EDS, hEDS, HSD and POTS: Why a Proper Assessment Matters

Ongoing joint pain, fatigue, dizziness, repeated injuries or struggling to tolerate exercise can be frustrating, especially when no one seems able to explain why.

For some people, these symptoms are linked to Ehlers-Danlos syndromes (EDS), hypermobile Ehlers-Danlos syndrome (hEDS), Hypermobility Spectrum Disorder (HSD) or Postural Orthostatic Tachycardia Syndrome (POTS). A proper assessment helps build the bigger picture: what is driving your symptoms, and what kind of rehabilitation is safe and useful for you.

At AZ Physiotherapy Limited in Auckland, Abdullah Abdullah provides assessment and rehabilitation for people with EDS, hEDS, HSD, symptomatic joint hypermobility, recurrent injuries, persistent pain and difficulty with exercise or daily activities. Abdullah has a special clinical interest in this area, as well as lived experience of EDS and hypermobility.

What are EDS, hEDS and HSD?

Ehlers-Danlos syndromes (EDS) are a group of inherited connective-tissue disorders. Connective tissue supports joints, skin, blood vessels and organs, so EDS can affect many parts of the body.

There are several recognised types of EDS. Hypermobile EDS (hEDS) is the most common and is particularly associated with joint hypermobility, instability, pain and movement-related symptoms.

Hypermobility Spectrum Disorder (HSD) describes symptomatic joint hypermobility that does not meet the diagnostic criteria for hEDS or another specific hypermobility disorder. HSD is not a "milder" label: symptoms can be just as significant.

Common symptoms of EDS, hEDS and HSD

People with EDS, hEDS or HSD may experience:

• Generalised joint hypermobility
• Frequent sprains and strains
• Joint instability, or joints that "give way"
• Recurrent subluxations or dislocations
• Persistent joint or muscle pain
• Muscle fatigue and reduced exercise tolerance
• Difficulty recovering after physical activity
• Problems with balance or proprioception (sense of joint position)
• Difficulty participating in work, exercise or sport

Being hypermobile does not automatically mean someone has EDS, hEDS or HSD. Many people have generalised joint hypermobility without significant symptoms. That is exactly why a proper assessment matters, rather than assuming all hypermobility is the same condition. If you're unsure whether you are hypermobile at all, start with our guide to the signs of hypermobility, EDS and hEDS.

Why is an EDS, hEDS or HSD assessment important?

An assessment builds a clear understanding of how hypermobility and related symptoms affect your physical function, so treatment can be matched to you.

At AZ Physiotherapy Limited, an assessment with Abdullah may look at:

• Joint range of movement and generalised joint hypermobility
• Joint stability and movement control
• Muscle strength and endurance
• Balance and proprioception
• Recurrent injuries and pain patterns
• Exercise tolerance and recovery
• Functional limitations at work, at home and in sport
• Previous rehabilitation and how you responded to it

Screening tools such as the Beighton score and the 5-point questionnaire may also be used where appropriate.

However, a Beighton score alone does not diagnose hEDS, EDS or HSD. Diagnosis depends on the 2017 international clinical criteria and on ruling out other possible explanations for your symptoms.

What is POTS?

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of autonomic dysfunction. When you move to an upright position, your heart rate rises more than expected (typically by 30 beats per minute or more within 10 minutes of standing in adults) and you develop symptoms of "orthostatic intolerance".

People with POTS symptoms may report:

• Dizziness or light-headedness when standing
• A fast or pounding heartbeat
• Fatigue and brain fog
• Feeling faint
• Difficulty standing for long periods
• Symptoms that get worse in the heat
• Reduced tolerance for exercise and physical activity

POTS is a medical condition that needs to be assessed and diagnosed by a doctor. A physiotherapist can recognise possible POTS-related symptoms and take them into account when planning safe rehabilitation.

Why does POTS matter for rehabilitation?

Exercise is an important part of rehabilitation for many people. But someone with significant orthostatic symptoms may not tolerate a standard exercise programme in the same way as someone without them.

For example, they may struggle with:

• Long periods of standing exercise
• Upright cardiovascular exercise such as running or cycling upright
• Sudden changes of position
• High-intensity exercise
• Exercising in hot environments

A rehabilitation programme can allow for this with gradual reconditioning, starting exercise in lying or seated positions where needed, symptom monitoring and carefully progressed load.

Why can EDS, hEDS, HSD and POTS be linked?

Some people with EDS, hEDS or HSD also experience symptoms of autonomic dysfunction, including POTS.

This does not mean everyone with EDS, hEDS or HSD has POTS, or that everyone with POTS has a hypermobility-related condition. But when someone presents with a combination of:

Joint hypermobility + recurrent injuries + persistent pain + fatigue + dizziness or exercise intolerance, it may be appropriate to consider whether further assessment is needed.

Understanding all the factors behind your symptoms makes it possible to build a more individualised rehabilitation plan.

How rehabilitation helps people with EDS, hEDS and HSD

Rehabilitation for EDS, hEDS, HSD or symptomatic joint hypermobility focuses on improving strength, joint stability, movement control and physical capacity, while respecting your symptoms and limits. Our guide to hypermobility exercises and physio covers this in more detail.

Progressive strengthening

Strengthening the muscles around hypermobile joints improves support, control and functional capacity. Exercise is progressed gradually according to your symptoms, goals and how your body responds.

Joint stability and movement control

The focus is on control and stability rather than more flexibility. For someone who is already very mobile, extra stretching may not be appropriate, particularly if it increases pain or instability.

Proprioception and balance

Exercises to improve awareness and control of joint position can help, especially if you experience instability or recurrent injuries.

Gradual return to activity

The aim is not to avoid physical activity. Rehabilitation helps you gradually build capacity for everyday activities, work, gym training, running, hiking and sport.

Pacing and symptom monitoring

If you experience fatigue, pain or orthostatic symptoms, rehabilitation includes pacing and monitoring how your body responds to activity, so you can progress without boom-and-bust flare-ups.

When should you consider an assessment?

You may benefit from an assessment if you experience a combination of:

• Significant joint hypermobility
• Recurrent sprains or injuries
• Frequent joint instability or giving way
• Persistent musculoskeletal pain
• Recurrent subluxations or dislocations
• Difficulty building strength despite consistent exercise
• Significant fatigue after activity
• Dizziness or light-headedness when standing
• A rapid heartbeat when standing
• Significant exercise intolerance
• Difficulty returning to sport or normal activities

These symptoms can have many possible causes, so an assessment focuses on you as an individual rather than assuming a particular diagnosis.

Seek urgent medical help (call 111) if you faint and injure yourself, have chest pain, or have a racing heartbeat with breathlessness that does not settle when you lie down.

EDS, hEDS, HSD and POTS assessment in Auckland

The goal of an assessment is not to decide whether someone is simply "flexible" or "unfit". It looks at how your symptoms affect strength, stability, movement, exercise, daily activities and quality of life, and gives you a clear starting point for rehabilitation.

Where further cardiovascular or gastrointestinal assessment may be appropriate, Abdullah can discuss onward referral with you and liaise with your GP where clinically indicated.

Rehabilitation is not about pushing through symptoms or avoiding movement altogether. It is about finding the right starting point and gradually building strength, stability, confidence and capacity for the activities that matter to you.

You can book directly with AZ Physiotherapy Limited, with no GP referral and no formal diagnosis needed. Learn more about our EDS and hypermobility physiotherapy, meet Abdullah, or get in touch to discuss your symptoms. We see patients at our clinic in Pakuranga, East Auckland.

Sources

• Healthify (NZ): Ehlers-Danlos syndrome (EDS)
• Ehlers-Danlos Syndromes Aotearoa NZ: NZ Hypermobility and EDS Guideline 2019
• The Ehlers-Danlos Society: 2017 international classification
• NHS: Postural tachycardia syndrome (PoTS)