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1 in 5 Australians over the age of 45 complain of chronic pain (a major symptom of EDS, hEDS & HSD)

Up to 90% of HSD, hEDS and EDS patients present to GPs and physios with pain as their first symptom

More than 50% of patients with EDS and hEDS report clinician-related patient traumatisation and up to 90% felt invalidated by their clinicians

More than 50% of patients with Autism Spectrum also are hypermobile

Up to 46% of children with EDS and HSD are also diagnosed with ADHD

EDS, hEDS, and HSD disproportionately impact females, with 80-90% of cases occurring in women

57% of patients with chronic pain in Australia rely on pain medications/analgesics

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Frequently asked questions

Your questions,
answered

Q1. Could Hypermobility be the cause of my Pain, Fatigue, and Illnesses?

Hypermobility refers to joints that move beyond the normal range of motion. While some individuals with hypermobility experience no symptoms, others may suffer from pain, fatigue, and other health conditions. When hypermobility is accompanied by symptoms such as pain, fatigue, and joint instability, it is referred to as symptomatic hypermobility. Two primary conditions associated with symptomatic hypermobility are hypermobility spectrum disorders (HSD) or Ehlers-Danlos syndrome (EDS).

How Pain, Fatigue and other illnesses are linked to Hypermobility

Joint Instability: Excessive movement in the joints can lead to instability, strains, and sprains, causing the muscles to work harder to support the joints. This can result in muscle fatigue and pain
Microtrauma: Repeated overextension of joints can cause small injuries to the surrounding tissues, leading to chronic pain and inflammation.
Muscle Overuse: To compensate for joint laxity, muscles may become overworked, protecting joints, and leading to muscle fatigue and soreness.
Nerve Compression: Unstable joints can compress nearby nerves, causing pain and discomfort.
Autonomic Dysfunction: Some individuals with hypermobility may experience issues with their Autonomic Nervous system, which controls automatic body functions like heart rate, blood pressure, digestion, and temperature regulation. When these functions do not work properly, it can lead to symptoms like dizziness, fatigue, sleep, anxiety, and digestive issues.
Other associated health conditions include
a. Poor coordination, Poor handwriting
b. Autism and Attention deficit disorder
c. Bowel and Bladder and Gynaecological problems
d. Difficulties with Sleep
e. Allergies and Mast Cell Activation Syndrome
f. Headaches and Migraines

Understanding the link between hypermobility and these symptoms is crucial for effective
management and improving quality of life. If you have any specific questions or need more details, feel free to ask

Q2. What is the difference between hypermobility, HSD, EDS and hEDS?

Hypermobility refers to when someone’s joints bend further than most people. It is excessive (hyper)- movement (mobility) of the joints of the human body. People were often called double- jointed. Not all people with hypermobility have pain or other symptoms, which is called asymptomatic hypermobility. Many health disorders, such as fibromyalgia, arthritis, autism, and Ehlers-Danlos Syndrome, can involve hypermobility. Therefore, it is crucial to medically investigate the cause of your hypermobility, especially if you have other health conditions and symptoms.

Hypermobility Spectrum Disorder (HSD) is a diagnosis given when hypermobility causes symptoms like ongoing pain or joint instability but does not meet the criteria for a specific genetic condition like Ehlers-Danlos Syndrome (EDS). HSD can present with other body wide symptoms that impacts the function of a person’s everyday life. HSD is recognised as a distinct disorder requiring management and care.

Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common EDS subtype. It shares many features with HSD, including hypermobile and often painful joints, but hEDS has stricter diagnostic criteria and a genetic basis that researchers are still working to identify.

Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders affecting the skin, joints, and other tissues. There are 13 subtypes, each with specific genetic causes and
clinical features.

Proper differential diagnosis is crucial for effective management and in some cases, lifesaving
interventions.

Q3. 30 Signs you may have grown up with Hypermobility or Ehlers-Danlos Syndrome (EDS)

Growing up with Hypermobility or Ehlers-Danlos Syndrome (EDS) can present a variety of unique challenges and experiences. Here are some signs that might indicate you grew up with these conditions:

Extraordinary or even moderate Flexibility compared to your friends: You could perform “party tricks” with your joints, like bending your fingers backward or touching your toes to your forehead.
Frequent Bruising: You often had bruises without remembering how you got them.
Joint Pain with Activity: Physical activities like running or jumping caused joint pain.
Frequent Joint Dislocations: Simple activities sometimes resulted in sprains or dislocated joints.
Poor Hand Strength: Writing caused hand cramps and pain.
Endurance Issues: Holding your arm up in class, managing to keep up in sports lessons or running was exhausting.
“Growing Pains”: Constant leg pain was often dismissed as normal growing pains.
Toe Walking: You often walked on your toes, leading to sore feet.
Discomfort on Long Car Rides or sitting at school: sitting for extended periods caused hip or back pain.
Frequent Falls and Clumsiness: You were always tripping or bumping into things.
Popping Joints: Your joints frequently clicked or popped.
Foot Pain in Unsupported Shoes: Certain shoes made your feet ache intensely, or you were born with club feet or hip issues.
Digestive Problems: Issues like bloating, nausea, and reflux were common.
Constant Fatigue: You felt exhausted after minimal exertion.
Chronic Body Pain: Pain in various parts of your body was constant.
Sensitivity to Touch: Certain fabrics or clothes irritated your skin.
Strange Sitting Positions: Sitting normally was uncomfortable, so you adopted unusual positions.
Frequent “Butterfingers”: You often dropped things and struggled to hold objects securely.
Blood Vessels and Bleeding: Minor scrapes took a long time to heal, and your skin bruised easily.
Knee and Ankle Pain with Running: Running led to knee pain, shin splints, and rolled ankles.
Delayed Milestones: You experienced delays in walking and crawling due to joint hypermobility.
Chronic Pain Misdiagnosed: Chronic pain was often mistaken for growing pains.
Difficulty with Fine Motor Skills: Tasks like tying shoelaces were challenging.
Balance Issues: Joint instability affected your balance.
Dental Issues: You had dental problems like overcrowding and weak enamel.
Frequent Subluxations: Partial dislocations were common, especially in shoulders, hips, and knees.
Stretchy Skin: Some people with EDS have unusually stretchy skin.
Chronic Fatigue: Constant effort to stabilize joints led to fatigue.
Coordination Difficulties: Poor proprioception made coordination challenging.
Handwriting Issues: Writing was difficult due to joint instability and muscle fatigue.

These signs highlight the diverse and often challenging experiences of growing up with hypermobility or EDS. If you have any more questions or need further details, see our detailed articles and references at….

Q4. How can Hypermobility Health Connect® assist your clinical team?

Hypermobility Health Connect® offers specialised education and professional development designed to equip allied health and medical professionals with the essential knowledge and practical skills to recognise, confidently & accurately diagnose, and effectively manage individuals with Hypermobility, Hypermobility Spectrum Disorder (HSD), and Hypermobile Ehlers-Danlos Syndrome (hEDS).

Led by Pauline Slater(B.App.Sc (Physio), M.Ed., MAPA (Pain & Paediatrics), MAPS, HMSA Member, EDS Society Affiliate, POTS Foundation Member), our programs include face-to-face workshops, presentations, live webinars, and mentoring to deliver evidence-based, hands-on learning. This integrated approach to education and training supports enhanced clinical outcomes.