Pain Control Methods in Use by Patients With Ehlers-Danlos Syndrome and Pain Control Effectiveness

The purpose of this study is to assess the pain control methods in use by patients who have Ehlers-Danlos Syndrome, a group of connective tissue disorders. This descriptive study involved 1179 adults diagnosed with Ehlers-Danlos Syndrome who completed an anonymous on-line survey. The survey consisted of demographics information, the PROMIS Pain-Behavior, Pain-Interference, and Satisfaction with Social Roles and Activities scales, as well as a modified version of the Pain Management Strategies Survey (PMSS). Among the treatment modalities participants reported in this study, the most helpful for acute pain control were opioids, surgical interventions, splints and braces, heat therapy, nerve blocks, and physical therapy. Chronic pain was treated most effectively with opioids, heat therapy, splints or braces, and surgical interventions. Knowledge of pain management practices and perceptions of benefit is important for understanding how to support individuals with Ehlers-Danlos Syndrome. Increasing knowledge in this area could help clinicians better advise individuals who experience persistent pain as to pain management strategies most likely to be considered beneficial by the patient.