hEDS study points to pain, movement fears as quality-of-life hurdles
Bone density was generally normal despite fracture history in 16 women
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Women in a small study of hypermobile Ehlers-Danlos syndrome (hEDS) reported chronic pain and high rates of kinesiophobia, or fear of movement or activity, both of which were associated with worse mental health scores and lower physical function.
Despite a history of adult fractures among study participants, their bone mineral density was generally normal.
“Future work should confirm the results of this study so that interventional studies can be developed which focus on ways to improve quality of life for hEDS patients by reducing pain levels, improving mental health, and subsequently addressing [fear of movement],” the team wrote.
Study examines pain, function in hEDS
The study, “Kinesiophobia, global health, pain, and bone mineral density in women with hypermobile Ehlers-Danlos syndrome: a prospective cohort study,” was published in Rheumatology International.
Like other EDS subtypes, hEDS is generally characterized by joints that extend beyond the normal range of motion (hypermobile), connective tissue fragility, and soft, stretchy skin.
Prior research suggests bone fractures, including low-impact fractures, are more common in people with hEDS. That increased risk may be related to several factors, including reduced physical activity, fear of movement, and other behavioral changes not directly connected to bone density. Poor proprioception, which is the body’s ability to sense its position and movement, may also increase the risk of falls and fractures.
This study examined how physical activity, physical function, mental health, pain, and kinesiophobia are related in 16 premenopausal women with hEDS, with a mean age of 36. Half (50%) reported at least one fracture during adulthood, and 38% had undergone orthopedic surgery.
The most common coexisting condition, reported by 50% of participants, was postural orthostatic tachycardia syndrome (POTS), a condition marked by heart palpitations and dizziness when standing up. Additional conditions included anxiety or depression, gastroparesis (delayed stomach emptying), gastroesophageal reflux, and mast cell activation syndrome, a condition involving abnormal immune responses.
While exercise levels varied across the group, participants had an average score of 5.6 on the UCLA Activity Level rating scale, a 10-point measure of physical activity. That score corresponds to moderate-intensity activity multiple times per week, such as swimming, shopping, or unlimited housework.
Bone density generally normal despite fractures
Overall, patients maintained adequate bone mineral density (BMD), as assessed by dual-energy X-ray absorptiometry. The average group BMD was 1.16 g/cm² at the spine and 0.961 g/cm² at the femoral neck, the part of the upper thigh bone that meets the hip. In comparison, normative values for premenopausal women are 1.075 g/cm² at the spine and 0.848 g/cm² at the femoral neck.
Even so, three participants were classified by the researchers as osteopenic, with bone density scores that fell in the low range but not at the level of osteoporosis.
Participants reported a mean pain score of 4.7 out of 10. Using a standardized tool called the PROMIS-10, more than half of participants (63%) had mental health scores below the average range. For physical function, 31% scored in the very low range, and kinesiophobia, as measured by the Tampa Kinesiophobia Scale, was common at 63%.
Pain was strongly associated with both mental health and physical function. Kinesiophobia was moderately negatively correlated with mental health and strongly negatively correlated with physical function, meaning higher kinesiophobia was associated with lower scores in both areas.
“This indicates that pain may be a driver of kinesiophobia in this population and kinesiophobia is subsequently associated with functional impairment, fatigue, and fear of falling,” the researchers wrote.
Movement fear not tied to bone density
At the same time, BMD was not linked to kinesiophobia, pain, or activity levels.
A separate statistical analysis also showed strong relationships between pain and kinesiophobia, pain and mental health, kinesiophobia and physical function, and kinesiophobia and mental health. Age and activity level were not significant predictors in this analysis.
“This study suggests that hEDS may be associated with a higher incidence of fracture (50%), without the confounder of low bone mass,” the researchers wrote. “Patients with hEDS have a high degree of chronic pain and kinesiophobia.” The researchers cautioned that, given the study’s limitations, its findings should not be interpreted outside the context of this specific study group.
