The purpose of this study was to assess the pain control methods in use by patients who have Ehlers-Danlos Syndrome (EDS), a group of connective tissue disorders, and their perceived effectiveness.
METHOD: This descriptive study involved 1179 adults diagnosed with EDS who completed an anonymous on-line survey.
The survey consisted of demographics information, the Patient Reported Outcomes Measurement Information System (PROMIS) Pain-Behavior, PROMIS Pain-Interference, and Neuro QOL Satisfaction with Social Roles and Activities scales, as well as a modified version of the Pain Management Strategies Survey.
Respondents reported having to seek out confirmation of their EDS diagnosis with multiple healthcare providers, which implies the difficulty many people with EDS face when trying to gain access to appropriate treatment.
Patients with EDS experience higher levels of pain interference and lower satisfaction with social roles and activities compared to national norms.
Among the treatment modalities in this study, those perceived as most helpful for acute pain control were:
- surgical interventions,
- splints and braces,
- avoidance of potentially dangerous activities and
- heat therapy.
Chronic pain treatments rated as most helpful were:
- splints or braces and
- surgical interventions.
For methods used for both acute and chronic pain, those perceived as most helpful were:
- massage therapies,
- splints or braces,
- heat therapy and
- avoiding potentially dangerous activities.
Opioids are clearly the most effective pain relievers for pain from EDS.
EDS is a complex, multi-systemic condition that can be difficult to diagnose and poses challenges for healthcare practitioners who engage with EDS patients in holistic care.
Improved healthcare provider knowledge of EDS is needed, and additional research on the co-occurring diagnoses with EDS may assist in comprehensive pain management for EDS patient