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A Call to Revolutionize Chronic Pain Care in America: An Opportunity in Health Care Reform

Near Death Experience

As far back as she can remember, Deana Luchs remembers the pain.

In elementary school her frequent stomach aches and muscle pain were dismissed as imaginary. “I was called a hypochondriac by the doctors and even by family members.”

It wasn’t until she was 33 that she got a diagnosis of fibromyalgia, a chronic pain disorder that affects some 10 million Americans.

Like others with fibromyalgia, Luchs suffers from migraine headaches, irritable bowel syndrome and widespread muscular pain. But the diagnosis was just a first step in a long journey, one characterized by numerous trips to doctors, fragmented care, surgeries that didn’t assuage her pain, wasteful medical treatment and finally an event that changed her life.

In June 2008, Luchs had an attack of stomach pain she attributed to irritable bowel syndrome. What she didn’t realize was this: She’d been taking some medications including painkillers and as a side effect had developed severe constipation. The pain got worse and worse and finally Luchs had to be rushed to the hospital when her bowel ruptured and she developed a potentially lethal infection.

She spent days in the intensive care unit fighting for her life and subsequently recovered. “But I lost almost a year of work,” she says. Now Luchs considers that episode a wake-up call. She now realizes she can no longer afford to deal with pain on an episodic, fragmented basis.

Luchs realized she needed a primary care doctor, someone who could coordinate her treatment for pain and identify potential complications early on—before they had a chance to morph into a life-threatening medical crisis like a ruptured bowel.

If Luchs had gotten this kind of comprehensive care in June 2008, she might have avoided the frightening and costly stay in the hospital.

Luchs made her way to the Robert Wood Johnson University Medical Center in New Brunswick, N.J. and started to see an internist who coordinates her care, which now includes painkillers, acupuncture, massage therapy and counseling.