If you have always been “double-jointed”, and you are also dizzy when you stand, exhausted for no clear reason, and sore in several joints at once — those facts are probably not separate. They are a recognised pattern.
This page explains the link between joint hypermobility and dysautonomia — problems with the automatic nervous system that controls blood pressure, heart rate and digestion. It is written for patients who have collected a series of unconnected diagnoses and suspect something ties them together. For the assessment itself, see Hypermobility Testing in Sydney.
Why bendy joints and dizziness travel together
Being hypermobile means your joints move beyond the usual range. That flexibility comes from the properties of your connective tissue — the material that gives ligaments, tendons and skin their strength and stretch.
Connective tissue is not only in your joints. It is also in the walls of your blood vessels. If it is more stretchy than average, then your veins are more distensible too — they expand more easily under pressure.
That matters the moment you stand up. Normally, veins in the legs and abdomen tighten to push blood back to the heart against gravity. If those vessels are unusually stretchy, blood pools in the lower body instead of returning. Less blood reaches the heart, so less reaches the brain — and the body compensates the only way it can, by driving the heart rate up sharply.
The result is the familiar list: light-headedness on standing, a racing or pounding heart, brain fog, nausea, and a level of fatigue that rest does not fix. When that pattern is measured objectively it is often POTS (postural orthostatic tachycardia syndrome) or another form of orthostatic intolerance.
This is the connection most patients are never told about: the flexibility they were praised for as a child and the exhaustion they cannot explain as an adult can share a single underlying cause.
hEDS and HSD — what the labels actually mean
Two terms come up repeatedly, and the difference between them causes a great deal of unnecessary worry.
Hypermobile Ehlers-Danlos syndrome (hEDS) describes symptomatic hypermobility that meets the full agreed clinical picture — joint hypermobility together with a defined combination of other connective-tissue features and a family or symptom history that fits.
Hypermobility spectrum disorder (HSD) describes symptomatic hypermobility that does not meet every one of those points, but is still causing real problems.
HSD is not a lesser diagnosis. It is not “almost” anything, and it does not mean your symptoms are milder or less real. The two conditions are managed in essentially the same way. The label describes which boxes were ticked on the day — not how much you are struggling, and not how much care you deserve.
One point is worth stating plainly, because it is a common source of confusion: hEDS is a clinical diagnosis. There is no confirmed gene for it, and therefore no blood test or genetic panel that can diagnose it. Genetic testing is used to exclude other, rarer connective-tissue conditions — which is a genuinely useful thing to do — but a normal genetic result does not rule hEDS out, and no result can rule it in. The diagnosis rests on a careful, structured clinical assessment.
The conditions that travel with hypermobility
Hypermobility rarely arrives alone. The associated conditions are well described, and recognising them as a cluster is usually more useful than chasing each one separately:
- Dysautonomia and POTS — light-headedness, palpitations, exercise intolerance, fainting or near-fainting.
- Mast cell activation problems — flushing, hives, unexplained allergic-type reactions, food and drug sensitivities.
- Gastrointestinal dysmotility — bloating, reflux, early fullness, constipation alternating with urgency.
- Chronic widespread pain — from repeated joint strain, subluxations and the muscle work of holding unstable joints steady.
- Fatigue and unrefreshing sleep — often the single most disabling symptom, and the one most often dismissed.
These overlaps are covered in more detail on POTS and its overlapping conditions.
What an objective assessment gives you
Most people who reach this point have been assessed many times, informally, by many different clinicians — and have been told some version of “you’re just flexible”. A structured assessment is different in three ways.
It is objective. Rather than an impression formed in a short consultation, the assessment combines validated questionnaires with precise in-person measurements, applied against internationally recognised, evidence-based, expert-approved criteria. The same standard is applied to everyone, so the result does not depend on who happened to see you.
It is connected. Because Dr Granot also performs autonomic function testing, hypermobility can be assessed alongside the dysautonomia that so often accompanies it, rather than in isolation — which is usually the missing piece. Autonomic testing takes 40 to 60 minutes, and no referral is required. Details are at Autonomics Australia.
It is written down. You leave with a structured report for your GP and other treating clinicians. That document is what converts “I think I might be hypermobile” into something the rest of your care can be built on — physiotherapy that accounts for joint instability, cardiology that knows what it is looking at, and management that treats the cluster rather than one symptom at a time.
This is a private test and does not attract a Medicare rebate.
Common questions
I have been flexible my whole life. Why would it become a problem now?
Hypermobility is usually best tolerated in childhood and adolescence, when muscle tone compensates for lax ligaments. Symptoms commonly emerge in the late teens through the thirties, and are often triggered or unmasked by an illness, an injury, a period of deconditioning, pregnancy, or surgery. The underlying tissue has not changed — the compensation has.
Does a diagnosis actually change anything?
Yes, in practical terms. It changes how physiotherapy is prescribed, since standard stretching-based programs can make unstable joints worse. It flags a higher likelihood of dysautonomia, which is treatable. It explains sensitivity to some medications and to local anaesthetic. And it gives you a coherent explanation to bring to every clinician you see afterwards.
Can a blood test or genetic test diagnose it?
Not for hEDS — there is no confirmed gene, so no test can confirm it. Genetic testing is valuable for excluding other connective-tissue conditions, and that exclusion is often part of a thorough assessment, but the diagnosis itself is clinical.
My other tests were all normal. Does that mean nothing is wrong?
No. Standard investigations — blood tests, echocardiograms, routine imaging — are typically normal in hypermobility and in POTS. That is expected, and it is exactly why these conditions are missed so often. Normal results rule out other problems; they do not rule this one out. It requires being looked for specifically.
Do I need a referral from my GP?
No referral is required for autonomic function testing. A referral is welcome and helps us understand your history, but you are able to arrange assessment yourself.
Considering an assessment?
Hypermobility assessment and autonomic function testing are carried out by Dr Ron Granot, consultant neurologist, in Bondi Junction.
Or call 02 9388 0615. Doctors can refer online at ref.autonomicsaustralia.com.au.