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Themes related to coping with fibromyalgia included emotional coping, practical coping, and coping with the social environment.
An interdisciplinary professional team in rheumatology units is useful in order to manage patients with fibromyalgia and help them cope with their condition, according to a study published in International Journal of Qualitative Studies on Health and Well-being.1
Previous research, particularly in focus groups, has indicated that a fibromyalgia diagnosis has negatively impacted quality of life, including being able to perform the usual mental and physical activities, a loss of previous sense of self, problems maintaining connections with family and friends, exercise avoidance, and an inability to advance professionally. This has resulted in depression, anxiety, and distress among this patient population. Frequent themes for patients with fibromyalgia include poor functional performance, uncertainty, a lack of credibility, and social stigma.2
“Fibromyalgia affects patients’ quality of life. Therefore, an essential part of patients’ medical management is to develop appropriate coping strategies,” wrote Liat Hamama, senior lecturer at the Bob Shapell School of Social Work at Tel Aviv University, and colleagues. “We aimed to obtain a comprehensive picture of the cognitive and behavioral strategies applied by FM patients as an outcome of the diagnosis process, adopting behaviors to manage the symptoms, and the attitude and support they receive from their immediate environment (eg, family, significant others, and friends).”
A qualitative study was performed based on the grounded theory method, defined as the discovery of theory from data, using focus group discussions. This method was utilized because fibromyalgia is influenced by the social environment. Two discussions were conducted with 15 Israeli women with fibromyalgia, recruited from 2 major non-profit organizations, in January and February 2022. The groups were conducted using a semi-structured interview guide focused on the ways in which patients coped with fibromyalgia. A constant comparative analysis method was employed.
The age range of the women enrolled in the study was 47-72 years, 7 women were married, most (n = 9) were non-employed, 13 had at least 1 child, and the mean number of years since diagnosis was 9 (range: 3-16 years). The most frequent drugs used to treat fibromyalgia were nonsteroidal anti-inflammatory drugs (NSAIDs), cannabis, tricyclic anti-depressants, and gabapentin. Non-pharmacologic treatments included meditation and yoga, massage, and hydrotherapy.
Themes related to coping with fibromyalgia included emotional coping (repression and despair to acceptance and completion, and a range of negative and positive emotions), practical coping (receiving and internalizing the diagnosis, living with the symptoms, and lifestyle changes), and coping with the social environment (sharing vs concealing, social connection and disconnection, and environmental resources). Three themes of the patient’s perceptions of causes of fibromyalgia that impacted their coping were a demanding lifestyle, perfectionism as a personality trait, and traumatic life events.
Patients reported a wide range of negative and positive emotions, including anger, guilt, sadness, frustration, and a feeling of missing out. Regarding practical coping, patients noted the lengthy process until diagnosis, which included misdiagnosis and uncertainty. Common symptoms among the cohort included pain, stiffness, weakness, fatigue, exhaustion, and a lack of concentration and energy. Patients reported feelings of burden, a lack of understanding their condition, and disappointing the people surrounding them, which led some of them to hide their diagnosis.
Investigators stated that future research should include men to evaluate variations in coping and the differences in the way fibromyalgia impacts both sexes. As patients were recruited through non-profit organizations, results may not be generalizable among all patients with fibromyalgia.
“Overall, the participants reported that the process to reaching their fibromyalgia diagnosis was frequently long and stressful,” investigators concluded. “Our study gives attention to the participants’ perceptions on causes that evoke fibromyalgia’s appearance, a domain which has received insufficient attention with regard to patients’ coping. Additionally, our study highlights that coping should be viewed in relation to the diagnostic process, the severity of symptoms, and the participants’ social environment (ie, family, significant others, friends, and work colleagues).”