Temperature Regulation in hEDS

Many people with hypermobile Ehlers-Danlos syndrome (hEDS) have trouble regulating their body temperature. This includes being overly sensitive to heat or cold, sweating too much or too little, or feeling hot or cold for no clear reason. These symptoms are common and can affect daily comfort, safety, and quality of life.

These temperature problems are often linked to changes in the nervous system, poor circulation, and fragile connective tissues. While doctors are starting to recognize these issues more often, many people still go undiagnosed or misunderstood.

How Common Are Temperature Regulation Problems in hEDS?

• Temperature regulation problems are very common in people with hEDS, but they are often underrecognized or not formally diagnosed.

• In clinical studies, sweating abnormalities and temperature sensitivity are frequently reported, especially among adults with hEDS.

• About 60% of adults with hEDS have been found to have small fiber neuropathy, a nerve problem that affects temperature sensation and sweating.

• Precise data for children and older adults is lacking, but symptoms are described across all ages.

• Many patients report that these symptoms significantly affect quality of life, increase fatigue, and limit daily activities.

What Causes Temperature Regulation Problems in hEDS?

• Autonomic nervous system dysfunction (dysautonomia)

  • Poor control of sweating and blood vessel dilation/constriction

  • Common in people with POTS and orthostatic intolerance

• Small fiber nerve damage

  • Affects nerves that sense temperature and control sweating

  • Can cause reduced ability to feel heat/cold and respond to it properly

• Connective tissue laxity

  • Blood vessels may be too stretchy to hold tone

  • The body may not warm up or cool down efficiently

• Mast cell activation (MCAS)

  • May cause flushing, chills, hot flashes, and unusual sweating

  • See separate article on MCAS in hEDS

• Low muscle mass and altered metabolism

  • Less heat produced by the body

  • Poor circulation may worsen cold intolerance

• Medications, age, and comorbidities

  • Some medications, especially in older adults, can interfere with heat and cold response

  • Children and older adults with hEDS are at higher risk for complications like overheating or hypothermia

Common Symptoms

• Heat Intolerance

  • Easily overheated with minimal activity or warm weather

  • Excessive sweating (hyperhidrosis) or little to no sweating (anhidrosis) commonly seen in association with autonomic dysfunction and small fiber neuropathy

  • Dizziness, nausea, or rapid heartbeat in the heat

  • Heat can worsen fatigue, brain fog, and orthostatic symptoms

• Cold Intolerance

  • Cold hands, feet, nose—even in warm conditions

  • Shivering or feeling chilled without a clear cause

  • Skin that looks pale, blue, or blotchy (mottled)

• Abnormal Temperature Sensation

  • Feeling too hot or too cold for no reason

  • Sudden “hot flashes” or waves of cold without a fever

  • Sweating from only one side of the body or in patches

• Paradoxical Responses

  • Feeling cold in hot weather or hot in cold weather

  • Symptoms that don’t improve with appropriate clothing or temperature control

Treatment Options

• For Heat Intolerance

  • Avoid heat and sun when possible

  • Use fans, cooling vests, or cold packs

  • Stay well hydrated and increase salt intake (if approved by your doctor)

  • Take cool—not hot—showers or baths

• For Cold Intolerance

  • Dress in layers, including thermal socks or gloves

  • Use heated blankets or pads

  • Try warm water soaks for hands or feet

  • Light movement can help improve circulation

• For Autonomic Symptoms

  • Wear compression garments (socks, leggings, or abdominal binders)

  • Medications (if prescribed) such as:

    • Fludrocortisone

    • Midodrine

    • Beta-blockers (low-dose)

  • Follow a slow, graded exercise plan

  • Try autonomic retraining (e.g., Levine Protocol)

Special Considerations by Age

• Children and teens

  • May be extra sensitive to heat or cold

  • Often underdiagnosed because symptoms are mistaken for behavioral or unrelated issues

  • May struggle with overheating at school or during sports

• Adults

  • Temperature issues can worsen over time or during hormone changes (e.g., pregnancy, menopause)

  • May experience both overheating and feeling cold in different situations

• Older adults

  • Have a higher risk of heat exhaustion, dehydration, or hypothermia

  • May take medications that reduce sweating or affect temperature response

  • May need closer monitoring during weather extremes

Safety and Heat- or Cold-Based Therapies

• Saunas and Hot Tubs

  • Can help with pain but may worsen dizziness or overheating

  • Avoid if you have a history of fainting or severe POTS

  • Use for short periods, stay hydrated, and avoid slippery environments

• Extreme Weather Precautions

  • People with hEDS may be more vulnerable to heatstroke or hypothermia

  • Children and older adults are at especially high risk

  • Take early action with symptoms like confusion, fatigue, nausea, or chills in extreme temperatures

Practical Tips for Daily Life

• Keep a log of temperature-related symptoms to find patterns

• Use wearable heart rate or temperature trackers if helpful

• Dress in layers that can be removed easily

• Adjust your environment: use fans, space heaters, heating pads, or cooling towels

• Maintain hydration and electrolytes, especially during physical activity or hot days

• Monitor medication side effects that may increase temperature sensitivity

Summary

Temperature dysregulation is a common and significant feature of hypermobile Ehlers-Danlos syndrome (hEDS), affecting individuals across all age groups. It likely results from a combination of autonomic nervous system dysfunction, small fiber neuropathy, and connective tissue fragility. Common symptoms include heat and cold intolerance, abnormal sweating, and paradoxical sensations such as feeling hot in cold environments or cold in the heat. These symptoms can fluctuate, significantly impact daily functioning, and contribute to fatigue, discomfort, and reduced quality of life.

Management is primarily supportive and adapted from dysautonomia care, focusing on hydration, environmental modifications, compression garments, and graded physical activity. Emerging explanations such as nerve dysfunction and mast cell activation may contribute in some individuals, but targeted treatments are still lacking. Increased clinical awareness and individualized strategies remain essential for improving comfort, safety, and overall well-being in people with hEDS who experience temperature regulation disturbances.