The experience of poor sleep in people with fibromyalgia: a qualitative meta-synthesis

Introduction: Fibromyalgia is a chronic condition characterised by widespread pain and sleep disturbance. Disturbed sleep is associated with increased pain intensity, poor physical and cognitive functioning, low mood and poor quality of life. It is, therefore, important to understand the role of sleep in fibromyalgia as experienced and reported by patients.

Aims: To explore how people diagnosed with fibromyalgia experience and manage poor sleep.

Method: An update of a qualitative meta-synthesis of qualitative and/or mixed methods studies exploring the experience and/or management of sleep problems in people with fibromyalgia. We searched four major electronic bibliographic databases (PubMed, Scopus, ISI WebofScience and Cinahl Plus) for all years up to November 2021 without applying language restrictions. We conducted a thematic analysis to capture the phenomena described across the identified literature, looking for areas of reciprocity and divergence. Finally, we mapped the relationships between analytical themes to the ‘symptom experience’ and ‘symptom management strategies’ domains of the Symptom Management Theory conceptual framework. This meta-synthesis forms part of a broader health technology assessment evaluating interventions for the management of poor sleep quality in people with fibromyalgia.

Results: Nine reports from eight studies were combined with the studies identified in the earlier meta-synthesis to provide a total of 26 reports from 25 studies. The studies reported data from the perspectives of 565 adults with fibromyalgia. The majority (90.4%) were women and were white (80.5%). Reported mean ages of the participants ranged from 41 years to 61 years. Other demographic characteristics (e.g., sociodemographic status) were often not reported. Results were organized into two overarching themes: experience of poor sleep in fibromyalgia and poor sleep quality management strategies in fibromyalgia. Poor sleep was described as amongst the worst symptoms of fibromyalgia. Poor sleep maintenance and sleep disturbance were the problems participants experienced most often. Good quality sleep was perceived as having uninterrupted sleep, feeling rested/renewed upon waking, waking with an absence of fatigue and pain and having enough energy to perform daily activities. Our synthesis confirmed earlier findings regarding the bidirectional relationship between poor sleep and pain. Insufficient sleep was reported to increase pain intensity, which led to a state of fatigue that prevented good sleep and impacted on daily life. Conversely, some participants felt that getting a good night’s sleep increased their pain due to being physically immobile while being asleep. Poor sleep was also described as having a negative impact on cognitive functioning, mental health and fibromyalgia symptom ‘flare-ups’. Strategies to manage the consequences of a sleepless night included trying to rest/relax during the day and taking medication, although some participants felt that medication was ineffective and/or caused unpleasant side effects.

Conclusion: The findings from our synthesis demonstrate that poor sleep is a common and profoundly disabling aspect of living with fibromyalgia. It is also a core component of fibromyalgia with negative consequences on pain, general health and wellbeing.

Funding acknowledgement: This work was funded by the UK National Institute for Health and Care Research Health Technology Assessment Programme (research award ID: NIHR132999).