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‘Exercise to me is a scary word’: perceptions of fatigue, sleep dysfunction, and exercise in people with fibromyalgia syndrome—a focus group study

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Abstract

Fibromyalgia syndrome (FMS) is a common and complex chronic pain condition. Exercise is recommended in the management of the FMS; however, people with FMS often find exercise exacerbates their condition and causes overwhelming fatigue. The objective of this study was to explore the perceptions of fatigue and sleep dysfunction, and exercise in people with FMS. Three, 60–90 min focus groups were conducted with people with FMS (n = 14). Participants were recruited from patient support groups who had experienced therapeutic exercise in the management of their condition. Focus groups were video and audio recorded and transcriptions analysed for thematic content by three independent evaluators. Fatigue, sleep dysfunction, and pain were universally reported by participants. The over-arching theme to emerge was a lack of understanding of the condition by others. A huge sense of loss was a major sub-theme and participants felt that they had fundamentally changed since the onset of FMS. Participants reported that they were unable to carry out their normal activities, including physical activity and exercise. The invisibility of FMS was associated with the lack of understanding by others, the sense of loss, and the impact of FMS. People with FMS perceive that there is a lack of understanding of the condition among health care professionals and the wider society. Those with FMS expressed a profound sense of loss of their former ‘self’; part of this loss was the ability to engage in normal physical activity and exercise.

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Acknowledgements

The authors would like to thank Ms Margaret Peacock, Director of Fibromyalgia Support Northern Ireland, and all those who participated in our focus group discussions.

Funding

This work was supported by Department of Education and Learning (DEL) Studentship, Northern Ireland.

Author information

Authors and Affiliations

  1. School of Health Sciences, Institute of Nursing and Health Research, Ulster University, Co., Antrim, UK

    D. Russell, I. Wilson & C. M. Hughes

  2. Department of Physical Education, Faculty of Education Science, University of Cádiz, Cádiz, Spain

    I. C. Álvarez Gallardo

  3. Sport and Exercise Sciences Research Institute, School of Sports, Ulster University, Co., Antrim, UK

    G. W. Davison

  4. Department of Physical Education and Sport, University of Seville, Seville, Spain

    B. Sañudo

  5. Physiotherapy, School of Clinical Therapies, College of Medicine and Health, University College Cork, Cork, Ireland

    J. G. McVeigh

Authors
  1. D. Russell
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  2. I. C. Álvarez Gallardo
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  3. I. Wilson
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  4. C. M. Hughes
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  5. G. W. Davison
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  6. B. Sañudo
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  7. J. G. McVeigh
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Contributions

All authors contributed to the conception and design of the study. All authors contributed to the interpretation of the data and participated in drafting and critically revising the manuscript. All authors approved the final manuscript.

Corresponding author

Correspondence to J. G. McVeigh.

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The authors have no conflicts of interest to report.

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Russell, D., Álvarez Gallardo, I.C., Wilson, I. et al. ‘Exercise to me is a scary word’: perceptions of fatigue, sleep dysfunction, and exercise in people with fibromyalgia syndrome—a focus group study. Rheumatol Int 38, 507–515 (2018). https://doi.org/10.1007/s00296-018-3932-5

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  • DOI: https://doi.org/10.1007/s00296-018-3932-5

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