Navigating the Long Road to Chronic Pain Diagnosis

PHOTO: Nearly 4 million Americans suffer from Sjogrens, and 90 percent of whom are women.PlayGetty Images
WATCH Venus Williams: What Is Sjogren's Syndrome?

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.

For the first time, these statistics made personal sense. I imagined that if I did not have the credentials or the backstage pass into the health care system -- if I was "the average patient" -- perhaps nothing could have navigated me through getting the right diagnosis and treatment for my pain.

I had been bounced from specialist to specialist in the greater Boston area where, despite my significant contacts were dismissed summarily to other specialists when my symptoms were confounding, and endured innumerable repetitions of paperwork, exams and lab protocols, many duplicating those done only days earlier.

I had experienced the emotional distress of a first-hand look at healthcare systems gone awry; even within the same healthcare system, clinicians had not consulted with each other, clinical record errors were passed on and further misconstrued, and countless dollars were unnecessarily expended.

Worse, no one seemed the least bit concerned. If I occasionally pointed out the lack or break in process, I was frequently met with a blank stare. It was almost as if no one cared, as if they themselves were not part owners of the process that was operating.

This problem persists in more places across the nation than just my neighborhood. Online patient chat boards echo the same story, and many chronic disease advocacy organizations, besides those dedicated to Sjogren's, spend entire meeting sessions dedicated to helping their members navigate a difficult to diagnose condition.

There's no cure for Sjogren's, but there are treatments to manage the symptoms. While it may be difficult for many of us, except for researchers, to curb the prevalence of chronic conditions like Sjogren's syndrome, there are certainly ways to reduce the personal cost burden and the frustration.

First, write a simple timeline of your problem connecting dates and symptoms. I tried to keep my timeline as concise and accurate as possible. Second, carry copies of your records with you for any visit. Despite electronic medical records, many doctors still aren't using them and, in any case, they usually can't see things across different healthcare systems. I owned my medical chart and it helped me understand my condition better throughout the process.

Third, persist. Don't discount your feelings if you think something is wrong. Experts are highly skilled and deserve the same respect given to you, but even they can't keep up with the flood of new discoveries being made. Be sure to put your most important questions first, in case the doctor and you run out of time.

Finally, for a perplexing or very serious problem, seek out a medical center of excellence, preferably one that explicitly advertises itself as putting patients first. The system in the Midwest had this motto written everywhere, and it actually turned out to be the way people treated each other.

Diagnosis of what can be a progressive disease is a bittersweet experience. I learned that being an expert did not automatically make me an informed patient. Until bigger changes are made among healthcare stakeholders and experts -- the implementation of electronic medical records, more emphasis on patient-provider communication – it's up to patients to find shortcuts in the maze, and share those pearls of wisdom with those of us who took the long way to better health.

Jessica Wolfe, MPH, PhD, has been an entrepreneur, behavioral researcher, and executive in healthcare, health sciences, and public health for over 30 years.