Exercise adherence in hypermobile Ehlers–Danlos syndrome studied
US, UK researchers surveyed participants of online Pilates program
Findings from a tailored, online Pilates program suggest that participating in exercise may help people with hypermobile Ehlers–Danlos syndrome (hEDS) and those with hypermobile spectrum disorder (HSD) feel stronger and more empowered.
An “online exercise may be a valuable modality to help people with chronic conditions remain active,” wrote the researchers, who noted physical challenges, time constraints, and the need for adjustable instructions with the program. The study, “A Qualitative study exploring participants’ feelings about an online Pilates program designed for people with hypermobility disorders,” was published in the Journal of Bodywork and Movement Therapies.
Hypermobility, when joints move beyond their normal range, is a hallmark sign of conditions like hEDS and HSD, which are often associated with pain, joint instability, and fatigue. HSD features symptoms that are similar to those of hEDS, but it doesn’t meet the same diagnostic criteria.
While exercise is frequently recommended for managing symptoms in hEDS/HSD, there are no standardized guidelines and barriers such as pain, fatigue, and fear of injury limit participation.
Pilates, which is known for improving posture, balance, breathing, and strength, is often used by people with hEDS or HSD.
Having an online program available may be an aid to those with little access to providers trained to instruct hEDS/HSD patients and “could be beneficial in addressing both the physical and psychological needs of patients with hEDS/HSD, and improving outcomes through mind-body integration,” the scientists wrote. “Pilates also emphasizes slow movement and body awareness, which may address the proprioceptive [body position in space] deficits observed in hEDS/HSD.”
The ups and downs of online exercise
Researchers in the U.S. and U.K. conducted a survey to better understand the factors that motivated or blocked engagement in a eight-week online pilates program tailored to people with hypermobility disorders. The participants were encouraged to complete three modules a week, with each video lasting 25 minutes and including some resting activities so the modules weren’t too fatiguing.
The researchers hoped their study would shed some light on the experiences of people with hypermobility using an online exercise program, especially during the COVID-19 pandemic.
Of the 672 participants who agreed to participate, 207 (97.5% women; average age, 39.2) completed at least one session a week and were included in the analysis. Almost half the participants (47.7%) reported doing less than 15 minutes of exercise before joining the program.
Many participants appreciated that the exercises were gentle, progressed slowly, and were designed for conditions like hEDS. “Too often I start exercise regimes and need to stop too soon. Here I became aware of doing little and learning about my body and its movements,” said one woman, age 56.
One person said physical issues, such as illness, injury, fatigue, and pain, could make participating difficult. “I had a huge increase in fatigue. This correlates with starting the Pilates. For the first three weeks I did three weekly sessions, but the fifth week onward I did no sessions. This could also be exacerbated by the winter, seasonal changes.”
One emphasis of Pilates is body awareness and participants said feeling safe and empowered helped motivate them. Breathing exercises helped some participants relax, but others worried about fear of injury, stress, and anxiety.
The instructor being knowledgeable about hypermobility was called helpful and one participant, a 47 year-old woman, said an instructor’s own issues with hypermobility helped her own approach.
Having clear explanations and guidance on common mistakes were regarded as positives, but some participants said a fixed exercise program decreased their motivation.
Being able to do the exercises at home, especially during the COVID-19 pandemic, was also a major advantage. The short modules generally worked well and being able to modify exercises based on individual needs was widely appreciated. Still, 30% said finding time was a major concern and some struggled with the technology or felt certain exercises didn’t match their abilities.
“The key strength of the current study is hearing participants’ descriptions of factors affecting their ability to exercise using the online Pilates program,” the investigators wrote. “Other strengths of the current study include the fact that it was multinational, had a fairly large sample size, the robustness of our thematic analysis, and the thick description that allows readers to hear the words participants used.” The researchers said the high dropout rate was a limitation of the study.
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