Daily life limitations may reveal more about disability in hEDS, study finds
Women with greater disability faced difficulties beyond joint problems and pain
Written by |
Difficulties with daily activities, physical activity, and social participation may be important in understanding the extent of disability in people with hypermobile Ehlers-Danlos syndrome (hEDS), a new study suggests.
By examining patterns of symptoms, researchers identified three groups with low, moderate, or high levels of disability. Nearly 60% of women with hEDS in the study were in the most severely affected group. These women reported poorer overall health and greater problems with physical functioning, pain, and carrying out daily responsibilities. Yet the most severely affected group had similar degrees of joint hypermobility and similar numbers of physical signs associated with hEDS as the moderately affected group.
The findings suggest that considering how symptoms affect daily life, rather than focusing only on joint hypermobility and pain, could help doctors better understand patients’ needs and tailor their care.
Symptoms beyond joint problems may affect daily life in hEDS
The study, “Exploring cross-category relationships between symptoms in people with hypermobile EDS (hEDS) to identify disability patterns,” was published in PLOS One.
Ehlers-Danlos syndrome (EDS) is a group of disorders affecting connective tissue, which helps support the body’s joints, skin, and organs. hEDS, the most common EDS type, is marked by symptoms such as unusually flexible joints, joint instability, and chronic joint pain. But hEDS can also affect many other parts of the body.
People with hEDS may also experience fatigue, digestive problems, headaches, dizziness, brain fog, and excessive bleeding or bruising. The symptoms people experience and how severe they are can vary widely, making hEDS difficult to recognize and diagnose.
Doctors diagnose hEDS using a set of criteria that includes joint hypermobility, certain physical signs, family history, and chronic pain or joint instability. They must also rule out other conditions that could explain the symptoms. However, these criteria do not account for many of the symptoms patients experience or how they affect daily life.
People whose unusually flexible joints cause symptoms but who do not meet all the criteria for hEDS may instead be diagnosed with hypermobility spectrum disorder (HSD). Because hEDS and HSD can cause similar symptoms and limitations, researchers have suggested that the conditions may be part of the same spectrum of severity, possibly representing different stages of disease progression.
To investigate this possibility, U.S. researchers looked for patterns among symptoms affecting different parts of the body. They wanted to see whether these patterns could identify groups with different levels of disability, regardless of diagnosis, and help guide more personalized care.
Researchers identify three disability groups in hEDS
The researchers analyzed data collected between February and September 2022 as part of a larger study of hEDS. The analysis included 47 women with hEDS, eight with asymptomatic joint hypermobility — unusually flexible joints without associated chronic pain or other significant problems — and 35 women without joint hypermobility or chronic pain who served as a comparison group.
Participants completed questionnaires about their general health, pain, fatigue, physical and social functioning, bleeding and bruising, and symptoms involving the autonomic nervous system. This system controls automatic body functions such as blood pressure, digestion, and bladder control.
The researchers used a statistical method to identify groups with similar symptoms and levels of daily functioning. They then compared the groups’ degrees of joint hypermobility, physical signs associated with hEDS, and other characteristics.
The researchers identified three groups with low, moderate, or high levels of dysfunction among the 47 women with hEDS and eight with asymptomatic joint hypermobility. All eight women with asymptomatic hypermobility were in the low-dysfunction group, along with two women with hEDS (4.3%). The remaining 45 women with hEDS were in the moderate-dysfunction group (38.3%) or the high-dysfunction group (57.4%).
Compared with women in the moderate-dysfunction group, those in the high-dysfunction group reported poorer overall health, greater fatigue, and more difficulty with physical activities and social participation. They also reported more severe autonomic symptoms, particularly those affecting blood vessel regulation, sweating, and digestion. Their bleeding scores were also higher.
Disability extends beyond pain and joint hypermobility
However, the moderate- and high-dysfunction groups had similar degrees of joint hypermobility and similar numbers of physical signs associated with hEDS. Pain scores also did not differ significantly between these groups, suggesting that pain alone may not fully reflect the extent of disability.
The researchers suggested that these different levels of dysfunction might represent stages of disease progression. They proposed that symptoms affecting different body systems could reinforce one another and contribute to greater disability. However, the study assessed participants at only one point in time, so it could not determine whether people progress from one level of dysfunction to another.
“Ultimately, a longitudinal study of people ascertained solely on hypermobility may be useful to identify the triggers for symptomatic hypermobility,” the team wrote.
Together, the findings suggest that disability in hEDS involves more than pain or joint hypermobility alone. Symptoms affecting multiple body systems, particularly those that interfere with daily responsibilities and social participation, may help explain the extent of patients’ disability.
Leave a comment
Fill in the required fields to post. Your email address will not be published.