Objectives To determine the beliefs and describe the health care experiences of patients with complex regional pain syndrome. Methods A survey tool for patients with complex regional pain syndrome was designed for this study. The survey tool collected self-reported measures associated with pain, disability, health care experiences, education, beliefs, and treatments. Results Thirty-one patients attending physical therapy for complex regional pain syndrome (mean age 40.48; female n = 20) completed the survey. Patients with presented with high levels of pain and disability and reported various changes associated with altered neuroplasticity such as confused body part recognition, left/right discrimination, neglect, and spreading pain. The patients' experiences with diagnostic testing and interventions are not in line with the current pain science research and/or evidence-based practice. Overall, patients are ill-informed, confused, and receive conflicting information. Discussion The suffering associated with complex regional pain syndrome is real, as told by patients. This suffering coincides with a lack of consensus by health care providers and conflicting information on complex regional pain syndrome. Overall, patient experiences show health care providers are not up to date with the current best-evidence regarding complex regional pain syndrome.
Keywords: Complex regional pain syndrome; diagnosis; patient perspective; physical therapy.