Mindfulness Pilot Study Hints at Benefits for hEDS, HSD Patients

Participants reported increased body awareness, reduced pain intensity

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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A two-week virtual mindfulness program led to quality of life improvements for people with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD), according to a recent pilot study.

Patients reported benefits of the exercise included increased bodily awareness and reduced pain intensity, but participants noted a need for more variation to prevent boredom and limit distractions.

“Meditation practiced daily over two weeks has a beneficial impact on patient experience,” the researchers wrote. “Further multidisciplinary research is warranted to establish the efficacy of self-guided mindfulness initiatives because they are low-cost interventions that may complement standard care approaches.”

The study, “Pilot study of an online-delivered mindfulness meditation in Ehlers-Danlos syndrome (hEDS): effect on quality-of-life and participant lived experience,” was published in the journal Disability and Rehabilitation.

The overly mobile joints characteristic of hEDS and HSD, formerly known as joint hypermobile syndrome (JHS), can be accompanied by joint inflammation that lead to chronic musculoskeletal pain, or pain involving the bones, muscles, and joints.

Managing pain for these patients is a significant concern, yet, traditional approaches have shown limited efficacy, the researchers noted.

Mindfulness, the practice of staying aware and in the moment, has emerged as one type of cognitive behavioral therapy that may help ease chronic pain.

“Patients would learn to sustain attention on the breath and suspend judgment of thoughts and emotions that accompany pain experience,” the researchers wrote.

While such a practice might not directly alter physical pain, it could potentially influence the cognitive or emotional experience of pain — factors that can have a direct impact on life quality.

Yet, whether mindfulness can ease pain experiences for hEDS or HSD patients hasn’t been established.

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Impact of mindfulness program measured

Researchers in the U.K. investigated the impact of a two-week virtual mindfulness program in hEDS and HSD patients.

Overall, 76 participants (98% women) with a mean age of 38.6 completed the mindfulness program. Among them, 66% had an hEDS diagnosis, 18% had HSD, and 16% had been diagnosed with JHS.

Participants were given a video explanation of the program and directions for the six-minute mindfulness practice. Briefly, the meditation involved acknowledging current thoughts and feelings without judgment, redirecting attention to the flow of breath, and “anchoring” oneself in the present.

Patients meditated from five to 14 of the days, with a mean of 11.2 days. Participants usually reported meditating two to three times per day (82%), while some (18%) said they meditated five or more times per day.

Significant improvements were observed in all quality of life domains, as assessed by the SF-36 questionnaire, except the physical domain, after the intervention. Improvements in the mental component summary score were clinically meaningful, the researchers noted.

Patient perception of program noted

Semi-structured interviews were conducted in 10 patients to gain a better understanding of patients’ perceptions about the mindfulness program.

Participants generally felt the program led to increased body awareness, which helped them recognize where their pain was occurring and what type it was.

“I didn’t give it much thought what my pain is I just knew I had pain, so I think that’s what I have got out of it; focus more on what my pain is and deal with things better that way,” one patient said.

In contrast, some felt that this hyperawareness of their pain had a negative effect.

Still, “meditation practice may allow participants to feel they have better control over the impact of their pain on other domains such as work and social life,” the researchers wrote.

It could also enable patients to “communicate more effectively with health practitioners and make more skillful choices on how best to manage pain.”

All 10 people reported a reduction in pain intensity with the program. “This is not a magical cure but it’s just that focus on something else focused on breathing just takes that pain down the level,” one participant noted.

Relaxation, improved sleep, and reductions in fatigue resulting from the meditation also helped to improve pain management.

Barriers to performing the meditation included forgetting, distractions, boredom, or avoidance due to fear the practice would make pain or anxiety worse. Patients noted a wish for a greater variety of mindfulness exercises.

“Providing more choice would enable individuals to tailor mindfulness to their own needs and facilitate regular engagement with meditation practice,” the researchers wrote.

While overall offering support for mindfulness programs in the pain management of hEDS and HSD, it is “not possible to draw firm conclusions,” the researchers wrote, noting that a lack of a control group who didn’t receive the intervention limited the study’s interpretation.

“Our novel evidence points to a need for rigorously controlled studies to establish the potential benefit of meditation for this group,” the researchers wrote.