Joint Hypermobility Syndrome (Ehlers-Danlos) Causes and Treatments

Joint Hypermobility Syndrome Ehlers-Danlos

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What Is Joint Hypermobility Syndrome?

Because Joint Hypermobility Syndrome encompasses a range of different Syndromes, we will talk mostly about it as the older Ehlers-Danlos Syndrome (EDS) even though the names are becoming interchangeable:

Experts now think Joint Hypermobility is likely the most common and the least recognized heritable connective tissue disorder in the world. As the number of types of hypermobility disorders has been growing, the NIH has produced an entire online book to help patients and doctors distinguish between the subtypes of the syndromes.

Because the basic criteria of these two Syndromes may not be familiar to many readers, here are the basic guidelines (adapted from the Hypermobilty Syndromes Association) for determining if you have either illness.

The first thing you need to do is figure out your Beighton Score. All that requires is a little physical movement (or remembering what you can do).

The Beighton score is calculated as follows:

  • One point if while standing forward bending you can place palms on the ground with legs straight

  • One point for each elbow that bends backwards

  • One point for each knee that bends backwards

  • One point for each thumb that touches the forearm when bent backwards

  • One point for each little finger that bends backwards beyond 90 degrees.

What is your Beighton score?

Major Criteria of Joint Hypermobility Syndrome.

  • A Beighton score of 4/9 or greater (either currently or historically)

  • And/Or Joint Pain for longer than 3 months in 4 or more joints

Minor Criteria

  • A Beighton score of 1, 2 or 3/9 (0, 1, 2 or 3 if aged 50+)

  • And/Or joint pain (> 3 months) in one to three joints or back pain (> 3 months), with bone spurring.

  • Dislocation/subluxation in more than one joint, or in one joint on more than one occasion.

  • Soft tissue chronic swelling > 3 months.

  • Marfanoid appearance (tall, slim, arms longer than height, legs longer than torso, long slim fingers).

  • Abnormal skin: tear marks, overly flexible, thin, easily scarred.

  • Eye signs: drooping eyelids or shortsighted or oddly slanted.

  • Varicose veins/hernias/prolapses.

Another quick tool to use is the hypermobility questionnaire. An answer of ‘Yes’ to 2 or more of the questions gives a very high prediction of the presence of hypermobility. Again, like the Beighton score, this makes it more likely but does not mean that the person absolutely has a Hypermobility Syndrome.

Here are the hypermobility questionnaire questions:

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

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

  3. As a child did you amuse your friends by contorting your body into strange shapes OR could you do the splits?

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

  5. Do you consider yourself double-jointed?

The difficulty in assessing an illness based on physical symptoms is that many people may meet some of the criteria but not others. So while the awareness of joint hypermobility is expanding some experts think that the high numbers cannot be trusted because only some of the included patients truly have the syndrome.

Even if the numbers are exaggerated, they are truly stunning. Joint hypermobility was found in one in four people, only about one in ten men but almost one in three women. People with joint hypermobility weren’t more likely to get injured but were more likely to have sprains, back pain, and stress fractures.iii

The number of individuals with hypermobility is much higher in some professions. In a group of ballet dancers the majority had joint hypermobility. Teachers of ballet were three times as likely as their students to have joint hypermobility.iv In patients at rheumatology or physical therapy clinics the chances of finding joint hypermobility is much higher than in the general population and is even higher if the patients are minorities.v

Given the extent to which Joint Hypermobility Syndrome/EDS causes pain and suffering to a substantial portion of the population, almost nothing is known about it and few treatments are available. Let’s explore why.

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