What is the connection between Hypermobile EDS & POTS?
Hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS) are two conditions that often appear together. Yet they are frequently misunderstood on their own. Sadly, many people still experience years of unexplained symptoms before ever receiving a clear diagnosis.
What’s surprising is that 31% of people diagnosed with POTS also meet clinical criteria for hEDS, and another 24% show generalized joint hypermobility without fully meeting hEDS criteria. This overlap is not a coincidence, and understanding it can help people get the right treatment sooner.
If you’re newly diagnosed, researching for a loved one, or exploring whether your symptoms match what others with hypermobility disease experience, this guide will help you understand the essentials.
What Is Hypermobile Ehlers-Danlos Syndrome (hEDS)?
Hypermobile Ehlers-Danlos Syndrome is a heritable connective tissue disorder. Connective tissue is what helps your body stay structurally stable. In simple words, it supports the skin, joints, ligaments, blood vessels, and organs. But when this tissue is weaker than normal, it leads to what many people call hypermobility symptoms or hypermobile joint disorder.
People with hEDS often experience:
- Joint hypermobility (joints stretch too far)
- Joint instability (joints slip, partially dislocate, or fully dislocate)
- Chronic widespread pain
- Muscle fatigue
- Soft, stretchy, or fragile skin
- Digestive issues
- Slow wound healing
- Autonomic dysfunction (which often presents as POTS)
This condition must not be confused with regular flexibility, as hypermobility disease affects the body’s collagen. The protein that provides strength and elasticity. This means the symptoms are not just about being “flexible”, they impact daily life, movement, and long-term joint health.
Understanding POTS (Postural Orthostatic Tachycardia Syndrome)
POTS is a type of autonomic nervous system disorder that affects blood flow. When a person with POTS stands up, their heart rate can increase by more than 30 beats per minute, causing a range of symptoms like:
- Lightheadedness
- Dizziness
- Rapid heartbeat
- Fatigue
- Brain fog
- Shortness of breath
Many people with POTS describe feeling as if their energy “drains” suddenly. It can be unpredictable and debilitating without treatment.
Why Do hEDS and POTS Occur Together So Often?
Researchers believe the overlap happens because both conditions involve connective tissue and autonomic nervous system problems.
In simple terms:
- Weaker connective tissue =
looser blood vessels, stretchy veins, and poor circulation - Poor circulation =
heart must work harder to push blood upward when standing - This leads to:
the rapid heart rate seen in POTS
This is why so many people with hypermobile joint diseases also develop POTS symptoms, especially during teenage or young adult years.
Common Hypermobility Symptoms to Look Out For
Hypermobility symptoms show up differently in every individual, but the most common include:
- Frequent sprains or injuries
- Joints that “pop out” or move too far
- Chronic joint or muscle pain
- Easily bruised skin
- Fatigue after normal activities
- Poor balance or coordination
- Digestive issues (like bloating, reflux, IBS)
- Temperature sensitivity
- Fainting or dizziness
Many people grow up hearing that they are “double-jointed”, but hypermobility disorder is far more complex than a party trick.
Do You Have a Hypermobile Joint Disorder?
A few questions often help people recognize that their symptoms may indicate a hypermobile joint disease:
- Do your joints easily bend past a normal range?
- Do you experience frequent joint pain or fatigue?
- Do your joints feel unstable or give way?
- Have you had unexplained widespread pain for years?
- Do you bruise easily or have soft/velvety skin?
- Do you struggle with dizziness or rapid heartbeat upon standing?
If several of these resonate, it’s worth discussing hypermobility disorder with a specialist, particularly a rheumatologist or a geneticist.
How Are hEDS & POTS Diagnosed?
Unfortunately, diagnosing hEDS is not straightforward because:
- There is no genetic test for hEDS yet
- Symptoms vary widely
- Many doctors are not trained in hypermobility diseases
Diagnosis usually includes:
- Beighton Score – measures joint hypermobility
- Clinical criteria, including pain patterns, family history, and skin features
- Rule-out tests to exclude other types of EDS
POTS is typically diagnosed through:
- Tilt-table test
- Heart rate and blood pressure measurements
- Blood volume and autonomic function tests
Because the two are linked, specialists often check for both when symptoms overlap.
Living With Hypermobility Disease: What Helps?
While hEDS has no cure, management can greatly improve symptoms.
1. Physiotherapy
A physiotherapist trained in hypermobile joint disorders is essential.
The goal is to strengthen stabilizing muscles, not overstretch them.
2. Pain Management
This may include medications, heat therapy, massage, or pacing activities.
3. Lifestyle Adjustments
- Adequate hydration
- Compression garments for POTS
- Careful activity moderation
- Avoiding overextension of joints
4. Occupational Therapy
OT helps with joint-safe ways to perform daily tasks and protect long-term mobility.
5. Psychological Support
Chronic pain can take a toll mentally, and support can help with coping and acceptance.
Frequently Asked Questions
What exercises should I avoid with hypermobility?
Avoid anything that forces joints past their natural limits or strains connective tissue, such as:
- Deep stretching or yoga poses that push flexibility
- High-impact activities (running on hard surfaces, jumping)
- Contact sports
- Heavy weightlifting without supervision
- Hyperextension-based movements
Is hypermobility a chronic illness?
Yes. Hypermobility disorders like hEDS are lifelong chronic conditions. Symptoms may improve with management, but the underlying connective tissue differences remain.
What are the most common hypermobility symptoms?
The most frequent symptoms include:
- Joint hypermobility
- Chronic joint or muscle pain
- Frequent sprains or dislocations
- Fatigue
- Soft or stretchy skin
- Digestive issues
- Poor balance
- Dizziness or tachycardia (often linked to POTS)
Are hypermobile joint disorders genetic?
Yes. Most hypermobility diseases, including hEDS, are heritable. While the exact gene for hEDS is not yet identified, it clearly runs in families.
What is the difference between hypermobile joint disease and regular joint flexibility?
Regular flexibility = A person can stretch more than average without pain or joint problems.
Hypermobile joint disease = Flexibility comes with pain, instability, injuries, fatigue, and systemic symptoms because the cause lies in weakened connective tissue.
In other words, one is a talent, the other is a medical condition.