Why do we say that fibromyalgia "can't be seen" and therefore we're not entitled to psychiatric/neurological care, when all depressives and migraine sufferers are treated with the respect they deserve, even if their illness can't be seen?

Why do we say that fibromyalgia “can’t be seen” and therefore we’re not entitled to psychiatric/neurological care, when all depressives and migraine sufferers are treated with the respect they deserve, even if their illness can’t be seen?

Fibromyalgia syndrome has existed for centuries. It’s just that its name has changed over time, which has certainly contributed to the vagueness surrounding the condition and its late recognition. Many people have been diagnosed with rheumatism when in fact they were suffering from fibromyalgia. It was Sir William Gowers, an English neurologist, who first coined the name fibrositis in 1904. His hypothesis was that people suffered from an inflammation of the tissues. Studies subsequently refuted this hypothesis. Researchers found that people suffering from this syndrome also showed symptoms of anxiety and depression. One study even suggested that ‘fibrositis’ was linked to a chronic psychoneurotic condition (which is fortunately no longer the case today). Finally, in 1992, fibromyalgia syndrome became fibromyalgia and was recognised as a chronic disease by the World Health Organisation (WHO). Today, fibromyalgia is therefore recognised as a disease, characterised by the presence of chronic diffuse pain and often accompanied by sleep disorders, fatigue, mood disorders, anxiety and mild cognitive impairment often referred to as “fibromyalgia fog”. Other health problems are also more frequently encountered in these people.

Until recently, most research has been carried out on male subjects. As you may know, fibromyalgia affects twice as many women as men. Even before the 2010 diagnostic criteria were introduced, the ratio was six women to one man. The subjects studied were therefore hardly representative of all people living with fibromyalgia.

Fibromyalgia is a complex condition that requires comprehensive management (using a variety of intervention methods in different areas: physical, psychological, cognitive and social). In Quebec, the family doctor is the ideal person to provide this comprehensive care.

Developments are afoot in the diagnosis of fibromyalgia. In 2023, Alain Moreau, PhD, Professor at the Université de Montréal and researcher at the CHU Sainte-Justine Research Centre, discovered biomarkers of the disease, i.e. biological signals in the body that can provide important information about a person’s health or the presence of a particular disease such as fibromyalgia. There are a variety of biomarkers. This brand new molecular test is not yet marketed or approved. The arrival of a diagnostic test could mean faster diagnoses and, consequently, faster treatment.

For the moment, the diagnosis of fibromyalgia is clinical. In other words, it is based on the symptoms (what you feel) that you tell the doctor about in the questionnaire and on the physical examination. The latter is essentially normal in fibromyalgia. Since the physical examination is relatively normal, this explains why fibromyalgia cannot be seen. The doctor will order a blood test and perhaps some imaging tests to rule out other health problems.

It may be advisable to see a neurologist when there are findings on physical examination, for example a neurological deficit such as loss of feeling or loss of strength in specific areas, to identify another cause for these symptoms. Otherwise, if the examination is normal, it is not advisable to see a neurologist solely for the condition of fibromyalgia. Otherwise, if the examination is normal, it is not advisable to see a neurologist solely for the condition of fibromyalgia. 50% of people suffering from fibromyalgia also have headaches, including migraines and various types of headache. If your migraine is resistant to the usual treatments (pharmacological and non-pharmacological) prescribed or taught by your family doctor, it may be appropriate to see a neurologist.

Fibromyalgia is not a mental health disorder. However, between 30% and 50% of people present with an anxiety or depressive mood disorder when they are diagnosed with fibromyalgia. This figure may rise to 60% during the course of the illness. Consultation with a psychiatrist may be indicated, depending on other mental health problems already present, the severity of the problem, or if the response to usual treatments is unsatisfactory. Otherwise, the family doctor remains the best person to refer these problems to. On its own, therefore, fibromyalgia is not an indication for referral to psychiatry.

In Quebec and Canada, family doctors are responsible for diagnosing and monitoring fibromyalgia sufferers. If necessary, the family doctor may call in certain specialists, depending on the problem identified.

At present, there is no cure for fibromyalgia. Properly managed, however, symptoms can diminish, and for some people, appear to disappear. Symptom management is mainly non-pharmacological. In fact, the recommendations are mainly geared towards self-management strategies, i.e. strategies that sufferers apply on a daily basis to improve control over their condition and their quality of life. Well-dosed physical activity, respect for the principles of sleep hygiene, appropriate management of difficult emotions and stress, the adoption of healthy lifestyle habits, controlling one’s daily activities and maintaining satisfactory social relationships are the main elements of this self-management. Medication is recommended as a second-line treatment. It can help reduce certain symptoms such as pain, sleep disorders, anxiety and depression.

Despite advances in knowledge and research into fibromyalgia, the condition is still in its infancy in the history of medicine. As a result, it remains little-known and poorly understood by the general public and some healthcare professionals. This makes it particularly vulnerable to stigmatisation. Stigma is recognised as a major predictor of inequalities in health.

Stigma can lower people’s self-esteem and reduce their social support, leading to isolation. Those affected may feel guilty and avoid using health services. Even if they do seek help, their care may be affected by the stigmatising behaviour of healthcare professionals.

Mental health disorders and migraine are health conditions that are also, even today, stigmatised. Education for professionals and the general public, research and improved care and access are all factors in reducing stigma. Fibromyalgia, and chronic pain more generally, are somewhat behind this trend. However, national initiatives, such as the setting up of a Canadian pain task force in 2019, the creation of a Quebec website bringing together reliable data on the various aspects of pain, such as https://www.gerermadouleur.ca, and in particular World Fibromyalgia Day (May 12), are very encouraging for the future of people suffering from persistent pain and fibromyalgia.

Chantal Doré, ergothérapeute, Centre d’expertise en gestion de la douleur chronique du CIUSSS de l’Estrie-CHUS et chargée de cours école de réadaptation de l’Université de Sherbrooke.
Dre Nathalie Clément, omnipraticienne, Centre d’expertise en gestion de la douleur chronique du CIUSSS de l’Estrie-CHUS, professeure d’enseignement clinique, à la faculté de médecine de l’Université de Sherbrooke

Références:
1- Algorithme de prise en charge de la fibromyalgie: https://publications.msss.gouv.qc.ca/msss/document-001056/
2- Lévesque-Lacasse, A.; Cormier, S. La Stigmatisation De La Douleur Chronique : Un Survol Théorique Et Empirique. Douleurs Evaluation – Diagnostic – Traitement 2020, 21 (3), 109–116 DOI: 10.1016/j.douler.2020.04.013.
3- Nord, É. (2023) Encéphalomyélite myalgique et fibromyalgie, Un premier test moléculaire pour poser le diagnostic. Le médecin du Québec, V58, no5, 7-9