Bobby Jones Chiari & Syringomyelia Foundation

Why Symptoms in EDS and Syringomyelia Can Change from Day to Day

For many individuals living with Ehlers-Danlos Syndrome (EDS), syringomyelia, and related conditions, symptoms are not static.

They fluctuate—sometimes unpredictably.

A day that begins with manageable discomfort can shift into significant fatigue, pain, or neurological symptoms by afternoon. Changes in environment, temperature, or even barometric pressure can seem to trigger or intensify symptoms.

For patients, this can feel confusing or discouraging.

From a clinical perspective, however, there are physiological reasons why this occurs.

EDS and syringomyelia both involve systems that are sensitive to mechanical stress, fluid dynamics, and nervous system regulation.

As a result, symptoms may vary based on:

• Body position and activity level
• Environmental temperature
• Hydration and electrolyte balance
• Changes in atmospheric pressure
• Nervous system activation (stress, fatigue, illness)

Rather than reflecting inconsistency, these fluctuations often reflect the body’s response to changing internal and external conditions.

Many individuals with EDS experience some degree of autonomic nervous system dysfunction, including conditions such as dysautonomia or Postural Orthostatic Tachycardia Syndrome (POTS).

The autonomic nervous system helps regulate:

• Heart rate
• Blood pressure
• Body temperature
• Circulation

When this system is dysregulated, the body may have difficulty adapting to heat.

Common responses may include:

• Increased heart rate
• Lightheadedness or dizziness
• Fatigue or weakness
• Worsening pain or cognitive symptoms

Heat can also promote vasodilation (widening of blood vessels), which may further reduce blood flow to the brain in susceptible individuals, contributing to symptoms.

Many patients report that their symptoms worsen with changes in weather, particularly shifts in barometric pressure.

While research is ongoing, proposed mechanisms include:

• Changes in tissue pressure affecting joints and nerves
• Alterations in cerebrospinal fluid (CSF) dynamics
• Increased sensitivity of the nervous system to environmental changes

In conditions like syringomyelia, where the spinal cord is already affected, even subtle changes in pressure may influence symptom perception.

Patients may notice:

• Increased pain before storms
• Headaches or pressure sensations
• Fatigue or reduced tolerance for activity

Although these patterns are not always predictable, they are widely reported and clinically recognized.

Fatigue in these conditions is often more than simple tiredness. It may reflect:

• Increased energy demands from joint instability
• Autonomic dysfunction
• Chronic pain
• Neurological involvement

This can lead to post-exertional symptom exacerbation, where activity – physical or cognitive – results in a delayed increase in symptoms.

Flares may include:

• Increased pain
• Cognitive difficulty (“brain fog”)
• Weakness or reduced endurance
• Heightened sensitivity to stimuli

Understanding these patterns can help patients better anticipate and manage symptom changes.

While symptoms cannot always be prevented, certain strategies may help reduce severity or improve day-to-day stability.

1. Temperature Regulation

• Use cooling strategies (fans, cooling garments, shaded environments)
• Avoid prolonged exposure to heat when possible
• Plan activities during cooler parts of the day

2. Hydration and Electrolyte Support

• Maintain consistent fluid intake to maintain circulation
• Water alone is often not enough. Consider electrolyte balance (as appropriate for individual needs)
• Monitor for signs of dehydration or intolerance

3. Activity Pacing

• Break tasks into smaller segments
• Alternate activity with rest
• Avoid “overexertion followed by crash” cycles

4. Anticipating Weather Changes

• Track symptom patterns alongside weather conditions (try free app WeatherX)
• Adjust expectations and activity levels during known triggers
• Prepare supportive measures in advance

5. Supporting Nervous System Regulation

• Prioritize adequate, restorative rest
• Incorporate gentle movement or rehabilitation strategies
• Reduce sensory overload when symptoms are heightened

One of the most important aspects of managing these conditions is recognizing that patterns are highly individualized. What triggers symptoms in one person may not affect another in the same way.

Over time, track your patterns related to:

• Temperature
• Activity
• Sleep
• Stress

can provide valuable insight into personal triggers and tolerances.

Symptom variability is sometimes misunderstood as inconsistency. In reality, it reflects the complexity of conditions that involve connective tissue, neurological systems, and physiological regulation.

Recognizing this can help:

• Validate patient experience
• Improve symptom management strategies
• Guide more informed conversations with healthcare providers

In the final article of this series, we will focus on how to prepare for medical visits when symptoms are complex—offering practical strategies to communicate effectively and navigate care with greater confidence.

Support from our community makes this work possible. The Bobby Jones Chiari & Syringomyelia Foundation (BJCSF) relies on donations to advance research, bring together leading experts, and provide trusted education and resources for patients and families navigating these complex conditions. If you would like to help move this work forward, we invite you to make a contribution here: DONATE HERE.