Navigating the Long Road to Chronic Pain Diagnosis

Nov. 22, 2011 — -- Suffering for over six years with widespread, unidentifiable pain and fatigue is a test of patience. For me, the answer came years after seeing dozens of doctors shrug their shoulders at my condition or say I was in excellent health since I looked well.

After enduring endless exams, rounds of blood drawing, body and brain scans, all for no diagnosis at all, I was determined to get answers somewhere else and that's what landed me mid-country. I finally found my diagnosis in the Midwest, thousands of miles away from my home in Massachusetts.

This specialist asked me to describe everything of concern. Then he examined me and began to write his note. Every few sentences, he stopped, turned the computer screen in our direction, and asked me and my husband whether he had captured my problem accurately. We were amazed since no other specialist had ever double checked with us before. No other doctor outright explained my care as a team effort.

And then, a week later, the diagnosis: Sjogren's syndrome -- an often overlooked but serious autoimmune disorder.

Nearly 4 million Americans suffer from Sjogren's, and 90 percent of whom are women. As I looked through the symptoms for Sjogren's, I found myself identifying with most characteristics I saw on the list – symptoms like widespread muscle soreness, joint pain, brain fog that was so extreme I had trouble sorting through the mail. I also felt fatigue so extreme that I felt like I got hit by a truck.

More importantly, my pain had a name. And a name meant I would finally get the right treatments.

But coming to the diagnosis required a Herculean effort.

My medical file was stacked high with referral notes and test results, which translated into months of pain unexplainable by doctors, and a growing sense of hopelessness that I would ever be diagnosed, or recover. Five rheumatologists, two neurologists, two immunologists, one infectious disease specialist, several endocrinologists, two psychiatrists, three integrative medicine doctors, two functional medicine doctors and multiple primary care physicians later, I was fed up playing the medical pinball machine.

"She looks well and in excellent health," one part of my file read. "Would benefit from stress reduction dealing with the natural effects of aging, a little tucking in around the edges."

But I knew I wasn't well.

Another part of my file read that I was "doctor shopping," a term used to describe pain pill addicted patients who are fishing for a diagnosis just to get prescribed more pills.

As a PhD clinical psychologist and board member of one of Massachusetts's leading medical systems, I am involved in broader discussions about how patients can better navigate the system more efficiently to get the right diagnosis and treatment faster.

I never thought of health care as a maze until I found myself on the opposite side of one of the top healthcare systems in the nation, this time as a patient suffering from progressively debilitating pain. That may have been one of the greatest eye openers on medical system operations than board meetings could offer.

More than 80 million people in the United States suffer from chronic pain, most of whom are women, according to the American Chronic Pain Association. And each year, nearly $100 billion is wasted due to reduced productivity, sick time and medical costs associated with chronic pain.