Fibromyalgia: An Irish perspective

Reference: June 2024 | Issue 6 | Vol 10 | Page 14

Fibromyalgia is a complex, common musculoskeletal condition,¹ characterised by chronic widespread pain and associated fatigue, sleep disturbances, and cognitive and somatic symptoms.²

The origins of fibromyalgia date back over 2,400 years to Hippocrates, who described patients having pain of “imprecise location and character” that was often “weather sensitive”.³ In 1892, Sir William Osler appeared to describe fibromyalgia when he wrote about neurasthenia, “an abnormal response to stimuli, from within or without”, referred to as “fibrositis”.⁴

Fibrositis derives its name from the Latin fibro, meaning fibrous tissue, and the Greek myo, meaning muscle, and algia meaning pain.⁵ As a condition, fibromyalgia was formally recognised by the World Health Organisation in the Copenhagen Declaration in 1992.⁶

Epidemiology of fibromyalgia

Fibromyalgia is more common in females than males,⁷ and has a worldwide prevalence of between 2-to-12 per cent of the general population.^1,2,7,8 It is one of the most common painful conditions identified in primary care, and the second most common condition seen by rheumatologists.¹ A diagnosis of fibromyalgia impacts patients, and their families, as well as the healthcare system.^2,9

There are no figures available for the prevalence of fibromyalgia in Ireland, although according to the Health Information and Quality Authority of Ireland, chronic diseases are a major component of health service activity and expenditure, with 38 per cent of people over 50 years old living with a chronic condition.¹⁰

A survey conducted in 2011 estimated the prevalence of chronic pain in Ireland, that is pain lasting longer than three months, to be 36 per cent, with 45 per cent of people surveyed reporting that they live with more than four sites of pain.¹¹

A total of 42 per cent of people surveyed experienced pain for more than five years, with a further 42 per cent stating that they did not know the cause of their pain.¹¹ This is slightly less than the estimated prevalence of chronic pain in our nearest neighbour, the UK, where chronic pain is estimated at 43 per cent.¹²

Of note, the prevalence of chronic widespread pain in the UK is 14 per cent and the incidence for fibromyalgia is five per cent,¹³ which suggests that a significant number of people in Ireland may be living with fibromyalgia.

Cause of fibromyalgia

Fibromyalgia has long been written about, yet no definitive cause for the condition has been identified in the literature.¹⁴ There are currently three main hypotheses for the development of the disorder, with the most accepted pathogenesis being that fibromyalgia is a ‘sensitised sensitivity syndrome’, which originates from the central nervous system.^15,16

Others suggest that fibromyalgia is a stress-related response, often as a result of a psychological or physical trauma,¹⁷ or an inflammatory response due to the presence of elevated neuropeptides and inflammatory cytokines noted in the blood serum of patients with the condition.¹⁸

Unfortunately, there is currently no known cure for fibromyalgia² and this lack of a definitive cause and cure has resulted in a controversial condition that is not widely accepted due to its medically unexplained features.¹⁹ Known risk factors for developing the condition include gender,²⁰ genetic factors,²¹ musculoskeletal disorders,²⁰ physical stressors including insomnia,²⁰ past trauma or emotional events,²² sleep disorders, and anxiety and depression.²⁰

Clinical features

Core clinical features of fibromyalgia are widespread pain, somatic symptoms such as sleep disturbance and fatigue, and cognitive and psychiatric disturbances.^2,23 Pain is the most common presenting symptom associated with the syndrome, and is described as an ache over a wide area, hence the reason why the condition is also known as chronic widespread pain.^2,14

Fibromyalgia pain is thought to result from neurochemical imbalances in the central nervous system that lead to ‘central amplification’ of pain perception.² In other words, for patients with fibromyalgia, the volume or intensity when it comes to perceiving pain fluctuates.

This central amplification of pain results in abnormal sensations like allodynia, an increased sensitivity to something that is not normally painful, such as a hug, or hyperalgesia, an increased or over-sensitive response to pain.

People with fibromyalgia have described how their pain feels like it increases and decreases in waves as the volume (central sensitisation) is turned up and down and that their pain can be generalised or localised to a specific area.²

Unfortunately, patients with fibromyalgia not only experience physical pain and associated disability, but a multitude of other symptoms such as anxiety, depression, disturbed sleep, fatigue, cognitive deficits, poor memory, headaches, gastrointestinal symptoms, and renal symptoms.^1,2 The result is a complex condition which is difficult to diagnose and manage.

Diagnosis

The diagnosis of fibromyalgia is challenging for both patients and clinicians. Patients often present with non-specific symptoms which may overlap with other functional syndromes like migraine, irritable bowel syndrome, chronic fatigue syndrome, and a variety of chronic pelvic and bladder pain syndromes.^16,24

The non-specific nature of symptoms means that patients often find it difficult to describe their presenting complaint,¹⁶ and the diagnosis is often only suspected when all other possible causes for their symptoms have been excluded.^16,24

Diagnostic criteria have been developed and tested in population-based studies to aid physicians in the identification of fibromyalgia, with the most widely used criteria from the American College of Rheumatology (ACR).² The ACR criteria incorporate two assessment tools to diagnose patients – the Widespread Pain Index (WPI) and the Symptom Severity Scale (SSS) – and all criteria must be met in order to reach a diagnosis of fibromyalgia.²⁵ Diagnostic criteria are outlined in Table 1.

Despite the ACR diagnostic criteria evolving over more than 30 years, their use remains mainly in research or specialist settings, and they are not widely used in clinical practice. This is unfortunate, as a delayed diagnosis of fibromyalgia is often associated with worse patient outcomes,²² and more pharmacological-based treatment regimens.¹ Increased utilisation of the ACR criteria in clinical practice will not only guide physician diagnosis, but may help validate the diagnosis of fibromyalgia for patients.

Treatment options

International guidelines for the management of fibromyalgia report limited evidence for any one treatment, suggesting the focus should be primarily based on improving function, symptom management, and optimising quality-of-life.^2,16 This requires patients to be educated about the diagnosis and treatment options, with particular emphasis on self-management strategies, symptom management, pharmacological options, and alternative ways of coping with a chronic condition and improving confidence.^2,16

Self-management is a term commonly used when discussing patient education and health promotion. It aims to provide patients with an opportunity to acquire the knowledge and skills needed to manage the physical, psychological, and practical impact of living with a chronic condition and is fundamental to fibromyalgia management.²⁶

There are no specific Irish guidelines available for the management of fibromyalgia, for patients or for healthcare practitioners. Three prominent international guidelines have evolved over the years, with a consensus that the aim of fibromyalgia management is improvement in health-related quality-of-life.²

The most effective strategies identified are exercise, cognitive behavioural therapy, cautious medication management, and readily available illness-specific information.^27-29 The guidelines recommend that patients diagnosed with fibromyalgia are supported with illness-specific information and clear explanations about what is known about the syndrome, current treatment options, expected outcomes, and the importance of establishing shared goals in terms of realistic treatment expectations between them and their healthcare provider.^27-29

Self-management of chronic conditions, including fibromyalgia, is a healthcare priority in Ireland.³⁰ Although there are no Irish guidelines for the management of fibromyalgia, the HSE has published a national framework to support self-management of chronic conditions which recommends that patients receive information about their diagnosis, impact, and prognosis, as well as treatment options and self-management supports, once diagnosed.³¹

Despite these recommendations, in-person self-management programmes are not widely available in Ireland,³² with no standard illness-specific clinical programme to educate and support patients diagnosed with fibromyalgia, despite an urgent need.

Conclusion

Fibromyalgia is a condition with no known cause, consisting of subjective invisible symptoms with no known biomarkers, making it difficult to diagnose and treat.

Within the area of chronic disease management, knowledge and information are critical components. Despite the availability of international guidelines, information and treatment offered to patients in Ireland is not standardised, which may delay diagnosis, prolong healthcare utilisation, and in turn negatively impact patients’ confidence to self-manage this debilitating condition.