The journey to an accurate diagnosis of fibromyalgia can be long and arduous — just ask Lady Gaga, who was only diagnosed after four years of suffering from chronic pain. Even worse, patients are often told that the pain is "all in their heads.” Now, however, there’s a blood test for fibromyalgia, FM/a, that can lead to a quicker diagnosis and treatment. HealthCentral interviewed Frederick G. Behm, M.D., Frances B. Geever Professor and Head of Pathology at the University of Illinois at Chicago College of Medicine, who performed studies of the blood test, for his take on the state of fibromyalgia today.
HealthCentral: Why is it so difficult to diagnose fibromyalgia?
Dr. Behm: There are several reasons, the first being that fibromyalgia may not be just one disorder. It could be multiple disorders that have overlapping symptoms. The symptoms also tend to be nonspecific — patients often can’t tell doctors where they hurt. They just hurt all over. In addition, up until recently there have been no lab or radiology tests to confirm the clinical diagnosis of fibromyalgia, so people would go to many doctors without finding relief, or they would try all sorts of home remedies that didn’t work.
Because the diagnosis is so elusive, we believe that fibromyalgia is underdiagnosed and affects far more than the four million people who are said to have it in the United States. In fact, we think it may exceed the number of people with adult-onset diabetes. It’s also a worldwide problem.
HC: What are the tip-off symptoms of fibromyalgia?
Dr. Behm: The main symptoms are chronic pain that is widespread throughout the body, severe fatigue that prevents the person from functioning in daily life, an inability to sleep, muscle tenderness that is vague and moves, headaches, visual problems like blurry eyesight, depression, memory problems, and not being able to think clearly. These are all very nonspecific to fibromyalgia and can mimic other disorders. However, if you have three or four of these symptoms, particularly widespread pain, and you’re a woman (women are more likely than men to have fibromyalgia), you might ask that your healthcare provider evaluate you for fibromyalgia.
HC: What is the FM/a test and how is it helping in diagnosis?
Dr. Behm: The FM/a blood test looks for markers in the immune system that demonstrate an abnormal pattern that is unique to fibromyalgia patients. Results of the test are based on a 1 to 100 scoring system, and people with fibromyalgia have scores higher than 50. We did a study of the test in my lab here at the University of Illinois College of Medicine Chicago where we looked at blood samples from people with and without fibromyalgia, although we didn’t know who did or did not have the disorder until the test results had been completed. We were pleasantly surprised to find the test was very accurate: It was able to identify over 90 percent of patients with fibromyalgia, which is pretty spectacular in terms of accuracy for a medical test.
HC: How should people with widespread pain approach getting a diagnosis and treatment? Who should they see?
Dr. Behm: Most people start by seeing a primary care provider such as an internist or a family doctor. From there, they might be referred to a rheumatologist. They might also receive a referral to a psychologist or a psychiatrist if they are depressed or the healthcare provider thinks they might benefit from talk therapy. And now patients can ask their doctor for the FM/a test, which was approved for use in 2012 and is becoming more widely available in the U.S. This test is the only one available that can confirm the immunologic process characteristic of fibromyalgia is going on in a person. The challenge is for fibromyalgia groups to get the word out that there is a test that can be performed.
As for treatment, there really is no good therapy. We can treat symptoms with pain medications including opioids, but those can be habit-forming. Antidepressants and anticonvulsants help other people, but it’s really very hit-or-miss for most people with fibromyalgia, which is frustrating. We need better treatments. Still, getting a confirmed diagnosis of fibromyalgia can be reassuring — at least patients know the problem isn’t just in their heads.
HC: Are there other advances coming down the pike for fibromyalgia diagnosis and treatment?
Dr. Behm: Our lab and a lab at the University of California Los Angeles began a new study this year looking at the genes of people with fibromyalgia compared to people without it to see if there are any genetic clues to tell us what is going on in this disease process. We will need several thousand patients to thoroughly study the genetic profile, so if you are interested in participating you can go to the website fmtest.com to find out more. We are also looking at the composition of the bacteria in the gut — what’s called the gut microbiome. We know there is an interplay between the immune and nervous systems in fibromyalgia, so we suspect there may be alterations in the gut microbiome we can identify to find new treatments.
Nancy Monson is a Connecticut-based freelance writer. Her articles have been published in over 30 national magazines and newsletters, including AARP The Magazine, Family Circle, Shape, USA Today, Weight Watchers Magazine, and Woman’s Day. She is also the author of three books, including Craft to Heal: Soothing Your Soul with Sewing, Painting, and Other Crafts. Read more of her work on her website and follow her on Twitter and Instagram.