Is Fibromyalgia Real?
Throughout the course of its existence as a topic of research in the scientific literature, fibromyalgia has been plagued by a legacy of negative stigma and surrounded by a shroud of debate among both researchers and physicians. The question “Is Fibromyalgia Real?” has been contentious and frequently the source of great anger from the community of Fibromyalgia patients. The dismissive attitudes that many patients are greeted with from physicians are rooted in skepticism, and reinforced by a lack of scientific evidence supporting a definitive cause for fibromyalgia, as well as continuously evolving diagnostic criteria. Patients often face physicians who do not believe them and who view their symptoms as typical of those that nearly everyone will experience at some point in their life, either due to their imagination, a psychological problem, or as physical manifestations of depression (Hadler & Greenhalgh, 2005; Reid et al., 2001; Smith, 2002; Weissmann, 2008; Wolfe, 2009). Collectively, these circumstances have continued to perpetuate doubt among some physicians and scientists as to the legitimacy of fibromyalgia as a true clinical condition, and lead to frustration and discouragement for patients who often face an uphill battle to receive both a diagnosis and effective treatment for their symptoms.
One overarching criticism of fibromyalgia stems from the fact that it is a highly individualized condition; although common symptomatic themes exist between patients, individual patients rarely present with the same constellation of symptoms. Furthermore, many of the symptoms that are common among fibromyalgia patients are also extremely common in other conditions, such as irritable bowel syndrome and chronic fatigue syndrome. The common presence of overlapping symptoms found in fibromyalgia and a number of other conditions have led some researchers to collectively describe syndromes as functional somatic syndromes (FSS), and many suggest that a single diagnostic term such as FSS should be used in place of individual syndrome names (i.e., fibromyalgia, chronic fatigue syndrome, etc.) when making a diagnosis. The prevalence of this theory in the scientific literature continues to perpetuate the dismissive attitudes of many physicians and often delays diagnosis for many patients with fibromyalgia.
Henningsen et al. describe FSS as “patterns of persistent bodily complaints for which adequate examination does not reveal sufficiently explanatory structural or other specified pathology.” (Henningsen 2007, p. 946). In other words, Henningsen and colleagues suggest that functional somatic syndromes are characterized by ongoing system-wide complaints that cannot be explained based on physical examination or on the microscopic/laboratory level. The current understanding of the cause of fibromyalgia is that it results from the body’s inability to process pain signals correctly; as such, in the absence of definitive diagnostic means to validate this understanding, as well as the lack of microscopic/laboratory findings to demonstrate abnormal nerve signaling, fibromyalgia continues to fall within the constructs of an FSS as defined by Henningsen et al. Other syndromes that have been encompassed by the FSS label include multiple chemical sensitivity, sick building syndrome, repetitive motion injury, side effects associated with silicone breast implants, the Gulf War syndrome, chronic whiplash, chronic fatigue syndrome, and irritable bowel syndrome, among others.
Psychological and Psychosocial Origins
Barsky & Borus (1999) exemplify the often negative and dismissive attitude of many researchers and clinicians in their 1999 article devoted to a discussion of FSS. Much like the definition of functional somatic syndromes put forth by Henningsen et al. (2007), Barksy and Borus also describe FSS as a group of syndromes that are related more by common symptoms, suffering, and disability and less by disease-specific and demonstrable structural or functional abnormalities. They characterize patients with functional somatic syndromes as being resistant to information that contradicts their own self-diagnoses and insist that individuals with FSS have a “strong sense of assertiveness and embattled advocacy with respect to their etiologic suppositions, and they may devalue and dismiss medical authority and epidemiologic evidence that conflicts with their beliefs.” (Barsky & Borus, p. 910). The authors support their beliefs by citing the overlap and frequent co-occurrence of more than one FSS in the same patient, the epidemiologic similarities frequently found among sufferers, the elevated rates of psychiatric disorders among patients, and the resistance of many symptoms to treatment. They go on to assert that individuals with FSS are plagued by their own belief that they are sick (which they suggests acts to reinforce symptoms they experience), the role of being sick (a label which they argue hinders an individuals ability to recover), and the negative feedback that stress brings with regard to perpetuating and exacerbating symptoms. The authors close out their discussion by enumerating six steps that can help individuals who suffer from FSS. These include: 1) ruling out diagnosable medical diseases; 2) searching for and diagnosing any relevant psychiatric disorders; 3) forging a strong working relationship between physician and patient; 4) focusing on restoring function as a primary treatment outcome; 5) limit the amount of reassurance given to the patient; and 6) employing the use of cognitive behavioral therapy for those patients who do not respond to any of the other steps (Barsky & Borus, 1999).
As can be seen by the Barsky & Borus article described above, many researchers emphasize the importance that psychosocial factors have in the initiation and management of FSS. As such, FSS – which many researchers consider fibromyalgia to be a part of – are often dismissed as mere physical manifestations of a broader and more pervasive psychological or psychosocial condition (Lorenzen, 1994).
This is especially true for fibromyalgia, which through the years has repeatedly been dismissed by critics as being merely psychologic in origin (Wessely & Hotopf, 1999; Shorter, 1992). Although support for this theory has begun to wane, even recent studies – which more uniformly acknowledge fibromyalgia as a true diagnosis – continue to investigate the psychological aspects of the disease. For example, a recent study was conducted in a small sample of female fibromyalgia patients and healthy female control subjects to examine the personality traits of both groups. In their introduction, the authors describe how, from a clinical perspective, fibromyalgia patients frequently display various personality traits that enable them to more easily translate various life events into emotional distress. The authors state that fibromyalgia patients are typically more demanding, perfectionists, and have high self-expectations. The authors go on to describe how personality can impact an individual’s ability to cope with various stressors and may serve as a gateway through which these stressors can result in the symptoms associated with fibromyalgia. In their study, the authors pay particular attention to neuroticism, which they define as “an enduring tendency to experience negative emotional states,” and describe as being associated with depression, anxiety, and overall increased arousal (Malin & Littlejohn, 2012, p. 1). Following their detailed surveying of the participants in the study, the authors found that fibromyalgia patients exhibited significantly more neuroticism than did the control subjects, and that neuroticism was significantly associated with pain, sleep, fatigue, confusion, depression, anxiety, and stress. Of these, the strongest association was with stress. In their concluding discussion, the authors suggest that certain individual personality traits – in particular neuroticism – may predispose some individuals to the development of fibromyalgia-related symptoms by impacting their ability to cope with psychosocial stress (Malin & Littlejohn, 2012).
Lack of Definitive Diagnostic Criteria
The widespread variation in symptoms is further complicated by the lack of definitive testing to establish a diagnosis of fibromyalgia. Diagnostic criteria were first defined in 1990 by the American College of Rheumatology (ACR), and later revised in 2010 to address diagnostic pitfalls (such as standardized application and use of the diagnostic criteria among physicians). Nevertheless, despite the existence of formalized diagnostic criteria, much of the physician assessment that is involved in the process, as well as the patient’s own input, is highly subjective and impacted tremendously by symptomatic description. Furthermore, a definitive diagnostic test for the presence of fibromyalgia does not exist, nor are there any conclusive laboratory or pathologic findings that are exclusively characteristic of the disease. In addition, diagnostic criteria are not universally applied among all physicians and some individuals can receive a diagnosis of fibromyalgia without meeting all of the necessary criteria (Yunnus & Aldaq, 2012), and researchers continue to suggest modifications to existing diagnostic criteria (Wolfe et al., 2011). The lack of standardized, one-size-fits-all diagnostic criteria fuels the fire of fibromyalgia critics who insist that in order for it to be considered a true clinical entity, its diagnosis should be able to be achieved definitively and repeatedly using standardized measures.
Medicalization of Fibromyalgia
Hazemeijer & Rasker maintain that fibromyalgia is a functional somatic syndrome, and suggest that it only becomes a true diagnosis when patients and physicians make it so. Hazemeijer and Rasker provide an example to illustrate their theory. They describe a middle age woman who seeks help from her family physician for a number of physical complaints that have persisted over a period of several months. These complaints include vague, non-specific pain that affects her whole body, non-refreshing sleep, constipation, and abdominal pain. In the absence of any clinical findings to suggest a particular disease process at work, the physician orders blood tests and x-rays, all of which are found to be normal. After unsuccessfully trying to treat the pain with various painkillers, the patient is referred to a rheumatologist who performs a tender point count (even though he or she realizes it is not necessary for diagnosis), and explains the concept of fibromyalgia to the patient. Armed with the additional information she has learned from the Internet and other fibromyalgia supporters, Hazemeijer & Rasker describe the patient as being able to “give embodiment to her symptoms as a fibromyalgia patient” (Hazemeijer & Rasker, 2003, p. 509). They also describe how the concept of fibromyalgia itself has influenced the physician’s diagnosis, as well as the patient’s own self- assessment, thereby creating an influential loop between diagnosis, patient, and physician. The authors go on to emphasize how the therapeutic setting played a key role in the diagnosis, and describe how, if the patient had initially been referred to a gastroenterologist, she may have received a diagnosis of irritable bowel syndrome instead. In their argument against the legitimacy of fibromyalgia as a true clinical entity, Hazemeijer & Rasker state that if the therapeutic setting and mindset can be changed, fibromyalgia can be eliminated as a syndrome and will cease to exist as a diagnostic option (Hazemeijer & Rasker, 2003).
Although the theory suggested by Hazemeijer and Rasker may be somewhat far-fetched to those who support the existence of fibromyalgia as a true diagnosis, other authors have also cited various reasons related to the medical system as a whole for the continued acceptance of fibromyalgia. Wolfe (2009) describes that individuals with functional somatic syndrome, including fibromyalgia, have an underlying need to legitimize their symptoms, as well as to find reassurance that those symptoms are not brought on by a psychosomatic illness. Furthermore, he argues that receiving a valid diagnosis of fibromyalgia provides a missing link to medical insurance and treatment, and lays the groundwork for disability and pension filings (Wolfe, 2009). In addition, some researchers suggest that fibromyalgia has become increasingly medicalized by the pharmaceutical industry, which Moynihan et al. (2002) describes as enticing individuals who suffer from pain and fatigue into a diagnosis of fibromyalgia. Wolfe & Hauser (2011) also point out the fact that a majority of authors from fibromyalgia drug studies have received monetary support from pharmaceutical companies, and cite the increasing research funding support from the National Institutes of Health (NIH) (Wolfe & Hauser, 2011).
Fibromyalgia has had a long and troublesome path in terms of its legitimate recognition among many in the medical and scientific community. Its vague presentation and overlapping symptoms with many other conditions have impeded the ability of scientists to fully understand its true cause or causes. Although research has increasingly revealed fibromyalgia to be the result of disordered centralized pain processing in the central nervous system, the lack of laboratory and microscopic findings that are truly unique to fibromyalgia continue to cast doubt on its legitimacy in the eyes of some skeptics. Furthermore, the nature of the condition itself makes it incredibly difficult to diagnose, and current diagnostic methods rely heavily on individual physician interpretation and patients’ descriptions of symptoms. These diagnostic pitfalls continue to present challenges for fibromyalgia supporters, who face challenges from critics regarding the lack of a uniform diagnostic procedure that can effectively diagnose all patients. Finally, ongoing research into the mechanisms by which psychological status can impact somatic symptoms, as well as the influence of the pharmaceutical and research community on both patients and supportive clinicians, continues to spur debate as to the true nature of fibromyalgia. Nevertheless, research continues into the mechanisms behind disordered centralized pain processing, and newer medications have been used successfully in the therapeutic setting, both of which continue to lend positive contributions to the credibility of fibromyalgia as a true disease. Is Fibromyalgia real? It is very real for those experiencing it and regardless of ongoing debate the increase in research and progress being made toward more effective treatment is at least a step in the right direction.
Learn about brain chemical abnormalities in fibromyalgia patients HERE.