‘This constant being woken up is the worst thing’ – experiences of sleep in fibromyalgia syndrome

Abstract

Purpose. Sleep disturbance affects a high proportion of people with fibromyalgia syndrome (FMS). This study aims to explore people's perceptions of their sleep quality and the influence sleep has on their symptoms and daily lives.

Method. Semi-structured interviews were conducted with sixteen participants diagnosed with primary FMS, covering all aspects of the sleep experience. The audio recorded qualitative interviews were transcribed verbatim and analysed using interpretative phenomenological analysis.

Results. Poor sleep dominated participants' lives, affecting levels of pain and fatigue, engagement in daily activities and ability to cope. Participants reported experiencing blocks of sleep, with the most profound difficulty for participants being able to go back to sleep after a night time awakening. They also felt a lack of control in their ability to manage their sleep difficulties and use of day-time napping appeared to be the only perceived beneficial coping strategy for relieving daytime sleepiness and symptoms of fatigue.

Conclusions. Greater emphasis on screening for sleep disorders and how to manage poor sleep is needed in rehabilitation programmes provided for patients with FMS.

Keywords:

• Fibromyalgia
• sleep
• quality of life

Acknowledgements

We like to thank the Fibromyalgia Association UK for their support with this study.