For many people with fibromyalgia, there is a path to diagnosis that begins with shuffling from doctor to doctor, looking for an explanation for pain symptoms that cannot be diagnosed with X-rays, blood tests or any other test—all the while pushing past the naysayers who believe symptoms are imagined or exaggerated.
Lynne Kennedy Matallana was long dismissed for her chronic fibromyalgia symptoms. It took her two years and 37 doctors before finding one doctor who believed in her and who committed to help her. Before that, she spent a lot of time in bed suffering from a number of symptoms. Though this was in the mid ’90s, there are still people who go from doctor to doctor before finding someone who can connect the dots to their symptoms. Not long after her diagnosis, Matallana cofounded the National Fibromyalgia Association (NFA), a nonprofit devoted to helping people with chronic pain.
Fortunately, more is known about fibromyalgia today, and the condition is very much recognized as real. The Food and Drug Administration has three drugs approved specifically for the condition. Researchers are actively studying fibromyalgia in clinical trials all around the country and world. Even insurance companies and medical professionals finally have a specific code for the condition in the International Classification of Diseases, 10th Revision (ICD-10). In the past, fibromyalgia was coded as unspecified myalgia and myositis (729.1). But in the past year, the condition received its very own code (M79.7).
“Things are a lot better now than they were 10-20 years ago, but if you go back in medical history, many conditions that are now acknowledged to be very real (rheumatoid arthritis, Lyme) were treated in this manner,” says Daniel Clauw, M.D., director of the Chronic Pain and Fatigue Research Center, professor of anesthesiology, professor of medicine (rheumatology) and professor of psychiatry at The University of Michigan Health System.
So why do some people still imply to fibromyalgia sufferers that their symptoms are not real or are exaggerated? Why do even some doctors still dismiss patients’ symptoms?
“Because there is no generally accepted, objective test for fibromyalgia, some doctors unfortunately may conclude a patient’s pain is not real, or they may tell the patient there is little they can do,” states The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) on its website.
Dr. Clauw acknowledges that there are no diagnostic tests that can be ordered in routine practice. However, he explains that “there are many objective abnormalities that can be identified (especially functional brain imaging studies) that are still research tests.”
If colleagues, friends and loved ones are fast to dismiss chronic pain and other fibromyalgia symptoms, one reason may be that the condition has no name for years while one seeks a diagnosis. It may also be hard for people to imagine pain that they have no experience with.
The New York Times published an article about Judy Robinson, a woman whose chronic pain developed following abdominal surgery. Test after test could not explain the pain she experienced in her hips, lower back, legs, muscles, and skin. After four years of going through tests and enduring pain, a new doctor diagnosed her with fibromyalgia.
Once a person does get a diagnosis, there may be some peace of mind. But there’s still that tricky problem of dealing with people that say “fibro-my-what?” or people who downplay the severity of pain symptoms. And for the most ignorant or ill informed, there’s that dreaded comment: “It’s all in your head!”
What can you do when people still doubt your symptoms after a diagnosis? “Point them to medical literature or credible sources of info that explain what we do know about these conditions,” says Dr. Clauw.
Mayo Clinic Proceedings, 2011 September, Volume 86, pages 907-911, “The Science of Fibromyalgia”
Journal of the American Medical Association, April 16, 2014, Volume 311, pages 1547-1555, “Fibromyalgia, A Clinical Review”
Mayo Clinic, “Fibromyalgia Misconceptions”
University of Maryland Medical Center (UMMC) , “Fibromyalgia”
Stanford Medicine, “Fibromyalgia – living with a controversial chronic disease”