By Seth Lederman, M.D.
October 1, 2015 was a historic day for fibromyalgia sufferers. After years without consensus on terminology, the United States (U.S.) finally adopted a new diagnostic code that specifically recognizes fibromyalgia within the International Classification of Diseases, 10th Revision, Clinical Modification or ICD-10-CM. Fibromyalgia had not been recognized by the earlier classification, known as ICD-9. So physicians were compelled to use the ICD-9-CM Diagnosis Code 729.1, “Myalgia and myositis, unspecified”, which was accepted by insurance companies. Now, doctors and insurers are required to use ICD-10-CM for medical billing and epidemiology since it was stipulated by the Patient Protection and Affordable Care Act (ACA) of 2010. Since doctors need to use the code to bill for patient encounters, the newly adopted ICD-10-CM code will help with epidemiology and also with recognition of fibromyalgia. The new code is also welcome because it is a formal recognition by insurance companies and branches of the federal government that fibromyalgia is a distinct medical condition that requires attention in clinical practice.
Fibromyalgia has a long tradition of evolving nomenclature. The term “fibrositis” was coined in 1903 by William Gowers, who called it a “designation for the inflammation of the fibrous tissue.” Despite the prevalence of fibrositis in the 20th century, the condition was thought of as a “waste basket” disease. In 1976, the psychiatrist Harvey Moldofsky and the rheumatologist Hugh Smythe made strides in defining the condition by combining their perspectives. The two researchers described fibrositis with three essential features: widespread pain, non-restorative sleep and tender points. Widespread pain was the chief complaint of most patients. Moldofsky recognized fibromyalgia as a “non-restorative sleep syndrome”, while Smythe advocated counting “tender points”. Together they published diagnostic criteria that included widespread pain, non-restorative sleep and 11 of 14 tender points. The term “fibrositis” was replaced by “fibromyalgia” by Dr. Philip K. Hench, whose father Philip S. Hench won the Nobel Prize for discovering the effects of corticosteroids for rheumatoid arthritis. The “-algia” suffix for “aching” was generally recognized as more descriptive than the “-itis” suffix, which means “inflammation,” because there is aching but no inflammation in the fibrous tissue or muscles of fibromyalgia patients.
For many in the medical community, fibromyalgia didn’t gain full scientific acceptance until 1990 when the American College of Rheumatology (ACR) published its diagnostic criteria, officially establishing the term fibromyalgia, to describe the chronic widespread pain and other features that meet the ACR criteria. In 2010, the ACR published new criteria that maintain Moldofsky’s non-restorative sleep as a central feature in addition to widespread pain but that eliminate Smythe’s tender points. The ACR 2010 criteria are now the current diagnostic criteria, but ACR 1990 is also sometimes used, particularly for those who hold on to the significance of tender points.
Fibromyalgia is sometimes referred to as a “new” disease. While the term fibromyalgia wasn’t coined until 1976, the syndrome itself has been around for centuries. The symptoms of fibromyalgia are indistinguishable from those of “neurasthenia”, a disease that was recognized by Dr. George Miller Beard in 1868. Neurasthenia became a popular diagnosis and was believed to affect famous artists and authors including Virginia Wolfe and Henry James. Beard believed it was caused by a mechanical weakness of the nerves. Neurasthenia was also referred to as “muscular rheumatism”.
Until 2014, the premier journal of the ACR was titled Arthritis and Rheumatism. Rheumatism was removed from the title because the term “rheumatism” was considered archaic. It was an acknowledgement that “rheumatism” was phased out as “fibromyalgia” became more accepted and particularly since “fibromyalgia” became well-defined by the modern ACR criteria.
Although fibromyalgia gained scientific credibility after it had established diagnostic criteria in the ACR, its validity as a diagnosis is still questioned by some physicians. This group considers fibromyalgia to be a collection of symptoms that are not specific to fibromyalgia instead of parts of a unifying fibromyalgia condition. Some doctors believe that by diagnosing a patient with fibromyalgia, they may contribute to exacerbating the severity of the symptoms. This logic is based on the hypothesis that once a patient believes he or she has the condition, the symptoms become self-validating. Another reason that doctors are reluctant to make the diagnosis is that there is no cure and the available treatments leave most patients unsatisfied. This logic is based in a widely accepted medical school pillar, which is not to take away hope from patients. For these reasons, some doctors prefer not to use the term “fibromyalgia”. As a result, there are disparities in how different doctors diagnose patients with the same disease. Fibromyalgia is now the term that all physicians will use under ICD-10-CM. Diagnosis of fibromyalgia will now be consistent between payers and the ACR along with the U.S. Food and Drug Administration (FDA), the American Psychiatric Association (APA), the Institute of Medicine (IOM) of the National Academy of Sciences (NAS) and the Outcome Measures in Rheumatology Clinical Trials (OMERACT), who already accept fibromyalgia as the term for chronic widespread pain with non-restorative sleep and other features that meet the ACR criteria.
Fibromyalgia’s official code is M79.7 in ICD-10-CM. While recognition by ICD-10-CM is heading the right direction, it continues to propagate a misconception that fibromyalgia is a problem with muscles. Experts recognize that fibromyalgia is a disorder of the pain perception system of the brain. Because the perception of pain originates in the brain or “central” nervous system, fibromyalgia is considered a “central pain” condition. Patients perceive pain in their muscles and other parts of their body, but that is because of abnormalities in brain signaling and often occurs in patients who have no pathology in their muscles. This misconception of ICD-10 is a holdover from ICD-9’s convention since “Myalgia and myositis” (muscle aches and muscle inflammation) were used informally instead of the more appropriate ICD-9-CM code 338.0 “Central pain syndrome”. So while ICD-10-CM is an advance because it recognizes fibromyalgia with a distinct diagnosis code, unfortunately it maintains the historical and inappropriate categorization of fibromyalgia as a muscle problem and not as a central pain disorder. Yet as Dr. Joseph Bernstein has recently pointed out, because it drives payments, an ICD-10-CM listing “imbues a disease with life”—so it is just the perimeters of fibromyalgia’s existence that must be refined. Bernstein adds that we live up to the highest standard of medicine by focusing on the mitigation of suffering despite potential mischaracterization of its underlying cause.
Recognition by the ICD-10-CM is the latest in a series of important advances for patients with fibromyalgia. Since 2007, three prescription drugs have been approved for the maintenance of fibromyalgia. In 2014, the FDA held a meeting for fibromyalgia patients to inform them about important issues in the drug development process. With the ICD-10 CM recognition, billing and epidemiology will recognize fibromyalgia patients and facilitate understanding of the treatment patterns, incidence, prevalence, sex differences and socioeconomic factors. However, fibromyalgia and other chronic widespread pain disorders still have a long way to go before they assume their proper place in modern medicine. It is time for fibromyalgia patients to start getting the attention they deserve.
Seth Lederman, M.D. is CEO of Tonix Pharmaceuticals, which is developing next-generation medicines for fibromyalgia, post-traumatic stress disorder (PTSD) and episodic tension-type headache.
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