Living with Ehlers-Danlos Syndrome (EDS) often means more than just joint hypermobility or fragile skin—it means navigating a long, complex journey through the healthcare system while managing pain that others can’t always see. Recent research highlights just how misunderstood EDS remains, and why supporting both body and mind is essential in care.
The Diagnostic Odyssey
For many with hypermobile EDS (hEDS), the road to diagnosis is long and winding. Halverson et al. (2023) found that patients often endure years of misdiagnoses and comorbidities before receiving an accurate EDS diagnosis. Many are initially told they have fibromyalgia, chronic fatigue syndrome, or even psychosomatic conditions. This “diagnostic odyssey” delays effective treatment and increases emotional distress.
The consequences of misdiagnosis include:
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Unnecessary treatments or procedures.
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Dismissal of symptoms as “in the patient’s head.”
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Psychological harm, including mistrust of healthcare providers.
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Worsening of both physical and mental health symptoms.
Pain in EDS: More Than Meets the Eye
Pain is one of the most disabling symptoms of EDS, and it’s not just mechanical. Research by Malfait et al. (2021) highlights that EDS pain is multifactorial, involving:
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Musculoskeletal pain from joint instability, sprains, and micro-injuries.
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Neuropathic pain due to nerve compression or damage.
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Central sensitization, where the nervous system becomes hypersensitive to pain signals, amplifying even mild discomfort.
This complexity makes pain in EDS hard to treat with standard approaches, often leaving patients in a cycle of trial-and-error medications, physical therapy, and alternative treatments.
The Mental Health Impact
Both misdiagnosis and chronic pain shape the mental health of people with EDS:
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Anxiety & Depression – Rates are significantly higher among those with chronic, uncontrolled pain.
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Medical Trauma – Being repeatedly dismissed or misdiagnosed can create PTSD-like responses to healthcare visits.
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Cognitive Strain – Chronic pain and fatigue contribute to “brain fog,” memory lapses, and difficulty concentrating.
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Isolation – Limited mobility, stigma, and disbelief from others can lead to social withdrawal.
EDS shows us how physical and psychological health are inseparable. Treating only the joints or only the anxiety misses the full picture.
Toward a Whole-Person Approach
To improve care for patients with EDS, treatment must be multidimensional:
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Medical – Accurate diagnosis, management of comorbidities (like POTS or mast cell activation), and targeted therapies for connective tissue.
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Pain Management – Using multimodal approaches, including medication, physical therapy, nerve blocks, and mindfulness-based strategies.
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Mental Health Care – Psychotherapy to address medical trauma, coping skills for chronic pain, and support for mood disorders.
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Lifestyle & Integrative Care – Nutrition support, pacing strategies, gentle strengthening exercises, and sleep optimization.
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Conclusion
Ehlers-Danlos Syndrome is far more than a “bendy joint” condition—it is a whole-body, whole-mind disorder that demands compassionate, integrated care. By acknowledging the diagnostic challenges and the complex pain mechanisms, providers can better support patients not just in surviving with EDS, but in finding ways to thrive.
- Halverson, C. M., Cao, S., Perkins, S. M., & Francomano, C. A. (2023). Comorbidity, misdiagnoses, and the diagnostic odyssey in patients with hypermobile Ehlers-Danlos syndrome. Genetics in Medicine Open, 1(1), 100812. https://doi.org/10.1016/j.gimo.2023.100812
- Malfait, F., Colman, M., Vroman, R., De Wandele, I., Rombaut, L., Miller, R. E., … & Syx, D. (2021). Pain in the Ehlers–Danlos syndromes: Mechanisms, models, and challenges. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 187(4), 429-445. https://doi.org/10.1002/ajmg.c.31967
References
Halverson, C. M., Cao, S., Perkins, S. M., & Francomano, C. A. (2023). Comorbidity, misdiagnoses, and the diagnostic odyssey in patients with hypermobile Ehlers-Danlos syndrome. Genetics in Medicine Open, 1(1), 100812. https://doi.org/10.1002/ajmg.c.31935
Malfait, F., Colman, M., Vroman, R., De Wandele, I., Rombaut, L., Miller, R. E., … & Syx, D. (2021). Pain in the Ehlers–Danlos syndromes: Mechanisms, models, and challenges. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 187(4), 429-445. https://doi.org/10.1002/ajmg.c.31950