This interview took place on August 26, 2008, and was conducted by Norman Sussman, MD.
This interview is also available as an audio PsychCastTM at http://psychcast.mblcommunications.com
Disclosure: Dr. Turk is a consultant to EMpi Recovery Sciences, Janssen, Ortho-McNeil, and Pricara; is on the advisory boards of Abbott, Eli Lilly, Ferring Pharmaceuticals, and Pfizer; receives grant support from the National Institute of Arthritis, Musculoskeletal and Skin Diseases; and is a special government employee of the United States Food and Drug Administration.
Dr. Turk is John and Emma Bonica Professor of Anesthesiology and Pain Research and director of the Fibromyalgia Research Program at the University of Washington in Seattle, Washington. He is also editor-in-chief of The Clinical Journal of Pain and co-director of the Initiative on the Methods, Measurement, and Pain Assessment in Clinical Trials. While his research has been funded by the National Center for Health Statistics, National Center for Medical Rehabilitation Research, and numerous private foundations, he has consistently received funding from the National Institutes of Health since 1977. Dr. Turk has published over 450 journal articles and chapters in erudite texts and written and edited 13 volumes, including The Pain Survival Guide: How to Reclaim Your Life.
What is fibromyalgia?
Fibromyalgia, most cases of which occur in women, is a chronic condition characterized by hyperalgesia (ie, hypersensitivity to pain), multiple comorbid symptoms, psychosocial distress, functional disability, and physical deconditioning. People with fibromyalgia tend to be inactive, resulting in loss of muscle strength, endurance, and flexibility.
Does physical activity help fibromyalgia patients avoid symptoms of the disorder?
Exercise is important for people with fibromyalgia. Many patients claim that engaging in physical activity makes them feel worse and, as a result, they withdraw from activity. It is difficult to have people engage in activity beneficial to them when they believe it is harmful. It is important for fibromyalgia patients to learn the difference between “hurtful” and “harmful.” Patients may think physical activity hurts them and ultimately worsens their condition. In reality, inactivity makes tasks difficult to accomplish. If patients slowly engage in the seemingly arduous activities, gradually building their physical strength, they eventually increase their endurance. Increasing strength and flexibility diminishes numerous problems related to physical activity. Patients should start activities at a low level; intensity should increase gradually. Successful increase and completion of activities should provide corrective feedback and reduce fears regarding the potential of activity to exacerbate symptoms. In addition, optimism should be conveyed and reassurance should be given at all times when working with fibromyalgia patients. They frequently question themselves and their condition in general, as doctors, physicians, and specialists often fail to provide a diagnosis; evidence of the disease does not appear in x-rays; and blood work is negative. Until they receive a diagnosis, patients feel anxious about the meaning and cause of their symptoms. However, while there are numerous treatments that can help patients manage symptoms and reduce the deconditioning of physical inactivity, there is no cure for fibromyalgia.
Has fibromyalgia been described in other terms before prior to its current terminology?
Yes. There has been a wide range of different diagnoses for fibromyalgia dating back to hundreds of years (ie, neurosthenia, psychogenic rheumatism). However, the official diagnosis of fibromyalgia was developed in 1990. Prior to that, it was called fibromyositis, but since no inflammatory process was discovered in the condition, fibromyositis became fibromyalgia. There was a multi-centered study1 sponsored by the American College of Rheumatology in which an official diagnosis of fibromyalgia and its specific criteria were outlined.
What are the signs and symptoms of fibromyalgia?
The diagnosis of fibromyalgia is determined by the presence of widespread pain, defined as pain in three of the four body quadrants (above and below the waist, right and left side of the body) and axial, pain of at least 3 months duration, and the presence of pain reports following palpation of 11 or more 18 specific locations (muscle and muscle insertion)—tender points. The American College of Rheumatology study1 investigated many other locations but a specific set of 18 best discriminated between patients with fibromyalgia and rheumatoid arthritis and back pain.
How is fibromyalgia distinguished from other pain syndromes?
Examination of blood chemistry can help physicians to rule out different rheumatologic conditions that mimic signs of fibromyalgia. For example, there is some overlap between the presenting symptoms of fibromyalgia and rheumatoid arthritis. Examination of erythrocyte sedimentation levels can assist in the differential diagnosis. There is also a good deal of overlap between fibromyalgia and chronic fatigue syndrome. Approximately 70% of patients who meet diagnostic criteria for chronic fatigue syndrome meet the diagnostic criteria for fibromyalgia. The central features of fibromyalgia are widespread pain and fatigue. However, fibromyalgia patients also report a high prevalence of back pain, stiffness, irritable bowel syndrome, migraine headache, and temporomandibular disorders.
Colleagues and I use a 40-item symptom checklist with our fibromyalgia patients. The average number of symptoms the fibromyalgia patient population reports is 20, meaning these patients endure 20 other symptoms in addition to the pain already caused by the primary diagnosis. Approximately 74% of patients with fibromyalgia report that they experienced depressed mood and >70% indicate that they feel nervous and irritable.
What causes fibromyalgia in terms of etiology?
Patients with fibromyalgia are viewed as a homogeneous group of people, but it is likely that there are different factors contributing to their condition. For example, approximately 30% to 35% of people with fibromyalgia say their symptoms began after physical trauma (eg, car accident, surgery). Approximately 65% to 70% say they experienced flu-like symptoms one day, and after, their illness progressively worsened. Whether these indications belong to the same category is unknown, and there may be genetic differences instigating the condition that need to be investigated. Further, a disordered central processing of noxious sets of stimulation characterizes people with fibromyalgia, but the actual mechanisms causing the symptoms are currently under much investigation. There is some evidence2,3 suggesting that fibromyalgia could be an autonomic nervous system dysfunction or an endocrinologic problem, but to date the cause of fibromyalgia is essentially unidentified. It is only known that it likely occurs in a heterogeneous group of people and likely involves different mechanisms.
Has the bimodal impact of stress, fear, and depression on the physical symptoms of fibromyalgia been examined?
Yes. As with any chronic disease, fibromyalgia impacts different domains of people. However, there is debate concerning whether psychiatric problems are causal or a reaction to living with a chronic set of symptoms. Although the lifetime prevalence of psychiatric disorders is higher in people with fibromyalgia than it is within the general population, a significant minority have no prior history of any psychiatric diagnoses. Although there is no question that some people may have had a premorbid psychiatric history contributing to fibromyalgia, living with fibromyalgia or any chronic disease, for that matter, has significant impact on multiple areas of functioning. It is hardly surprising that there is a high prevalence of depressed mood accompanying the presence of distressing symptoms. When doctors and specialists cannot find the cause, they may think that the symptoms are fabriacted or magnified. The patient then feels even greater distress, become more isolated focusing on the symptoms. This withdrawal from activities and preoccupation with symptoms may exacerbate the presence of fibromyalgia with the myriad of accompanying symptoms.
Do people with fibromyalgia complain of tinnitus?
Tinnitus is not highly prevalent in fibromyalgia. I do not think it is any more prevalent than what exists in the general population. However, like fibromyalgia, tinnitus is a symptom that is hard to objectify.
What treatments are beneficial to people with fibromyalgia?
There are 57 pharmacologic agents and 56 non-pharmacologic treatments reported to have beneficial effects in patients with fibromyalgia. Pharmacologic treatments, including antidepressants, opioids, anticonvulsants, N-methyl-D-aspartate excitotoxic amino acid receptor antagonists, 5-HT3 receptor antagonists, muscle relaxants, sedatives, and non-steroidals, have been reported in the literature to have beneficial effects on some symptoms. In terms of non-pharmacologic treatments, everything from magnetized mattresses to electroconvulsive therapy has been reported as effective for some symptoms in some patients. People have different symptoms, indicating it is possible that the range of treatments has different effects on different symptoms. With pharmacologic treatment, approximately 30% to 40% of patients had an approximately 30% to 50% improvement in their symptoms, particularly pain.4 However, no patients reported the elimination of pain by any newly developed treatments.
Is that degree of improvement significant to improve quality of life?
There is a distinction between statistically significant and clinically meaningful. The studies discussed earlier are of statistical significance. In terms of pain, most of the literature is not specifically about fibromyalgia but about chronic pain conditions. Pain reduction of approximately 30% is viewed as being clinically meaningful to the patient. Improvement depends on the severity of one’s pain with which he or she starts. For example, if a patient’s rating of pain is a “9” on an 11-point scale (0–10), a greater percentage of pain reduction is required for patients to judge that the improvement is clinically meaningful than if the patient’s initial rating is a “4” on this scale. The results on physical and emotional functioning are not as good as those reported for pain. Pain may be relieved, but there is no guarantee that pain reduction leads to the same levels of improvement in physical function and emotional function.
Which drugs are officially approved for the treatment of fibromyalgia?
There are two medications—one antidepressant and one anticonvulsant—approved by the Food and Drug Administration, and there are more in various phases of seeking approval. Duloxetine is an antidepressant and pregabalin is an a2d ligand. Approximately 30% to 40% of patients will find approximately 30% to 50% improvement in pain with either drug. However, an improvement in emotional functioning or physical functioning may not be as substantial and there are side effects with either drug. This may be due to the short-term nature of the trials. Typically, these trials tend to be ≤6 months long, and it may take longer for functioning to improve as much as observed pain.
Does fibromyalgia ever spontaneously go away?
No. There have been community longitudinal studies suggesting it may diminish, especially as a person ages.5-7 The peak for symptoms of fibromyalgia is between 40–60 years of age, but even people with fibromyalgia >60 years of age tend to report that symptoms improve but do not disappear.
Like those with neuropathic pain syndromes, do people learn to live with the pain associated with fibromyalgia?
It is probably more difficult to learn to live with neuropathic pain, as it can be more intense than the pain fibromyalgia patients experience. The characteristics of neuropathic pain are completely different than those of fibromyalgia. People with fibromyalgia have a whole range of other symptoms to manage. Neuropathic pain is more focal. However, when one has co-ocurring disorders with fibromyalgia, such as irritable bowel syndrome or headaches, it is difficult to function. Even with the available treatments, one can continue to have some set of these symptoms for the foreseeable future.
In addition to medications, is there rehabilitation for people with fibromyalgia?
Yes. I was on the panel of the American Pain Society’s development of an evidence-based, clinical practice guideline for fibromyalgia. Approximately 3 years ago, we reviewed all the available studies on the condition and concluded that the optimal treatment for people with fibromyalgia includes information, reassurance, an exercise program, cognitive-behavioral therapy, and most likely antidepressants or an anticonvulsant. The combination of these is probably the best treatment for fibromyalgia patients. My own research has delved into rehabilitation approaches, and it appears that this combination is the best available option. Any of the treatments used as monotherapy would not be as nearly as effective as a combination.
Upon consultation, is there any way to know if someone will respond to treatment?
That area is getting a lot of attention right now in terms of pain in general as well as fibromyalgia specifically. Through the use of responder analysis we are trying to identify those patients who are most likely to respond to a certain combination of these treatments. People may respond differently depending on the kinds of symptoms they present, psychosocial issues, and social support.
Unlike other chronic pain conditions, numerous fibromyalgia patients report not receiving adequate support from friends and family, as they might be skeptical of the diagnosis. Another fairly substantial subgroup of these people tend to be individuals living on their own or in isolation; they do not receive much support in general. Approximately 8 females to 1 male seek treatment. Prior to the FDA’S approval of two drugs approximately 1.5 years ago, there was great skepticism about this condition and whether it was a psychiatric problem, symptom magnification, or an attempt to obtain attention. Hopefully, the approval of the two drugs and others in the pipeline will change this viewpoint. PP
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7. Wolfe F, Anderson J, Harkness D, et al. Health status and disease severity in fibromyalgia. Results of a six-center longitudinal study. Arthritis Rheum. 1997;40(9):1571-1579.