Features that exacerbate fatigue severity in joint hypermobility syndrome/Ehlers–Danlos syndrome – hypermobility type

Abstract

Aim: To assess the prevalence, severity and impact of fatigue on individuals with joint hypermobility syndrome (JHS)/Ehlers–Danlos syndrome – hypermobility type (EDS-HT) and establish potential determinants of fatigue severity in this population.

Methods: Questionnaires on symptoms and signs related to fatigue, quality of life, mental health, physical activity participation and sleep quality were completed by people with JHS/EDS-HT recruited through two social media sites. Multiple regression analysis was performed to identify predictors of fatigue in this population.

Results: Significant fatigue was reported by 79.5% of the 117 participants. Multiple regression analysis identified five predictors of fatigue severity, four being potentially modifiable, accounting for 52.3% of the variance in reported fatigue scores. Predictors of fatigue severity were: the self-perceived extent of joint hypermobility, orthostatic dizziness related to heat and exercise, levels of participation in personal relationships and community, current levels of physical activity and dissatisfaction with the diagnostic process and management options provided for their condition.

Conclusion: Fatigue is a significant symptom associated with JHS/EDS-HT. Assessment of individuals with this condition should include measures of fatigue severity to enable targeted management of potentially modifiable factors associated with fatigue severity.

Implications for rehabilitation

• Fatigue is a significant symptom reported by individuals affected by joint hypermobility syndrome/Ehlers–Danlos syndrome – hypermobility type.

• Potentially modifiable features that contribute to fatigue severity in this population have been identified.

• Targeted management of these features may decrease the severity and impact of fatigue in joint hypermobility syndrome/Ehlers–Danlos syndrome – hypermobility type.

Keywords:

• Health-related quality of life
• hypermobile Ehlers–Danlos syndrome
• hypermobility syndrome
• mental health
• physical activity
• orthostatic intolerance

Acknowledgements

The authors acknowledge the assistance of Dr Bronwen Ackermann in the development of a standardized testing protocol.

Disclosure statement

The authors report no conflict of interest.