EDS and the Nervous System

If you live with EDS and often feel dizzy, shaky, exhausted or strangely “on edge,” you’re not imagining it. Many people with EDS experience nervous system symptoms that are frequently misunderstood or mislabelled as anxiety.

In this article, we’ll gently explain how EDS can affect the autonomic nervous system, what POTS and dysautonomia mean, and why your body may feel both overstimulated and deeply fatigued at the same time.

What’s Happening in the Body?

Connective Tissue and Blood Vessels

Connective tissue doesn’t just stabilise joints. It also helps support blood vessels.

In EDS, connective tissue may be more elastic or less structurally supportive. When this affects blood vessels, especially in the lower body, blood can pool more easily when you stand upright.

This means less blood returns efficiently to the heart and brain. Your body notices this immediately.

The Autonomic Nervous System

The autonomic nervous system (ANS) controls automatic functions like:

  • Heart rate
  • Blood pressure
  • Breathing
  • Digestion
  • Temperature regulation

You don’t consciously control these processes. They are meant to adjust smoothly in the background.

When blood flow regulation is less stable, the ANS has to work harder to maintain circulation — particularly when you move from lying down to sitting or standing.

What Is POTS?

Postural Orthostatic Tachycardia Syndrome (POTS) is one form of dysautonomia.

It is typically defined by a significant increase in heart rate when moving upright, without a corresponding drop in blood pressure. Many people describe:

  • Heart racing on standing
  • Lightheadedness
  • Visual dimming
  • Nausea
  • Weakness

Not everyone with EDS has POTS, but there is a recognised overlap between hypermobility conditions and autonomic dysfunction.

Why You Feel “Wired but Tired”

When circulation is less efficient, the body may release stress hormones like adrenaline to maintain blood pressure and keep you upright.

Adrenaline can make you feel:

  • Jittery
  • Anxious
  • Shaky
  • Alert but uncomfortable

At the same time, your tissues and brain may not be receiving optimal blood flow. This contributes to fatigue, brain fog and heavy limbs.

The result is a confusing combination: overstimulated and exhausted simultaneously.

This is not a character flaw. It is a compensation pattern.

Why It Can Feel So Confusing

Autonomic symptoms are often invisible on routine tests.

You might:

  • Feel relatively okay lying down, but unwell when upright
  • Be told your blood work is “normal”
  • Be reassured that your heart is structurally healthy
  • Be told it’s anxiety

While anxiety can coexist with chronic illness, many dysautonomia symptoms are physiological responses to circulation challenges — not simply psychological distress.

Understanding this distinction can be deeply validating.

Common Patterns We See Clinically

Many people with EDS and autonomic involvement describe:

  • Heart racing when standing still
  • Exhaustion after showering
  • Heat intolerance
  • Cold hands and feet
  • Brain fog that improves when lying down
  • Nausea or appetite changes
  • Shaking or tremulousness during flares

Symptoms often fluctuate. Good days and difficult days can alternate without clear explanation, which adds to frustration.

Practical Takeaways

Small adjustments can sometimes reduce symptom intensity.

Moving slowly between positions — especially from lying to standing — gives your body time to adapt.

Adequate hydration is important for blood volume support. Some people benefit from increased salt intake, but this should be discussed with a clinician, particularly if there are other health considerations.

Compression garments (such as abdominal or thigh-high compression) can help reduce blood pooling for some individuals.

Recumbent or semi-recumbent strengthening exercises — such as seated resistance training or gentle floor-based work — may build tolerance without overwhelming the nervous system.

Consistency is often more helpful than intensity. Overexertion on a “good day” can sometimes trigger a flare the following day.

When to Seek Support

Consider seeking medical assessment if you experience:

  • Frequent fainting
  • Severe exercise intolerance
  • Debilitating fatigue that limits daily activities
  • Significant heart rate increases on standing

A structured evaluation can help determine whether POTS or another form of dysautonomia is present. Management often involves a combination of medical, physical and lifestyle strategies.

A Gentle Reframe

If you feel wired, shaky and exhausted at the same time, your body is not failing. It is trying very hard to keep you upright and functional.

Understanding the nervous system’s role in EDS can reduce self-blame and open the door to more targeted, compassionate care. You deserve explanations that make sense — and support that works with your body, not against it.

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