Living with Complex Regional Pain Syndrome: Understanding the Battle

  • Colleen Johnston-DevinEmail author
  • Florin Oprescu
  • Marion Gray


Living with complex regional pain syndrome (CRPS) can be described as similar to living with any other chronic pain condition, but with extra complications. Many health professionals have never heard of the condition and it is even less known in the general community. There is a diversity of presentations, no objective medical test for diagnosis, and it remains a diagnosis of exclusion based on clinical signs and symptoms. The pathophysiology is not fully understood and there is no dedicated treatment. There are only low-quality data supporting any treatment approach. Although there is no known cure it may go into remission. It may also reappear. The condition may occur spontaneously. Although the mechanisms are not well understood, it can spread to other parts of the body.

This chapter is based on a PhD study entitled “Battling Complex Regional Pain Syndrome: A Phenomenological Study.” The aim is to describe and discuss the meaning of living with CRPS. Using a heuristic hermeneutic phenomenological approach to investigate the phenomenon of living with CRPS, 17 patients and four health professionals from 6 different countries were interviewed. Textual material from internet blogs and a book containing patient stories were also included as data sources. As the first author has been diagnosed with the condition, she was interviewed as well. Serving multiple purposes, the interview transcript was used as data while allowing for explication of preunderstandings and assumptions. This is an important step in phenomenological research. Findings revealed that living with CRPS is a daily battle. Within the battle analogy, readers can recognise aspects of the themes and relate to them on some level. Within this battle, there are many smaller, but important, fights. These fights are the themes which are:
  • Dealing with an unknown enemy;

  • Building an armoury against a moving target;

  • Battles within the war;

  • Developing battle plans with allies; and

  • Warrior or prisoner of war.

The enemy is CRPS. Patients are the soldiers or warriors fighting it. From fighting for a diagnosis and coping with strange symptoms and disbelief, patients struggle with a condition that has no known cure and constantly changes. They battle against moving a painful body part too much and causing a flare or moving it too little and losing use of it. They face judgement from others, including health professionals, who do not understand CRPS. Support can be difficult to find. Patients must become resilient and must rise to the challenge with a warrior like attitude. Those who don’t may feel like a prisoner of war.

This chapter provides vignettes composed from patient interviews. The vignettes could facilitate a better understanding of lived experiences from the patients’ perspective.

Clinical Implications: Health professionals (HPs) have little understanding of the smaller battles faced by patients living with CRPS and patient goals do not necessarily correlate to those of the HP. It is anticipated that with better understanding of the lived experience, HPs will deliver more empathic patient focussed care. This could result in the clarification of realistic patient goals and needs as opposed to HP expectations of adherence and compliance to therapeutic interventions and could foster more collaborative and supportive self-management strategies for patients.


Complex regional pain syndrome Pain Qualitative research Phenomenology Interviews Lived experience Insider research Patient experience 


  1. 1.
    Bruehl S. Complex regional pain syndrome state of the art review. BMJ. 2015;350:h2730.CrossRefGoogle Scholar
  2. 2.
    Tahmoush AJ. Causalgia: redefinition as a clinical pain syndrome. Pain. 1981;10(2):187–97.PubMedCrossRefGoogle Scholar
  3. 3.
    Kocz R. History and epidemiology. In: Nader ND, Visnjevac O, editors. Complex regional pain syndrome: past, present and future. New York: Nova Science; 2015. p. 1–18.Google Scholar
  4. 4.
    Grieve S, Perez RSGM, Birklein F, Brunner F, Bruehl S, Harden RN, et al. Recommendations for a first core outcome measurement set for complex regional pain syndrome clinical studies (COMPACT). Pain. 2017;158(6):1083–90.PubMedPubMedCentralCrossRefGoogle Scholar
  5. 5.
    Harden RN, Maihofner SGMC, Abousaad JE, Vatine BJJ, Kirsling BA, Perez BR, et al. A prospective, multisite, international validation of the complex regional pain syndrome severity score. Pain. 2017;158(8):1430–6.PubMedCrossRefGoogle Scholar
  6. 6.
    Birklein F, Dimova V. Complex regional pain syndrome-up-to-date. Pain Rep. 2017;2(e624):1–8.Google Scholar
  7. 7.
    Russo M, Georgius P, Santarelli DM. A new hypothesis for the pathophysiology of complex regional pain syndrome. Med Hypotheses. 2018;119:41–53.PubMedCrossRefGoogle Scholar
  8. 8.
    Birklein F, Schlereth T. Complex regional pain syndrome – significant progress in understanding. Pain. 2015;156:S94–S103.PubMedCrossRefGoogle Scholar
  9. 9.
    Punt TD, Cooper L, Hey M, Johnson MI. Neglect-like symptoms in complex regional pain syndrome: learned nonuse by another name? Pain. 2013;154:200–3.PubMedCrossRefGoogle Scholar
  10. 10.
    Goebel A. Management of adult patients with long-standing complex regional pain syndrome. Pain Manag. 2013;3(2):137–46.PubMedCrossRefGoogle Scholar
  11. 11.
    van Rijn M, Marinus J, Putter H, Bosselaar SJ, Moseley GL, van Hilten J. Spreading of complex regional pain syndrome: not a random process. J Neural Transm. 2011;118(9):1301–9.PubMedPubMedCentralCrossRefGoogle Scholar
  12. 12.
    Goebel A. Complex regional pain syndrome in adults. Rheumatology. 2011;50:1739–50.PubMedCrossRefGoogle Scholar
  13. 13.
    van Velzen GAJ, Perez RSGM, van Gestel MA, Huygen FJ, van Kleef M, van Eijs F, et al. Health-related quality of life in 975 patients with complex regional pain syndrome type 1. Pain. 2014;155:629–34.PubMedCrossRefGoogle Scholar
  14. 14.
    Sale JE, Thielke S. Qualitative research is a fundamental scientific process. J Clin Epidemiol. 2018;102:129–33.PubMedCrossRefGoogle Scholar
  15. 15.
    van Wijngaarden E, Meide H, Dahlberg K. Researching health care as a meaningful practice: toward a nondualistic view on evidence for qualitative research. Qual Health Res. 2017;27(11):1738–47.PubMedCrossRefGoogle Scholar
  16. 16.
    van Manen M. Researching lived experience: human science for an action sensitive pedagogy. New York: State University of New York Press; 1990.Google Scholar
  17. 17.
    Crotty M. Phenomenology and nursing research. South Melbourne, VIC: Churchill Livingstone; 1996. 202 p.Google Scholar
  18. 18.
    Florczak K. Adding to the truth of the matter: the case for qualitative research. Nurs Sci Q. 2017;30(4):296–9.PubMedCrossRefGoogle Scholar
  19. 19.
    Gelling L. Qualitative research. Nurs Stand. 2015;29(30):43–7.PubMedCrossRefGoogle Scholar
  20. 20.
    Rodham K, Gavin J, Coulson N, Watts L. Co-creation of information leaflets to meet the support needs of people living with complex regional pain syndrome (CRPS) through innovative. Inform Health Soc Care. 2016;41(3):325–39.PubMedGoogle Scholar
  21. 21.
    Grieve S, Adams J, McCabe C. ‘What I really needed was the truth’. Exploring the information needs of people with complex regional pain syndrome. Musculoskeletal Care. 2016;14:15–25.PubMedCrossRefGoogle Scholar
  22. 22.
    Johnston CM, Oprescu FI, Gray M. Building the evidence for CRPS research from a lived experience perspective. Scand J Pain. 2015;9:30–7.PubMedCrossRefGoogle Scholar
  23. 23.
    Butler S. Qualitative research in complex regional pain syndrome (CRPS). Scand J Pain. 2015;9:62–3.PubMedCrossRefGoogle Scholar
  24. 24.
    Harris PS, Bedini LA, Etnier JL. An examination of leisure and quality of life in individuals with complex regional pain syndrome (CRPS). Annual in Therapeutic Recreation. 2016;23:1–11.Google Scholar
  25. 25.
    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
  26. 26.
    Patton MQ. Qualitative research and evaluative methods. 4th ed. Thousand Oaks: SAGE; 2015. 832 p.Google Scholar
  27. 27.
    Rodham K, McCabe CS, Blake D. Seeking support: an intrepretative phenomenological analysis of an internet message board for people with complex regional pain syndrome. Psychol Health. 2009;24(6):619–34.PubMedCrossRefGoogle Scholar
  28. 28.
    Rodham K, Boxell E, McCabe C, Cockburn M, Waller E. Transitioning from a hospital rehabilitation programme to home: exploring the experiences of people with complex regional pain syndrome. Psychol Health. 2012;27(10):1150–65.PubMedCrossRefGoogle Scholar
  29. 29.
    Converse M. Philosophy of phenomenology: how understanding aids research. Nurse Res. 2012;20(1):28–32.PubMedCrossRefGoogle Scholar
  30. 30.
    Dowling M, Cooney A. Research approaches related to phenomenology: negotiating a complex landscape. Nurse Res. 2012;20(2):21–7.PubMedCrossRefGoogle Scholar
  31. 31.
    Douglass B, Moustakas C. Heuristic inquiry: the internal search to know. J Humanist Psychol. 1985;25(3):39–55.CrossRefGoogle Scholar
  32. 32.
    Moustakas C. Heuristic research: design, methodology, and applications. Thousand Oaks, CA; 2011. 130 p.Google Scholar
  33. 33.
    Johnston CM, Wallis M, Oprescu FI, Gray M. Methodological considerations related to nurse researchers using their own experience of a phenomenon within phenomenology. J Adv Nurs. 2017;73(3):574–84.PubMedCrossRefGoogle Scholar
  34. 34.
    Harden RN, Oaklander AL, Burton AW, Perez RSGM, Richardson K, Swan M, et al. Complex regional pain syndrome: practical diagnostic and treatment guidelines. Pain Med. 2013;14:180–229.PubMedCrossRefGoogle Scholar
  35. 35.
    Meugnot A, Jackson PL. The contribution of new technological breakthroughs to the neuroscientific research of pain communication. In: van Rysewyk S, editor. Meanings of pain. Cham: Springer; 2016. p. 87–106.CrossRefGoogle Scholar
  36. 36.
    Rodham K. Learning to cope with CRPS/RSD: putting life first and pain second. London: Singing Dragon; 2015. 144 p.Google Scholar
  37. 37.
    Burning Nights CRPS. Our founder [Internet]. 2019 [cited 13/04/2019]. Available from
  38. 38.
    Princess. The tower [Internet]. 2019 [cited 13/04/2019]. Available from
  39. 39.
    Kelly. About me [Internet]. 2019 [cited 13/04/2019]. Available from
  40. 40.
    Genevieve. About me [Internet]. 2019 [cited 13/04/2019]. Available from
  41. 41.
    Jessica [Internet]. 2019 [cited 13/04/2019]. Available from
  42. 42.
    van Manen M. Phenomenology online: a resource for phenomenological inquiry [Internet]. 2011 [cited 13/04/2019]. Available from
  43. 43.
    Casale R, Atzeni F, Masala IF, Sarzi-Puttini P. The words of pain in complex regional pain syndrome. Best Pract Res Clin Rheumatol. 2015;29:71–6.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Colleen Johnston-Devin
    • 1
    Email author
  • Florin Oprescu
    • 1
  • Marion Gray
    • 1
  1. 1.School of Health and Sport SciencesUniversity of the Sunshine CoastSippy DownsAustralia

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