Are hypermobility-related words confusing you? Can’t tell your HSD from hEDS? Well, you’re not alone!
One of the most common questions I get from my patients is “What is hypermobility?” even after receiving a diagnosis of HSD/hEDS. Although this confusion is certainly nothing for the patient to feel bad about, what I find concerning when a patient asks me this is that they have clearly been diagnosed with something that they either haven’t had explained to them or that they haven’t had explained to them very well.
Defining Important Hypermobility Terms
Here are a few of the terms that patients ask me about the most:
- Hypermobility
- Generalised Joint Hypermobility
- Hypermobile Ehlers-Danlos Syndrome
- Hypermobility Spectrum Disorder
1. HYPERMOBILITY
From a medical perspective, a joint is considered to be hypermobile if it exceeds the accepted normal range of motion for that joint.
For example, the generally accepted Range of Motion (ROM) for wrist extension is 60 degrees. If you have more than 60 degrees of wrist extension then that joint would be considered to be hypermobile in that ROM.
Unfortunately “hypermobility” is often used as a catch-all term for people who display signs of what would be considered to be Generalised Joint Hypermobility (we’ll talk more about that in a minute). I want to stress that I use the word “hypermobility” on social media posts to make sure that hypermobile people who cannot access a diagnosis or even a confirmation of having Generalised Joint Hypermobility do not feel excluded. A diagnosis is a privilege as not everyone can access one, and this is why I use the broad term “hypermobility” routinely in my social media content.
That being said, I occasionally see patients who have been told that they are simply “hypermobile” by their doctors and other healthcare providers in clinical settings. Unfortunately this is a relatively meaningless term in and of itself, as it does not describe how their hypermobile tissue presents from a medical perspective.
If you’re leaving a clinic office being told “You’re hypermobile,” I strongly recommend trying to get more information from the healthcare provider regarding what exactly they mean by that and, if they can’t offer any further information, a referral to someone who can.
Even if the healthcare provider cannot diagnose you with Hypermobility Spectrum Disorder (HSD) or Hypermobile Ehlers-Danlos Syndrome (hEDS) as they are not a medical doctor, they might be able to help you determine if you demonstrate what’s referred to as Generalised Joint Hypermobility (GJH).
2. GENERALISED JOINT HYPERMOBILITY (GJH)
At the time of writing this post, whether or not someone has GJH is generally determined by their score on the Beighton Scale (a 9-point scale consisting of a series of movements to assess hypermobility). Typically a scale of equal to or greater than 4 is considered to be indicative of GJH, but it’s important to note that some clinicians will differ in what they consider to be the cut-off for GJH. As well, the 2017 hEDS Diagnostic Criteria has age and sex-specific cut-offs for the Beighton Scale when used as a component of its hEDS diagnostic criteria.
It’s important to note that from a medical perspective GJH is not a connective tissue disorder (like HSD, hEDS, Marfan’s Syndrome etc.). It simply describes how hypermobile connective tissue presents in someone’s body. In theory, someone could have GJH and not have a diagnosable connective tissue disorder. \
3. HYPERMOBILE EHLERS-DANLOS SYNDROME (hEDS)
hEDS is one of 13 types of EDS. The Ehlers-Danlos Syndromes are a group of 13 types of heritable connective tissue disorders. Although they have some features in common (e.g. joint hypermobility, skin hyperextensibility, and tissue fragility) they have distinct features and vary both across types and even between individuals who have the same type.
Although hEDS is the most common type of EDS (with the prevalence of hEDS thought to be approximately 1 in 5001), it remains the only type of EDS for which no known genetic marker has been identified. However, genetic testing to rule out other connective tissue disorders (including other kinds of EDS) is common.
Unlike GJH, which is not a disorder and which only describes connective tissue in the context of joints, hEDS is a connective tissue disorder with multisystem effects. People with hEDS report a variety of symptoms, ranging from joint issues to gut issues to heart issues and more. In fact, it is the variability of how the symptoms of hEDS present between individuals that contributes to it being so poorly understood by many healthcare providers. Currently the 2017 hEDS Diagnostic Criteria are used to diagnose patients with hEDS, however occasionally there are patients who are hypermobile and struggle with chronic symptoms, but for whom no diagnosis of a known connective tissue disorder (including hEDS) seems to fit. These patients are often diagnosed with Hypermobility Spectrum Disorder (HSD).
4. HYPERMOBILITY SPECTRUM DISORDER (HSD)
HSD is the diagnosis often given to patients who are hypermobile and symptomatic but who do score high enough to qualify for a diagnosis of hEDS according to the 2017 hEDS Diagnostic Criteria.
Often these will be patients who present with more hypermobile joints in their lower extremities (feet, ankles, knees, hips) and axial joints (spine and jaw) as those joints are not proportionally represented in the Beighton Scale (you can listen to my podcast where I discuss the Beighton Scale HERE).
There is a common misconception that HSD is “less bad” than hEDS, and this is resoundingly not the case despite the popularity of this belief. I routinely see patients with HSD who have worse symptoms than a patient with hEDS. The severity of a hypermobile person’s symptoms really depends on how it presents in that individual.
SUMMARY:
Hypermobile = a term to describe a joint with a range of motion greater than the accepted normal range
GJH = a term for when enough of your joints are hypermobile that your body is viewed as being generally hypermobile
hEDS = you fulfil the 2017 hEDS Diagnostic Criteria
HSD = you are hypermobile and symptomatic, but do not fulfil the 2017 hEDS Diagnostic Criteria or other diagnostic criteria for known connective tissue disorders
And remember, informed patients have better clinical outcomes. So whether it’s with me or another healthcare provider, keep asking questions and stay curious!
