Analysis of the Experiences of Adults with Complex Regional Pain Syndrome

Complex regional pain syndrome is a rare, intractable disease causing chronic pain. For improved subjective and personal experience, an individualized treatment approach based on a thorough understanding of the patient’s perceptions is required for pain management. In this study, we examined the experiences and challenges of 11 Korean patients diagnosed with complex regional pain syndrome. The patients described their experiences during in-depth, face-to-face interviews, and data were subjected to a thematic analysis. We identified the following three main themes: “my own non-stereotyped pain,” “complex emotions caused by pain,” and “a careful life endured alone.” Enduring pain alone was difficult, and the lack of support from family members, caregivers, or society amplified the patients’ hardships. As these patients often felt alone when coping with internal difficulties, including pain, they frequently coped through self-management of the condition. The importance of offering realistic support to complex regional pain syndrome patients is underscored via a multifaceted approach and may aid in the development of educational programs for medical personnel, families, and caregivers of these patients.