more and I could exercise again, which lessened my fatigue. In a few months, I felt well enough to continue school, determined to complete my training and specialize in fibromyalgia.

After residency, I led a pilot study at Oregon Health and Science University that demonstrated MFR was more beneficial for fibromyalgia subjects than Swedish massage. While there is no cure for the condition, self-care can help manage symptoms, and MFR is a core component in the treatment plans I now offer patients at my private practice, The Frida Center for Fibromyalgia in Portland, Ore.

A few years after my diagnosis, a pioneering brain-imaging study indicated that fibromyalgia pain was real. But attitudes change slowly, and a stigma still exists around the illness. The most important thing I can offer patients is validation of their experience. When they describe bizarre flulike aches migrating around their body or weariness that persists no matter how much they sleep, I can say, I know exactly what you mean. Feeling truly heard and understood by a doctor can itself be powerful medicine.

However, enduring the same pain, fear and even shame as my patients also collapses the distance between us. I have to brace myself against the waves of their suffering—or risk drowning in it. Some days, when this visceral work hits too close to home, I contemplate moving to another medical field altogether.

But mostly I feel grateful for my fibromyalgia, as it has provided the unique opportunity to study this disorder from the inside and pushed me to be a better physician.

Ginevra Liptan, M.D., is board-certified in internal medicine. Formerly an associate professor at Oregon Health and Science University, she founded and is the medical director of The Frida Center for Fibromyalgia (fridacenter.com) and the author of The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor.

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