What are Hypermobility Spectrum Disorders (HSD), Hypermobile Ehlers-Danlos Syndrome (hEDS), and Ehlers-Danlos Syndromes (EDS)?

Have you ever been told you’re “double-jointed” or unusually flexible? Joint hypermobility simply means your joints move beyond the typical range of motion. For some, especially dancers or gymnasts, this can be an advantage. But for others, it’s not just about flexibility; it can come with pain, fatigue, injury, or other symptoms.

My patients often comment that their hypermobility symptoms exist in addition to body-wide or systemic symptoms. This has also been reported in my research, and we know that when both exist together that this may indicate a broader condition or connective tissue condition known as a hypermobility spectrum disorder or hEDS. [1].

Understanding Hypermobility Disorders

Hypermobility-related conditions include:

• EDS: A group of genetic conditions affecting collagen, a protein that provides structure to joints, skin, and organs.
• hEDS: The most common EDS type, and often the hardest to diagnose.
• HSD: Diagnosed when hypermobility symptoms are present but criteria for hEDS are not fully met [2].

Although distinct, HSD and hEDS often appear and feel very similar, and the jury is out on whether they are the same condition [3]. Both benefit from early diagnosis and personalised care.

Do these symptoms or conditions sound familiar?

In my clinic, I commonly see Hypermobility, hEDS and EDS occurring with multiple other symptoms or comorbidities, such as:

• Recurring joint sprains, dislocations or partial dislocations (subluxations)
• Widespread joint or muscle pain
• Fatigue that’s difficult to explain
• Digestive issues like bloating, reflux, diarrhoea, IBS or constipation
• Dizziness or rapid heartbeat when standing (possible signs of POTS and Dysautonomia)
• Anxiety, or depression particularly about your body or physical health
• Easy bruising
• Breathing disorders
• Autism/ADHD
• Poor response to medications or anaesthetics (you need quite a lot more for it to take effect) – or you might be overly sensitive to them.
• Bladder and gynaecological (“women’s problems”) issues like overly painful periods, endometriosis, urinary incontinence or unexplained prolapses
• Clumsiness, tripping often or handwriting difficulties
• MCAS (Mast Cell Activation Syndrome).
• TMJ dysfunction (jaw issues).
• Pelvic and bladder dysfunction.

Why getting the right diagnosis EARLY matters in Hypermobility and EDS Disorders

Receiving a timely and accurate diagnosis of a hypermobility disorder is essential.  An early diagnosis helps you and your doctors understand what’s going on, start managing pain and co-occurring conditions sooner, and create a care plan that actually fits your body, symptoms and daily life. Knowing what’s happening in your body can be empowering, and it can make a real difference to your long-term health and quality of life [3-6]. Delays in diagnosing hypermobility disorders are common. There is currently  a delay of between 10 years to several decades to get an accurate diagnosis [7-9]. Many individuals face decades of uncertainty, often being misdiagnosed, labelled with psychological conditions or being invalidated and dismissed [7, 10, 11].

The risks of “misdiagnosis” and “delayed” or  “missed” diagnosis

When hypermobility disorders go unrecognised, the consequences can be severe. I often hear from patients who were told in their childhood that their symptoms were “growing pains”, or psychological. Often mislabelled as  anxiety, fibromyalgia, depression, headaches/migraines, FND or generalised chronic pain [8, 11, 12]. Many of my patients describe the frustration of being told their symptoms are “all in their head” by numerous other health professionals.

Recent research by Lee and Chopra, just released in August of this year, highlighted that 94% were misdiagnosed with a psychiatric disorder, while 88% were told that they were “making it up”, and 76% of individuals were told that they were “attention-seeking” [10]. This kind of healthcare is provision is damaging to you the individual and not at all in line with the concept – FIRST DO NO HARM.

This kind of misdiagnosis can lead to:

• Feeling invalidated: Without a clear diagnosis, people often feel dismissed or not believed, which can worsen symptoms, leading to further distress and reduced quality of life[6, 13, 14].
• Inappropriate treatment: Incorrect medication, medical treatment and therapies can worsen symptoms or cause new complications [10, 15].
• Secondary complications: Unmanaged or inappropriately managed symptoms may contribute to worsening chronic pain, fatigue, gut symptoms, additional anxiety, further muscle and joint issues, over time [15-19].
• Loss of trust in the medical and health professions After repeated negative or traumatic experiences, people may avoid seeking help to protect themselves from further invalidation or harm [7, 11, 13].

The difference of getting the diagnosis correct

Early diagnosis can help individuals begin treatment sooner and avoid long-term damage.

Benefits of early diagnosis include:

• Enabling early targeted management: A correct diagnosis gives healthcare providers the ability to create personalised treatment plans and allows for tailored strategies, including physiotherapy and psychology that improve mobility, reduce pain, manage life with a chronic condition and support daily function[20-23].
• Access to multidisciplinary care: With a diagnosis, individuals can assemble a care team that understands both the physical, social and emotional aspects of hypermobility[24].
• Improved quality of life: With condition-specific management and access to physiotherapy, exercise physiology and psychology, there are significant improvements in quality-of-life measures[21, 25]
• Prevention of worsening of related conditions: Prompt intervention may reduce the risk of worsening other associated conditions like Postural Orthostatic Tachycardia Syndrome (POTS) or Mast Cell Activation Syndrome (MCAS)[26].
• Emotional validation and empowerment: For many, finally being diagnosed brings emotional relief. It helps counter the feelings of being dismissed or misunderstood that often accompany undiagnosed chronic conditions. It also gives patients a clearer understanding of their symptoms and the confidence to advocate for their needs [7, 8, 26].
• Reduces exposure to inappropriate or harmful interventions: A confirmed diagnosis can ensure inappropriate treatments and medications are not advised. It can also provide surgical teams and therapists with guidance on how to modify their approach to surgery, dental work, or treatments, and highlight potential problems that may arise with anaesthesia and healing issues [26].
• Essential ongoing monitoring and referrals: A diagnosis allows doctors to identify related issues and known possible red-flag conditions and refer to specialists when appropriate [20].
• Obtaining access to accommodations and supports at school and work: Diagnosis can be helpful to secure an individualised Education Plan that includes accommodations for a child’s requirements when they are attending school or university. Supports in the workplace also exist if that’s where you happen to be.

How are Hypermobility disorders diagnosed?

These conditions are diagnosed using the 2017 diagnostic framework for hEDS and HSD.  The criterion can be accessed through Self-Screening Test.

Even if you don’t meet the full hEDS criteria, a HSD diagnosis is just as real, often having similar impacts on your health and deserves the same care and attention.

See our articles on “How is Hypermobility and Hypermobility Spectrum Disorder (HSD) diagnosed?” and “Step-by-step guide to diagnosing Hypermobile Ehlers-Danlos Syndrome (hEDS)”

Why Seeing a Specialist Can Help

Not all doctors are trained to recognise hypermobility-related conditions. A hypermobile or EDS-aware healthcare provider, such as a General Practitioner, Rheumatologist, Geneticist, or Physiotherapist familiar with these disorders, can make a significant difference in your journey to the correct diagnosis. If you’ve ever felt ignored, seeking a second opinion is entirely valid and often necessary.

What happens after diagnosis?

There’s no “cure,” but a tailored management plan can significantly improve quality of life and decrease pain.

Treatment might include:

• Personalised physiotherapy (focusing on stability and pain management)
• Energy pacing strategies- find an Exercise Physiologist who understands EDS and Hypermobility
• Pain support (bracing, taping, body supports, TENS, medications or alternatives)
• Counselling, peer support, or psychological care

Your team may include:

• A primary care doctor- Your GP needs to be your best friend!
• Allied health providers (physio, OT, exercise physiologist)
• Mental health professionals
• Gastro, cardio, or neuro specialists (for related symptoms)
• Specialist doctors like a geneticist or rheumatologist

You deserve answers

Living with an invisible illness with unexplained symptoms can feel isolating and disheartening. But your experience is valid, and you are not alone. If this article resonates with you, it may be time to consider whether a hypermobility disorder could be underlying what you’ve been experiencing.

An accurate diagnosis can be life changing. It offers more than just a label; it provides clarity, opens access to care, and connects you with a community that understands.  Greater awareness and better diagnostic practices are essential. But in the meantime, don’t be afraid to advocate for yourself. Ask questions, seek second opinions, and trust your own intuition about your body. You deserve to be heard, understood, and supported every step of the way.

Surviving and thriving during the diagnostic journey-HSD  & hEDS

While waiting for an HSD or hEDS diagnosis, it helps to focus on looking after yourself day to day. Pace your activities so you don’t push past your limits and include gentle movement that feels right for your body. Try to keep a good sleep routine, eat well, and stay hydrated it all adds up. Using braces or supports when needed can make things more manageable, and taking care of your mental health is just as important. Keep track of your medical records, connect with healthcare professionals who understand hypermobility and Ehlers-Danlos Syndrome (like a physiotherapist), and reach out to others who get what you’re going through. Having the proper support around you can make a huge difference.

You’re not alone. Support is out there

Connecting with others who understand what you’re going through can be incredibly validating. These organisations offer excellent resources:

See the list of Support Groups that recognise, understand and support you wherever you are in your diagnostic journey.

References

Coming soon.