Simple medications, tailored physio and pacing can make a big difference…

Chronic pain, fatigue, and frequent injury are commonly reported to GPs, and could point to an underlying connective tissue problem. Dr. Jason Lam, a specialist GP and sports and exercise physician, and Leanne Scown, a master’s-qualified sports physiotherapist and clinical Pilates practitioner, offer advice for assessing and managing pain in hypermobile patients.

Understanding hypermobile conditions

Ehlers-Danlos syndrome is a group of 13 heritable disorders caused by genetic changes that affect connective tissue. “Common to all of them is some degree of hypermobility, skin hyperextensibility, and tissue fragility,” Dr Lam explains.

Hypermobile EDS (hEDS) is the only one without a known genetic marker and probably results from a combination of epigenetic and environmental factors—including trauma and hormonal changes, he says.

Hypermobility spectrum disorder (HSD) is a connective tissue condition leading to joint instability, injury, and pain in patients who do not meet hEDS criteria—but it’s not necessarily less severe than hEDS, Dr Lam stresses.

“They both can affect multi-systems; they can have varying degrees of severity in multiple different domains.”

Recognising hypermobile patients in general practice

Prevalence of joint hypermobility syndrome has been estimated to be between 1 in 600 to 1 in 900, but underdiagnosis likely masks their true prevalence.

Key clinical features of hypermobility include:

• Recurrent joint pain and instability
• Frequent injuries disproportionate to trauma
• Clumsiness and dyspraxia.

Dr Lam notes gastrointestinal issues are common, with the American Gastroenterological Association (AGA) recently releasing clinical guidance suggesting gastroenterologists screen for hypermobility in people with a disorder of gut-brain interaction.

“As GPs, this is one of the most common things we see. And we always just go, ‘you’ve got irritable bowel.’ But actually, the AGA is now saying, ‘consider hypermobility as part of this because it may present with pain, with slow rapid or slow transit, faecal impaction, nausea, all these sorts of things.’”

Autonomic symptoms consistent with postural orthostatic tachycardia syndrome (such as dizziness, fatigue, and brain fog) and neurodivergence are also more common in this population.

In fact, connective tissue hyperextensibility may underlie seemingly unrelated symptoms. “Patients may not have 16 different diagnoses; hypermobility could be the underlying cause,” Dr Lam says.

GPs can make a clinical diagnosis, particularly when severe features such as significant family history, skin fragility, ocular problems, or cardiovascular events are absent. “Even if you think you want genetic backup or rheumatology backup, that can take ages. We can actually start managing people now,” Dr. Lam stresses.

Pain in hypermobile patients

Ms Scown says pain in hEDS and HSD is complex and driven by several mechanisms, including:

• Nociception – resulting from mechanical insults such as a rolled ankle
• Neuropathic – sometimes linked to small-fibre neuropathy
• Central sensitisation – where minor stimuli can provoke significant pain.

Patients frequently experience multi-regional pain without clear aetiology, she adds.

Importantly, people with hEDS and HSD are prone to mast cell activation syndrome, which can dial up symptom intensity, she says.

“There can be an inflammatory response that is amplified by the fact that their immune system is playing games in the background. And this is where GP management can make a massive difference to their day-to-day life and their capacity to do what I am throwing at them in terms of exercise-based interventions.”

Dr Lam points out pain is predictive as well as protective. “So if you have recurrent subluxations or something like that, any sort of movement or threat, your brain is going to try and protect that–and by doing that can have a pain experience.”

Assessment and management in GP

Validation is paramount when assessing pain, regardless of imaging findings, Dr Lam says.

“Structure does not equal pain. So the role of imaging is really to rule out if there is a significant structural thing which may require more intervention, but there usually isn’t. That doesn’t mean they’re not in pain.”

Assessment should identify contributing factors including joint instability, immune dysfunction, and small-fibre neuropathy.

Management involves optimising as many things as possible, Dr Lam says.

“I tell people I can’t fix their problem. They’re like a bicycle tyre with lots of holes, and the game is to plug as many holes as possible.”

Medications can help reduce the inflammatory component, he says.

“We know that mast cells live next to nerves and blood vessels, and if they’re inappropriately sensitive and drop their bundle of chemical mediators, that ratchets up inflammation and pain. And things like antihistamines and the H2s, like famotidine and nizatidine, can dial that down a bit.”

Low doses of medications like naltrexone, amitriptyline, nortriptyline or a gabapentinoid can help manage neuropathic pain.

Physiotherapy

Physiotherapy is a cornerstone of management but requires a specific approach, Dr Lam says.

“It’s not the same as working with your average person. The way they respond is different. I always tell them you don’t want high velocity manipulations. And excess stretching is not going to be helpful. The tightness is there because they’re trying to protect themselves. So it’s getting that balance between tension and relaxation.”

Ms Scown agrees, noting many patients have had a bad experience with manual therapy and concluded it’s not helpful—but it’s about finding someone who understands their condition.

“From a manual therapy perspective, it is much more nuanced. It is a much gentler approach because their joints, their ligamentous structure is not as robust. Their muscular system has to compensate for that. You take that away too aggressively and their system will just ramp up that muscular tone again and they often will end up worse.”

Education about pacing can help prevent the ‘boom and bust’ cycle patients are prone to.

“If they’re having a good day, they want to get all the things done, but then it ends up flooring them for two weeks afterwards,” she explains.

Exercise is important, but progression must be highly personalised.

“These people have often been blamed for not adhering to their exercise programs and therefore not making progress. Whereas often it is that they’ve been started with too high a bar or the progressions are too big,” Ms Scown says.

“It will be a longer recovery. These people do not build muscle strength as quickly as the non-flexi population, especially in the female cohort.”

Multidisciplinary care

As a multi-system condition, management requires a multidisciplinary approach, Dr Lam says.

“We want to look at them as a whole person. What are the things most troubling for them? What is limiting them? And then we address that.”

Depending on symptoms, you might refer patients to a:

• Dietitian – to help with gut issues and dietary optimisation, particularly protein intake to support tissue health and rehabilitation.
• Psychologist – “We’re not saying the primary problem is anxiety, but they can help patients manage life with energy-limiting conditions, pain, neurodivergence, and trauma,” he notes.
• Neurologist – if headaches are a prominent feature.
• Gastroenterologist – to manage gut symptoms.

Ms Scown says patient advocacy and support networks like the Connective Tissue Disorders Network Australia and the Ehlers-Danlos Society provide resources, education and validation for patients.

Key takeaways

• Pain is multifactorial, often involving nociceptive, neuropathic and inflammatory drivers and central sensitisation—even when imaging is normal.
• Gastrointestinal, autonomic and neurodivergent presentations are commonly associated with hypermobility.
• If there are no red flags, GPs can diagnose and initiate management.
• Pain management focuses on addressing drivers such as mast cell activation and small-fibre neuropathy.
• Standard physio can worsen symptoms—patients benefit from gentle manual therapy, pacing, and slow, personalised rehabilitation.