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Hypermobility vs. Ehlers-Danlos Syndrome

Oct 5
5 min read

Updated: Oct 15



Maybe you've always been the flexible one. You can bend your thumb to your wrist or lock your elbows backward. Then you read about Ehlers-Danlos syndrome (EDS) online & start to wonder if it's more than a party trick.


Here's the short answer: being flexible isn't the same as having EDS. Hypermobile joints are one piece of a much bigger picture. This post walks through how doctors tell joint hypermobility, hypermobility spectrum disorders & hypermobile EDS apart.


Joint Hypermobility: Flexible Isn't a Diagnosis

Joint hypermobility means your joints move beyond the typical range. On its own, it's a physical trait, not a disease. Plenty of people are hypermobile & never have a problem with it.


The Ehlers-Danlos Society calls this "asymptomatic joint hypermobility" & notes it doesn't need treatment. Hypermobility becomes a medical question when it comes with pain, instability, injuries or other symptoms.


How Doctors Measure Hypermobility: The Beighton Score

The most common screening tool is the Beighton score, a quick 9-point exam:


  • Bending each pinky finger back past 90 degrees (1 point per side)

  • Bending each thumb to touch the forearm (1 point per side)

  • Hyperextending each elbow past 10 degrees (1 point per side)

  • Hyperextending each knee past 10 degrees (1 point per side)

  • Placing your palms flat on the floor with straight knees (1 point)


What counts as "generalized" hypermobility depends on age, since joints naturally stiffen over time. Under the 2017 criteria, the cutoffs are 6 or more for children before puberty, 5 or more from puberty to age 50 & 4 or more after 50.


A high Beighton score alone doesn't mean EDS. It's the first step, not the answer.


Hypermobility Spectrum Disorders (HSD)

When hypermobility causes real symptoms but doesn't meet the full criteria for hypermobile EDS, the diagnosis is often a hypermobility spectrum disorder, or HSD. The Ehlers-Danlos Society describes HSD as connective tissue disorders that cause joint hypermobility, instability, injury & pain, sometimes alongside fatigue, headaches & autonomic symptoms.

One important point: HSD isn't a throwaway diagnosis. According to the Ehlers-Danlos Society, management is currently the same for HSD & hEDS, & both need recognition, validation & care.


Hypermobile Ehlers-Danlos Syndrome (hEDS)

There are 13 types of EDS. Hypermobile EDS is by far the most common. Unlike the other types, it has no genetic test, because the gene or genes behind it haven't been identified yet. That means hEDS is diagnosed clinically, using a checklist published in 2017.

To be diagnosed with hEDS, a person has to meet all three criteria:


1. Generalized joint hypermobility

A Beighton score at or above the cutoff for their age.


2. Signs of a broader connective tissue disorder

At least two of these three must be present:


  • Systemic features: at least 5 of 12 listed signs, such as unusually soft or velvety skin, unexplained stretch marks, atrophic scarring, hernias, pelvic floor prolapse or certain heart valve findings

  • Family history: a parent, sibling or child who independently meets the hEDS criteria

  • Musculoskeletal complications: daily pain in two or more limbs for at least 3 months, chronic widespread pain for at least 3 months, or recurrent joint dislocations without trauma


3. Other conditions ruled out

No unusual skin fragility (which points to other EDS types), & other connective tissue disorders & alternative explanations for the hypermobility have been excluded.


Hypermobility vs. HSD vs. hEDS at a Glance


Joint hypermobility

HSD

hEDS

What it is

A physical trait

Symptomatic hypermobility

A heritable connective tissue disorder

Symptoms

None required

Pain, instability, injuries & more

Pain, instability & body-wide features

How it's identified

Physical exam

Clinical evaluation

2017 clinical criteria

Genetic test

Not applicable

None

None available yet

Needs treatment?

Not if symptom-free

Yes, based on symptoms

Yes, based on symptoms

Why Genetic Testing Still Comes Up

If hEDS has no genetic test, why do some doctors order one? Because other types of EDS, & other genetic conditions that cause hypermobility, do have tests. According to the Ehlers-Danlos Society, people with hEDS don't need genetic testing unless there's reason to suspect another type of EDS or another genetic disorder. Signs like very fragile skin, easy bruising with unusual scarring or certain family histories can be reasons to look closer.


Why the Difference Matters

Getting the right label isn't just paperwork. It shapes what your care looks like:

  • Some EDS types carry risks, like blood vessel fragility, that need specific monitoring

  • hEDS & HSD often overlap with conditions like POTS & MCAS, which are worth screening for.

  • A clear picture helps your doctors coordinate physical therapy, pain management & specialist care


Want the bigger picture? Read How EDS, POTS & MCAS Are Connected.


Who Can Diagnose hEDS?

The Ehlers-Danlos Society says any doctor can diagnose hEDS & HSD if they have enough experience applying the criteria & ruling out other conditions. In practice, many people see a primary care doctor, a rheumatologist or a geneticist. The key is a doctor who takes the time to do a full history & exam, not a quick flexibility check.


Where PICM Fits

At PICM, we're a primary care home for patients living with Ehlers-Danlos syndrome & hypermobility. Our board-certified family physicians take the time to hear your full history, look at the whole picture & coordinate with your specialists. If you've been told "you're just flexible" but your body says otherwise, we're here to help you sort it out.


Learn more about our primary care approach or how membership works.


Frequently Asked Questions

Does a high Beighton score mean I have EDS?

No. Many people with a high score have no symptoms & no disorder. The Beighton score is one part of the hEDS criteria, not a diagnosis by itself.


Is HSD less serious than hEDS?

It's not a lesser diagnosis. The Ehlers-Danlos Society says the principles of management are the same for both, & care is based on your symptoms.


Is there a blood test for hypermobile EDS?

Not yet. hEDS is diagnosed with the 2017 clinical criteria. Genetic tests exist for other EDS types.


Can my primary care doctor diagnose hEDS?

Yes, if they're experienced with the criteria & ruling out other conditions.


Get Answers From a Doctor Who Has Time to Listen

If your flexibility comes with pain, injuries or symptoms that don't add up, you deserve a doctor who will look at the whole picture.



Sources



This article is for general information only & isn't medical advice. It can't diagnose or rule out any condition. Talk with your doctor about your symptoms.



 
 
 

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