For those who don’t know me, my name is Alex Murray. I’m a Sports and Exercise Podiatrist based in Canberra, Australia with a special interest in Hypermobile Spectrum Disorder (HSD), Hypermobile Ehlers-Danlos syndrome (hEDS) and rheumatological conditions. In any week, about 30-40% of my patient load is with patients we suspect have, or do have, a diagnosed symptomatic hypermobile condition.
In this three-part series, I’m going to go through our latest understanding of the conditions, how we can assess/screen for the conditions and how this changes our treatment plan – including exercise plans, onwards referrals and orthotic prescription.
If you think you haven’t seen hypermobile presentations in your clinic, it’s highly likely that you’ve missed it. Once thought to be a rare condition, occurring in only one in every 5000 patients, new research from the UK shows that one in every 500 people could have HSD/hEDS (Demmler et al, 2019).
What we’re also learning is the amount of co-morbid conditions that present with HSD/hEDS. We no longer see it as primarily a connective tissue disorder, with musculoskeletal manifestations, but as a systemic condition that has widespread autoimmune and systemic implications.
But because of this history, the average diagnostic delay from when someone presents with symptoms is 17.5 years for HSD and 22.1 years for hEDS (Daylor et al, 2025). In one retrospective study of people’s medical histories, 94.4% of people with hEDS have previously been diagnosed with a psychiatric illness, with symptoms of the condition incorrectly attributed to anxiety or depression (Lee and Chopra, 2025). Listening, recognising and appropriately referring for assessment is the most important part, which any clinician can do.
Management for people with HSD/hEDS isn’t just about how hypermobility impacts their musculoskeletal rehabilitation, it’s about developing a multi-disciplinary team, to help them manage all the co-morbid conditions.
As clinicians who see many people with musculoskeletal conditions, the impetus is on us to better understand, identify and help manage these patients.
This is exactly where I started. Seeing more and more patients who were incredibly flexible, had persistent musculoskeletal conditions and a vast array of puzzling systemic conditions.
This can seem overwhelming. The difficult part is while there’s some amazing resources out there to assist patients and clinicians, there isn’t one specific course, resource or guide that helps you understand, assess and manage this condition. So much of it is developed through seeing patients, working with referrers and reading papers.
So, in this series of articles, I’m going to provide an overview of the condition – how we can assess, explain what this condition is to patients, and ultimately improve our management for exercise rehab to foot orthotics.
If you prefer podcasts or want more in-depth information, you can listen to my interview with Taylor Hembling (@hypermobilechiro on Instagram) for her perspective and lots of tips from my own practice.
We used to think that hEDS, along with the other Ehlers-Danlos syndromes, were ultra-rare conditions which come from genetic alterations, and that hEDS specifically was primarily a mutation that resulted in a connective tissue disorder. That meant that people with the condition would present with classical signs such as incredibly elastic skin and contortionist levels of flexibility. So, this is what the diagnostic criteria was designed around.
What we’re learning is that, while hEDS is one type of presentation of the condition, many people who are hypermobile present with a range of hypermobile joints that can be considered normal in 2-52% of the population. This is what we refer to as generalised joint hypermobility (GJH) (Blajwajs et al, 2023). That’s 1 in 2-50 people have some form of joint hypermobility. When viewed in isolation, this presentation wouldn’t raise any suspicion, and it contributes to the long-held belief that joint hypermobility is mostly asymptomatic.
What is hidden, is about 10% of people who present with GJH experience a pattern of systemic co-morbid conditions (fitting with the 1 in every 500 figure). This is what we now identify as HSD/hEDS.
What also reduces recognition is that the condition can present dramatically differently from one person to the next. New work from the Norris Lab highlights the potential for distinct sub-groups of those with HSD/hEDS. One group of patients appeared to experience an autoimmune-driven presentation, with another group being mast cell driven (with connective tissue being secondary), and the final group being primarily connective tissue driven (Griggs et al, 2025, Petrucci et al, 2024).
The involvement of autoimmune, mast cell and general connective tissue can explain the wide range of comorbidities people experience, including:
The significant variation in presence and severity of these conditions means it’s not uncommon that they’re seen in isolation, instead of part of HSD/hEDS. Many patients also don’t realise the link between these conditions and joint hypermobility, and for some, they don’t even have any symptoms associated with hypermobile joints.
There’s also significant overlap between some of these conditions. For example, fatigue is a common feature of POTS and ME/CFS, ASD is often misdiagnosed as anxiety/depression in late-diagnosed individuals, and Fibromyalgia may not be considered in someone with a large history of injuries from hypermobile joints. The outcome is that many people seek management for one condition, e.g. POTS, ME/CFS or ASD, and they may be seen and treated for the condition in isolation, with only partial improvement because of the lack of recognition for other conditions. Often falling into the ‘too hard’ (or sometimes ‘non-compliant’) basket, these patients continue to suffer, their conditions worsen and it can result in a significantly worse quality of life.
I’ve seen many patients deny being flexible/hypermobile because they experience so much muscle tension, failing to realise the tension arises from extra work in their muscles to hold their joints stable. I’ve had patients in my clinic that are so used to holding up their foot arches to counteract the hypermobile flat foot, that I’ve had to take them through relaxation exercises to get them to reduce the tension and properly assess their feet. Many of them either don’t realise they’re doing it, or that it isn’t normal to be holding that much tension in their feet.
With the strong correlation between hEDS/HSD, neurodivergence and poor interoception (the sensory system that allows you to perceive internal physical and emotional states), it’s very common that people with these conditions have difficulty understanding what is occurring in their body enough to explain it, or for some, to know that it’s abnormal.
When combined with social/communication differences associated with neurodivergence, it’s quite common that many symptoms don’t get reported. So much so, some papers have recommended screening for medical conditions such as HSD/hEDS in neurodivergent populations due to the high correlation between the conditions and low symptom reporting (Donaghy et al, 2023, Baeza-Velasco et al, 2025).
Classic examples I’ve seen in my clinic have been:
For podiatrists, and those managing the musculoskeletal components of those with HSD/hEDS, these people can be seen as the ‘tricky’ patients. Often because it’s incredibly common that they’ll present to us experiencing significant symptoms and pain, with limited abnormal clinical, pathological and radiological findings which leave us confused and the patient feeling unheard.
If we fail to recognise underlying HSD/hEDS, it’s not uncommon for our treatments to cause flare-ups of other conditions (for example too long a period of standing for those with POTS, or too much exercise for those with chronic fatigue). Or our treatments can be too onerous to follow with the presence of other symptoms.
I’m using both terms together, because practically for us, there is limited difference. There is no difference in management for either condition, the only difference is the diagnosis.
Those with hEDS are people with generalised joint hypermobility and who meet the strict 2017 criteria for diagnosis. This primarily focuses on the condition as a connective tissue disorder and excludes other connective tissue disorders. This criterion was deliberately tightened to make hEDS a more homogenous group for research.
Those with HSD, previously known as Joint Hypermobility Syndrome (JHS), are those with symptomatic joint hypermobility but who don’t meet the full hEDS criteria. They can present with generalised hypermobility (G-HSD), localised (L-HSD) to a single joint or group of joints, peripheral (P-HSD) limited to hands and feet, or historical (H-HSD) for those with a reported history of hypermobility and current symptoms, with no present joint hypermobility due to age related changes.
Because those with HSD do not meet the stricter diagnostic criteria for hEDS, they can mistakenly be considered ‘less symptomatic’ than people diagnosed with hEDS. However, evidence suggests there is limited impact in symptoms, function or management between the two groups, with HSD and hEDS often indistinguishable in studies (Copetti et al., 2019; Molander et al., 2020; Demmler et al., 2019). In fact, the paper that introduced the term HSD explicitly states that HSD and hEDS should receive the same symptom-based management, as the distinction was created for research stratification rather than prognosis (Castori et al., 2017).
With many of these patients turning up to our clinic room – perhaps concerned about their flat feet, experiencing lots of tiredness/fatigue in their legs, or repeated injuries and sprains – we have a huge opportunity to help! Screening and recognising HSD/hEDS and co-morbid conditions, providing more appropriate management, connecting them with a multi-disciplinary management team and potentially, changing the trajectory of someone’s whole life.
So, let’s go through what we can do, starting with screening.
Screening for these conditions can start before the patient even enters the room. In my intake paperwork, I include questions about:
What this means is that I can look at the form and immediately recognise any patterns that lead me to think I should screen for joint hypermobility. It’s not uncommon for someone to have some diagnoses, for example POTS and ADHD which have received a lot more recognition recently, but the patient may not have made the link between these symptoms and underlying HSD/hEDS.
Option 1: The Beighton score
When they’re in the room, the Beighton score is a quick first line screening tool. It’s a test of nine joints, a point for each joint that is hypermobile, with children (pre-puberty) with a score >= 6/9, adults (post-puberty -> 50yo) scoring >=5/9 and adults (over 50) >= 4/9 being positive and requiring further assessment.
Common issues with the Beighton score are that it is a narrow set of joints, primarily in the upper limb and is misunderstood to be diagnostic of HSD/hEDS. It’s very possible for someone to have a negative Beighton score with HSD/hEDS and conversely a positive Beighton score, with no other symptoms of joint hypermobility. (Up to 36% of the population have generalised joint hypermobility (GJH) identified by the Beighton score, with/without HSD/hEDS).
Option 2: 5 Part Questionnaire (5PQ)
You can follow-up the Beighton score with a 5 Part Questionnaire (5PQ), which is a 5 question self-assessment tool that has high sensitivity and moderate specificity for identifying generalised joint hypermobility. It’s a score out of 5, with each ‘yes’ answer contributing 1 to the score and a score >= 2 is considered a positive test for GJH.
Answering yes to 2 or more of these questions suggests hypermobility (sense 85%, spec 90%).
What we know is that joint flexibility naturally reduces with age, however 5PQ can identify older individuals who have had generalised hypermobility but no longer satisfy the Beighton’s score. This has been useful in my practice, having recently got a positive score in someone who was 76-years old with a long history of fatigue and heart palpitations.
Option 3: Lower Limb Assessment Scale and Upper Limb Hypermobility Assessment Tool
A more detailed assessment is the Lower Limb Assessment Scale (LLAS) and Upper Limb Hypermobility Assessment Tool (ULHAT), which both are validated tests of 12 joints in the upper or lower limb, with a score of 1 for each joint identified as hypermobile. Scores >= 7/12 in either are indicative of upper or lower limb hypermobility. It’s possible to have hypermobile joints only in the upper or lower limb, so a positive LLAS or ULHAT is not indicative
I personally find the LLAS to be a fantastic tool in practice, because it doesn’t just show us if they’re hypermobile, but also which joints are hypermobile. Examples include:
The extra extensibility of ligaments in patients with joint hypermobility means that there’s less tension within the ligament during normal ranges. Mechanoreceptors that are tuned to fire at specific tensions may only fire in extreme positions. This leads to a significant reduction in proprioception and therefore joint position sense. Coupled with the possibility of a history of micro-sprains causing injury to the ligament and mechanoreceptors, we see a large amount of people with joint hypermobility and HSD/hEDS have issues with balance.
While balance tests, designed to test patients’ proprioception, is one of the most common tests I’ll do in initial assessments, it’s got extra importance when seeing someone with HSD/hEDS.
The tests I find useful are the Balance Error Scoring System (BESS) and Star Excursion Balance Test (SEBT).
The BESS is a test of static balance that focuses on the foot and ankle, which can be made shorter using the mBESS protocol or simply a single leg balance test using the same testing protocol. It’s a quick test that gives you a score which you can compare against (unfortunately quite poor) normative data. But it’s also worthwhile to look at the foot and ankle during testing and see how the patient wants to move. It’s not uncommon to see good balance in patients with flat feet, by them staying at end ROM pronation. When placed in any other position they can struggle, which shows why they can struggle when walking, jumping, landing and having to move through any other range.
The SEBT is a dynamic balance test that challenges the whole lower limb. Therefore, lower scores can come from things outside of proprioception – including reduced ankle joint range, reduced ankle strength and reduced gluteal strength. It’s been shown to predict future risk of injury in conditions such as ankle sprains, so it is incredibly useful in this population.
When you combine the SEBT and the BESS, I find I get a good idea of whether foot and ankle proprioception is a major contributor to a lower score, or whether there’s other factors we need to look for and address.
I’ll also often do objective strength testing with a dynamometer for ankle inversion/eversion and intrinsic foot strength. We’ve got limited data on what is appropriate foot/ankle strength in non-hypermobile populations and no data on hypermobile individuals. But what I’ve found clinically is that people often fall into two groups.
The first and larger group will have scores >25-30% of their body weight on inversion/eversion. It is validating for the patient to see they aren’t weak and it is indicative that tightness, fatigue and balance aren’t likely due to reduced strength, but increased workload managing hypermobile joints.
The second group is people who are more physically disabled by their symptoms, less active and score closer to 10-15% of their body weight, indicating deconditioning being a big component of their presentation.
What’s interesting clinically – and I’d be very interested to see some data on, to ascertain whether this is true or not – is that most people in this population have reduced intrinsic foot muscle strength. Remember I mainly see those with foot pain, fatigue, injuries and so forth.
I have a couple of theories including:
I find that intrinsic foot strength is a good thing to test and discuss with my patients. Especially as intrinsic foot muscle exercises are very low effort/fatigue and easy to implement, making them easy to do for most patients, even those incredibly fatigued. This can have a positive impact on balance/reduce falls risk and sport performance.
For those who report symptoms on their intake form (or when questioned in the room), we can also screen on whether they require further assessment of those co-morbid conditions. This is generally through questionnaires that are validated for these conditions.
Questionnaires we can use are:
When you aren’t sure if there’s a co-morbid condition, or don’t feel comfortable doing these more in-depth screenings, you can refer to the patient’s GP for further assessment. While some GPs may not be as familiar with hypermobility syndromes, there’s no specific medical management for HSD/hEDS as an overall condition, only the individual co-morbid conditions.
So, raising your suspicion of the co-morbid condition/s for screening is the point of difference you can make with the referral.
Where I’ve had the most issue with referring a patient to their GP for further assessment is when they return disillusioned after the doctor spent most of the time focusing on the ‘wrong’ symptoms/conditions. Or to put it another way, the doctor’s goals were different from the patient’s goals.
From the patient’s perspective, going to and paying for any health service, whether it be medical or allied health, and not having your concerns and goals understood can lead to many people disengaging with parts, or all, of the healthcare system. Conditions can vary in severity and impact on someone’s life, so what can seem medically the most important, may be the least impactful or not of concern.
From the clinician’s perspective, seeing a patient with a wide range of symptoms can be confusing and overwhelming. It can be difficult to know where to start, especially when you’ve got such a small amount of time and are concerned about missing something potentially quite harmful.
In these situations, I’ll provide people with a link to The Spider Tool questionnaire. Based on their answers, a spider chart will provide a visual representation and quantification of which symptoms/systems are currently most impactful on their life and therefore warrant more immediate attention. This is a great report that they can then take to their GP or specialist to help guide their care. It can also be repeated over time as symptoms, their impact and therefore priority changes.
Output from The Spider Tool provides a visual representation and quantification of which systems are most impacted.
Now you’ve got an overview of the condition and screening, you’re prepared to start implementing this knowledge into practice.
Start small. When you suspect someone may be hypermobile, ask those extra couple of questions. You don’t have to screen them straight away. Book them in for a longer review, plan out the screening tools you want to do and have time to practice beforehand.
You can also have print outs of the screening tools ready to pull out and work through. I still do this in my practice and it’s so helpful to not miss anything.
In the next issue of STRIDE, I’ll be going through how HSD/hEDS alters how the diagnosis or suspicion should change your management and how you can explain the condition and its impacts to patients.
The final article will focus on specific podiatric management, including orthotic and exercise prescriptions.
References:
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