Advertisement

Rheumatology International

, Volume 38, Issue 3, pp 507–515 | Cite as

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

  • D. Russell
  • I. C. Álvarez Gallardo
  • I. Wilson
  • C. M. Hughes
  • G. W. Davison
  • B. Sañudo
  • J. G. McVeigh
Patient Opinion

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.

Keywords

Fibromyalgia syndrome Fatigue Exercise Sleep dysfunction Physiotherapy Focus group 

Notes

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.

Author 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.

Funding

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

Compliance with ethical standards

Conflict of interest

The authors have no conflicts of interest to report.

References

  1. 1.
    Wolfe F, Smyth HA, Yunus MB et al (1990) The American College of Rheumatology Criteria for the classification of Fibromyalgia. Report of the multicentre criteria committee. Arthritis Rheum 33(2):160–172CrossRefPubMedGoogle Scholar
  2. 2.
    Branco JC, Failde I, Blotman F et al (2010) Prevalence of fibromyalgia: a survey in five European countries. Semin Arthritis Rheum 39(6):448–453CrossRefPubMedGoogle Scholar
  3. 3.
    Zautra AJ, Fasman R, Parish BP et al (2007) Daily fatigue in women with osteoarthritis, rheumatoid arthritis, and fibromyalgia. Pain 128(1–2):128–135CrossRefPubMedGoogle Scholar
  4. 4.
    Arnold LM, Crofford LJ, Mease PJ et al (2008) Patient perspectives on the impact of fibromyalgia. Patient Educ Couns 73(1):114–120CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Okifuji A, Donaldson GW, Barck L et al (2010) Relationship between fibromyalgia and obesity in pain, function, mood, and sleep. J Pain 11(12):1329–1337CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Macfarlane GJ, Kronisch C, Dean LE et al (2016). EULAR revised recommendations for the management of fibromyalgia. Ann Rheum Dis.  https://doi.org/10.1136/annrheumdis-2016-209724. (Epub ahead of print) Google Scholar
  7. 7.
    Sañudo B, de Hoyo M, Carrasco L et al (2012) Effect of whole-body vibration exercise on balance in women with fibromyalgia syndrome: a randomized controlled trial. J Altern Comp Med 18(2):158–64CrossRefGoogle Scholar
  8. 8.
    Sañudo B, Carrasco L, de Hoyo M et al (2012 Jul) Effects of exercise training and detraining in patients with fibromyalgia syndrome: a 3-yr longitudinal study. Am J Phys Med Rehabil 91(7):561–569CrossRefPubMedGoogle Scholar
  9. 9.
    Hauser W, Klose P, Langhorst J et al (2010) Efficacy of different types of aerobic exercise in fibromyalgia syndrome: a systematic review and meta-analysis of randomized controlled trials. Arthritis Res Ther 12(3):R79CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Mengshoel AM, Vøllestad NK, Førre O (1995) Pain and fatigue induced by exercise in fibromyalgia patients and sedentary healthy subjects. Clin Exp Rheumatol 13(4):477–482PubMedGoogle Scholar
  11. 11.
    McVeigh JG, Millar A, Hurley DA et al (2003) Patients’ perceptions of exercise therapy in the treatment of fibromyalgia syndrome. Musculoskeletal Care 1:98–107CrossRefPubMedGoogle Scholar
  12. 12.
    van Santen M, Bolwijn P, Landewe R et al (2002) High or low intensity aerobic fitness training in fibromyalgia: does it matter? J Rheumatol 29(3):582–587PubMedGoogle Scholar
  13. 13.
    Wolfe F, Clauw DJ, Fitzcharles MA et al (2010) The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken) 62(5):600–610CrossRefGoogle Scholar
  14. 14.
    Vincent A, Benzo RP, Whipple MO et al (2013) Beyond pain in fibromyalgia: insights into the symptom of fatigue. Arthritis Res Ther 15(6):221CrossRefPubMedPubMedCentralGoogle Scholar
  15. 15.
    Sluijs EM, Kok GJ, van der Zee J (1993) Correlates of exercise compliance in physical therapy. Phys Ther 73(11):771–782CrossRefPubMedGoogle Scholar
  16. 16.
    Martin LR, Williams SL, Haskard KB et al (2005) The challenge of patient adherence. Ther Clin Risk Manag 1(3):189–199PubMedPubMedCentralGoogle Scholar
  17. 17.
    McVeigh JG, Lucas A (2003) Hurley DAet al. Patients’ perceptions of exercise therapy in the treatment of fibromyalgia syndrome: a survey. Musculoskeletal Care 1(2):98–107CrossRefPubMedGoogle Scholar
  18. 18.
    Creswell John W (2013) Qualitative inquiry and research design. Choosing among five approaches, 3rd edn. Sage Publications, CaliforniaGoogle Scholar
  19. 19.
    Ravitch SM, Riggan M (2012) Reason and Rigor: how conceptual frameworks guide research. Sage Publications, CaliforniaGoogle Scholar
  20. 20.
    Wanda P (2003) Confession, catharsis or cure? Rethinking the uses of reflexivity as methodological power in qualitative research. Int J Qual Stud Educ 16(2):175–196CrossRefGoogle Scholar
  21. 21.
    Denzin NK, Lincoln YS. (eds) (2000) Handbook of Qualitative Research, 2nd edn. Sage Publications, CaliforniaGoogle Scholar
  22. 22.
    Bazeley P (2013) Qualitative data analysis: practical strategies. Research Support Pty Limited, AustraliaGoogle Scholar
  23. 23.
    Boyatzis RE (1998) Transforming qualitative information: thematic analysis and code development. SAGE, LondonGoogle Scholar
  24. 24.
    Asbring P (2001) Chronic illness—a disruption in life: identity-transformation among women with chronic fatigue syndrome and fibromyalgia. J Adv Nurs 34(3):312–319CrossRefPubMedGoogle Scholar
  25. 25.
    Raymond MC, Brown JB (2000) Experience of fibromyalgia. Qualitative study. Can Fam Physician 46:1100–1106PubMedPubMedCentralGoogle Scholar
  26. 26.
    Egeli NA, Crooks VA, Matheson D, Ursa M, Marchant E (2008) Patients’ views: improving care for people with fibromyalgia. J Clin Nurs 17:362–369CrossRefPubMedGoogle Scholar
  27. 27.
    Parsons S, Harding G, Breen A, Foster N, Pincus T, Vogel S, Underwood M. Will shared decision making between patients with chronic musculoskeletal pain and physiotherapists, osteopaths and chiropractors improve patient care? Fam Pract. 2012 Apr;29(2):203–212Google Scholar
  28. 28.
    Perrot S, Choy E, Petersel D, Ginovker A, Kramer E (2012) Survey of physician experiences and perceptions about the diagnosis and treatment of fibromyalgia. BMC Health Serv Res 12:356CrossRefPubMedPubMedCentralGoogle Scholar
  29. 29.
    Sim J, Madden S (2008) Illness experience in fibromyalgia syndrome: a meta-synthesis of qualitative studies. Soc Sci Med 67(1):57–67CrossRefPubMedGoogle Scholar
  30. 30.
    Madden S, Sim J (2006) Creating meaning in fibromyalgia syndrome. Soc Sci Med 63(11):2962–2973CrossRefPubMedGoogle Scholar
  31. 31.
    Smith JA, Osborn M (2007) Pain as an assault on the identity: an interpretative phenomenological analysis of the psychological impact of chronic benign low back pain. Psychol Health 22:517–534CrossRefGoogle Scholar
  32. 32.
    García-Martínez AM, De Paz JA, Márquez S (2012) Effects of an exercise programme on self-esteem, self-concept and quality of life in women with fibromyalgia: a randomized controlled trial. Rheumatol Int 32(7):1869–1876CrossRefPubMedGoogle Scholar
  33. 33.
    Arnold LM (2006) Biology and therapy of fibromyalgia. New therapies in fibromyalgia. Arthritis Res Ther 8(4):212CrossRefPubMedPubMedCentralGoogle Scholar
  34. 34.
    Busch AJ, Webber SC, Brachaniec M et al (2011) Exercise therapy for fibromyalgia. Curr Pain Headache Rep 15(5):358–367CrossRefPubMedPubMedCentralGoogle Scholar
  35. 35.
    van Koulil S, van Lankveld W, Kraaimaat FW et al (2011) Tailored cognitive-behavioural therapy and exercise training improves the physical fitness of patients with fibromyalgia. Ann Rheum Dis 70(12):2131–2133CrossRefPubMedGoogle Scholar
  36. 36.
    Fitzcharles MA, Ste-Marie PA, Goldenberg DL et al (2013) National Fibromyalgia Guideline Advisory Panel. 2012 Canadian Guidelines for the diagnosis and management of fibromyalgia syndrome: executive summary. Pain Res Manag 18(3):119–126CrossRefPubMedPubMedCentralGoogle Scholar
  37. 37.
    Bernardy K, Klose P, Busch AJ et al (2013) Cognitive behavioural therapies for fibromyalgia. Cochrane Database Syst Rev 9:CD009796Google Scholar
  38. 38.
    Michie S, van Stralen MM, West R (2011) The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci 6:42CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.School of Health Sciences, Institute of Nursing and Health ResearchUlster University, Co.AntrimUK
  2. 2.Department of Physical Education, Faculty of Education ScienceUniversity of CádizCádizSpain
  3. 3.Sport and Exercise Sciences Research Institute, School of SportsUlster University, Co.AntrimUK
  4. 4.Department of Physical Education and SportUniversity of SevilleSevilleSpain
  5. 5.Physiotherapy, School of Clinical Therapies, College of Medicine and HealthUniversity College CorkCorkIreland

Personalised recommendations