Major Issues in “Fibromyalgia”

a) Fibromyalgia (FMS) is a chronic, disabling pain condition whose features and treatment requirements are so unique compared to most other common pain states that they call for specific attention from a diagnostic and therapeutic point of view, as well as for ad-hoc designed experimental studies to clarify pathophysiology. Specific aspects are summarized below:

i) Epidemiology. Prevalence figures currently available vary from 2% in the United States and France to 4% in Spain, with women affected 7-9 times more than men (Wijnhoven et al, 2006; Perrot et al, 2008). However, these frequency rates are considered an underestimation due to largely insufficient recognition of the syndrome in many geographic areas (Russell, 2008), indicating a need for more and newly designed epidemiologic studies.

ii) Symptom presentation / co-morbidities. Core symptoms of FMS are chronic, diffuse, symmetrical musculoskeletal pains - most often continuous, with periodical exacerbations that can reach extremely high intensities - and diffuse tenderness. Patients also often complain of abnormal pain reactions to minimal stimuli, such as light touch or contact with clothes, to the point that everyday tasks, such as combing one’s hair, can be extremely uncomfortable. Associated symptoms are affective dysfunction, nonrestorative sleep or chronic insomnia, prolonged morning stiffness, daytime tiredness, cognitive deficits, and short-term memory loss (Russell, 2001; Mease, 2005). Significant levels of co-morbidities are also present with other recurrent/chronic pains, such as Irritable Bowel Syndrome (70% in FMS vs 20% in controls), dysmenorrhea and endometriosis, interstitial cystitis, rheumatic diseases (rheumatoid arthritis, lupus erythematosus, Sjögren’s syndrome), chronic fatigue syndrome, myofascial pain syndrome, low back pain, and temporomandibular joint disorder, but also with depression (40% in FMS vs 10% in controls and 20% in patients hospitalized for other medical conditions) and anxiety (45% in FMS vs 21% in other chronic pain states)(Kato et al, 2006; Buskila, 2007; Buskila and Cohen, 2007). Physical and psychological stress often triggers FMS onset (Fillingim et al, 2005; Van Houdenhove et al, 2005; Tishler et al, 2006).

This complex array of symptoms complicates the clinical picture; it may confound the diagnosis and delay appropriate treatment.

iii) Diagnostic criteria. Routine laboratory or instrumental examinations may be perfectly normal in FMS (Abeles et al, 2007). Diagnosis is based on clinical criteria established by the American College of Rheumatology (ACR), i.e. 1) spontaneous chronic widespread pain of at least 3 months duration; 2) Tenderness in at least 11 out of 18 pre-determined body sites called tender points (TePs) (Wolfe et al, 1990). The lack of a specific instrumental diagnostic marker, together with insufficient awareness of clinical identification criteria, is often the cause of a missed or misdiagnosis in many countries.

iv) Sensitivity to painful stimuli. Fibromyalgia patients present a generalized increase in sensitivity towards noxious stimuli; unlike most other chronic pain conditions, FMS is characterized by lower pain thresholds to different modalities of stimulation not only in painful but also in nonpainful areas (Vecchiet et al, 1994; Carli et al, 2002; Graven-Nielsen and Arendt-Nielsen, 2002; Desmeules et al, 2003; Giamberardino, 2008). A more widespread application of sensory testing in affected as well as nonaffected sites in chronic pain patients in clinical centers would help in differential diagnosis.

v) Pathophysiological mechanisms. Fibromyalgia tends to recur in members of the same family, pointing to a genetic predisposition. Exposure of prone individuals to a variety of environmental stressors would lead to the development of FMS, which would be characterized by altered pain processing in the central nervous system, arising from a number of neuroendocrine/dysautonomic, neurotransmitter, and neurosensory disturbances (Gracely et al, 2002; Wood, 2004; Sarzi-Puttini et al, 2006; Abeles et al, 2007; Buskila et al, 2007; Jones et al, 2007; Kuchinad et al, 2007; Ablin et al, 2008; Schweinhardt et al, 2008). In spite of the research progress made so far, however, the understanding of the origin of the syndrome is still largely incomplete, which negatively affects the setting up of mechanism-based therapies.

vi) Attitude by / towards medical care. Fibromyalgia patients are at risk of not being taken seriously by health care providers because their pain has no identifiable “organic cause”. They are at times dismissed as “neurotic” or “imaginary” patients, also because of the high incidence of associated affective dysfunction (Merskey, 2008). As a result, they usually consult a long series of different physicians / specialists – from rheumatologists to neurologists, internists, orthopaedics, anaesthesiologists, psychiatrists or psychologists - and undergo endless tests/instrumental examinations, before - if ever - receiving an appropriate diagnosis, progressively losing trust in the healthcare system and becoming less and less cooperative in the management of their symptoms (Penrod et al, 2004). This also imposes high costs on society, which add to indirect costs due to loss of working hours and productivity by patients (Annemans et al, 2008). The interruption of this negative vicious circle between patients and their doctors would greatly reduce the personal, social and economic burden due to the syndrome.

vii) Prognosis and Treatment approach. Although FMS does not threaten the patients’ life, it can cause severe disability and thus substantially compromise the quality of life. Complete resolution of symptoms is hardly ever achieved though significant improvement can be obtained with adequate therapy. Its management needs to be multimodal and multidisciplinary, as indicated by the guidelines issued by EULAR (European League Against Rheumatism)(Carville et al, 2008). The acronym “ADEPT living”, recently proposed by Russell (2008) highlights the crucial points to be addressed in therapy (Attitude: by patient, healthcare professional, family, society; Diagnosis: diagnosis and differential diagnosis; Education – didactic, group, reading, psychosocial, biomedical; Physical - home (pacing, exercise, heat) and/or formal physical therapy; Treatments – medications; Living: interval objective assessment, adjustment, support). Regarding medications, FMS does not respond to traditional analgesics and thus requires specific knowledge of effective drugs to be employed (Sarzi-Puttini et al, 2008; Crofford, 2008), together with attentive evaluation of co-morbidities which might greatly impact on the choice of the specific medicines to employ. This complex and global approach, often requiring a strict collaboration among different specialists, is essential to increase the success rate, but is not easily provided by all centers in the world, nor it is accessible everywhere, due to lack of facilities. The net result is that the treatment outcome in fibromyalgia is still highly unsatisfactory in many countries.

b) The characteristics of fibromyalgia patients - especially concerning their co-morbidities - and the diagnostic and therapeutic approach to the syndrome, as described in point a), are likely to vary greatly in different areas of Europe, in relation to diverse socio-cultural influences but also differences in the Health Care System organization. To date, however, little is known about the specific status of fibromyalgia pain and its management in the various European Countries. EFIC feels that awareness of the national specificities in this area is a fundamental step towards future drawing of common lines of policy throughout Europe, for optimizing the success rate of diagnosis and therapy of the syndrome.

c) The symptoms of fibromyalgia can have a dramatic impact on an individual’s quality of life and physical function, comparable with that of rheumatoid arthritis, also due to the associated mood disorders, sleep disturbance and limitations in the performance of daily activities. These added burdens are also often reflected by difficulties at the workplace. Over one third of the patients are forced to accept shorter working hours or less physically demanding work to maintain employment. This involves added costs for society at large; in the United States, for example, 15% of the FMS population currently receive disability funding (Russell, 2001). A more effective management of fibromyalgia is expected to improve both the personal and social consequences of this condition (Coaccioli et al, 2008).

d) The complex of factors claimed to underlie the array of symptoms in fibromyalgia – genetic, hormonal, neurosensory, psychologic and socio-cultural - needs to be further investigated (Abeles et al, 2007; Buskila et al, 2007; Martinez-Lavin, 2007; Ablin, 2008). More research into each of these areas is needed to fully understand the nature of FMS and ultimately improve levels of diagnosis and treatment.
 

Plan of Action in “FIBROMYALGIA”

1. Increase the level of knowledge about European national diversities in epidemiology, diagnosis and management of fibromyalgia, with the aim of identifying the most important common problems encountered in the field in Europe
2. Disseminate information obtained in point 1 at the scientific/medical community level, as well as use this information to draw up common lines of action on behalf of EFIC towards European institutions to improve handling of FMS
3. Raise general awareness of the magnitude/impact of the problem of pain in fibromyalgia; patients experience not only chronic musculoskeletal pain and tenderness but also frequently a number of other concomitant pains, due to co-morbidities, that complicate the clinical picture and its treatment
4. Make it more widely known that fibromyalgia can be particularly difficult to assess and manage. Special skills and knowledge are required
5. Call for more education among doctors and other healthcare providers and promote collaboration among different medical specialties on the management of fibromyalgia
6. Improve the level of communication and understanding between patients and health care providers
7. Promote more research into mechanisms of fibromyalgia, and through this, favour more targeted therapeutic interventions
8. No fibromyalgia pain should be regarded as “imaginary” or merely “psychogenic” any longer

Aims of the Campaign

References

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Contact Person EWAP 2008

Associate Professor of Internal Medicine
Director, Center for the Study of Fibromyalgia and Musculoskeletal Pain Disorders [clinical]
Headache Center [clinical]
Pathophysiology of Pain Laboratory [experimental, basic science studies on visceral pain]
Department of Medicine and Science of Aging
“G. D'Annunzio” University of Chieti - Chieti – Italy
e-mail: mag@unich.it

Maria Adele Giamberardino, MD
Coordinator of the EFIC Campaign against Fibromyalgia



Acknowledgments: EFIC is grateful to Borgogelli et Schiavone Communications, Ravenna Italy, for kindly designing the logo of the campaign