WHAT IS HYPERMOBILITY SPECTRUM DISORDER?

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Do you have a lot of flexibility? Know someone who does? Most people can think of a friend who could quickly drop into the splits or who could always go very deep into their yoga poses with no effort or practice. Flexibility is something that some people work at for years and is often rewarded in arts like ballet and dance and in athletes like yogis or gymnasts. It makes for eye-catching Instagram posts and usually results in people wishing they had that amount of flexibility. But what many people do not realize is that there can be many negative connections that come along with being very bendy! 

That’s right. Some disorders share a common feature of hypermobility. What is hypermobility? The definition is “joints that move beyond their normal range with little effort.” Simply stated- it’s people who are extra bendy. This doesn’t necessarily mean Cirque de Soliel bendy, although many of those individuals are also hypermobile. 

I’m going to dive in with some abbreviations and medical terms here, so stick with me but don’t stress about understanding all of the terms or remembering them! 

Hypermobility Spectrum Disorder, or HSD, was formerly referred to as Benign Joint Hypermobility Syndrome (BJHS) or Joint Hypermobility Syndrome (JHS). Why the change? Well, hypermobility disorders are gaining a bit of acknowledgment in the medical community, FINALLY! And part of that process has included updating terminology and guidelines for diagnosing and treating these conditions. So it is now referred to as HSD, and this is diagnosed when other conditions have been ruled out.  

It used to be viewed as something entirely separate from Hypermobile Ehlers Danlos Syndrome but now is seen on more of a continuum with hEDS. I’ve heard it described as more of a wheel even than a straight line, and I think that’s an appropriate way of describing it since there is so much crossover in symptoms. The presentation of hypermobility or EDS can be highly variable from person to person. 

TYPES OF HYPERMOBILITY

Some people will have asymptomatic hypermobility. This means they are hypermobile but don’t have any other symptoms. For those folks, hypermobility is not a big deal. It may even benefit them somehow, like if they are dancers. 

Other people will have symptomatic hypermobility. Now, this can mean joint dislocations, subluxations, chronic pain, and many other symptoms. Did you know that we have connective tissue throughout our entire body? It’s the variation in connective tissue that results in genetic hypermobility. And the symptoms that can come along with hypermobility can come from any of the systems in the body. For example, GI disturbances, dental problems, low blood pressure, dizziness, allergies, inflammatory responses, anxiety, etc., can all be linked to hypermobility. Those symptoms can also be entirely unrelated to hypermobility. Are you confused yet? This can be confusing, and many medical providers have very little knowledge of this topic. Let’s go over a few terms and types of hypermobility: 

Generalized joint hypermobility (GJH) means widespread hypermobility throughout the joints in the body. 

Historical joint hypermobility (HJH) means you used to be hypermobile, but as you’ve aged, you’ve lost some of the hypermobility. (This is not an uncommon occurrence as we age). 

Peripheral joint hypermobility (PJH) refers to hypermobility in the peripheral joints meaning hands, fingers, feet, and toes.

Localized joint hypermobility (LJH) refers to a single joint or group of joints. This could result from an injury or repeated injury- for example, someone with repeated ankle sprains who now has a hypermobile ankle. 

hEDS (HYPERMOBILE EHLERS DANLOS) 

So at what point do you cross over the imaginary threshold from being considered a diagnosis of HSD (hypermobility spectrum disorder) to being diagnosed with hEDS (hypermobile Ehlers Danlos Syndrome)? Well, that’s complicated and somewhat subjective. The diagnostic criteria for hEDS have been updated a few times, and there’s still some debate on whether it’s resulting in the most accurate diagnosis. More importantly is the understanding that HSD and hEDS can share many of the same symptoms throughout the body systems and should essentially be treated the same, which is to look at the individual and treat them accordingly based on the issues they are navigating. 

The authority on diagnosis is usually a geneticist, but some EDS-aware physicians like rheumatologists or cardiologists may diagnose in certain situations. Unfortunately, the medical community still has a long way go to educate practitioners on hypermobility syndromes. 

Because there is not yet a gene identified for hEDS, it’s not a simple yes or no diagnosis but rather a process of gathering information from a wide variety of sources and making an educated assumption about where that person falls. This can change over time as more things may also crop up for a person. 

HYPERMOBILITY- A COMMON ISSUE WITH DIAGNOSIS

There are a few reasons that people aren’t diagnosed with hypermobility. First and foremost is the lack of education and awareness of how hypermobility can pose problems for people and how it can impact other body symptoms. Secondly is the way our medical system is designed. There are specialists for each body system, which is great because it allows them to get highly specialized and specific, and they are experts in their specialty. But this is not great because there is a disconnect between the specialties and the overall bigger picture of what is going on with a person. So this means that you either need an excellent primary care physician who can acts as the “quarterback” for your care and really “run the plays,” or (ideally AND) you need to keep really great records and take control and ownership of your health and healthcare. 

Suppose you are hypermobile and have no issues with it- amazing! If you are hypermobile and experience a lot of chronic pain, maybe GI issues, anxiety, food intolerances or allergic responses, subluxations, fatigue, dizziness, sleep disturbances, prolapses, hernias, easy bruising, etc., there’s a chance that there’s an underlying factor that is connecting all of those- your connective tissue integrity! 

I’m all for people googling and educating themselves, and I think they should read information from reputable sources. This is the age of information! But take a word of caution here because you can quickly go down a dark rabbit hole doing that with hypermobility and EDS. It doesn’t need to be all doom and gloom! I have hEDS myself, as does Andrew. I went down a deep dive of reading medical journal articles, research, books, and every bit of information I could find. I joined support groups, and it was overwhelmingly negative. 

I was flooded with statements about what my future would be like, all the things I couldn’t do. I felt lost and sad, and anxious. Even as a registered nurse, I felt alone navigating the medical community because the physicians I spoke to knew nothing about it and responded to me like I was crazy. When I was finally diagnosed, I went home and cried because I knew I wasn’t crazy. It explained so many things about my body and health. 

Some of the recommendations made no sense to me whatsoever. Something like, “You shouldn’t lift weights or run anymore,” “no more repetitive movements like cycling or you will wear out your joints,” and “swimming is probably best for you” didn’t sit well. I knew that lifting weights and strength training always made me feel better. It was like I could feel myself being held together by the muscles, and the stronger they were, the better I felt. I was often injured when training though and had many setbacks when working with trainers or taking classes. So I dove into learning everything about biomechanics, pilates, posture, and alignment and began applying it to myself with excellent outcomes. 

Andrew and I took our lifelong passions for movement, fitness, and wellness and incorporated them into helping people worldwide with chronic pain. Do you know what we started to learn? Our method was incredibly effective, and it was great for people with hypermobility (which makes sense since it’s how we live our lives and what has worked for both of us). We are so thrilled to have built a unique new program specifically for hypermobile individuals where we will dive deep into all the exercises, our method, our personal experiences, expert interviews, tips and tricks, the anatomy art you’ve grown to love, and best of all… a POSITIVE, authentic, safe, and welcoming community full of other bendy folks from around the world. *Holla to our zebra friends!*

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-Katie Goss at Whealth

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