Several ENFA members recently attended The International Congress on Controversies in Fibromyalgia, held in Vienna, Austria between March 4th and 5th, 2019. Here, ENFA member Eva Deurloo, representing Fibromyalgiförbundet, Sweden, provides a summary of topics discussed during the conference.We gathered in Vienna, Austria for ‘The International Congress on Controversies in Fibromyalgia’, a congress focusing on all aspects of fibromyalgia, with the purpose of sharing new and emerging thinking within the field. Chaired by Jacob Ablin and Piercarlo Sarzi-Puttini, a wide selection of international speakers presented across the two days.
Contextualising fibromyalgiaFibromyalgia used to be, and somewhat remains today, a controversial condition, surrounded by several myths. While the condition is becoming more accepted in certain countries, the same cannot be said for other areas, where stigma and ignorance of fibromyalgia remain. Even as our understanding regarding the pathogenesis and neuroscience underlying fibromyalgia and chronic pain increases, heated controversies remain regarding many aspects of fibromyalgia, concerning its place in medicine and society, as well as the best ways to improve quality of life for those living with fibromyalgia. An increasing body of research is slowly building the evidence base for fibromyalgia. In addition, the setting of treatment guidelines nationally and internationally, recognition of fibromyalgia existing alongside other rheumatic and musculoskeletal diseases, and an increasing public awareness of fibromyalgia aided by celebrities such as Lady Gaga, are all facilitating a more accepting and understood world for the fibromyalgia community. However, the controversies alluded to in the title of the congress are rooted in the lack of common diagnostic criteria and an unclear pathogenesis. There have been four sets of diagnostic criteria published within the space of ten years, which has led to some confusion as different criteria identify different groups of patients. Fibromyalgia is not a new occurrence though. Historically, fibromyalgia-like conditions have been described by healthcare professionals by different names, but it was not until 1986 that the condition ‘Fibrositis’ was mentioned in the academic literature. The attitude at this time was that this is nothing to be taken seriously. The change came with the publication of the 1990 American College of Rheumatology (ACR) criteria, which was a huge step forward. This criteria for diagnosing fibromyalgia enabled more research to be done into the condition. Subsequently the picture of fibromyalgia has become clearer and more accepted by the medical community, even if much more work is still to be done.
Why are we so afraid of fibromyalgia?According to one study presented, General Practitioners in Norway rated diseases according to their perceived prestige and fibromyalgia was last on the list. One likely reason for this is the uncertainty about diagnosis, potentially hindered by the confusing number of different diagnostic criteria. We should be more confident in setting criteria which will lead to better understanding of the condition among healthcare professionals. The more unconvinced the doctors are of the diagnosis, the more people living with fibromyalgia feel the need to prove that they are unwell. Ultimately, this can lead to frustration and distrust between those living with fibromyalgia, and healthcare professionals. As long as fibromyalgia remains a symptom-based diagnosis with no targeted medical treatment, we have to demonstrate to healthcare professionals the importance of the biopsychosocial model. Unfortunately, most healthcare professionals are still are not willing to treat people living with fibromyalgia, often because they don’t know what to do, but they may accept the diagnosis. In order to treat people living with fibromyalgia using a biopsychosocial approach, you need a lot of time. Time, in a modern healthcare setting, is often scarce, and it is therefore difficult to apply this model. There are also other aspects to consider in patient-centred care. The availability of social support is immensely important. Striving for a multimodal approach that addresses the psychosocial and biological aspects of fibromyalgia is warranted. One way to address the close link between psychological wellbeing and severity of symptoms, is to integrate Cognitive Behavioural Therapy (CBT) in a treatment protocol alongside pharmacological treatment. In addition, clustering people with fibromyalgia into sub-groups may also make it easier to tailor treatment to the individual needs of each person with fibromyalgia. Ultimately, the aim is for a therapeutic alliance where care becomes a collaboration between the individual with fibromyalgia and their healthcare professionals; where expertise is recognised from both parties. There are also evolving concepts in the classification, diagnosis and epidemiology of fibromyalgia. In the 10th revision of the International Classification of Diseases (ICD-10), M79.7 is the code for fibromyalgia in the subgroup Rheumatology. In the 11th revision of ICD (ICD-11), fibromyalgia is included under MG30.01 Chronic widespread pain, the description of which is below:
Chronic widespread pain is diffuse pain in at least 4 of 5 body regions and is associated with significant emotional distress (anxiety, anger/frustration or depressed mood) or functional disability (interference in daily life activities and reduced participation in social roles). Chronic widespread pain is multifactorial: biological, psychological and social factors contribute to the pain syndrome. The diagnosis is appropriate when the pain is not directly attributable to a nociceptive process in these regions and there are features consistent with nociplastic pain and identified psychological and social contributors.The use of the relatively new term, nociplastic pain is defined as “pain that arises from altered nociception (the detection of painful stimuli, such as hitting your foot), despite no clear evidence of actual or threatened tissue damage causing the activation of peripheral nociceptors (pain detectors, such as nerves) or evidence for disease or lesion of the somatosensory system (part of the sensory system concerned with the conscious perception of touch, pressure, pain, temperature, position, movement, and vibration) causing the pain.” The new designation of nociplastic pain could help to describe the pain that underlies many different chronic pain states, including fibromyalgia, complex regional pain syndrome, and other types of musculoskeletal pain such as chronic low back pain, as well as visceral pain disorders such as irritable bowel syndrome and bladder pain syndrome. However, “nociplastic pain” is not a diagnosis; rather a way to understand the neurobiological workings of the nervous system that lead to pain when they go astray.