Hypermobility Syndrome (hEDS and HSD): A Patient Guide
At a Glance
Hypermobility syndrome includes hEDS and HSD, which can cause flexible or unstable joints, pain, fatigue, and symptoms in other body systems. HSD can be as disruptive as hEDS, so care often combines personalized physical therapy, pacing, occupational support, and chronic pain strategies.
Hypermobility syndromes, including hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD), are complex conditions rooted in the way the body builds and maintains its connective tissue. Often referred to as the body’s “glue,” connective tissue provides the essential scaffolding for your joints, skin, blood vessels, and internal organs. While clinical overlap exists and connective tissue behaves differently in these conditions, it is important to remember that hEDS and HSD do not automatically explain every symptom you might experience [1][2].
For many, the road to understanding these symptoms is a long one, marked by years of navigating unexplained pain, fatigue, and a sense that their body isn’t functioning as it should. It is now understood that hEDS and HSD share significant clinical overlap and exist on a spectrum. While the diagnostic criteria used to distinguish them are strict, they do not necessarily reflect a “mild” versus “severe” experience; a person with HSD may face the same levels of pain and daily impact as someone with a formal hEDS diagnosis [3][4].
Because connective tissue is found throughout the entire body, these conditions can be associated with multisystemic issues. Beyond flexible joints, some patients may experience challenges with their autonomic nervous system—leading to dizziness or a racing heart—as well as digestive issues, chronic fatigue, and changes in how their brain processes pain. However, any new or changing symptoms still require an ordinary medical differential diagnosis, as fatigue and GI issues have many common causes [5][6].
Managing life with hypermobility requires a team-based, multidisciplinary approach that moves beyond simply treating one symptom at a time. The cornerstone of care often involves specialized physical therapy to stabilize joints, occupational therapy to adapt daily tasks and conserve energy, and personalized strategies to manage chronic pain. By focusing on building stability and resilience through pacing and targeted support, you can learn to navigate the complexities of the condition while maintaining your independence and quality of life [7][8].
In this guide
6 chapters
Building Your Understanding of Hypermobility Syndrome (hEDS and HSD)
Learn how hypermobility, hEDS, and HSD differ, how Beighton scoring and 2017 criteria guide diagnosis, and why fatigue and pain may occur with either condition.
The Whole-Body Impact: Beyond Flexible Joints
Learn how hypermobility syndrome affects joints, nerves, digestion, and the autonomic system, including POTS, pain, fatigue, and brain fog across the body.
The Diagnostic Journey: How hEDS and HSD are Identified
Learn how hEDS and HSD are diagnosed, including Beighton scoring, 2017 clinical criteria, historical hypermobility, genetic testing, and key red flags.
Stability and Resilience: Managing hEDS and HSD
Learn how to manage hEDS and HSD with physical therapy, pacing, pain strategies, compression, hydration, and graded exercise to improve stability and function.
Procedures and Pregnancy: Navigating Surgery and Childbirth
Learn how hEDS and HSD affect anesthesia, surgery, pregnancy, and childbirth, including joint protection, airway safety, wound healing, and postpartum recovery.
Staying Vigilant: Monitoring and Emergency Signs
Learn how hEDS and HSD monitoring works, including heart checks for aortic dilation and POTS tracking, plus sudden symptoms requiring immediate emergency care.
Common questions in this guide
What do hEDS and HSD mean in hypermobility syndrome?
Is HSD always milder than hEDS?
What symptoms can hypermobility syndrome cause?
Could my fatigue or digestive symptoms be caused by hEDS or HSD?
What treatment is used for hEDS and HSD?
How can I make exercise safer with hypermobility?
Questions For You
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Questions to Ask Your Doctor
Curated prompts to bring to your next appointment.
- 1.Given my specific symptoms, do you view my case as falling more toward the hEDS or HSD side of the spectrum, and how does that affect our treatment priorities?
- 2.Can we develop a care plan that addresses both my joint instability and my systemic symptoms, like fatigue and digestive issues?
- 3.How can I best coordinate between you and the physical therapist to ensure my exercise program is safe for my connective tissue?
- 4.What individualized assessments or functional baseline measures should we establish now to monitor my long-term health?
References
References (8)
- 1
Hypermobile Ehlers-Danlos Syndrome: Diagnostic Challenges and the Role of Genetic Testing.
Forghani I, See J, McGonigle WC
Genes 2025; (16(5)) doi:10.3390/genes16050530.
PMID: 40428350 - 2
Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.
Yew KS, Kamps-Schmitt KA, Borge R
American family physician 2021; (103(8)):481-492.
PMID: 33856167 - 3
Localized and historical hypermobile spectrum disorders share self-reported symptoms and comorbidities with hEDS and HSD.
Fairweather D, Bruno KA, Darakjian AA, et al.
Frontiers in medicine 2025; (12()):1594796 doi:10.3389/fmed.2025.1594796.
PMID: 40880755 - 4
Utilization of the 2017 diagnostic criteria for hEDS by the Toronto GoodHope Ehlers-Danlos syndrome clinic: A retrospective review.
McGillis L, Mittal N, Santa Mina D, et al.
American journal of medical genetics. Part A 2020; (182(3)):484-492 doi:10.1002/ajmg.a.61459.
PMID: 31840928 - 5
Similarities and differences in self-reported symptoms and comorbidities between hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders.
Darakjian AA, Bhutani M, Fairweather D, et al.
Rheumatology advances in practice 2024; (8(4)):rkae134 doi:10.1093/rap/rkae134.
PMID: 39660107 - 6
Evidence for central sensitization as classified by the central sensitization inventory in patients with pain and hypermobility.
Desai MJ, Brestle M, Jonely H
Pain practice : the official journal of World Institute of Pain 2025; (25(1)):e13411 doi:10.1111/papr.13411.
PMID: 39192465 - 7
Practical management strategies for benign hypermobility syndromes.
Minhas D
Current opinion in rheumatology 2021; (33(3)):249-254 doi:10.1097/BOR.0000000000000798.
PMID: 33741806 - 8
Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory.
Bennett SE, Walsh N, Moss T, Palmer S
Disability and rehabilitation 2022; (44(18)):5231-5240 doi:10.1080/09638288.2021.1933618.
PMID: 34101520
This page about hEDS and HSD is for informational purposes only and does not constitute medical advice or a diagnosis. Discuss new or changing symptoms and any exercise or treatment plan with your healthcare team, who can tailor care to your situation.