Fibromyalgia – misunderstood and medically ill-definedSubmitted by Linda Christensen
Fibromyalgia is a widely misunderstood condition, causing chronic pain and fatigue, impacting sufferers’ mental health, ability to work and quality of life – and predominantly affecting women, 6 to 9 times more than men.
It is a condition considered “medically ill-defined” and confirming a diagnosis can take up to up to five years of eliminating other possible causes while battling stigma and scepticism, causing severe mental strain and a significant financial burden even for patients with medical aid cover.
With health in focus in Women’s Month of August, specialist neuropsychiatrist and member of the South African Society of Psychiatrists (SASOP), Dr Anersha Pillay said that a growing understanding and recognition of fibromyalgia as a genuine disorder, and not something “all in the mind” as it was seen in the past, had led to a range of treatments that are credible, scientifically evaluated and making a real difference in sufferers being able to live more normal lives.
There are medications to assist with the most common symptoms of severe pain and sleep difficulties, whilst cognitive behaviour therapy (CBT) has been shown to be effective in managing the psychological aspects of fibromyalgia. In addition, exercise, relaxation and stress-reduction techniques have been proven beneficial for pain management, improved sleep and overall wellbeing, she said.
Dr Pillay, said that fibromyalgia affects 2 to 5% of the population1 globally, and an estimated 3% in South Africa, causing chronic pain that mainly affects the musculoskeletal system (muscles, bones and joints).
Along with widespread pain, the most common symptoms of fibromyalgia are muscle tenderness and stiffness, sleep disturbances, fatigue, mood and depressive symptoms, and cognitive problems often referred to as “fibro fog” – difficulties with memory, focus, attention, concentration and slowed thinking.
Sexual dysfunction and other physical symptoms such as migraines, headaches, irritable bowel or bladder, and a painful jaw are also seen in fibromyalgia.“With its combined physical and cognitive impact, together with challenges to executive functioning such as the ability to plan, organise and complete tasks, fibromyalgia can have a severe impact on a person’s ability to perform optimally at work, leading to absenteeism and even physical impairment and disability.
“These symptoms also impact on the sufferer’s social functioning and interpersonal relationships, due to depressive symptoms and difficulty regulating emotions and moods, as well as their feeling of being isolated by their illness and the lack of people’s understanding of their condition.“Altogether, fibromyalgia can have a profound impact on a sufferer’s life,” Dr Pillay said.
The prevalence of psychiatric symptoms in up to 63% of patients with fibromyalgia, consisting of mainly mood, sleep and cognitive disorders, with depression the most common, means that the condition is often best managed by a multi-disciplinary team involving psychiatrists and psychologists working alongside general practitioners, specialists in rheumatology and pain management as well as other disciplines such as occupational therapists, physiotherapists and biokineticists.
The understanding of fibromyalgia has evolved over the past few decades and the roots of the condition are now seen in neurochemical imbalances in the central nervous system that cause the “volume control setting” for pain to act abnormally thereby amplifying/increasing the perceptions and experiences of pain.“In essence, this ‘volume control setting’ for pain is abnormally high, resulting in the body experiencing pain more severely and at the same time being unable to access the central nervous system’s usual mechanisms to naturally reduce or inhibit the experience of pain,” Dr Pillay said.
The condition can be genetically-linked and can arise at anything from 30 to 60 years of age, although it can also have an onset in childhood; and can exist together with other rheumatological disorders including rheumatoid arthritis, lupus and Sjögren’s syndrome.
Fibromyalgia symptoms are often also triggered or worsened by recent physical trauma, infections, major adverse life events and psychological stress.
Dr Pillay said that the difficulty and delays in diagnosing fibromyalgia are partly because there are no objective diagnostic tests for the condition. The diagnosis is thus made by a process of elimination of other causes of pain and use of the American College of Rheumatology guidelines for assessment of the extent of pain, severity of symptoms and impact on functioning.
In terms of treatment, she said that the European League Against Rheumatism (EULAR) recommended that any treatment should take into account the availability, cost and safety to the patient, and be tailored to the individual’s needs.
Treatments scientifically evaluated and recommended by EULAR include:
Physical exercise, which is easily available, cost-effective and beneficial for pain management, physical functioning and overall well-being. This could involve aerobic or strengthening types of exercise.
Other therapies including meditative movement therapies, mindfulness-based stress reduction, acupuncture and hydrotherapy have showed varying benefits for improved sleep, fatigue, pain and quality of life.
Psychotherapy is considered the most beneficial for fibromyalgia patients who experience mood, depression and anxiety difficulties, and who struggle with healthy coping mechanisms for the condition. Cognitive Behaviour Therapy (CBT) has been assessed as effective in producing a reduction in pain, disability and improving mood.
Medication: A number of medications are recommended for severe pain, poor sleep and comorbid psychiatric disorders such as depression and anxiety. Fibromyalgia sufferers should contact their general practitioner or psychiatrist for a prescription for the most appropriate medication.
Multimodal rehabilitation, combining selected therapies, is recommended for fibromyalgia patients with severe disability, and has been shown to result in improvement. Dr Pillay said that common over-the-counter pain- and fever-relieving drugs (non-steroidal anti-inflammatories, or NSAIDs), anti-depressants in the SSRI and MAOI categories, as well as growth hormones, strong opioids, sodium oxybate and corticosteroids were not recommended for treatment of fibromyalgia, due to lack of efficacy and a strong risk of adverse side-effects.
She said that prompt diagnosis and patient education on the nature of their condition and how to manage it across the dimensions of pain, work and social functioning, and psychological impact, would be key to helping a fibromyalgia sufferer cope with their condition and achieve optimal quality of life.
Resources for support and patient information for fibromyalgia patients: Fibromyalgia Support Group South Africa: http://www.fibromyalgiasa.co.za/index.php?page=supportSADAG – The South African Depression and Anxiety Group: www.sadag.org. My Fibro Team (connect with other fibromyalgia patients worldwide): www.myfibroteam.com/Mayo Clinic: www.mayoclinic.org US Centres for Disease Control: www.cdc.govHealthline: www.healthline.com
Marques, AP et al. 2017. Prevalence of fibromyalgia: Literature review update. Revista Brasileira de Reumatologia (English edition). https://www.sciencedirect.com/science/article/pii/S2255502117300056?via%3Dihub Cooper S, Gilbert L. 2017. An exploratory study of the experience of fibromyalgia diagnosis in South Africa. Health (London). https://pubmed.ncbi.nlm.nih.gov/28521648/ National Fibromyalgia and Chronic Pain Association (USA). https://fibroandpain.org/diagnosis-2 Lydell C, Meyers OL. 1992. Referenced in Govender, CO. 2007. MA dissertation. University of Pretoria. https://repository.up.ac.za/handle/2263/22974 Kleykamp B, et al. 2020. The Prevalence of Psychiatric and Chronic Pain Comorbidities in Fibromyalgia: an ACTTION Systematic Review. Seminars in Arthritis and Rheumatism. https://pubmed.ncbi.nlm.nih.gov/33383293/
JIGSAW PRLinda Christensen
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