Use of complementary and alternative medicine by patients with hypermobile Ehlers–Danlos Syndrome: A qualitative study

Abstract

BackgroundPatients with hypermobile Ehlers–Danlos Syndrome (hEDS) often make use of complementary and alternative medical (CAM) techniques to manage their chronic pain and other symptoms. Nevertheless, how they use CAM, which techniques they favor, and how CAM use affects their allopathic care remain unclear. The purpose of this qualitative study was to understand patients’ personal experiences with CAM and its role in their symptom management.Materials and methodsThirty individuals living with hEDS completed a brief online survey related to their CAM use. Thereafter, in-depth interviews were conducted with 24 of the survey respondents, qualitatively investigating their experiences with CAM. Data were analyzed using thematic analysis.ResultsParticipants described massage therapy (N = 21), medical cannabis (N = 12), and mindfulness (N = 13) as some of the most useful CAM modalities for managing symptoms related to hEDS, but they expressed a general interest in pursuing any treatment that could potentially reduce their chronic pain. They suggested an overall trust in CAM modalities and practitioners and ascribed greater empathy to CAM practitioners than to conventional medical providers. However, they also described a critical skepticism of CAM (and conventional) therapies and recounted instances of injury from such treatments.ConclusionParticipants made extensive use of CAM therapies. They described both critical benefits as well as harms from the use of these non-conventional modalities. These results underscore the importance of clinicians maintaining communicative and compassionate relationships with their patients, and of an openness to the discussion and use of CAM treatments.

A qualitative study of pain and related symptoms experienced by people with Ehlers-Danlos syndromes

“…For example, Berglund et al ( 17 ) revealed a main theme of “living a restricted life” that may explain ways in which “fears, pain, stigmatization, and experiences of “non-affirmation” in health care may impact the quality of daily living and social life. Unlike findings in some prior qualitative studies ( 21 ), our participants generally continued to work despite significant disability, and had adapted and negotiated their work environment and the health care system’s formidable barriers. Consistent with the literature, our study identified a wide range of individual differences in coping with chronic illness effects ( 32 ), and the use of integrative medicine strategies ( 23 ).…”

“…This study focused on psychosocial impact ( 20 ). Doyle and Halverson ( 21 ) interviewed 24 patients from one US clinic and focused on complementary and alternative medicine and explored changing attitudes toward pain in 15 patients ( 22 ). Bennett et al ( 23 ) conducted interviews with nine women in the United Kingdom to investigate self-management strategies.…”

Social media use by patients with hypermobile Ehlers–Danlos syndrome

“…In part, this was due to "a deep discomfort with doctors" resulting from the lasting, trauma-like symptoms of repeated negative encounters with clinicians, something characteristic of the experience of patients with hEDS . Additionally, researching sensitive topics such as safe sex practices for individuals living with symptomatic hypermobility as well as complementary and alternative pain management techniques were mentioned, echoing previous work demonstrating a level of distress in discussing these topics with healthcare providers (Doyle & Halverson, 2022).…”

Patient interest in the development of a center for Ehlers-Danlos syndrome/hypermobility spectrum disorder in the Chicagoland region

“…Recent findings have suggested that the use of complementary and alternative medical care (CAM) is very common among the EDS population, in part due to a perceived failure of conventional methods in managing chronic pain and other symptoms [ 30 ]. In our survey, 169 (55%) respondents reported accessing CAM or integrative care in the last five years, and 231 (90%) said they were either somewhat or very likely to make use of such services at a center within the next two years.…”