Fibromyalgia lacks a coherent illness and treatment model, which includes a set of conceptual ideas shaping individuals’ perceptions and understandings of pain, its causing and maintaining factors, and management strategies. Developing personalized illness models that can guide treatment plans and alleviate feelings of uncertainty is of crucial importance. This study investigates how individuals with fibromyalgia develop a personal illness and treatment model while navigating the current healthcare system and explore their experiences during this process. Semi-structured interviews were conducted with 15 cis women with fibromyalgia, which were analyzed using reflexive thematic analysis. The analysis produced two themes, each including two subthemes. The first theme encompassed the difficulty of developing a comprehensive illness model due to the biomedical perspective of the healthcare system; the second theme described the importance of participants (re)gaining ownership and agency over their pain management, by constructing their own illness and treatment model. Most women in this study got stuck in the biomedical healthcare web not being provided with a clear illness and treatment model. Consequently, most women gained ownership of this process by developing their personal illness and treatment model (self-empowerment). Conversely, a few women felt powerless and paralyzed. This study underscores the importance of promoting patient empowerment in chronic pain management. Agency is undervalued in the treatment of fibromyalgia and warrants more thorough examination. Increasing knowledge about agency could enhance treatment effectiveness.
AloushV.NivD.AblinJ. N.YaishI.ElkayamO.ElkanaO. (2021). Good pain, bad pain: Illness perception and physician attitudes towards rheumatoid arthritis and fibromyalgia patients. Clinical & Experimental Rheumatology, 39 Suppl 130(3), 54–60. https://doi.org/10.55563/clinexprheumatol/u1nbxz
3.
AntunesM. D.CoutoL. A.Gomes BertoliniS. M. M.da Rocha LouresF. C. N.Basso SchmittA. C.MarquesA. P. (2021). Effectiveness of interdisciplinary health education programs for individuals with fibromyalgia: A systematic review. Journal of Education and Health Promotion, 10(1), Article 64. https://doi.org/10.4103/jehp.jehp_592_20
4.
ArmentorJ. L. (2017). Living with a contested, stigmatized illness: Experiences of managing relationships among women with fibromyalgia. Qualitative Health Research, 27(4), 462–473. https://doi.org/10.1177/1049732315620160
5.
BakkenA. K.MengshoelA. M.SynnesO.StrandE. B. (2023). Acquiring a new understanding of illness and agency: A narrative study of recovering from chronic fatigue syndrome. International Journal of Qualitative Studies on Health and Well-Being, 18(1), Article 2223420. https://doi.org/10.1080/17482631.2023.2223420
6.
BillingK.NewlandH.SelvaD. (2007). Improving patient satisfaction through information provision. Clinical & Experimental Ophthalmology, 35(5), 439–447. https://doi.org/10.1111/j.1442-9071.2007.01514.x
7.
BoernerK.Khalatbari-SoltaniS.BlythF. (2024). FACT SHEET: Intersectionality and pain across the life course. IASP.
8.
BoultonT. (2019). Nothing and everything: Fibromyalgia as a diagnosis of exclusion and inclusion. Qualitative Health Research, 29(6), 809–819. https://doi.org/10.1177/1049732318804509
BraunV.ClarkeV. (2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis?Qualitative Research in Psychology, 18(3), 328–352. https://doi.org/10.1080/14780887.2020.1769238
11.
Briones-VozmedianoE.ÖhmanA.GoicoleaI.Vives-CasesC. (2018). “The complaining women”: Health professionals’ perceptions on patients with fibromyalgia in Spain. Disability & Rehabilitation, 40(14), 1679–1685. https://doi.org/10.1080/09638288.2017.1306759
12.
Briones-VozmedianoE.Vives-CasesC.Ronda-PérezE.Gil-GonzálezD. (2013). Patients’ and professionals’ views on managing fibromyalgia. Pain Research and Management, 18(1), 19–24. https://doi.org/10.1155/2013/742510
13.
ByrneA.JonesK.BackhouseM.RoseF.MoattE.Van Der Feltz-CornelisC. (2023). Patient and primary care practitioners’ perspectives on consultations for fibromyalgia: A qualitative evidence synthesis. Primary Health Care Research & Development, 24, Article e58. https://doi.org/10.1017/S1463423623000506
14.
ByrneD. (2022). A worked example of Braun and Clarke’s approach to reflexive thematic analysis. Quality & Quantity, 56(3), 1391–1412. https://doi.org/10.1007/s11135-021-01182-y
15.
ChenA. T.SwaminathanA. (2020). Factors in the building of effective patient–provider relationships in the context of fibromyalgia. Pain Medicine, 21(1), 138–149. https://doi.org/10.1093/pm/pnz054
16.
CostaA.SousaC. J.SeabraP. R. C.VirgolinoA.SantosO.LopesJ.HenriquesA.NogueiraP.AlarcãoV. (2021). Effectiveness of social prescribing programs in the primary health-care context: A systematic literature review. Sustainability, 13(5), Article 2731. https://doi.org/10.3390/su13052731
17.
CostaN.ButlerP.DillonM.MescoutoK.OlsonR.ForbesR.SetchellJ. (2023). “I felt uncertain about my whole future”—A qualitative investigation of people’s experiences of navigating uncertainty when seeking care for their low back pain. Pain, 164(12), 2749–2758. https://doi.org/10.1097/j.pain.0000000000002975
18.
DahmM. R.CattanachW.WilliamsM.BassealJ. M.GleasonK.CrockC. (2023). Communication of diagnostic uncertainty in primary care and its impact on patient experience: An integrative systematic review. Journal of General Internal Medicine, 38(3), 738–754. https://doi.org/10.1007/s11606-022-07768-y
19.
DeciE. L.RyanR. M. (1985). The general Causality Orientations Scale: Self-determination in personality. Journal of Research in Personality, 19(2), 109–134. https://doi.org/10.1016/0092-6566(85)90023-6
20.
DeciE. L.RyanR. M. (2000). The “what” and “why” of goal pursuits: Human needs and the self-determination of behavior. Psychological Inquiry, 11(4), 227–268. https://doi.org/10.1207/S15327965PLI1104_01
21.
De RuddereL.GoubertL.StevensM.de C WilliamsA. C.CrombezG. (2013). Discounting pain in the absence of medical evidence is explained by negative evaluation of the patient. Pain, 154(5), 669–676. https://doi.org/10.1016/j.pain.2012.12.018
22.
DoeblS.MacfarlaneG. J.HollickR. J. (2020). “No one wants to look after the fibro patient”. Understanding models, and patient perspectives, of care for fibromyalgia: Reviews of current evidence. Pain, 161(8), 1716–1725. https://doi.org/10.1097/j.pain.0000000000001870
23.
Durif-BruckertC.RouxP.RoussetH. (2015). Medication and the patient–doctor relationship: A qualitative study with patients suffering from fibromyalgia. Health Expectations, 18(6), 2584–2594. https://doi.org/10.1111/hex.12230
Garcia-CampayoJ.MagdalenaJ.MagallónR.Fernández-GarcíaE.SalasM.AndrésE. (2008). A meta-analysis of the efficacy of fibromyalgia treatment according to level of care. Arthritis Research & Therapy, 10(4), Article R81. https://doi.org/10.1186/ar2455
26.
GatchelR. J.PengY. B.PetersM. L.FuchsP. N.TurkD. C. (2007). The biopsychosocial approach to chronic pain: Scientific advances and future directions. Psychological Bulletin, 133(4), 581–624. https://doi.org/10.1037/0033-2909.133.4.581
27.
GergenK. (1999). An invitation to social constructionism. Sage.
28.
Ghavidel-ParsaB.Amir MaafiA.AarabiY.HaghdoostA.KhojamliM.MontazeriA.SanaeiO.BidariA. (2015). Correlation of invalidation with symptom severity and health status in fibromyalgia. Rheumatology, 54(3), 482–486. https://doi.org/10.1093/rheumatology/keu355
29.
HamamaL.ItzhakiM. (2023). Coping with fibromyalgia - A focus group study. International Journal of Qualitative Studies on Health and Well-Being, 18(1), Article 2204622. https://doi.org/10.1080/17482631.2023.2204622
30.
HasselrothR.BjörlingG.FaagC.BoseC. N. (2021). “Can someone as young as you really feel that much pain?” – A survey on how people with fibromyalgia experience healthcare in Sweden. Sage Open Nursing, 7(2). https://doi.org/10.1177/23779608211026145
31.
HayesS. M.MyhalG. C.ThorntonJ. F.CamerlainM.JamisonC.CytrynK. N.MurrayS. (2010). Fibromyalgia and the therapeutic relationship: Where uncertainty meets attitude. Pain Research and Management, 15(6), 385–391. https://doi.org/10.1155/2010/354868
32.
HelgesonV. S.JakubiakB.Van VleetM.ZajdelM. (2018). Communal coping and adjustment to chronic illness: Theory update and evidence. Personality and Social Psychology Review, 22(2), 170–195. https://doi.org/10.1177/1088868317735767
HunterJ.FrankenM.BalmerD. (2015). Constructions of patient agency in healthcare settings: Textual and patient perspectives. Discourse, Context & Media, 7(2), 37–44. https://doi.org/10.1016/j.dcm.2015.01.002
35.
KallioH.PietiläA. M.JohnsonM.KangasniemiM. (2016). Systematic methodological review: Developing a framework for a qualitative semi-structured interview guide. Journal of Advanced Nursing, 72(12), 2954–2965. https://doi.org/10.1111/jan.13031
36.
KumbhareD.AhmedS.SanderT.Grosman-RimonL.SrbelyJ. (2018). A survey of physicians’ knowledge and adherence to the diagnostic criteria for fibromyalgia. Pain Medicine, 19(6), 1254–1264. https://doi.org/10.1093/pm/pnx271
37.
LangfordD. J.TaubenD. J.SturgeonJ. A.GodfreyD. S.SullivanM. D.DoorenbosA. Z. (2018). Treat the patient, not the pain: Using a multidimensional assessment tool to facilitate patient-centered chronic pain care. Journal of General Internal Medicine, 33(8), 1235–1238. https://doi.org/10.1007/s11606-018-4456-0
38.
LeventhalH.PhillipsL. A.BurnsE. (2016). The Common-Sense Model of Self-Regulation (CSM): a dynamic framework for understanding illness self-management. Journal of Behavioral Medicine, 39(6), 935–946. https://doi.org/10.1007/s10865-016-9782-2
39.
MengshoelA. M.SimJ.AhlsenB.MaddenS. (2018). Diagnostic experience of patients with fibromyalgia – A meta-ethnography. Chronic Illness, 14(3), 194–211. https://doi.org/10.1177/1742395317718035
40.
MescoutoK.OlsonR. E.HodgesP. W.SetchellJ. (2022). A critical review of the biopsychosocial model of low back pain care: Time for a new approach?Disability & Rehabilitation, 44(13), 3270–3284. https://doi.org/10.1080/09638288.2020.1851783
41.
MorganS. G.WeymannD.PrattB.SmolinaK.GladstoneE. J.RaymondC.MintzesB. (2016). Sex differences in the risk of receiving potentially inappropriate prescriptions among older adults. Age and Ageing, 45(4), 535–542. https://doi.org/10.1093/ageing/afw074
42.
NevilleA.JordanA.BeveridgeJ. K.PincusT.NoelM. (2019). Diagnostic uncertainty in youth with chronic pain and their parents. The Journal of Pain, 20(9), 1080–1090. https://doi.org/10.1016/j.jpain.2019.03.004
43.
NishikawaraR. K.SchultzI. Z.ButterfieldL. D.MurrayJ. W. (2023). “You have to believe the patient”: What do people with fibromyalgia find helpful (and hindering) when accessing health care?Canadian Journal of Pain, 7(2), Article 2176745. https://doi.org/10.1080/24740527.2023.2176745
44.
PainterJ. T.CroffordL. J. (2013). Chronic opioid use in fibromyalgia syndrome: A clinical review. Journal of Clinical Rheumatology, 19(2), 72–77. https://doi.org/10.1097/RHU.0b013e3182863447
45.
PaschaliM.LazaridouA.PaschalisT.NapadowV.EdwardsR. R. (2021). Modifiable psychological factors affecting functioning in fibromyalgia. Journal of Clinical Medicine, 10(4), Article 803. https://doi.org/10.3390/jcm10040803
46.
PilkingtonK.LoefM.PolleyM. (2017). Searching for real-world effectiveness of health care innovations: Scoping study of social prescribing for diabetes. Journal of Medical Internet Research, 19(2), Article e20. https://doi.org/10.2196/jmir.6431
47.
QuintnerJ. L.CohenM. L.BuchananD.KatzJ. D.WilliamsonO. D. (2008). Pain medicine and its models: Helping or hindering?Pain Medicine, 9(7), 824–834. https://doi.org/10.1111/j.1526-4637.2007.00391.x
48.
RåheimM.HålandW. (2006). Lived experience of chronic pain and fibromyalgia: Women’s stories from daily life. Qualitative Health Research, 16(6), 741–761. https://doi.org/10.1177/1049732306288521
49.
RaymondM. R.BrownJ. B. (2000). Experience of fibromyalgia. Canadian Family Physician, 46(5), 1100–1106.
50.
RichardsonA.AllenJ. A.XiaoH.ValloneD. (2012). Effects of race/ethnicity and socioeconomic status on health information-seeking, confidence, and trust. Journal of Health Care for the Poor and Underserved, 23(4), 1477–1493. https://doi.org/10.1353/hpu.2012.0181
51.
SchäferG.PrkachinK. M.KaseweterK. A.WilliamsA. C. D. C. (2016). Health care providers’ judgments in chronic pain: The influence of gender and trustworthiness. Pain, 157(8), 1618–1625. https://doi.org/10.1097/j.pain.0000000000000536
52.
SimJ.MaddenS. (2008). Illness experience in fibromyalgia syndrome: A metasynthesis of qualitative studies. Social Science & Medicine, 67(1), 57–67. https://doi.org/10.1016/j.socscimed.2008.03.003
53.
StinesenB. B.SneijderP.KökeA. J. A.SmeetsR. J. E. M. (2019). Improving patient–practitioner interaction in chronic pain rehabilitation: The merits of a discursive psychological approach. Scandinavian Journal of Pain, 19(4), 843–853. https://doi.org/10.1515/sjpain-2019-0034
54.
Thunander SundbomL.HedborgK. (2019). Association between prescribed antidepressants and other prescribed drugs differ by gender: A nationwide register-based study in Sweden. Nordic Journal of Psychiatry, 73(1), 73–79. https://doi.org/10.1080/08039488.2018.1536766
55.
TurkD. C.AdamsL. M. (2016). Using a biopsychosocial perspective in the treatment of fibromyalgia patients. Pain Management, 6(4), 357–369. https://doi.org/10.2217/pmt-2016-0003
56.
VerhaegheM.BrackeP. (2012). Associative stigma among mental health professionals: Implications for professional and service user well-being. Journal of Health and Social Behavior, 53(1), 17–32. https://doi.org/10.1177/0022146512439453
WolfeF.HawleyD. J. (1998). Psychosocial factors and the fibromyalgia syndrome. Zeitschrift für Rheumatologie, 57 Suppl 2, 88–91. https://doi.org/10.1007/s003930050243
59.
WuytackF.MillerP. (2011). The lived experience of fibromyalgia in female patients, a phenomenological study. Chiropractic & Manual Therapies, 19(1), Article 22. https://doi.org/10.1186/2045-709X-19-22
