“Let Me Be a Meaningful Part in the Outside World”: A Caring Perspective on Long-Term Rheumatic Pain and Fear-Avoidance Beliefs in Relation to Body Awareness and Physical Activities

  • Helena LööfEmail author


Pain is a key outcome measure in persons with rheumatoid arthritis (RA) or psoriatic arthritis (PsA). Improving physical and social functioning is an important treatment goal in patients with RA or PsA. High self-rated pain is linked to elevated fear-avoidance beliefs for engaging in physical activity. Some research has demonstrated that when people’s attitudes and beliefs towards pain are negative, they often have elevated levels of body awareness. Many persons with moderate to severe self-rated rheumatic pain report a desire to be part of a wider social and active context, which is perceived to be a source of positive energy and meaning in life. Patients have suggested that physical activities can mediate pain reduction and a distraction from it. During periods of solitude or episodes of sedentary behaviour, inner bodily attention in some patients with RA or PsA is often directed towards the “problematic body” and self. The perceived “untrustworthy body” has to deal with many bodily memories and emotions. Contemplating the past (the former perceived “healthy body”) may interrupt a person’s ability to live life and trying to determine a future life with an unreliable body presents concerns for future consequences. This behavioural pattern can lead to maintained negative fear-avoidant behaviour and a more inactive life-style, resulting in new negative existential meanings of loss and helplessness. Despite suffering from rheumatic pain in this way, these patients point out their desire to participate in a wider social and active context without being subject to any form of discrimination, which is perceived as the main and new source of positive energy and meaning in life.

Clinical Implications: There is a common meaning of bodily intrusion and threat in persons with long-term rheumatic pain. Registered nurses can play a crucial role by helping their patients identify new understandings and cognitive meanings in relation to long-term rheumatic pain. Living a meaningful life in the active outside world is paramount for improving and maintaining general health and wellbeing in persons with RA and PsA. A sedentary lifestyle together with long periods of solitude can lead to additional health problems and negative meanings.


Body awareness Fear-avoidance beliefs Long-term rheumatic pain Meanings of pain Physical activity 


  1. 1.
    Kilic L, Erden A, Bingham CO, Gossec L, Kalyoncu U. The reporting of patient-reported outcomes in studies of patients with rheumatoid arthritis: a systematic review of 250 articles. J Rheumatol. 2016;43(7):1300–5.PubMedCrossRefGoogle Scholar
  2. 2.
    Riise T, Jacobsen BK, Gran JT. Incidence and prevalence of rheumatoid arthritis in the county of Troms, northern Norway. J Rheumatol. 2000;27:1386–9.PubMedGoogle Scholar
  3. 3.
    Scott DL, Wolfe F, Huizinga TW. Rheumatoid arthritis. Lancet. 2010;376:1094–108.CrossRefGoogle Scholar
  4. 4.
    Myers WA, Gottlieb AB, Mease P. Psoriasis and psoriatic arthritis: clinical features and disease mechanisms. Clin Dermatol. 2006;24(5):438–47.PubMedCrossRefGoogle Scholar
  5. 5.
    Gladman DD, Antoni C, Mease P, Clegg DO, Nash P. Psoriatic arthritis: epidemiology, clinical features, course, and outcome. Ann Rheum Dis. 2005;64(Suppl 2):ii14–7.PubMedPubMedCentralGoogle Scholar
  6. 6.
    Mease PJ, Armstrong AW. Managing patients with psoriatic disease: the diagnosis and pharmacologic treatment of psoriatic arthritis in patients with psoriasis. Drugs. 2014;74:423–41.PubMedPubMedCentralCrossRefGoogle Scholar
  7. 7.
    Ogdie A, Yu Y, Haynes K, Love TJ, Mahila S, Jiang YH, et al. Risk of major cardiovascular events in patients with psoriatic arthritis, psoriasis and rheumatoid arthritis: a population-based cohort study. Ann Rheum Dis. 2015;74(2):326–32.PubMedCrossRefGoogle Scholar
  8. 8.
    Finzel S, Englbrecht M, Engelke K, Stach C, Schett G. A comparative study of periarticular bone lesions in rheumatoid arthritis and psoriatic arthritis. Ann Rheum Dis. 2011;70(1):122–7.PubMedCrossRefGoogle Scholar
  9. 9.
    Walsh DA, McWilliam DF. Mechanisms, impact and management of pain in rheumatoid arthritis. Nat Rev Rheumatol. 2014;10(10):581–92.PubMedPubMedCentralCrossRefGoogle Scholar
  10. 10.
    McCormack B, McCance T. Person-centred nursing: theory and practice. Chichester, West Sussex: Blackwell; 2010. 208 p.CrossRefGoogle Scholar
  11. 11.
    van Eijk-Hustings Y, van Tubergen A, Boström C, Braychenko E, Buss B, Felix J. EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis. Ann Rheum Dis. 2012;71:13–9.PubMedCrossRefGoogle Scholar
  12. 12.
    International Association for the Study of Pain (IASP). Taxonomy [Internet]. 2017 [cited 13/04/2019]. Available from
  13. 13.
    Head H. Studies in neurology. London: Oxford University Press; 1920. 352 p.Google Scholar
  14. 14.
    Landau W, Bishop GH. Pain from dermal, periosteal, and fascial endings and from inflammation: electrophysiological study employing differential nerve blocks. AMA Arch Neurol Psychiatry. 1953;69:490–504.PubMedCrossRefGoogle Scholar
  15. 15.
    Price DD. Characteristics of second pain and flexion reflexes indicative of prolonged central summation. Exp Neurol. 1972;37:371–87.PubMedCrossRefGoogle Scholar
  16. 16.
    Price DD, Hu JW, Dubner R, Gracely RH. Peripheral suppression of first pain and central summation of second pain evoked by noxious heat pulses. Pain. 1977;3:57–68.PubMedCrossRefGoogle Scholar
  17. 17.
    Price DD, Barrell JJ. Inner experiences and neuroscience. Merging the two perspectives. Cambridge: MIT Press; 2012. 360 p.Google Scholar
  18. 18.
    Price DD, Harkins SW, Baker C. Sensory affective relationships among different types of clinical and experimental pain. Pain. 1987;28:291–9.CrossRefGoogle Scholar
  19. 19.
    Harkins SW, Price DD, Braith J. Effects of extraversion and neuroticism on experimental pain, clinical pain, and illness behavior. Pain. 1989;36:209–18.PubMedCrossRefGoogle Scholar
  20. 20.
    Staud R, Vierck CJ, Cannon RL, Mauderli AP, Price DD. Abnormal sensitization and temporal summation of second pain (wind-up) in patients with fibromyalgia syndrome. Pain. 2001;91:165–75.PubMedCrossRefGoogle Scholar
  21. 21.
    Staud R, Craggs JG, Perlstein WM, Robinson ME, Price DD. Brain activity associated with slow temporal summation of C-fiber evoked pain in fibromyalgia patients and healthy controls. Eur J Pain. 2008;12(8):1078–89.PubMedPubMedCentralCrossRefGoogle Scholar
  22. 22.
    Hansson KS, Fridlund B, Brunt D, Hansson B, Rask M. The meaning of the experiences of persons with chronic pain in their encounters with the health service. Scand J Caring Sci. 2011;25(3):444–50.PubMedCrossRefGoogle Scholar
  23. 23.
    Cassell EJ. The nature of suffering. London: Oxford University Press; 2002. 336 p.Google Scholar
  24. 24.
    Cohen M, Quinter J, van Rysewyk S. Reconsidering the international association for the study of pain definition of pain. Pain Rep. 2018;3(2):e634.PubMedPubMedCentralCrossRefGoogle Scholar
  25. 25.
    Östlund G, Björk M, Thyberg I, Thyberg M, Valtersson E, Stenström B, Sverker A. Emotions related to participation restrictions as experienced by patients with early rheumatoid arthritis: a qualitative interview study (the Swedish TIRA project). Clin Rheumatol. 2014;33(10):1403–13.PubMedCrossRefGoogle Scholar
  26. 26.
    Lööf H, Johansson UB. A phenomenological study of body awareness and fear-avoidance beliefs towards physical activity in persons experiencing moderate to high rheumatic pain. J Clin Nurs. 2019;28(1–2):321–9.PubMedCrossRefGoogle Scholar
  27. 27.
    Lööf H, Johansson UB, Welin Henriksson E, Lindblad S, Bullington J. Body awareness in persons diagnosed with rheumatoid arthritis. Int J Qual Stud Health Well Being. 2014;9:24670.PubMedCrossRefGoogle Scholar
  28. 28.
    Armentor JL. Living with a contested, stigmatized illness: experiences of managing relationships among women with fibromyalgia. Qual Health Res. 2017;27(4):462–73.PubMedCrossRefGoogle Scholar
  29. 29.
    Wilde MH. Embodied knowledge in chronic illness and injury. Nurs Inq. 2003;10(3):170–6.PubMedCrossRefGoogle Scholar
  30. 30.
    Gyllensten AL, Skär L, Miller M, Gard G. Embodied identity-a deeper understanding of body awareness. Physiother Theory Pract. 2010;26(7):439–46.PubMedCrossRefGoogle Scholar
  31. 31.
    Dragesund T, Råheim M. Norwegian psychomotor physiotherapy and patients with chronic pain: patients’ perspective on body awareness. Physiother Theory Pract. 2008;24(4):243–54.PubMedCrossRefGoogle Scholar
  32. 32.
    Methods of treating chronic pain. Stockholm: Swedish Council on Health Technology Assessment in Health Care (SBU); SBU report no 177/n.1&2 (in Swedish). 2006.Google Scholar
  33. 33.
    Sullvian MD. How chronic pain treatment falls short of patient-centered care [Internet]. 2017 [cited 13/04/2019]. Available from
  34. 34.
    Ballantyne JC, Sullivan MD. Intensity of chronic pain—the wrong metric? N Engl J Med. 2015;373(22):2098–9.PubMedPubMedCentralCrossRefGoogle Scholar
  35. 35.
    Price DD, Harkinst SW. The affective-motivational dimension of pain. A two-stage model. APS J. 1992;1(4):229–39.CrossRefGoogle Scholar
  36. 36.
    Ramjeet J, Smith J Adams M. The relationship between coping and psychological and physical adjustment in rheumatoid arthritis: a literature review. J Clin Nurs. 2008;17(11c):418–28.PubMedCrossRefGoogle Scholar
  37. 37.
    Fifield J, Tennen H, Reisine S, McQuillan J. Depression and the long-term risk of pain, fatigue, and disability in patients with rheumatoid arthritis. Arthritis Rheum. 1998;41(10):1851–7.PubMedCrossRefGoogle Scholar
  38. 38.
    Shih M, Hootman JM, Strine TW, Chapman DP, Brady TJJ. Serious psychological distress in U.S. adults with arthritis. J Gen Intern Med. 2006;21(11):1160–6.PubMedPubMedCentralCrossRefGoogle Scholar
  39. 39.
    Edwards RR, Cahalan C, Mensing G, Smith M, Haythornthwaite JA. Pain, catastrophizing, and depression in the rheumatic diseases. Nat Rev Rheumatol. 2011;7(4):216–24.PubMedCrossRefGoogle Scholar
  40. 40.
    Stone AA, Broderick JE, Porter LS, Kaell AT. The experience of rheumatoid arthritis pain and fatigue: examining momentary reports and correlates over one week. Arthritis Rheum. 1997;10(3):185–93.CrossRefGoogle Scholar
  41. 41.
    Pollard LC, Choy EH, Gonzalez J, Khoshaba B, Scott DL. Fatigue in rheumatoid arthritis reflects pain, not disease activity. Rheumatology. 2006;45(7):885–9.PubMedCrossRefGoogle Scholar
  42. 42.
    Lee S, Mendelsohn A, Sarnes E. The burden of psoriatic arthritis. A literature review from a global health system perspective. PT. 2010;35(12):680–9.Google Scholar
  43. 43.
    Lööf H. Pain, fatigue and fear-avoidance beliefs in relation to physical activity and body awareness in persons diagnosed with rheumatoid arthritis. Stockholm, Doktorsavhandling: Thesis. Karolinska Institutet; 2015. p. 1–82.Google Scholar
  44. 44.
    Demmelmaier I, Bergman P, Nordgren B, Jensen I, Opava CH. Current and maintained health-enhancing physical activity in rheumatoid arthritis: a cross-sectional study. Arthritis Care Res. 2013;65(7):1166–76.CrossRefGoogle Scholar
  45. 45.
    Lööf H, Demmelmaier I, Welin Henriksson E, Lindblad S, Nordgren B, Opava CH, et al. Fear-avoidance beliefs about physical activity in adults with rheumatoid arthritis. Scand J Rheumatol. 2015;44(2):93–9.PubMedCrossRefGoogle Scholar
  46. 46.
    Afrell M, Biguet G, Rudebeck CE. Living with a body in pain–between acceptance and denial. Scand J Caring Sci. 2007;21:291–6.PubMedCrossRefGoogle Scholar
  47. 47.
    Osborn M, Smith JA. The personal experience of chronic benign lower back pain: an interpretative phenomenological analysis. Br J Health Psychol. 1998;3:65–83.CrossRefGoogle Scholar
  48. 48.
    Tsay A, Allen TJ, Proske U, Giummarra MJ. Sensing the body in chronic pain: a review of psychophysical studies implicating altered body representation. Biobehav Rev. 2015;52:221–32.CrossRefGoogle Scholar
  49. 49.
    Biguet G, Nilsson-Wikmar L, Bullington J, Flink B, Löfgren M. Meanings of ‘acceptance’ for patients with long-term pain when starting rehabilitation. Disabil Rehabil. 2016;38(13):1257–67.PubMedCrossRefGoogle Scholar
  50. 50.
    Hasenbring M, Verbunt JA. Fear-avoidance and endurance-related responses to pain: new models of behavior and their consequences for clinical practice. Clin J Pain. 2010;26(9):747–53.PubMedCrossRefGoogle Scholar
  51. 51.
    Evers AWM, Kraaimaat FW, Geenen R, Jacobs JWG, Bijlsma JWJ. Pain coping and social support as predictors of long-term functional disability and pain in early rheumatoid arthritis. Behav Res Ther. 2003;41(11):1295–310.PubMedCrossRefGoogle Scholar
  52. 52.
    Ahlstrand I, Björk M, Thyberg I, Börsbo B, Falkmer T. Pain and daily activities in rheumatoid arthritis. Disabil Rehabil. 2012;34(15):1245–53.PubMedCrossRefGoogle Scholar
  53. 53.
    International Council of Nurses (ICN). Svensk sjuksköterskeförening (SSF). ICN: Etiska Kod för Sjuksköterskor. [The ICN Code of Ethics for Nurses.] Stockholm: Svensk sjuksköterskeförening. 2018.Google Scholar
  54. 54.
    Kamper SJ, Apeldoorn AT, Chiarotto A, Smeets RJ, Ostelo RW, Guzman J, et al. Multidisciplinary biopsychosocial rehabilitation for chronic low back pain. Cochrane database of systematic reviews. BMJ. 2015;18:350.Google Scholar
  55. 55.
    Brodin N, Swärdh E. In: Physical activity in the prevention of treatment and disease, FYSS; Rheumatoid arthritis. 2017 [cited 13/04/2019]. Available from
  56. 56.
    Nygren Zotterman AN, Skär L, Olsson M, Söderberg S. Being in togetherness: meanings of encounters within primary healthcare setting for patients living with long-term illness. J Clin Nurs. 2016;25(19–20):2854–62.PubMedCrossRefGoogle Scholar
  57. 57.
    Spiegelberg H. The phenomenological movement: a historical introduction. The Hague, The Netherlands. In: Kim H, Kollak I, editors. Nursing theories: conceptual and philosophical foundations. New York: Springer; 2006. 309 p.Google Scholar
  58. 58.
    van Rysewyk S. A call for study on the meanings of pain. In: van Rysewyk S, editor. Meanings of pain. Cham: Springer; 2016. p. 1–22.CrossRefGoogle Scholar
  59. 59.
    Kowalski E, Chung KC. Impairment and disability: Renoir’s adaptive coping strategies against rheumatoid arthritis. Hand (NY). 2012;7(4):357–63.CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.Division of Caring Sciences, Mälardalens University (MDH)School of Health, Care and Social WelfareVästeråsSweden
  2. 2.Sophiahemmet UniversityStockholmSweden

Personalised recommendations