The Experience of Pain in Hypermobility Ehlers Danlos Syndrome: Having No Words for Feelings and Sharing Emotions. The Alexithymia Role

Background: Hypermobility Ehlers Danlos syndrome (hEDS) is a clinical condition characterized by hypermobility and tissue fragility and associated to chronic pain. The present study aimed to investigate the associations between affect regulation, pain perception and psychophysical dimensions. Methods: Twenty-five hEDS patients completed tests assessing pain experience, pain intensity, emotion regulation, alexithymia and quality of life. A regression analysis was performed on the total sample, in order to investigate the relationship between alexithymia, pain, emotional regulation and perception of quality of life. Results: A high percentage of alexithymia emerged. Negative significant associations emerged between quality-of-life scale and both emotion regulation scale and scales as well as with alexithymia scale and difficulties in identifying and describing feelings. Moreover, a relationship between hEDS and psychological variables concern the time of diagnosis appear. Discussion: Patients with hEDS seems to refer alexithymia; pain seems to interfere with practical aspects of daily life, and may reduce an individual's awareness of their emotional capabilities. Perception of heightened pain has a stronger impact on emotional resources when it interferes with affective life, rather than with practical life. Finally, delayed diagnoses of hEDS entail psychological consequence such as alexithymia. Conclusion: All these aspects may interfere with the possibility of patients to be understood for clinicians and a particular attention is needed also to define the rehabilitative approach.