When Hypermobility Hurts: hEDS and HSD
As a physiotherapist, I regularly see patients with joint hypermobility - the ability to move joints beyond the normal range of motion. Even though only a relatively small percentage of the general population is hypermobile, they may represent 30-40% of people seeking help for pain or musculoskeletal conditions [1,2]. When hypermobility hurts, it’s a good idea to get it checked out.
You may not even realize that hypermobility is contributing to your pain and other symptoms. Many hypermobile people come in to see us with pain in multiple body regions and may also have other health issues related to their hypermobility, but may not have received, or even known to seek out a diagnosis.
While being flexible can be an asset in some activities, and is completely healthy for most people, when hypermobility hurts, it may also be linked with a range of other symptoms (e.g., gut, heart/vascular, skin) - just part of a larger health condition.
BRISBANE PHYSIOS SKILLED IN HYPERMOBILITY
Rachel, Millie, and Tyler are our Hypermobility Physiotherapists here at PhysioTec, offering expert care for those living with hypermobility.
They are experienced physiotherapist with a special interest in hypermobility, providing thorough assessments and personalised treatment plans tailored to your unique needs. Their approach focuses on improving posture, strength, and joint control to reduce pain and enhance confidence in movement. They also incorporate Real Time Ultrasound for deep muscle training and offer individual and group exercise classes.
Working closely with your GP and other healthcare providers, Rachel, Millie, and Tyler deliver comprehensive care to support your goals and help you move more freely.
Book today and take the next step towards a stronger, more confident you.
This blog will cover the following topics on Scar Management:
- What is Joint Hypermobility?
- How do you know if you have Joint Hypermobility?
- Limb specific measures of joint hypermobility
- When hypermobility hurts – hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorders
- Measuring the impact of hEDS and HSD
- Living with hEDS and HSD – what can be done
What is Joint Hypermobility?
Joint hypermobility is the term we use to describe joints that are able to move through a greater range than we consider typical – sometimes people with joint hypermobility refer to themselves as being ‘double-jointed’.
It is important to understand that joint hypermobility simply refers to where someone sits on the normal mobility spectrum – with stiff joints at one end and extra-bendy joints (joint hypermobility) at the other end of the spectrum.
Joint hypermobility also comes in many forms [3]:
- Generalised joint hypermobility – lots of extra-bendy joints
- Peripheral joint hypermobility – extra-bendy joints in the feet and hands only
- Localised joint hypermobility – present in only 1-2 joints
- Historical joint hypermobility – past experience of hypermobility that is no longer present
Hypermobility itself is NOT a disease or a diagnosis, but in some people it may be associated with pain and a range of other signs and symptoms. When hypermobility hurts, we use diagnostic terms such as hypermobile-Ehlers Danlos Syndrome or Hypermobility Spectrum Disorder – read more on these below.
Find our physio clinic in Salisbury, Brisbane
Our Brisbane Physiotherapy Clinic, services areas including: Salisbury, Brisbane, Tarragindi, Mount Gravatt, Holland Park, Rocklea, Yeronga, Annerley, Camp Hill, Carindale, Coorparoo, Salisbury, Sunnybank, Greenslopes, Seven Hills, Acacia Ridge, Indooroopilly, Woolloongabba, etc.
Because of our expertise in hip conditions, hypermobility, sports injuries, and dance injuries and performance, we also have people visiting us from all over Queensland, Australia and even international visitors. We also have a telehealth service for remote patients.
Are you hypermobile?
Need help with diagnosing your condition, or getting on-top of your pain?
Book in with one of our Hypermobility physios, and let them help you achieve the best outcomes from your rehab.
How do you know if you have Joint Hypermobility?
Often our patients with joint hypermobility will recall amusing party tricks they were able to perform as a child or demonstrate contorting their body into bone-defying shapes. This would increase our suspicion of generalized joint hypermobility.
But as I mentioned above, some people may have excessive joint range in only one or two joints. This is something that might have been present since childhood or can be ‘acquired’ after injury or surgery for example. This extra mobility may cause pain and instability in those joints.
Read on to find out about the different tools we have for identifying historical, generalized or more localized joint hypermobility.
The 5 Point Questionnaire for identifying joint hypermobility
Can you now (or could you ever) place your hands flat on the floor without bending your knees?
Can you now (or could you ever) bend your thumb to touch your forearm?
As a child did you amuse your friends by contorting your body into strange shapes or could you do the splits?
As a child or teenager did your shoulder or kneecap dislocate on more than 1 occasion?
Do you consider yourself double-jointed?
If you answered ‘Yes’ to 2 or more of these questions, there is a high likelihood that you have joint hypermobility [4]. However, it is best that this quick screening tool is combined with physical assessment.
The Beighton Score for identifying generalized joint hypermobility
The 9 point Beighton score is one of the most common assessments performed for generalized joint hypermobility. It looks at the mobility of a selection of joints and provides a score that estimates total body hypermobility [5].
Traditionally a score of ≥4/9 has been used to identify people with generalised joint hypermobility.
However, a recent study of the Australian population found that using such a cutoff ≥4/9 on the Beighton Score got it wrong 60% of the time!
They showed that cut-offs needed to be more specific for different biological sexes and ages [5]. At PhysioTec, we consider these factors when interpreting your Beighton Score, to ensure you receive an accurate answer as to whether you have hypermobility.
The other drawback with the Beighton Score is that it only tests a relatively small number of joints and can miss hypermobility in other commonly affected areas like the shoulders, hips, and ankles [4], and therefore more localized forms of hypermobility.
Limb specific measures of joint hypermobility
To get an even more comprehensive picture, physiotherapists with more extensive knowledge of hypermobility, like the PhysioTec team, can use additional limb specific tools, including:
The Lower Limb Assessment Score:
In this hypermobility scoring system, we assess specific joints or joint groups in the legs and feet [6]. The Lower Limb Assessment Score for hypermobility includes multiple tests for the hips, knees, ankles, midfoot and toes.
The Upper Limb Hypermobility Assessment Tool:
In the Upper Limb Hypermobility Assessment Tool, we assess specific joints or joint groups in the arm and hand [7], including the shoulder, elbow, wrist, thumb and fingers.
At PhysioTec, our hypermobility physios can use all of these tools together to give us the most accurate picture of your joint hypermobility, whether it is historical, generalized or more localized.
Not sure if you are hypermobile, or having symptoms related to being bendy?
Book our HYPERMOBILITY ASSESSMENT, and let one of our hypermobility physios, help with your condition, and provide you with the appropriate course of action to help you get back to doing the things you love!
When hypermobility hurts – hypermobile EDS and Hypermobility Spectrum Disorders
When hypermobility hurts, we investigate further, to see if you might have hypermobile Ehlers Danlos Syndrome or other inherited conditions associated with hypermobility, or other Hypermobility Spectrum Disorders.
What is hypermobile-Ehlers Danlos Syndrome?
Hypermobile-Ehlers Danlos Syndrome (hEDS) is an inherited connective tissue disorder that contains joint hypermobility as a part of its diagnosis, alongside skin hyperextensibility (extra-stretchy skin) and tissue fragility (injure more easily – slower to heal).
Multiple other body systems can also be involved, because connective tissues are spread throughout our bodies. They help connect, support and bind together our bones, joints and organs. People with EDS have alterations in the genes that produce collagen, a major component of connective tissue.
The variable impact on connective tissues results in a wide range of symptoms experienced by individuals with hypermobile EDS. Although joint hypermobility is the most obvious feature, the following symptoms are commonly present to varying degrees [3]:
1. Musculoskeletal system:
Joint pain and instability, tendon pain, muscle weakness, low bone density
2. Nervous system:
Many experience chronic nerve pain, fatigue, problems with proprioception (body awareness), attention and sensory deficits.
3. Cardiovascular system:
Some people experience dizziness, fainting, or rapid heartbeat, especially when changing positions, and may have difficulty maintaining a standing position for longer periods (orthostatic intolerance).
4. Digestive system:
Symptoms like reflux, bloating, or constipation are common.
5. Skin:
Increased elasticity or easy bruising or scarring may occur, and wounds may take longer to heal.
6. Mental health:
Anxiety and depression are also more common in those with hEDS.
Diagnosing hypermobile Ehler Danlos Syndrome
There was previously a lot of inconsistency in the diagnosis of hEDS, as there is unfortunately no genetic test for this form of Ehlers Danlos Syndrome. However it 2017, new international guidelines were published to allow consistent diagnosis of the condition [3]. Using the latest criteria, cases of h-EDS can be diagnosed with all three of the following:
- Generalized joint hypermobility
- Presence of two or more of
- systemic signs or symptoms (e.g., skin, gut, vascular problems)
- a family history of hEDS, and
- musculoskeletal complications (e.g., chronic pain, joint instability)
- Absence of other inherited and acquired connective tissue disorders [8].
At PhysioTec, we use this detailed system to step through all the possible signs and symptoms you may have that fit the criteria for hypermobile EDS.
It is also important to be aware of other genetic conditions with joint hypermobility as a major feature. These include other forms of Ehlers Danlos Syndrome, Marfan syndrome, Loeys–Dietz syndrome, Beals syndrome, arterial tortuosity syndrome, lateral meningocele syndrome, and various hereditary cutis laxa syndromes [8]. Some of these come with important health risks, so in some cases, genetic testing or further medical assessment may be recommended to rule these conditions out.
What is a Hypermobility Spectrum Disorder?
When hypermobility hurts, but the person doesn't meet the full criteria for hypermobile Ehlers Danlos Syndrome or other inherited conditions, they may be diagnosed with a Hypermobility Spectrum Disorder [3,9].
People with a Hypermobility Spectrum Disorders usually have strongest symptoms in the musculoskeletal system but may also have impacts in other body systems as outlined above.
This is part of why a thorough assessment is crucial. To help differentiate Hypermobility Spectrum Disorders from other genetic conditions that may have more wide-reaching effects that may need additional medical management.
Measuring the impact of hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorders
Understanding how hypermobility affects an individual's daily life is crucial for effective management. The recently developed Spider questionnaire is a valuable tool for this purpose. It assesses the impact of hypermobility across eight domains or areas [10]:
1. Neuromusculoskeletal
2. Pain
3. Fatigue
4. Gastrointestinal
5. Cardiac dysautonomia
6. Urogenital
7. Anxiety
8. Depression
The Spider tool provides a visual representation of how hypermobility affects an individual across these domains. This can be incredibly helpful for both patients and healthcare providers.
At PhysioTec, we use the Spider Tool for hEDS and HSD. It allows us to:
1. Identify priority areas for further assessment and management
2. Track changes over time
3. Tailor treatment plans to address the most impactful symptoms.
For example, if the Spider reveals significant impact in the anxiety and cardiac dysautonomia domains, we might prioritise relaxation techniques and referral to a cardiologist alongside our usual physiotherapy interventions.
Living with hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorders
While HSD and hEDS are lifelong conditions, many people learn to manage their symptoms effectively. Treatment with a physiotherapist often involves [11]:
- Education about the condition
- Exercise to improve joint stability, muscle strength, and proprioceptive control.
- Pain management strategies
- Lifestyle, activity, and postural modifications
- Advice on pacing and energy conservation
- Advice on managing other symptoms, such as Postural Orthostatic Tachycardia Syndrome (POTS)
- Appropriate referral to other healthcare practitioners
The key is a personalised, multidisciplinary approach that addresses each person's unique set of symptoms and challenges.
In conclusion, joint hypermobility may never be a problem for some individuals, but when hypermobility hurts, it’s a good idea to get yourself assessed. Or if you know or think you have hEDS or HSD and you have a child you are worried may have the same condition, early assessment and diagnosis can help us support you and your child to get a plan in place for best management of their condition in the longer term.
Joint hypermobility-related conditions are complex disorders that go beyond just flexible joints. By understanding the multi-system nature of these disorders and using comprehensive assessment tools, we can better support those living with HSD and hEDS. If you suspect you or your child might have HSD or hEDS, don't hesitate to discuss your concerns with us at PhysioTec.
Author
This blog has been written by one of our experienced PhysioTec physiotherapists. If you would like to book with one of our physio's, call 3342 4284 or click here to book online.
Other great Blogs
AWESOME BLOGS THAT OUR PHYSIO TEAM HAS CONTRIBUTED TO PROUDLY!
Hypermobility: Separating Myths From the Evidence
Bendy joints, aching muscles, and a lifetime of being told “you’re just double-jointed” – sound familiar? Hypermobility is often dismissed…
Medial Elbow Tendinopathy (Golfers Elbow)
Medial elbow tendinopathy (commonly referred to as “Golfer’s elbow”) refers to pain on the inside of your elbow. Often, people…
Posterior Ankle Impingement in Dancers
Ankle pain can be a challenging thing for ballet dancers to overcome. It might creep in during rehearsal, flare up…
PhysioTec is Moving to Salisbury: New Brisbane Physiotherapy location
Same Team. Same Care. New Location. Join us at our new location in Salisbury! Same Trusted Team Same physios, same…
Ischiofemoral Impingement: Symptoms, Diagnosis, Treatment
Hip pain can be a challenging thing to overcome. It might creep in during a run, flare up after a…
Getting More From Your Hip Replacement: Troubleshooting Common Problems after 12 Months
Taking the plunge into hip replacement surgery is a big step, and usually only undertaken after years of hip pain…
The Paradox of “Stiffness” in Hypermobility: Why You Feel Tight (And Why Stretching Isn’t Working)
We all face physical challenges at some point in our lives, but those with hypermobile joints encounter a particularly confusing…
Cycling and Hip Pain – How a Physio Bike Fit Can Help
How lucky are we in South East Queensland to have such a wonderful cycling environment. Cruising along the Brisbane River,…
Acute Back Spasm: A Physiotherapist’s Guide to Recovery
Have you suddenly bent over or got out of bed and felt your lower back seize up? That painful “locked-up”…
Sacroiliac joint pain: Symptoms, Causes, Treatment
Have you developed pain at the base of your spine? Is it on one side? Have you suddenly noticed it’s…
References:
- To, M., Simmonds, J., Alexander, C., 2017. Where do people with joint hypermobility syndrome present in secondary care? The prevalence in a general hospital and the challenges of classification. Muscoskel. Care 15, 3–9.
- Connelly, E., Hakim, A., Davenport, A., Simmonds, J.V., 2015. A study exploring the prevalence of joint hypermobility syndrome in patients attending a musculoskeletal triage clinic. Physiother. Pract. 36 (1), 43–53.
- Castori, M., Tinkle, B., Levy, H., Grahame, R., Malfait, F., & Hakim, A. (2017, March). A framework for the classification of joint hypermobility and related conditions. In American Journal of Medical Genetics Part C: Seminars in Medical Genetics (Vol. 175, No. 1, pp. 148-157).
- Hakim, A. J., & Grahame, R. (2003). A simple questionnaire to detect hypermobility: an adjunct to the assessment of patients with diffuse musculoskeletal pain. International journal of clinical practice, 57(3), 163-166.
- Singh, H., McKay, M., Baldwin, J., Nicholson, L., Chan, C., Burns, J., & Hiller, C. E. (2017). Beighton scores and cut-offs across the lifespan: cross-sectional study of an Australian population. Rheumatology, 56(11), 1857-1864.
- Ferrari, J., Parslow, C., Lim, E. J., & Hayward, A. (2005). Joint hypermobility: the use of a new assessment tool to measure lower limb hypermobility. Clinical and experimental rheumatology, 23(3), 413-420.
- Nicholson, L. L., & Chan, C. (2018). The upper limb hypermobility assessment tool: a novel validated measure of adult joint mobility. Musculoskeletal Science and Practice, 35, 38-45.
- Meester, J. A., Verstraeten, A., Schepers, D., Alaerts, M., Van Laer, L., & Loeys, B. L. (2017). Differences in manifestations of Marfan syndrome, Ehlers-Danlos syndrome, and Loeys-Dietz syndrome. Annals of cardiothoracic surgery, 6(6), 582.
- Carroll, M. B. (2023). Hypermobility spectrum disorders: a review. Rheumatology and immunology research, 4(2), 60-68.
- Ewer, E. R., De Pauw, R., Kazkazk, H., Ninis, N., Rowe, P., Simmonds, J. V., & De Wandele, I. (2024). The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders—validation in adults. Clinical rheumatology, 1-13.
- Reychler, G., De Backer, M. M., Piraux, E., Poncin, W., & Caty, G. (2021). Physical therapy treatment of hypermobile Ehlers–Danlos syndrome: a systematic review. American Journal of Medical Genetics Part A, 185(10), 2986-2994.