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

Deborrah Russell, Inmaculada C Álvarez Gallardo, Iseult M. Wilson, Ciara M Hughes, Gareth W Davison, Borja Sañudo, Joseph G McVeigh

Research output: Contribution to journalArticle

2 Citations (Scopus)

Abstract

Background. 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. Objective. To explore the perceptions of fatigue and sleep dysfunction, and exercise in people with FMS. Methods. Three, 60-90 minute 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 analyzed for thematic content by three independent evaluators. Results. 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 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.Conclusion. 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.
LanguageEnglish
JournalRheumatology International
Volumetbc
DOIs
Publication statusPublished - 16 Jan 2018

Fingerprint

Fibromyalgia
Focus Groups
Fatigue
Sleep
Exercise
Aptitude
Self-Help Groups
Chronic Pain
Delivery of Health Care
Pain

Keywords

  • Fibromyalgia syndrome
  • fatigue
  • exercise
  • sleep dysfunction
  • physiotherapy
  • focus group

Cite this

@article{4afd000bf07d4374b0e0cca9f7cb5cf4,
title = "‘Exercise to me is a scary word’: Perceptions of fatigue, sleep dysfunction and exercise in people with fibromyalgia syndrome: a focus group study",
abstract = "Background. 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. Objective. To explore the perceptions of fatigue and sleep dysfunction, and exercise in people with FMS. Methods. Three, 60-90 minute 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 analyzed for thematic content by three independent evaluators. Results. 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 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.Conclusion. 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",
author = "Deborrah Russell and {{\'A}lvarez Gallardo}, {Inmaculada C} and Wilson, {Iseult M.} and Hughes, {Ciara M} and Davison, {Gareth W} and Borja Sa{\~n}udo and McVeigh, {Joseph G}",
note = "Reference text: [1] Wolfe F, Smyth HA, Yunus MB et al. The American College of Rheumatology Criteria for the classification of Fibromyalgia. Report of the multicentre criteria committee. Arthritis Rheum. 1990;33(2):160-72. [2] Branco JC, Failde I, Blotman F et al. Prevalence of fibromyalgia: a survey in five European countries. Semin Arthritis Rheum. 2010;39(6):448-53. [3] Zautra AJ, Fasman R, Parish BP et al. Daily fatigue in women with osteoarthritis, rheumatoid arthritis, and fibromyalgia. Pain 2007;128(1-2):128-135. [4] Arnold LM, Crofford LJ, Mease PJ et al. Patient perspectives on the impact of fibromyalgia. Patient Educ Couns. 2008;73(1):114-20. [5] Okifuji A, Donaldson GW, Barck L et al. Relationship between fibromyalgia and obesity in pain, function, mood, and sleep. J Pain. 2010;11(12):1329-37. [6] Macfarlane GJ, Kronisch C, Dean LE et al. EULAR revised recommendations for the management of fibromyalgia. Ann Rheum Dis. 2016 Jul 4. pii: annrheumdis-2016-209724. doi: 10.1136/annrheumdis-2016-209724. [Epub ahead of print]. [7] Sa{\~n}udo B, de Hoyo M, Carrasco L et al. Effect of whole-body vibration exercise on balance in women with fibromyalgia syndrome: a randomized controlled trial. J Altern Comp Med. 2012;18(2):158-64. [8] Sa{\~n}udo B, Carrasco L, de Hoyo M et al. Effects of exercise training and detraining in patients with fibromyalgia syndrome: a 3-yr longitudinal study. Am J Phys Med Rehabil. 2012 Jul;91(7):561-9. [9] Hauser W, Klose P, Langhorst J et al. Efficacy of different types of aerobic exercise in fibromyalgia syndrome: a systematic review and meta-analysis of randomized controlled trials. Arthritis Res Ther. 2010;12(3):R79. [10] Mengshoel AM, V{\o}llestad NK, F{\o}rre O. Pain and fatigue induced by exercise in fibromyalgia patients and sedentary healthy subjects. Clin Exp Rheumatol. 1995;13(4):477-82. [11] McVeigh JG, Millar A, Hurley DA et al. Patients' perceptions of exercise therapy in the treatment of fibromyalgia syndrome. Musculoskeletal Care 2003;1:98-107. [12] van Santen M, Bolwijn P, Landewe R et al. High or low intensity aerobic fitness training in fibromyalgia: does it matter? J Rheumatol. 2002;29(3):582-7. [13] Wolfe F, Clauw DJ, Fitzcharles MA et al. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010;62(5):600-10. [14] Vincent A, Benzo RP, Whipple MO et al. Beyond pain in fibromyalgia: insights into the symptom of fatigue. Arthritis Res Ther. 2013;15(6):221. [15] Sluijs EM, Kok GJ, van der Zee J. Correlates of exercise compliance in physical therapy. Phys Ther. 1993;73(11):771-82. [16] Martin LR, Williams SL, Haskard KB et al. The challenge of patient adherence. Ther Clin Risk Manag. 2005;1(3):189-99. [17] McVeigh JG, Lucas A, Hurley DAet al. Patients' perceptions of exercise therapy in the treatment of fibromyalgia syndrome: a survey. Musculoskeletal Care. 2003;1(2):98-107. [18] Creswell John W. Qualitative Inquiry and Research Design. Choosing among Five Approaches 3rd Ed. California: Sage Publications; 2013. [19] Ravitch SM, Riggan M. Reason and Rigor: How conceptual frameworks guide research. California: Sage Publications; 2012. [20] Wanda P. Confession, catharsis or cure? Rethinking the uses of reflexivity as methodological power in qualitative research. Int J Qual Stud Educ. 2003;16(2):175-196. [21] Denzin NK, Lincoln YS. Eds. Handbook of Qualitative Research 2nd Ed. California: Sage Publications; 2000. [22] Bazeley P. Qualitative Data Analysis: Practical Strategies. Research Support Pty Limited; Australia 2013. [23] Boyatzis RE. Transforming qualitative information: Thematic analysis and code development. London: SAGE;1998. [24] Asbring P. Chronic illness -- a disruption in life: identity-transformation among women with chronic fatigue syndrome and fibromyalgia. J Adv Nurs. 2001;34(3):312-9. [25] Raymond MC, Brown JB. Experience of fibromyalgia. Qualitative study. Can Fam Physician. 2000;46:1100-6. [26] Egeli NA, Crooks VA, Matheson D, Ursa M, Marchant E. Patients’ views: improving care for people with fibromyalgia. J Clin Nurs. 2008;17:362–369. [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):203-12. [28] Perrot S, Choy E, Petersel D, Ginovker A, Kramer E. Survey of physician experiences and perceptions about the diagnosis and treatment of fibromyalgia. BMC Health Serv Res. 2012 Oct 10;12:356. [29] Sim J, Madden S. Illness experience in fibromyalgia syndrome: a meta-synthesis of qualitative studies. Soc Sci Med. 2008;67(1):57-67. [30] Madden S, Sim J. Creating meaning in fibromyalgia syndrome. Soc Sci Med. 2006;63(11):2962-73. [31] Smith J A, Osborn M. Pain as an assault on the identity: An interpretative phenomenological analysis of the psychological impact of chronic benign low back pain. Psychology and Health. 2007;(22):517–534. [32] Garc{\'i}a-Mart{\'i}nez AM, De Paz JA, M{\'a}rquez S. Effects of an exercise programme on self-esteem, self-concept and quality of life in women with fibromyalgia: a randomized controlled trial. Rheumatol Int. 2012;32(7):1869-76. [33] Arnold LM. Biology and therapy of fibromyalgia. New therapies in fibromyalgia. Arthritis Res Ther. 2006;8(4):212. [34] Busch AJ, Webber SC, Brachaniec M, et al. Exercise therapy for fibromyalgia. Curr Pain Headache Rep. 2011;15(5):358-367. [35] van Koulil S, van Lankveld W, Kraaimaat FW et al. Tailored cognitive-behavioural therapy and exercise training improves the physical fitness of patients with fibromyalgia. Ann Rheum Dis. 2011;70(12):2131-3. [36] Fitzcharles MA, Ste-Marie PA, Goldenberg DL et al. National Fibromyalgia Guideline Advisory Panel. 2012 Canadian Guidelines for the diagnosis and management of fibromyalgia syndrome: executive summary. Pain Res Manag. 2013;18(3):119-26. [37] Bernardy K, Klose P, Busch AJ et al. Cognitive behavioural therapies for fibromyalgia. Cochrane Database Syst Rev. 2013 Sep 10;(9):CD009796. [38] Michie S, van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci. 2011;6:42.",
year = "2018",
month = "1",
day = "16",
doi = "10.1007/s00296-018-3932-5",
language = "English",
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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. / Russell, Deborrah; Álvarez Gallardo, Inmaculada C; Wilson, Iseult M.; Hughes, Ciara M; Davison, Gareth W; Sañudo, Borja; McVeigh, Joseph G.

In: Rheumatology International, Vol. tbc, 16.01.2018.

Research output: Contribution to journalArticle

TY - JOUR

T1 - ‘Exercise to me is a scary word’: Perceptions of fatigue, sleep dysfunction and exercise in people with fibromyalgia syndrome: a focus group study

AU - Russell, Deborrah

AU - Álvarez Gallardo, Inmaculada C

AU - Wilson, Iseult M.

AU - Hughes, Ciara M

AU - Davison, Gareth W

AU - Sañudo, Borja

AU - McVeigh, Joseph G

N1 - Reference text: [1] Wolfe F, Smyth HA, Yunus MB et al. The American College of Rheumatology Criteria for the classification of Fibromyalgia. Report of the multicentre criteria committee. Arthritis Rheum. 1990;33(2):160-72. [2] Branco JC, Failde I, Blotman F et al. Prevalence of fibromyalgia: a survey in five European countries. Semin Arthritis Rheum. 2010;39(6):448-53. [3] Zautra AJ, Fasman R, Parish BP et al. Daily fatigue in women with osteoarthritis, rheumatoid arthritis, and fibromyalgia. Pain 2007;128(1-2):128-135. [4] Arnold LM, Crofford LJ, Mease PJ et al. Patient perspectives on the impact of fibromyalgia. Patient Educ Couns. 2008;73(1):114-20. [5] Okifuji A, Donaldson GW, Barck L et al. Relationship between fibromyalgia and obesity in pain, function, mood, and sleep. J Pain. 2010;11(12):1329-37. [6] Macfarlane GJ, Kronisch C, Dean LE et al. EULAR revised recommendations for the management of fibromyalgia. Ann Rheum Dis. 2016 Jul 4. pii: annrheumdis-2016-209724. doi: 10.1136/annrheumdis-2016-209724. [Epub ahead of print]. [7] Sañudo B, de Hoyo M, Carrasco L et al. Effect of whole-body vibration exercise on balance in women with fibromyalgia syndrome: a randomized controlled trial. J Altern Comp Med. 2012;18(2):158-64. [8] Sañudo B, Carrasco L, de Hoyo M et al. Effects of exercise training and detraining in patients with fibromyalgia syndrome: a 3-yr longitudinal study. Am J Phys Med Rehabil. 2012 Jul;91(7):561-9. [9] Hauser W, Klose P, Langhorst J et al. Efficacy of different types of aerobic exercise in fibromyalgia syndrome: a systematic review and meta-analysis of randomized controlled trials. Arthritis Res Ther. 2010;12(3):R79. [10] Mengshoel AM, Vøllestad NK, Førre O. Pain and fatigue induced by exercise in fibromyalgia patients and sedentary healthy subjects. Clin Exp Rheumatol. 1995;13(4):477-82. [11] McVeigh JG, Millar A, Hurley DA et al. Patients' perceptions of exercise therapy in the treatment of fibromyalgia syndrome. Musculoskeletal Care 2003;1:98-107. [12] van Santen M, Bolwijn P, Landewe R et al. High or low intensity aerobic fitness training in fibromyalgia: does it matter? J Rheumatol. 2002;29(3):582-7. [13] Wolfe F, Clauw DJ, Fitzcharles MA et al. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010;62(5):600-10. [14] Vincent A, Benzo RP, Whipple MO et al. Beyond pain in fibromyalgia: insights into the symptom of fatigue. Arthritis Res Ther. 2013;15(6):221. [15] Sluijs EM, Kok GJ, van der Zee J. Correlates of exercise compliance in physical therapy. Phys Ther. 1993;73(11):771-82. [16] Martin LR, Williams SL, Haskard KB et al. The challenge of patient adherence. Ther Clin Risk Manag. 2005;1(3):189-99. [17] McVeigh JG, Lucas A, Hurley DAet al. Patients' perceptions of exercise therapy in the treatment of fibromyalgia syndrome: a survey. Musculoskeletal Care. 2003;1(2):98-107. [18] Creswell John W. Qualitative Inquiry and Research Design. Choosing among Five Approaches 3rd Ed. California: Sage Publications; 2013. [19] Ravitch SM, Riggan M. Reason and Rigor: How conceptual frameworks guide research. California: Sage Publications; 2012. [20] Wanda P. Confession, catharsis or cure? Rethinking the uses of reflexivity as methodological power in qualitative research. Int J Qual Stud Educ. 2003;16(2):175-196. [21] Denzin NK, Lincoln YS. Eds. Handbook of Qualitative Research 2nd Ed. California: Sage Publications; 2000. [22] Bazeley P. Qualitative Data Analysis: Practical Strategies. Research Support Pty Limited; Australia 2013. [23] Boyatzis RE. Transforming qualitative information: Thematic analysis and code development. London: SAGE;1998. [24] Asbring P. Chronic illness -- a disruption in life: identity-transformation among women with chronic fatigue syndrome and fibromyalgia. J Adv Nurs. 2001;34(3):312-9. [25] Raymond MC, Brown JB. Experience of fibromyalgia. Qualitative study. Can Fam Physician. 2000;46:1100-6. [26] Egeli NA, Crooks VA, Matheson D, Ursa M, Marchant E. Patients’ views: improving care for people with fibromyalgia. J Clin Nurs. 2008;17:362–369. [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):203-12. [28] Perrot S, Choy E, Petersel D, Ginovker A, Kramer E. Survey of physician experiences and perceptions about the diagnosis and treatment of fibromyalgia. BMC Health Serv Res. 2012 Oct 10;12:356. [29] Sim J, Madden S. Illness experience in fibromyalgia syndrome: a meta-synthesis of qualitative studies. Soc Sci Med. 2008;67(1):57-67. [30] Madden S, Sim J. Creating meaning in fibromyalgia syndrome. Soc Sci Med. 2006;63(11):2962-73. [31] Smith J A, Osborn M. Pain as an assault on the identity: An interpretative phenomenological analysis of the psychological impact of chronic benign low back pain. Psychology and Health. 2007;(22):517–534. [32] García-Martínez AM, De Paz JA, Márquez S. Effects of an exercise programme on self-esteem, self-concept and quality of life in women with fibromyalgia: a randomized controlled trial. Rheumatol Int. 2012;32(7):1869-76. [33] Arnold LM. Biology and therapy of fibromyalgia. New therapies in fibromyalgia. Arthritis Res Ther. 2006;8(4):212. [34] Busch AJ, Webber SC, Brachaniec M, et al. Exercise therapy for fibromyalgia. Curr Pain Headache Rep. 2011;15(5):358-367. [35] van Koulil S, van Lankveld W, Kraaimaat FW et al. Tailored cognitive-behavioural therapy and exercise training improves the physical fitness of patients with fibromyalgia. Ann Rheum Dis. 2011;70(12):2131-3. [36] Fitzcharles MA, Ste-Marie PA, Goldenberg DL et al. National Fibromyalgia Guideline Advisory Panel. 2012 Canadian Guidelines for the diagnosis and management of fibromyalgia syndrome: executive summary. Pain Res Manag. 2013;18(3):119-26. [37] Bernardy K, Klose P, Busch AJ et al. Cognitive behavioural therapies for fibromyalgia. Cochrane Database Syst Rev. 2013 Sep 10;(9):CD009796. [38] Michie S, van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci. 2011;6:42.

PY - 2018/1/16

Y1 - 2018/1/16

N2 - Background. 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. Objective. To explore the perceptions of fatigue and sleep dysfunction, and exercise in people with FMS. Methods. Three, 60-90 minute 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 analyzed for thematic content by three independent evaluators. Results. 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 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.Conclusion. 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.

AB - Background. 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. Objective. To explore the perceptions of fatigue and sleep dysfunction, and exercise in people with FMS. Methods. Three, 60-90 minute 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 analyzed for thematic content by three independent evaluators. Results. 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 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.Conclusion. 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.

KW - Fibromyalgia syndrome

KW - fatigue

KW - exercise

KW - sleep dysfunction

KW - physiotherapy

KW - focus group

U2 - 10.1007/s00296-018-3932-5

DO - 10.1007/s00296-018-3932-5

M3 - Article

VL - tbc

JO - Rheumatology International

T2 - Rheumatology International

JF - Rheumatology International

SN - 0172-8172

ER -