Affect Regulation Capabilities in Hypermobility Ehlers Danlos Syndrome: Exploring the Associations with Pain Perception and Psychophysical Health.

Abstract

Background: Hypermobility Ehlers-Danlos syndrome (hEDS) is a clinical condition characterized by hypermobility and tissue fragility and is associated with chronic pain. The present study aimed to investigate the associations between affect regulation, pain perception, and psychophysical dimensions as well as alexithymic characteristics in the pathological range. Methods: Twenty-five hEDS patients completed a socio-anamnestic questionnaire as well as the Brief Pain Inventory (BPI), the 36-Item Short Form Survey (psychophysical health), the Difficulties in Emotion Regulation Scale (DERS), and the 20-item Toronto Alexithymia Scale (affect regulation). Results: Correlational analysis showed several negative significant associations between the SF-36, DERS, and TAS-20. The BPI showed few significant associations with both affect regulation measures. Moreover, a relationship between psychological dimensions and the time since diagnosis emerged. A total of 28% of participants reported TAS-20 scores in the clinical range and 36% reported scores in the borderline area. Discussion: Patients with hEDS seem to show high alexithymia levels; pain seems to interfere with the practical aspects of daily life and may reduce an individual's awareness of their emotional capabilities. The perception of heightened pain has a stronger impact on emotional resources when it interferes with affective life than when it interferes with practical life. Finally, delayed diagnoses of hEDS entail psychological consequences such as alexithymia. Conclusions: The present findings highlight the importance of promoting affect regulation capabilities through the implementation of psychological intervention programs for patients suffering from this medical condition.