Use of complementary therapies for chronic pain management in patients with reported Ehlers‐Danlos syndrome or hypermobility spectrum disorders
Abstract
Ehlers-Danlos Syndromes (EDS) and related Hypermobility Spectrum Disorders (HSD) are debilitating connective tissue disorders that feature a prominent pain component for which there are limited therapeutic options for pain management. Consequently, many patients try various non-prescribed treatments, including complementary and alternative therapies that have not been well studied in the EDS/HSD patient population. We surveyed over 500 individuals through the EDS Society who reported having been diagnosed with EDS or HSD to ascertain what complementary and alternative therapies were used and their reported effectiveness in alleviating pain and improving quality of life. Specifically, we focused on the use of traditional Chinese therapies, herbal medications, and marijuana. The most commonly reported therapies, used by 70-92% of participants, were non-steroidal anti-inflammatory drugs, acetaminophen, opioids, and physical therapy. Therapies rated by participants as most efficacious were opioids, physical therapy, and marijuana with 10-24% of those using these therapies rating them as extremely helpful. Patient-initiated complementary therapy use in EDS/HSD patients is widespread at 56%. Complementary therapies were largely utilized by EDS/HSD patients with higher reported pain levels. Providers caring for EDS/HSD patients should be aware of these data showing broad usage of predominantly non-prescribed therapies and be prepared to consider such usage in working collaboratively…
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Vitamin D supplementation may be required in patients with reduced bone mineral density and hypovitaminosis D.
“and vitamin D supplementation may be required in those with reduced bone mineral density and hypovitaminosis D.[65,66]”
From Hypermobility spectrum disorders: A review (2023) · cites this paper as [66]
Patient-initiated complementary therapy use was widespread (56%) and mainly utilized by patients with higher reported levels of pain.
“Patient-initiated complementary therapy use was widespread (56%) and mainly utilized by patients with higher reported levels of pain.”
From Hypermobility spectrum disorders: A review (2023) · cites this paper as [66]
hEDS and HSD are gathered in the same category for research purposes.
“or are gathered in the same category for research purposes [25, 26].”
From Are patients with hypermobile Ehlers–Danlos syndrome or hypermobility spectrum disorder so different? (2021) · cites this paper as [25]
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- Authors
- Demes, J. S., McNair, B., & Taylor, M. R. G.
- Affiliations
- University of Colorado Anschutz (US)
- Colorado School of Public Health (US)
- Corresponding author
- Demes, Jessica S.
- Venue
- American Journal of Medical Genetics Part A
- Publisher
- Wiley
- Published
- 2020-09-10
- Volume
- 182
- Issue
- 11
- Pages
- 2611-2623
- ISSN
- 1552-4825 (ISSN-L)
- 1552-4833
- OpenAlex
- W3084699813
- Cited by
- 30
- References
- 13
- Citations by year
- 2026: 2 · 2025: 5 · 2024: 4 · 2023: 7 · 2022: 7 · 2021: 5
- FWCI
- 5.25
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- American Journal of Medical Genetics Part A (publishedVersion)
- PubMed (publishedVersion)
- Funders
- University of Colorado Center for Innovative Design and Analysis
- Topics
- Health Sciences › Medicine › Complementary and alternative medicine › Complementary and Alternative Medicine Studies
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Connective tissue disorders research
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Keywords
- Ehlers-Danlos syndrome, hypermobility spectrum disorders, chronic pain management, complementary and alternative medicine, connective tissue diseases, traditional Chinese medicine, herbal medicine, cannabis, opioids, physiotherapy, nonsteroidal anti-inflammatory drugs, paracetamol, quality of life, treatment efficacy
- MeSH terms
- Adolescent, Adult, Aged, Aged, 80 and over, Complementary Therapies, Cannabis, Ehlers-Danlos Syndrome, Female, Humans, Joint Instability, Male, Medicine, Chinese Traditional, Middle Aged, Quality of Life, Plant Preparations, Young Adult, Chronic Pain, Pain Management
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