LIVING WITH HYPERMOBILITY

Assessment & Diagnosis

Understanding how hypermobility is assessed, what a diagnosis can involve, and where to go from here.

UNDERSTANDING THE PROCESS

The diagnosis process is complex & WAY MORE than the Beighton Score!

Assessing symptomatic hypermobility involves much more than determining how ‘hypermobile’ you are.

A clinician should consider your current and historical joint mobility, symptoms, injuries, skin and connective-tissue features, family history, and whether other conditions could better explain what you're experiencing.

The aim isn't simply to identify hypermobility. It's to understand whether it is clinically significant, how it may be affecting you, and where you may fit within the diagnostic landscape.

About the Beighton score

The Beighton score is a screening tool used to assess generalised joint hypermobility. It is not a comprehensive measure of all joint hypermobility.

It assesses a limited number of joints and movements and does not capture every presentation of hypermobility. A person's score can also be influenced by factors such as age, injury, surgery, pain and changes in mobility over time.

For this reason, the Beighton score should be considered alongside a person's history, symptoms and broader clinical presentation.

THE REALITY OF SEEKING ANSWERS

Getting answers can take time, energy & money.

Receiving a proper assessment for HSD or hEDS isn't always a straightforward process.

Knowledge and experience of hypermobility-related conditions varies considerably between healthcare professionals. You may encounter clinicians who understand these conditions well, but you are also likely to meet professionals who are unfamiliar with current diagnostic frameworks, minimise the significance of hypermobility, focus on individual symptoms without recognising the broader pattern, or dismiss experiences they cannot easily explain.

For many people, receiving a diagnosis involves significant time, energy and self-advocacy. It may mean repeating your story, seeking multiple opinions, gathering previous medical information or finding clinicians with greater experience in hypermobility.

This can be particularly difficult when you're already managing pain, fatigue, cognitive load or multiple health concerns.

If you feel that something hasn't been adequately explained, it is reasonable to keep asking questions. You can ask why a diagnosis has or hasn't been considered, request that concerns are documented, seek another opinion, or bring someone you trust to an appointment for support.

You shouldn't need to become an expert in your own condition to receive appropriate healthcare. But understanding your body can give you more tools to advocate for it.

WHAT SHOULD BE ASSESSED

Building the clinical picture

The 2017 diagnostic criteria for hEDS bring together three parts of the clinical picture. All three criteria must be met for a diagnosis of hEDS.

The first looks at generalised joint hypermobility, the second considers additional features associated with hEDS, and the third ensures other conditions that may better explain the presentation have been considered.

CRITERION 1

Generalised Joint Hypermobility

Current Joint Hypermobility

Current joint hypermobility is assessed using the Beighton score, which measures a specific set of joint movements.

The Beighton Score
Assessing current joint hypermobility

  • Little finger bends back beyond 90° — 1 point each side

  • Thumb can be brought to the forearm — 1 point each side

  • Elbow hyperextends beyond 10° — 1 point each side

  • Knee hyperextends beyond 10° — 1 point each side

  • With knees straight, palms can rest flat on the floor — 1 point

Adults aged 50 years or younger: ≥5/9
Adults over 50 years: ≥4/9

When history matters

A person's joint mobility can change over time. Previous flexibility, injuries, pain, surgery or changes in activity may mean that someone who was clearly hypermobile earlier in life no longer demonstrates the same range of movement.

Your current range of movement doesn't always tell the whole story.

Historical Hypermobility

Joint mobility can change with age, injury, pain, surgery or changes in activity. Someone who is no longer obviously hypermobile may still have a significant history of joint hypermobility.

The 5-Point Questionnaire
Exploring historical joint hypermobility

  • Can you now (or could you ever) place your hands flat on the floor without bending your knees?

  • Can you now (or could you ever) bend your thumb to touch your forearm?

  • As a child, did you amuse your friends by contorting your body into strange shapes or could you do the splits?

  • As a child or teenager, did your shoulder or kneecap dislocate on more than one occasion?

  • Do you consider yourself “double jointed”?

2 or more positive responses
When the Beighton score is one point below the age-specific cut-off, two or more positive responses can support the presence of generalised joint hypermobility within the 2017 hEDS criteria.

CRITERION 2

Supporting Features

Criterion 2 looks beyond joint hypermobility at other features that may support a diagnosis of hEDS.

At least two of Features A, B and C must be met:

Feature A — Systemic manifestations
Feature B — Family history
Feature C — Musculoskeletal complications

  • Skin that feels noticeably softer or more velvety than expected.

  • Skin that stretches further than expected when gently pulled. This is usually measured on the underside of the non-dominant forearm.

    >1.5 cm = positive for this hEDS feature
    >2 cm = consider other EDS types

  • Stretch marks on areas such as the back, groin, thighs, breasts or abdomen without significant weight or body-fat changes or another medical explanation.

  • Small bumps that appear around the heels when standing or putting weight through the feet. They need to be present on both heels.

  • A history of multiple abdominal hernias or a hernia that has repeatedly occurred, such as umbilical or inguinal hernias.

  • Scars that heal thinner or more sunken than the surrounding skin.

    They must occur at two or more sites and should not have the markedly thin, papery appearance characteristic of classical EDS.

  • Prolapse in a child, man or woman who has not given birth, without another recognised explanation such as severe obesity or another predisposing medical condition.

  • Both dental crowding AND a high or narrow palate need to be present for this feature to count.

  • Long, slender fingers assessed using specific hand signs.

    This criterion is met with a positive wrist sign on both sides and/or a positive thumb sign on both sides.

  • Your arm span is at least 5% greater than your height.

    For example, someone who is 160 cm tall would need an arm span of 168 cm or more.

  • Mitral valve prolapse that is mild or greater, based on echocardiographic assessment.

  • Enlargement of the aortic root with a Z-score greater than +2 on cardiac imaging.

Feature A- Systemic manifestations

5 or more of the 12 features are required to meet Feature A

Feature B- Family history

One or more first-degree relatives must independently meet the current diagnostic criteria for hEDS.

A first-degree relative means a parent, sibling or child. Simply having a family member who is hypermobile does not meet Feature B, they need to independently meet the hEDS diagnostic criteria themselves.

Feature C- Musculoskeletal complications

Feature C looks at the musculoskeletal impact of hypermobility. At least one of the following must be present.

  • Pain in two or more limbs, occurring daily for at least 3 months.

  • Widespread pain lasting for at least 3 months.

  • Recurrent joint dislocations or clear joint instability occurring without significant trauma.

    This can include 3 or more atraumatic dislocations in the same joint, or 2 or more atraumatic dislocations in 2 different joints at different times.

    Alternatively, medically confirmed joint instability at 2 or more sites, unrelated to trauma, can meet this criterion.

CRITERION 3

Exclusion of other conditions

hEDS is a clinical diagnosis, which means there isn't currently a single test that can confirm it. Before a diagnosis is made, clinicians also need to consider whether another condition could better explain the person's features.

All three parts of Criterion 3 must be met.

  • There should not be unusual skin or tissue fragility that would suggest another type of Ehlers-Danlos syndrome or connective-tissue disorder.

    If more significant tissue fragility is present, further assessment may be needed.

  • Other heritable and acquired connective-tissue disorders need to be considered and excluded when appropriate.

    These can include other types of EDS, Marfan syndrome, Loeys-Dietz syndrome and autoimmune rheumatological conditions such as lupus or rheumatoid arthritis.

    GOOD TO KNOW
    Having another condition doesn't automatically mean you can't also have hEDS.

    GOOD TO KNOW
    Other conditions can often be excluded through medical and family history and physical examination. Further investigation or genetic testing may only be needed when something in the clinical presentation raises suspicion of another condition.

  • Other conditions that can cause joint hypermobility through connective-tissue laxity or low muscle tone also need to be considered.

    Depending on the person's presentation, this may include neuromuscular disorders, other heritable connective-tissue disorders and skeletal conditions such as osteogenesis imperfecta.

A Note on Genetic Testing

There is currently no genetic test that can confirm or exclude hEDS.

Genetic testing may be appropriate when a person's history, examination or family history raises suspicion of another heritable connective-tissue disorder for which genetic testing is available. Other conditions may be excluded through clinical history and examination without genetic testing when there is no reason to suspect them.

WHEN THE CRITERIA DON'T QUITE FIT

Don't meet the hEDS criteria? That doesn't mean your hypermobility isn't significant.

The diagnostic criteria for hEDS are specific, and many people experience symptomatic joint hypermobility, pain, instability and other associated difficulties without meeting all of the criteria for hEDS.

This is where Hypermobility Spectrum Disorder (HSD) may be considered. HSD describes symptomatic hypermobility that causes symptoms or functional difficulties, where another diagnosis does not better explain the presentation.

Not meeting the criteria for hEDS doesn't mean your symptoms are less real, less significant or less deserving of appropriate management.

Where to from here?

Understanding where you fit diagnostically can be helpful, but a diagnosis is only one part of understanding your body. From here, you can explore practical resources for living with hypermobility, or return to the Living With Hypermobility pathway.

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