Hypermobility impacts an estimated 20% of the population. For some, it may only mean that they have an easier time achieving certain positions in dance or gymnastics, which might be a good thing.

For others, it can result in severe disability. For many, they will fall somewhere in between. To make it even more confusing, it can fluctuate in severity even in the same person.

Even experts have a difficult time agreeing on where the cutoff is between a “benign” joint hypermobility, symptomatic hypermobility, a diagnosis of hypermobility spectrum disorder (HSD), or even hypermobile Ehlers-Danlos Syndrome (hEDS). The diagnostic criteria and vocabulary regarding hypermobility have been reworded multiple times, and many still feel they don’t adequately capture or reflect what is seen in the impacted population.

Very little on hypermobility or connective tissue disorders is covered in most medical school curriculums, which means most physicians have little knowledge of it unless they’ve taken a special interest or obtained additional training. This can make navigating hypermobility extremely challenging for anyone who suffers from it. 

So to start, how would you know if you were hypermobile? Well, there’s a “test” that can be a good starting point. It’s called a Beighton score. Below is a video to test yourself. Below is a little video we made showing someone who scores 9/9 on the Beighton:

The argument some will make about the Beighton is that it only looks at hypermobility in selected joints. It neglects the shoulders, neck, and other joints that can commonly be an issue in the hypermobile population. It also doesn’t consider the other diagnostic criteria for hEDS or HSD. It is, however, a starting point for discussion with a medical provider if you feel you may be hypermobile. 

In just the last year, hypermobility has been in the headlines more than ever, which is a good thing! When conditions are brought to the attention of the general public and medical providers, it results in increased awareness and, often, an increase in funding for research. 

Some famous people have shared their diagnosis of hEDS or HSD recently, and this is a win for the hypermobile population. The following are just a few who have made headlines recently for disclosing their diagnosis: 
 
Halsey, singer/songwriter
Billie Eilish, singer 
Jameela Jamil, British actress 
Lena Dunham, actress
Sia, Australian singer/songwriter

Because we have connective tissues in every system of the body the impacts of hypermobility disorders are very widespread, and it can take a trained provider to connect all the dots. Other issues that can be signs of a more significant issue such as a connective tissue disorder include hernias, pelvic organ prolpase, tendon and ligament injuries, joint subluxations or dislocations, soft skin, stretchy skin, poor wound healing, gastroinstinal issues,  just to name a few! 

People often ask what they should do if they think they might be hypermobile. A great starting point could be bringing a print of the test and the diagnostic criteria and taking it to your appointment. 

Geneticists are usually the most familiar with diagnosing these conditions, but some rheumatologists, family medicine, orthopedic, or other specialties may be familiar, and comfortable with diagnosing. You can always call and ask a provider’s office if they diagnose/screen for hypermobility disorders or EDS. 

Chronic pain is a common occurrence among hypermobile individuals, and strengthening the muscles surrounding the joints can be incredibly helpful not only for chronic pain but for a wide range of symptoms. Strength training can help everything from digestion to circulation to sleep. Different body systems are frequently looked at in isolation in our medical system. Still, in reality, they are all interconnected, and a change in one system will impact them all. 

As someone with hypermobile Ehlers-Danlos Syndrome myself, I’ve found taking a holistic approach that addresses all systems of the body to be the most effective. Optimizing sleep, digestion, nutrition, exercise, stress management, and other areas has helped me feel and function the best. 

Exercise with hypermobility can be challenging, and often people get injured trying to exercise, even when working with a personal trainer. Taking a slow, progressive approach utilizing specific methods has worked amazingly well for us and thousands of others who have followed our exercise program. 

If you’re interested in more information about hypermobility, getting diagnosed, what our journeys were like, how it impacts people, or what to do about it, you can sign up here for a full list of all of the resources we’ve created, including blogs, podcasts, etc. 

Katie Goss, Co-Founder

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