Written by Raeya Bognar, an Accredited Exercise Physiologist with over ten years of experience in allied health, specialising in invisible illnesses.
The Hidden Strain: Life with Hypermobility and Ehlers-Danlos Syndrome
Earlier this year, Active Health Clinic joined a cohort of allied health professionals at the annual EDS & Hypermobility Awareness Seminar, hosted by The Ehlers-Danlos Society. As conversations around complex chronic illnesses grow louder and more nuanced, this event carved out space to educate, collaborate, and advocate for conditions that, while relatively common, remain widely misunderstood: Hypermobility Spectrum Disorders (HSD) and Ehlers-Danlos Syndromes (EDS).
What Are HSD and EDS?
Hypermobility Spectrum Disorders and Ehlers-Danlos Syndrome refer to a group of connective tissue disorders that affect collagen, the protein that acts as the body’s glue. When collagen isn’t doing its job properly, joints become unstable, skin can become overly stretchy, and the body, quite literally, lacks the structural integrity it needs to function optimally.
EDS is genetic, and several subtypes exist (13 as per the 2017 criteria), with Hypermobile EDS (hEDS) being the most common. HSD, while not meeting the full criteria for EDS, still comes with functional joint instability, chronic pain, and fatigue. In both cases, the symptoms are real, disabling, and very often invisible.
Breaking down the symptoms
People with HSD or hEDS often have a lifetime of being “super flexible” or “double-jointed”. It might have looked like a “party trick” in childhood, but behind the flexibility is a story of instability and the challenges that come with it.
Symptoms commonly include:
- Frequent joint dislocations or subluxations
- Chronic musculoskeletal pain
- Early-onset osteoarthritis
- Fatigue and sleep disturbances
- Digestive issues (commonly linked to IBS or gastroparesis)
- Easy bruising or slow wound healing
- Autonomic dysfunction (POTS is a frequent comorbidity)
- Anxiety - often due to nervous system hyperarousal
However, it’s not just about the symptom profile, it’s also about the comorbidity profile too.
Common Comorbidities of hEDS
Ehlers-Danlos Syndrome, particularly the hypermobile subtype (hEDS), rarely exists in isolation. Because collagen is found throughout the body, the impacts of hEDS are far-reaching, and many individuals experience a range of comorbidities, that is, other conditions that often show up alongside hEDS. Understanding these overlaps can be crucial to building a comprehensive care plan.
Here are some of the most common:
Neurological & Autonomic
- Postural Orthostatic Tachycardia Syndrome (POTS) - a frequent companion, involving dizziness, rapid heart rate, and fatigue when standing.
- Neurodivergence - particularly Autism and ADHD, with growing research showing a significant overlap.
- Chronic migraines, cervical instability, and CSF leaks may also be present, especially in more complex cases.
Musculoskeletal
- Chronic pain syndromes (like Fibromyalgia, Chronic Regional Pain Syndrome etc)
- Temporomandibular Joint Dysfunction (TMJD)
- Joint instability, dislocations or subluxations
- Flat feet, early-onset osteoarthritis, scoliosis
Cardiovascular & Circulatory
- POTS, again, and other forms of dysautonomia
- Mitral valve prolapse
- Aortic root dilation - less common, but monitored in some individuals
Gastrointestinal
- Irritable Bowel Syndrome (IBS)
- Gastroparesis - delayed digestion that causes nausea and bloating
- Reflux (GERD) and abdominal pain
- Food intolerances or sensitivities
Immune / Allergic
- Mast Cell Activation Syndrome (MCAS) - increasingly recognised in hEDS patients, causing allergy-like reactions, hives, flushing or even anaphylactoid symptoms
- Autoimmune conditions, such as Hashimoto’s or lupus, may also overlap, though research is still evolving
Sleep & Mental Health
- Sleep issues, including insomnia and unrefreshing sleep
- Anxiety and depression, sometimes related to dysautonomia or the medical trauma of being misdiagnosed or dismissed
- Sensory processing difficulties, especially light, sound and temperature sensitivity
It’s important to note that the “trifecta” of hEDS, POTS and MCAS is so common in clinical circles that it’s often used as shorthand. These interconnected conditions make symptom management more complex but also more coherent. Once you understand how the systems interact, care can become far more targeted and effective.
The Diagnostic Dilemma
One of the most frustrating parts of the hypermobility journey is diagnosis. Many patients spend years, yes, literal years, being misdiagnosed with things like “growing pains,” “generalised anxiety,” or even being told it’s all in their head.
Diagnosis typically involves a mix of clinical history, symptomatology, physical examination (including the Beighton Score), and ruling out other subtypes via genetic testing when appropriate. But unlike many conditions, there is no blood test or biomarker for hEDS. This makes clinical experience and patient history even more vital, and unfortunately, it is still far too rare in mainstream medical training.
The Invisible Cost
Despite the visible hypermobility, the cost of living with HSD or EDS is often invisible and constant. People with these conditions will often have to micromanage their every move: how they sit, how long they stand, whether their knees are locked, if their shoulders are stabilised, even the position they sleep in.
For many, fatigue is a major player, and not the "I didn’t sleep well" kind. It's the kind that feels like gravity is working harder on your body than it does for everyone else. Add in the unpredictability of flares and dislocations, and you've got a life that requires constant pre-planning and modification.
So, what helps?
There’s no cure (yet), but that doesn’t mean there’s no help. Management of HSD/EDS often involves a biopsychosocial approach:
- Physiotherapy (with a hypermobility-informed therapist) is essential for joint stabilisation and proprioception
- Pacing and energy management, especially if chronic fatigue or autonomic dysfunction are present
- Dietetic support, particularly if GI symptoms or Mast Cell Activation Syndrome are involved
- Pain management that acknowledges both the injury history and challenges and central sensitisation, including pharmacological and non-pharmacological interventions
- Psychological support, particularly for coping with grief, identity loss and medical trauma
And most importantly: validation. Many patients with EDS/HSD spend years being gaslit by systems that don’t understand their lived experiences. Listening, believing, and educating ourselves as clinicians goes a long way.
The electrolyte connection: Why Sodii matters in hEDS
One of the lesser-known but incredibly important aspects of managing Hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorders (HSD) is fluid balance and electrolyte regulation. While it may seem like a side note compared to joint instability or chronic pain, for many people living with these conditions, especially those with comorbid dysautonomia or POTS, electrolytes can be a game changer.
People with hEDS often experience poor vascular tone, meaning their blood vessels don’t constrict efficiently. This can lead to blood pooling in the lower body when standing, reduced blood flow to the brain, and symptoms like light-headedness, fatigue, brain fog, and even fainting. These symptoms are often signs of orthostatic intolerance, a condition that affects the autonomic nervous system, and it's incredibly common in the hEDS community.
This is where Sodii comes in.
SODII is a clinical-grade electrolyte blend designed to support fluid retention and circulatory balance. Unlike sports drinks that focus on sugar and flavour, Sodii prioritises sodium, potassium, and magnesium - the key players in helping your body hold onto hydration and maintain blood pressure.
For those with hEDS or HSD (especially if you’re also managing POTS), increasing sodium intake can help boost blood volume, support better circulation, and reduce that “I might pass out if I stand too long” feeling. Many practitioners recommend 6-10 grams of sodium daily, ideally through both food and supplementation, to stabilise symptoms - and SODII offers an easy, consistent way to meet that need without guesswork.
In short: if your connective tissue is letting you down, electrolytes like Sodii can help your blood pressure and hydration hold you up.
In Summary
Hypermobility Spectrum Disorders and Ehlers-Danlos Syndrome are complex, invisible conditions that can be deeply debilitating if left unmanaged.
They are connective tissue disorders, yes, but they are also systemic conditions with a wide-reaching impact on the brain, body, and day-to-day life. With the right knowledge, a team of informed practitioners, and a whole lot of lived experience, people with HSD/EDS can improve their quality of life dramatically.
As health professionals, we must continue learning, listening, and leaning into the complexity. Because bendy doesn’t mean unbreakable, and behind every hypermobile joint is a human, trying to hold it all together.
For more information, support, or to learn more, head over to Active Health Clinic.
