If you’ve been told your joints are “just hypermobile” – or you’ve been living with pain, fatigue, and a long list of symptoms that no one seems to be able to explain – you’re not alone. Many of my patients come to me having spent years being dismissed, misdiagnosed, or simply told to push through it. Hypermobility Spectrum Disorder (HSD) is a real, recognised medical condition. It affects the whole body, not just your joints. And understanding it is the first step toward getting the right help.

This guide will walk you through what HSD is, how it’s diagnosed, what living with it looks like, and what you can do about it.

What is Hypermobility Spectrum Disorder (HSD)?

Hypermobility Spectrum Disorder is a group of conditions that occur when your joints move beyond their normal range of motion – and that hypermobility causes you real, life-impacting problems.

The key word here is symptomatic. Plenty of people have flexible joints with no issues at all. That’s not HSD. HSD is diagnosed when hypermobility is causing symptoms – things like chronic joint pain, instability, fatigue, gut problems, anxiety, dizziness or skin problems – and when other conditions (like other types of Ehlers-Danlos Syndrome) have been ruled out. ^[1]

You might have heard of this condition by its old name: Joint Hypermobility Syndrome (JHS). That term was retired in 2017 when the International Consortium on the Ehlers-Danlos Syndromes published a revised classification system, introducing the HSD framework we use today. ^[2]

HSD vs General Joint Hypermobility – What’s the difference?

Being hypermobile on its own is not a disorder. Many people – particularly children, young women, and people of certain ethnic backgrounds – have naturally flexible joints with no symptoms whatsoever. ^[7]

HSD is diagnosed when hypermobility causes symptoms that affect your daily life. If your flexible joints are leading to pain, injuries, instability, or other body-wide problems, that’s when it moves from a trait into a diagnosable condition.

For more information visit How is Hypermobility and Hypermobility Spectrum Disorder (HSD) diagnosed?

Is Hypermobile Spectrum Disorder (HSD) really different from Hypermobile Ehlers-Danlos Syndrome (hEDS)?

It is important to clarify that HSD does not simply sit at the “milder” end of a linear continuum as compared the hEDS. While some people may be “bendy but well,” those with HSD can experience the same multisystem impacts seen in hEDS, including skin, gut, allergy/MCAS-type symptoms, pain, fatigue, dysautonomia, headaches, anxiety, and neurodivergent challenges. The severity depends not only on joint hypermobility, but on how many body systems are involved, how significantly function is affected, and how much the condition alters daily life. For some people, HSD can be just as life-altering and limiting as hEDS, even when they do not meet the full diagnostic criteria for hypermobile EDS.

“NO TWO ZEBRAS HAVE THE SAME STRIPES”

People with symptomatic hypermobility, HSD/hEDS and EDS are often identified with the image of the ZEBRA. The main reason the zebra is used to represent EDS comes from a common phrase in medical training: “When you hear hoofbeats, think horses, not zebras.” Doctors are taught to look for the most common explanation first, meaning rarer conditions are often overlooked.

EDS, being relatively rare and frequently misdiagnosed, is considered a medical “zebra”. By adopting the zebra as a symbol, the EDS community proudly claims its uniqueness while raising awareness about the need for better recognition and understanding. However, it is important to note that 90% of all EDS patients have Hypermobile EDS and this is not rare, it’s just rarely diagnosed and often underrecognised and misdiagnosed.

hEDS has stringent diagnostic criteria as outlined in the 2017 International Diagnostic criteria for hEDS. The debate surrounding Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) centres on whether they are distinct conditions or part of a shared condition. This is division has caused significant challenges in clarity around diagnosis and clinical care. The Ehlers Danlos Society is leading the “Road to 2026” initiative, aiming to resolve the ambiguity by delving more into potential biological underlying causes, reviewing symptom overlaps with other health diagnoses and updating the classification, aiming for more inclusive criteria and better-validated diagnostic pathways.

Recent studies suggest hEDS and HSD share a biological foundation, with similar, if not identical, extracellular matrix and autoimmune markers found in both groups.

The four types of Hypermobility Spectrum Disorder (HSD)

HSD isn’t one-size-fits-all. There are four recognised subtypes, based on which joints are involved and whether hypermobility is current or historical: ^[1]

• Generalised HSD (G-HSD): Hypermobility affects multiple joints throughout the body. This is the most common subtype.
• Peripheral HSD (P-HSD): Hypermobility is limited to the hands and feet only.
• Localised HSD (L-HSD): Only one joint or a small group of joints is affected.
• Historical HSD (Hi-HSD): You were hypermobile in the past (confirmed by history or clinical evidence), but your joints have stiffened over time and no longer meet the current hypermobility threshold – yet you still have symptoms.

The subtype matters because it shapes how your condition is assessed and managed. Even Localised and Historical HSD can carry a significant symptom burden – recent research confirms that people with these subtypes report levels of pain and comorbidities similar to those with G-HSD or hEDS. ^[5]

Interestingly, the Paediatric generalised HSD and Paediatric-GJH include eight categories or subtypes:

1. Paediatric GJH
2. Paediatric GJH with skin involvement
3. Paediatric GJH with core comorbidities
4. Paediatric GJH with core comorbidities and skin involvement
5. Paediatric GHSD with musculoskeletal subtype
6. Paediatric GHSD, musculoskeletal subtype with skin involvement
7. Paediatric GHSD, systemic subtype
8. Paediatric GHSD, systemic subtype with skin involvement

How common is HSD?

HSD is more common than most people – and many clinicians – realise.

In a large-scale study at the Mayo Clinic’s EDS Clinic involving 2,695 patients assessed using the 2017 diagnostic criteria, 60.6% were diagnosed with HSD – making it by far the most common diagnosis in that hypermobility cohort, compared to 18.3% with hEDS. ^[5]

Combined estimates for hEDS and HSD suggest the conditions together may affect approximately 1 in 500 people – a significant step up from the older, widely quoted estimate of 1 in 5,000. ^[4]

But even that figure may be a significant undercount. Population-level studies across diverse age groups and ethnicities are still lacking. Hypermobility is known to be more common in younger people, in females, and in certain ethnic populations – yet most diagnostic and research data has historically come from predominantly White, adult female cohorts. ^[7] This means HSD is almost certainly being missed in people who don’t fit that profile. Additionally, the condition disproportionately affects females, with over 85% of Hypermobility Spectrum Disorder (HSD) patients in research cohorts identifying as female. ^[5]

The Ehlers-Danlos Society, has stated publicly that “EDS and HSD are two of the most misunderstood conditions of our time“ and that “many expert clinicians believe that HSD and hypermobile EDS (hEDS) are more common than currently recognized.“ ^[8] From my clinical experience, I’d go further: the gap between how many people are living with HSD and how many have actually been diagnosed is enormous. We are seeing this in the data from our Self-Screening Test for Hypermobility, which (as of the date of publication of this article) has received tens-of-thousands of responses.

Symptoms of Hypermobility Spectrum Disorder (HSD)

One of the most frustrating things I hear from patients is: “My symptoms are all over the place – is that normal?”

Yes. HSD is a whole-body condition, not just a joint problem. Symptoms vary widely between individuals, which is part of why it’s so often misunderstood – and misdiagnosed.

Musculoskeletal symptoms

These are usually the most obvious presenting symptoms:

• Chronic pain in muscles and joints – often described as aching, burning, or deep
• Joint instability – joints that feel like they “give way,” or that regularly sublux (partially dislocate)
• Frequent sprains and strains, often from everyday activities
• Poor proprioception – difficulty sensing where your body is in space, leading to clumsiness or poor balance
• Muscle fatigue and weakness, particularly after activity

Systemic and whole-body symptoms

Because connective tissue is found throughout the body, HSD can affect far more than just joints. You might also experience: ^[3]

• Fatigue – often disproportionate to activity level
• Brain fog – difficulty concentrating, memory issues
• Gut problems – bloating, constipation, reflux, or irritable bowel-type symptoms
• Bladder issues – including urgency or incontinence
• Dizziness, racing heart, or fainting – particularly when standing up
• Anxiety – which is both a common comorbidity and sometimes a response to chronic illness
• Sleep difficulties
• Headaches and migraines

Why symptoms vary so much between individuals

No two people with HSD experience it the same way. Symptom patterns can differ by age, gender, activity level, hormonal changes, and life circumstances. As the biological causes for HSD and hEDS continue to be investigated we know for certain that many factors contribute to symptoms patterns and levels and that as we transition through life, the change in symptoms and overall severity also changes.

This is a spectrum disorder – meaning severity ranges from mild and manageable to significantly disabling.

If your symptoms feel inconsistent or hard to explain, that’s a feature of the condition, not a sign that something is being imagined.

For additional information visit Common symptoms of Hypermobility and causes.

HSD vs hEDS – Understanding the difference

This question comes up a lot in my practice, so let me be clear.

Both HSD and hEDS involve symptomatic joint hypermobility. Both can cause significant, body-wide symptoms. Both are managed using broadly similar approaches. ^[3]

The difference is in the diagnostic threshold:

• hEDS requires meeting a more stringent set of criteria – including evidence of a systemic connective tissue disorder, specific musculoskeletal features, and in some cases, family history.
• HSD is the diagnosis given when you have symptomatic hypermobility but don’t fully meet those hEDS criteria.

This does not mean HSD is a lesser condition. Research confirms that people with HSD experience a comparable symptom burden to those with hEDS. ^[4] The label is a diagnostic distinction, not a measure of how much you’re struggling.

How is Hypermobility Spectrum Disorder (HSD) diagnosed?

HSD is a clinical diagnosis – meaning it’s based on your symptoms, history, and physical examination, not a blood test or scan.

The Role of the Beighton Score

The Beighton Score is a 9-point scale used to assess generalised joint hypermobility. It tests the flexibility of specific joints – including your pinkies, thumbs, elbows, knees, and whether you can place your palms flat on the floor with straight knees.

A score of 5 or more (out of 9) after puberty, or 4 or more after age 50, is considered a positive result for generalised hypermobility. ^[2]

The Beighton Score is a useful starting point – but it has real limitations, and you should know about them.

Research has shown that the Beighton Score was originally designed as an epidemiological screening tool for large populations – not as a standalone clinical diagnostic tool. Its limitations include: ^[9]

• Two-thirds of the joints tested are in the upper limbs, meaning many major joints (hips, shoulders, ankles, spine) are not formally assessed
• It only measures a single plane of movement at each joint, missing hypermobility in other directions
• It does not assess joint stability – which matters a great deal for conditions like HSD
• It will not capture Historical HSD, where joints have stiffened with age but symptoms persist
• A low or negative score does not rule out hypermobility in joints outside the scoring system

The Ehlers-Danlos Society and the International Consortium are actively working to identify whether adding specific extra tests – particularly from the Upper and Lower Limb Hypermobility Assessment Tools – could improve detection accuracy.

The bottom line: a Beighton Score is one piece of the puzzle, not the whole picture. If you’ve been told you “don’t score high enough,” that is not the end of the diagnostic conversation.

The Spider – Mapping the full symptom picture

One of the most clinically useful tools I’ve come across for understanding the real impact of HSD is the Spider questionnaire – a validated, multisystem symptom assessment tool developed specifically for HSD and hEDS.

The Spider uses 31 questions across eight domains to map out how hypermobility is affecting different areas of your life and health: ^[10]

• Neuromusculoskeletal – joints, muscles, movement
• Pain – type, frequency, and severity
• Fatigue – energy levels and activity tolerance
• Cardiac dysautonomia – heart rate, dizziness, POTS-related symptoms
• Urogenital – bladder function and pelvic symptoms
• Gastrointestinal – gut function and digestive symptoms
• Anxiety
• Depression

The results are plotted on a radar (spider web) graph, giving a clear visual overview of where symptoms are most concentrated. The closer a point sits to the outer edge of the web, the greater the impact in that domain.

Importantly, the Spider is not a diagnostic tool – it won’t tell you whether you have HSD. What it does is help you and your treating team see the full scope of how HSD is affecting your body and your life, so that nothing gets overlooked or left untreated. Validated in both adults and adolescents, it’s a genuinely practical tool for guiding multidisciplinary care. ^[10]

The 2017 Diagnostic Framework for HSD

Under the 2017 International Classification, HSD is diagnosed when: ^{[1] [2]}

1. You have symptomatic joint hypermobility (current or historical)
2. Your symptoms cannot be explained by hEDS or another connective tissue disorder
3. Your hypermobility is accompanied by musculoskeletal manifestations – such as pain, instability, or injury history

A thorough clinical evaluation will also assess for associated conditions (see below), and may include the Five-Point Questionnaire as a supplementary tool for detecting historical hypermobility.

Why diagnosis is often delayed

On average, people with hypermobility disorders wait many years for a correct diagnosis. Symptoms are frequently attributed to anxiety, deconditioning, or growing pains. The multi-system nature of HSD means patients often see multiple specialists – each treating a single symptom – before anyone connects the dots.

If you suspect HSD, asking your GP for a referral to a physiotherapist or clinician experienced in hypermobility disorders is a practical first step. You can also take our evidence-based online assessment to better understand your symptom picture.

Conditions commonly associated with HSD

HSD rarely travels alone. Several conditions frequently co-occur – not by coincidence, but because they share underlying connective tissue or autonomic nervous system mechanisms. ^[11]

POTS and Dysautonomia

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of autonomic dysfunction that causes your heart rate to spike significantly when you stand up. It’s closely linked to HSD, because lax connective tissue in blood vessel walls allows blood to pool in the legs rather than returning to the heart efficiently.

Research shows that among young patients with POTS, between 13% and 34% met criteria for HSD – depending on the diagnostic threshold used. ^[6]

Symptoms include dizziness, racing heart, brain fog, fatigue, and near-fainting – all of which are often made worse by heat or prolonged standing.

Mast Cell Activation Syndrome (MCAS)

MCAS involves immune cells called mast cells behaving erratically – releasing chemicals that trigger allergy-type reactions (flushing, hives, gut symptoms) without a clear trigger. Mast cells live in connective tissue, which may partly explain why MCAS, POTS, and HSD so frequently cluster together. ^[6]

Anxiety, Neurodivergence, and Mental Health

Anxiety is significantly more common in people with HSD – partly due to the autonomic nervous system dysregulation that comes with the condition, and partly as an understandable response to chronic pain and medical uncertainty.

There is also a well-established overlap with ADHD and Autism Spectrum Disorder. Research suggests that up to 46% of children with HSD or EDS are also diagnosed with ADHD. If this resonates with your experience, you are not alone – and it’s worth raising with your treating team.

Gastrointestinal Involvement

Gut problems are extremely common in HSD. Connective tissue laxity can affect the gut’s ability to move food efficiently, leading to bloating, reflux, nausea, constipation, and in some cases, more significant conditions like gastroparesis or gut dysmotility. For more on this, eosinophilic disease and gut involvement in EDS/HSD is covered by APFED.

Managing and treating HSD

There is no cure for HSD – but with the right approach, symptoms are manageable, and quality of life can improve significantly.

Physiotherapy and exercise – The cornerstone of management

Physiotherapy is the primary treatment for HSD. The goal isn’t to become more flexible (you’re already flexible enough), but to build the muscle strength and motor control that your ligaments and connective tissue aren’t providing.

Evidence-supported approaches include:

• Gentle targeted isometric strengthening – building muscle without stressing already-lax joints
• Proprioceptive functional movement and balance training – retraining your body’s sense of position in space
• Graded exercise programs – carefully progressed to avoid post-exertional crashes
• Breathing and nervous system work – particularly where dysautonomia is present

Traditional static stretching is generally counterproductive for hypermobile joints and should be avoided.

Pain management

Chronic pain in HSD is real and deserves proper management. This may include:

• Targeted physiotherapy and hydrotherapy
• Pain education and pacing strategies
• Medications prescribed and monitored by your GP or pain specialist
• Psychological support – particularly Acceptance and Commitment Therapy (ACT) or Cognitive Behavioural Therapy (CBT)

Multidisciplinary care

Because HSD affects so many body systems, the best outcomes come from a team-based approach. Depending on your symptoms, your care team might include a physiotherapist, GP, pain specialist, gastroenterologist, cardiologist (for POTS), psychologist, and occupational therapist.

What the “Road to 2026” means for HSD patients

Right now, there is significant and exciting work happening in the HSD and EDS world.

The Ehlers-Danlos Society’s Road to 2026 initiative is a global effort to update the 2017 classification criteria, create clearer diagnostic pathways, and develop evidence-based treatment guidelines – all with the goal of reducing diagnostic delays and improving care. The updated classification is due for publication in December 2026 in the American Journal of Medical Genetics.

A major piece of this work is the HEDGE Study – the largest ever genetic study of hEDS, involving whole-genome sequencing of 1,000 individuals from 86 countries. Its findings are expected to reshape how we understand – and eventually diagnose – hypermobility disorders.

As a member of the EDS Society’s CORE Networks of Excellence Program, Hypermobility Health Connect is committed to staying at the forefront of these developments and making sure our community has access to the most current, accurate information.

Next Steps – Getting Support

If you suspect you have HSD – or you’ve already been diagnosed and want to understand it better – here are some practical next steps:

• Take our evidence-based online assessment – a 15-minute tool to help you understand your symptom picture
• Talk to your GP about a referral to a physiotherapist or clinician experienced in hypermobility disorders
• Visit the Ehlers-Danlos Society for clinician-reviewed information on HSD
• Connect with The Hypermobility Foundation (Australia & NZ) for peer support
• Browse our Hypermobility Glossary for plain-English explanations of clinical terms

You deserve answers. And you deserve care that takes your symptoms seriously.

References