Fibromyalgia is one of the most misunderstood conditions confronting doctors and their patients who are diagnosed with it. Characterized by chronic, widespread body pain and tenderness to various degrees of touch, it has, until our recent work, defied understanding despite nearly 200 years of observation and description. In fact, it remains classified as a medically unexplained syndrome.
The common myths regarding fibromyalgia are: fibromyalgia isn’t real — it is; fibromyalgia is a distinct disease — it isn’t; fibromyalgia is not associated with arthritis and joint damage — it is; fibromyalgia pain originates from a muscle-related tissue abnormality — it doesn’t; a diagnosis of fibromyalgia is confirmed if widespread pain and at least 11 out of 18 fibromyalgia tender points are present — it isn’t; fibromyalgia can be successfully treated with pills alone — it can’t; the cause, mechanism, and relationship of the myriad fibromyalgia symptoms is unknown — not since the recent publication of my book, The Missing Pieces of the Fibromyalgia Puzzle.
Fibromyalgia, a common disorder affecting approximately 2 to 4 percent of the population, ranks as one of the top three diagnoses amongst patients seen by rheumatologists. Adults can be affected at any age, but the predominant age at the time of diagnosis is the forties to fifties. Its prevalence increases with age. Disproportionately, eight to nine women are diagnosed for every man. It occurs most often as a condition unto itself or can be found in association with numerous other medical conditions such as rheumatoid arthritis and lupus.
The key, characteristic symptom of fibromyalgia is the presence of chronic, widespread body pain, particularly in muscle areas. The pain quality and intensity varies between individuals and waxes and wanes over periods of time within any one individual. Descriptions of pain range from aching, burning, and gnawing, all the way to “screaming.” Stiffness is noted frequently, particularly in the morning. Fatigue is another prominent manifestation worsening, paradoxically, with too little activity as well as too much activity. Sleep disturbances are very common and result in feeling unrefreshed, tired, or sleepy on wakening in the morning. Cognitive problems are subjectively recognized with reported difficulties in memory, concentration, and verbal skills. Psychological and psychosocial distress are frequently identified, particularly depression and anxiety. Other symptoms or conditions may include headaches; restless legs syndrome; irritable bowel syndrome; irritable bladder syndrome; cold sensitivity; sensitivity to chemicals weather, medications, noises, lights; needles and pins, numbness, tingling or other unusual sensations.
The only physical finding specific to fibromyalgia is the presence of widespread soft tissue tenderness to a painful trigger such as finger pressure. However, in some, even a light touch may elicit pain. This tenderness can range from discrete, well defined fibromyalgia tender points to widespread, whole body tenderness. Interestingly, despite their association, the degree and severity of the subjective pain does not correlate with the degree and severity of the tenderness. Pain and tenderness are two different things.
There are no diagnostic laboratory tests for fibromyalgia. Thus, fibromyalgia is diagnosed by the nature of the symptoms, clinical examination findings, and excluding disorders that mimic fibromyalgia.
Over the years, two fallacies have become deeply entrenched in the fibromyalgia medical community. First, it has become accepted that fibromyalgia can be accurately diagnosed by identifying the presence of widespread pain for at least 3 months and at least 11 out of 18 fibromyalgia tender points on examination, but nearly 9 out 10 individuals diagnosed with fibromyalgia on this basis do not have fibromyalgia. Second, it has become widely accepted that fibromyalgia pain either comes from nowhere or spontaneously arises in the nervous system despite the biological impossibility of both these concepts.
Sensitivity to painful stimuli in fibromyalgia arises from nerve and chemical changes in the spinal cord areas involved in processing pain signals as they are sent from the body through the spinal cord to the brain. These changes result in a process known as central sensitization through which the body’s pain signal is amplified and magnified. This causes a pain trigger to be perceived as more intense and more widely distributed in the person with fibromyalgia than in the person without it. If pain is a radio signal, then in fibromyalgia the volume control is cranked up way too high in the pain processing areas.
However, knowing the volume is turned up is only part of the answer. To effectively understand and treat primary fibromyalgia, we needed to locate the source of the pain signal that actually gets amplified. Our research at the Fibromyalgia Polypain Arthritis Center, published in my book, The Missing Pieces of the Fibromyalgia Puzzle, has answered this key question. We discovered that the pain arises from an unrecognized arthritic condition known as primary generalized osteoarthritis and its complications that affect the spinal discs as well as other tissues around the joints.
We developed the Polypain Model through which we now understand that fibromyalgia is not a disease, but rather a pain state, much like fever is a temperature state, with underlying diseases causing the change in state. In the fibromyalgia polypain patient, first, primary generalized osteoarthritis and its associated features generate pain signals. Then, second, these signals are amplified in the nervous system through lowered pain thresholds that are, in part, genetically determined, but are highly plastic and are sensitized by the ongoing intensity of pain signals and disease conditions that impair the sleep quality and psychological health of the individual. Thus, our model provides, for the first time, an integrated and unified framework to understand and measure independently features from where the pain originates and the factors impacting pain threshold sensitivity as well as the interaction of both that leads to the overall perception of pain.
Based on our understanding of what causes fibromyalgia pain and how it is modulated, everything that is unknown about the relationships between pain, tenderness, disability, sleep, weight related issues, psychological and psychosocial disturbances, and sexual difficulties are now clear and understandable. This knowledge has led to our Polypain Wellness Core Program as detailed in my book and utilized at our center. Through a blend of traditional and complementary therapies, it guides and empowers patients with the most unique, integrated, and thoroughly effective self-managed wellness recovery program and allows individuals to transcend the suffering of fibromyalgia to make positive changes in their health and overall well-being.
Jeff Sarkozi, M.D., F.R.C.P.C., F.A.C.R. is an internationally trained and experienced rheumatologist and internal medicine specialist with more than 25 years of experience in clinical practice and research. He is a Fellow of the Royal College of Physicians and Surgeons, Canada, and a Fellow of the American College of Rheumatology. He specializes in the diagnosis and management of patients with unexplained chronic widespread musculoskeletal pain and fibromyalgia and has seen thousands of patients with these conditions. His research has led to the development of numerous patient aids and treatment programs to relieve symptoms and improve function in patients.
Dr. Sarkozi serves as a consultant, advisor, and medical expert to the legal profession, healthcare industry, and media regarding musculoskeletal pain, fibromyalgia, and other rheumatic diseases including their relationships to trauma and environmental exposures. His book, The Missing Pieces of the Fibromyalgia Puzzle, identifies where fibromyalgia pain comes from and makes everything that has been unknown about chronic widespread pain clear and understandable. It empowers patients and their healthcare providers with a nine-step wellness recovery program.
Dr. Sarkozi directs the Fibromyalgia Polypain Arthritis Center, the only community rheumatology setting devoted to fibromyalgia and chronic widespread musculoskeletal pain in California. He can be reached at (714) 973-4636.