Original Reports Patients Describe their Lived Experiences of Battling to Live with Complex Regional Pain Syndrome Colleen Johnston-Devin,*, y Florin Oprescu,* Marion Gray,*, z and Marianne Wallis x,{ * School of Health and Sport Science, University of the Sunshine Coast, Sippy Downs, QLD, Australia, y School of Nursing, Midwifery and Social Sciences, CQUniversity Australia, Brisbane, QLD, Australia, z School of Health and Wellbeing, University of Southern Queensland, Ipswich, QLD, Australia, x School of Nursing, Midwifery and Paramedicine, University of the Sunshine Coast, Sippy Downs, QLD, Australia, { School of Health and Human Sciences, Southern Cross University, Bilinga, QLD, Australia Abstract: Complex regional pain syndrome (CRPS) has never comprehensively been examined from a lived experience perspective. Patients generally have a poorer quality of life than people with other chronic pain conditions. This study aimed to understand the essence of living with CRPS. Data were collected from 17 patients via in-depth interviews. Hermeneutic discussions with four health profes- sionals generated deeper insights. Internet blogs and a book containing patient stories were included for theme verification and triangulation. CRPS is seen as a war-like experience and five themes were identified within the battle: "dealing with the unknown enemy", "building an armoury against a moving target", "battles within the war", "developing battle plans with allies" and "warrior or pris- oner of war". Patients live with a chronic pain condition and experience problems unique to CRPS such as fear of pain extending to other parts of their body. Use of the model generated by this research may assist patient/clinician interactions and guide therapeutic discussions. Support for peo- ple living with CRPS does not always exist, and some healthcare professionals require additional edu- cation about the condition. Better health outcomes are experienced by patients when their personal situation and experiences are heard and understood by health care professionals. Perspective: This article presents the lived experience of CRPS. This information and the model generated can help clinicians to better understand their patients and deliver appropriate patient-cen- tered care. © 2021 by United States Association for the Study of Pain, Inc. Key words: Complex regional pain syndrome, CRPS, Phenomenology, Qualitative research, Lived experience, Chronic pain. Introduction Complex regional pain syndrome (CRPS) is a condition which is difficult to diagnose, difficult to treat, and unlike other chronic pain conditions, it can spread to encompass other parts of the body. 8, 32, 48 It is reputed to be the most painful condition known to man as mea- sured by the McGill Pain scale, rating higher than ampu- tation of a digit, childbirth and cancer pain. 8, 32, 59 Previously known as reflex sympathetic dystrophy (RSD), causalgia and shoulder-hand syndrome, CRPS is largely unknown in the general public and many health profes- sionals will not encounter or recognise it in clinical prac- tice. 8, 38 CRPS causes are unknown; it usually develops after injury though spontaneous development can occur. 8, 23 Between 4 and 7% of patients who have undergone limb surgery, are likely to develop CRPS, although frac- tured limbs, sprains, bruises, intravenous cannulation, injections and stroke are also known causes. 6, 8, 61 It is most common in upper extremities, with approximately 60% in the arm and 40% in the leg. 32, 44 Affecting more women than men, the average age of incidence is any- where between 36 to 70 years of age, although children as young as 2 are known to have been diagnosed. 8, 32, 38 While there are a variety of presentations between patients who report symptoms such as hyperalgesia, This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. There are no conflicts of interest to declare. Address reprint requests to Colleen Johnston-Devin, School of Nursing, Midwifery and Social Sciences, CQUniversity Australia, Level 6, 160 Anne Street, Brisbane QLD, Australia E-mail: c.johnston-devin@cqu.edu.au 1526-5900/$36.00 © 2021 by United States Association for the Study of Pain, Inc. https://doi.org/10.1016/j.jpain.2021.03.151 1 ARTICLE IN PRESS The Journal of Pain, Vol 00, No 00 (), 2021: pp 1-18 Available online at www.jpain.org and www.sciencedirect.com