Fibromyalgia: Illness perception and wellbeing | Mary Anne Lauri

Prof. Mary Anne Lauri, Department of Psychology

Fibromyalgia has been recognised as an illness by the World Health Organization in 1992. Fibromyalgia is an invisible condition manifesting itself in pain all over the body. Other symptoms include impaired mental clarity (known as fibro-fog), non-restorative sleep, tiredness, tenderness, and headaches. The only constant is pain. This pain can be debilitating and it may come in cycles. To this day, although there have been great strides in understanding this condition, the aetiology is still unknown. However, hormonal and immunological factors all play a significant role in the development of fibromyalgia. It is indeed recognised that it could be an interplay of several factors involving psychological, genetic, biological, and sociocultural components. Stressful life events, childhood trauma, medical interventions and neuroendocrine problems may also play a part in its onset and development (1).

Download UNITY in pdf here

A condition with unknown aetiology

Fibromyalgia is difficult to diagnose. Since there are no biological markers, many people are either misdiagnosed or are diagnosed by the process of elimination of other conditions. There is disagreement among professionals regarding this condition and some attribute psychological causes to its onset, development and manifestation. It is thought that 2% to 4% of the population have this condition (2). In Malta official sources believe that there are around 900 people suffering from fibromyalgia (3). This is only about 0.2% of the population, so possibly this is a very conservative estimate.

Persons are not always understood by family members, friends, colleagues, and employers. Even physicians sometimes dismiss their pain. There are no tests that can be done to ascertain the presence of the condition. Persons with fibromyalgia therefore suffer not only the physical pain but also the psychological pain resulting from disbelieve of those around them who sometimes may attribute their behaviour to drama or laziness. Confirming fibromyalgia through instrumental and laboratory data is difficult and clinicians may sometimes blame psychological causes like stress and personality for illness pathogenesis.

As the quality of life of persons with fibromyalgia is lower than persons with other chronic conditions and in the general population. There has been a constant search for a drug that treats this condition. Yet, this quest remains elusive as recommended medications have limited effectiveness and too many unwanted side effects. Persons suffering from fibromyalgia try alternate treatments such as yoga, walking, physical exercise and psychotherapy.

Illness perceptions and quality of life of fibromyalgia sufferers

A biopsychosocial approach has proven to be helpful in understanding people with fibromyalgia and in providing them with a better quality of life. The Common-Sense Self-Regulation Model tries to explain how perceptions or mental schemas persons have of their condition may influence their lifestyle and ultimately their wellbeing (4). The model highlights five components which determine how patients make sense of their condition or sickness. These include (i) the beliefs of the disorder aetiology; (ii) the symptoms and the name of the disease; (iii) the perceptions of the short and long-term effects, and their social, economic and emotional implications; (iv) the expectations regarding the disease duration and course and (v) the subjective perception of being able to control, either personally or with the help of specialists, the disease course (5).

The Illness Perception Questionnaire

In their effort to create an instrument to measure illness representations, Weinmen and colleagues put forward the Illness Perception Questionnaire (IPQ). This tool was later developed into the IPQ-R (6). Studies using the IPQ have found clear associations between negative illness perceptions and negative health outcomes. An association was also found between illness perceptions and perceived impact of fibromyalgia symptoms on one’s life as well as subjective physical and mental health. Studies using the tool have found that illness perceptions influence the impact of pain, how well they comply with treatment, the efficacy of treatment, and coping behaviour (7).

Further studies investigated the effect of alternative therapies on fibromyalgia pain. Psychotherapy and physical exercise have both been found to ease the pain for some sufferers of fibromyalgia. Moreover, results found that when the clinician involves the person suffering from fibromyalgia as well as significant others in deciding on treatment, there were better result in both effectiveness and efficacy. In conclusion, it can be said that physicians and therapists working with persons with fibromyalgia must investigate the person’s perceptions of their condition in formulating treatment. A multi-model individualised program seems to give persons suffering from fibromyalgia a better quality of life than does drug therapy alone.

References

1. Wolfe, F., Schmukler, J., Jamal, S., Castrejon, I., Gibson, K. A., Srinivasan, S., Häuser, W., & Pincus, T. (2019). Diagnosis of Fibromyalgia: Disagreement Between Fibromyalgia Criteria and Clinician-Based Fibromyalgia Diagnosis in a University Clinic. Arthritis Care & Research 71(3), 343-351.

2. Galvez-Sánchez, C. M., Duschek, S., & Reyes Del Paso, G. A. (2019). Psychological impact of fibromyalgia: current perspectives. Psychology Research and Behavior Management, 12, 117-127. 

3. Maltese House of Representatives (2021). Persons who suffer from Fibromyalgia. Parliamentary Question no 22690, 13th Legislature.

4. Leventhal, H., Phillips, L. A., & Burns, E. (2016). The Common-Sense Model of Self-Regulation (CSM): a dynamic framework for understanding illness self-management. Journal of Behavioral Medicine, 39(6), 935-946.

5. Capraro, M., Dalla Valle, M., Podswiadek, M., De Sandre, P., Sgnaolin, E., Ferrari, R. (2012). The role of illness perception and emotions on quality of life in fibromyalgia compared with other chronic pain conditions. Reumatismo, 64 (3), 142-150

6. Weinman, J., Petrie, K. J., Moss-Morris, R., & Horne, R. (1996). The illness perception questionnaire: a new method for assessing the cognitive representation of illness. Psychology and Health, 11(3), 431-445

7. Moss-Morris, R., Weinman, J., Petrie, K., Horne, R., Cameron, L., & Buick, D. (2002). The Revised Illness Perception Questionnaire (IPQ-R). Psychology & Health, 17(1)