Fibromyalgia – misunderstood and medically ill-defined

August 24, 2021

63%[i] of patients with fibromyalgia suffer from mood, sleep and cognitive disorders, and depression 

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. [ii]


It is a condition considered “medically ill-defined”[iii] and confirming a diagnosis can take up to up to five years[iv] 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,[v] 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%[vi] 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=support

SADAG – 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.gov

Healthline: www.healthline.com


REFERENCES

[i] 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/


[ii] 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


[iii] 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/


[iv] National Fibromyalgia and Chronic Pain Association (USA). https://fibroandpain.org/diagnosis-2


[v] Lydell C, Meyers OL. 1992. Referenced in Govender, CO. 2007. MA dissertation. University of Pretoria. https://repository.up.ac.za/handle/2263/22974


[vi] 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/

Dr Michael de Villiers explains why people can become sick every flu season
April 21, 2025
Dr Michael de Villiers explains why people can become sick every flu season and why the influenza vaccine is generally recommended every year.
Dr Mpho Ramabulana stresses the importance of early detection of colorectal cancer.
April 11, 2025
Colorectal cancer, one of the most prevalent yet preventable cancers, can develop in the colon or rectum, often starting as small polyps that can quietly become malignant if left unchecked. Dr Mpho Ramabulana, a colorectal surgeon and gastroenterologist at Netcare Akasia Hospital, underscores the life-saving power of vigilance and the importance of early detection.
Cardiologist Dr Robert Routier and cardiothoracic intensive care unit manager Sr Nondumiso Fakude
April 1, 2025
Cardiologist Dr Robert Routier urges the public to check their personal risk factors regularly to help prevent or manage cardiovascular disease.
Obstetrician and gynaecologist Dr Natalie Odell
March 26, 2025
The physical strain pregnancy puts on an expectant mother’s body should not be underestimated. An obstetrician gynaecologist offers her insights for alleviating discomfort and promoting wellbeing with exercise and stretching throughout pregnancy.
Dr Patience Sigwadi
March 19, 2025
Dr Patience Sigwadi, a leading paediatric nephrologist practising at Netcare Unitas Hospital in Centurion, has issued an urgent call for increased focus on skills development to address the escalating kidney disease crisis among children in South Africa.
Paediatric Nephrologist Prof Rajendra Bhimma
March 11, 2025
Paediatric Nephrologist Professor Bhimma was recently awarded the Fellowship to acknowledge his extensive work in research, community-based outreach and teaching of paediatric nephrology, among others.
Prof Bhekifa Dube
March 7, 2025
Netcare congratulates Professor Bhekifa Dube on his invitation to join the European Society for Vascular Surgery's clinical practice guidelines committee. His selection as the only specialist from the continent highlights the significance of this achievement on the global stage.
Rare Disease Day on 28 February 2025
February 28, 2025
The lives of millions of South Africans with a litany of rare diseases can be vastly improved, and even saved, by addressing challenges in identifying, studying and treating their conditions. With Rare Disease Day on the 28th of February 2025, the Rare Diseases Access Initiative (RDAI) is driving an evolution of the country’s healthcare, through innovative strategies to better care for over 4.2million people living with an estimated 7000 rare diseases. “As our healthcare system faces significant changes in the years ahead, it is vital that we also advocate for people living with rare diseases in South Africa, especially those with limited healthcare access,” said Kelly du Plessis, CEO of Rare Diseases South Africa (RDSA), a member of RDAI. “As part of our ongoing research and awareness efforts, RDAI has conducted an initial analysis of the incidence and prevalence of rare diseases within the country.” This research will assist in improving access to healthcare, policy development, and patient advocacy, while giving critical insight into the challenges faced by patients. “According to research, some rare diseases affect fewer than 1 in a million people, while others, such as Down syndrome, cystic fibrosis, and haemophilia, have a more recognisable prevalence,” says Dr. Helen Malherbe, RDAI lead researcher on rare disease prevalence data. “Many conditions are undetected, underdiagnosed or misdiagnosed, with too many having no information available about them at all.” The RDAI was formed in 2019 to promote a more favourable environment for those impacted by rare diseases in South Africa. Participants include Ampath, the Board of Healthcare Funders (BHF), Discovery Health, Genetic Counsellors South Africa (SASHG), the Government Employees Medical Scheme (GEMS), Health Funders Association (HFA), Medihelp, Medscheme, North-West University (NWU), Rare Diseases South Africa (RDSA), the South African Medical Association (SAMA) and The South African Medical Technology Industry Association (SAMED). The Council for Medical Schemes (CMS) participates as an observer. In the same year, Rare Disease International signed a memorandum of understanding with the World Health Organisation leading to an international rare disease policy framework. In 2021, the United Nations General Assembly moved to adopt a resolution recognising 300 million people living with rare diseases worldwide. “A general lack of awareness and delayed diagnosis remain major hurdles for those affected by rare diseases. Policymakers and healthcare stakeholders need to prioritise access to treatment, diagnosis, and support for rare disease patients,” says Bada Pharasi, CEO of IPASA, “Through this initiative, working collaboratively with stakeholders at every level of the healthcare supply chain, we can bring real and meaningful change to those affected, including family members and care givers, through smart and efficient strategies.” The globally agreed definition of a rare disease is any medical condition with a specific pattern of clinical signs, symptoms, and findings that affects fewer than or equal to 1 in 2000 persons in a population. “Most are genetic, and some are inherited and passed down in families,” Malherbe says. “Some affect only the patient’s genetic recipe, while others may be acquired during life due to infection, trauma, or environmental effects. For many, the cause is still unknown. “These conditions mainly affect children, as they are largely incurable and many are life-threatening. Some require specialised and co-ordinated care, some have limited and expensive treatment options, while others have no information or effective treatments at all,” she adds. The RDAI is calling for a patient-centred care model built on equitable access, transparency and efficiency. Naturally, this model calls for the open participation of patients, the healthcare industry, health professionals, and the Government. “The most critical elements are robust diagnosis standards, improved access to treatment, data collection and management, co-ordination of care, measurement of outcomes and ongoing collaborative research,” du Plessis says. “We need to establish rare disease advisory committees, map gaps and opportunities, establish system requirements, create a roadmap and plan a phased implementation with clear timelines.” The RDAI states that these policy development steps would be a start in quantifying the disease burden and defining standards of care. This would be followed by building and strengthening the capacity to facilitate appropriate diagnosis, treatment, continuity and data monitoring. Thoneshan Naidoo, Chief Executive Officer of the Health Funders Association noted that, “We appreciate the unique opportunity provided by RDAI which enables stakeholders across the industry to work together and identify strategies that improve equitable access to the appropriate diagnosis, treatment and healthcare services for rare disease patients, in an affordable and sustainable manner, taking account of the other pressing needs across the healthcare system.” “True innovation in healthcare is only possible through partnerships and joint advocacy efforts that raise awareness and improve access to treatment. Our long-term goal is the development of a rare diseases policy framework and guidelines for coordinated care,” says Pharasi. “Our members are united in the commitment to unlocking improved patient outcomes and improving access to services and robust health needs assessment facilities.” he concludes. About RDAI The Rare Diseases Access Initiative (RDAI) is dedicated to advocating for improved healthcare access, policy development, and patient support for those affected by rare diseases in South Africa. The initiative brings together key healthcare stakeholders, including pharmaceutical associations, funders, genetic specialists, and patient advocacy groups, to drive impactful change. About RDSA Founded in 2013, Rare Diseases South Africa (RDSA) is a non-profit organisation advocating to ensure that people living with rare diseases and congenital disorders experience greater recognition, support, improved health service and better overall quality of life. Started out of personal need following the diagnosis of organisation founder, Kelly du Plessis' son, it became evident that there was a lack of awareness and support for rare diseases in general in South Africa. About IPASA The Innovative Pharmaceutical Association South Africa (IPASA) is a voluntary trade association representing 24 leading pharmaceutical companies committed to research, development, and innovation. Our mission is to drive healthcare advancement by advocating for policies that improve patient access to safe, high-quality, and affordable medicines.
Gastroenterologist Dr Barbara Makumbi explains the toll acid reflux can take on your health
February 26, 2025
Gastroenterologist Dr. Barbara Makumbi discusses common risk factors and offers tips for managing reflux and the longer-term condition known as gastroesophageal reflux disease (GORD).
Netcare St Anne’s Hospital emergency department now has both trauma and emergency  specialists.
February 19, 2025
From treating trauma injuries caused by wildlife, road accidents and sports, to heart attacks, stroke, or the sudden onset of other concerning medical symptoms – the emergency department at Netcare St Anne’s Hospital never sleeps.
More Posts