Beat the Heat: EDS, Hypermobility & Heat Intolerance

Estimated reading time: 9 minutesI’ve always struggled with heat since a child. I remember heat rash or prickly heat starting around the age of 6, together with dizziness and sickness. 

My doctor prescribed eating lettuce covered in salt – he must have been ahead of his time. No one mentioned hypermobility, EDS, and common co-occurring conditions for a very long time.

As an adult, saunas and heat rooms are a big no, causing fainting. Hot showers or baths also make me unwell (the weird thing, of course, is that because I always feel cold, I love hot showers, but I’ve learnt the hard way not to have them).

As summer approaches, people love being out in the sun. I do too – but my body doesn’t agree.

Headaches, fatigue, dizziness, and palpitations often show up. You’ll find me in the shade and always wearing a hat if possible (of course, you’ll also see me wearing a woolly hat in the cold weather because the cold gives me headaches too!).

But what causes these reactions to heat, and what practical solutions are there to help manage them?

This week’s blog explores heat intolerance, and our wonderful Zebra Club community has stepped up with a wealth of knowledge and lived experiences to help us understand how an EDS/HSD body can cope with heat.

What is heat intolerance?

Our bodies work to maintain a core temperature within a couple of degrees of 37°C (98.6°F) to enable normal cellular function. This process, called thermoregulation, is controlled by the autonomic nervous system (1).

When exposed to cold temperatures, blood vessels in the skin constrict to retain heat, while the body generates additional warmth through shivering (1).

Conversely, in warm conditions, these skin vessels dilate to release heat through convection, while sweating provides cooling through evaporation (1).

Heat intolerance occurs when our bodies struggle to maintain this temperature regulation, particularly in warmer environments (2). While high environmental temperatures can pose challenges for everyone, those of us with compromised thermoregulation face greater risks (1).

This impaired temperature control can result from various factors, including certain medications and disorders that affect the autonomic nervous system, leading to dysregulation of the body’s normal thermoregulatory response.

Symptoms of increased body temperature leading to heat exhaustion

When we aren’t able to regulate our body temperature well, this can lead to hyperthermia and heat exhaustion in warm environments, and if not managed, heat stroke. Symptoms to watch out for with heat exhaustion include (1):

• Fatigue
• Irritatbility
• Thirst
• Tachycardia and postural fainting
• Weakness
• Cramps
• Headaches dizziness
• Low urine output
• Nausea and vomiting

As always, please seek medical care, especially with new or significant symptoms.

This post does not serve as medical advice. Heat intolerance can be a symptom of various medical conditions, and proper evaluation by a healthcare professional is essential for accurate diagnosis and treatment.

If you experience severe heat-related symptoms, sudden onset of heat intolerance, or any concerning symptoms, please consult with your doctor promptly.

Causes of heat intolerance: EDS, POTS, and MCAS?

Heat intolerance or heat sensitivity is a common problem experienced in the hypermobile community.

In one study that was trying to compare HSD and hEDS, 45% of participants with HSD and 30% of those with hEDS self-reported experiencing heat intolerance (3).

Another study on people with joint hypermobility syndrome and EDS hypermobility type (prior to the newer classification) found that heat was reported to be related to fatigue severity. They proposed that this may be related to orthostatic intolerance associated with dysautonomia, which we know is commonly found to occur with EDS (4).

Dysautonomia and heat intolerance

Since thermoregulation, or the ability of the body to regulate the temperature, is an autonomic function, it makes sense that this may be impacted with we have autonomic dysfunction or dysautonomia.

Sudomotor function involves the regulation of sweating, and this can be impacted by dysautonomia. Sweating too much, sweating too little, and temperature intolerance are a result of this dysfunction and are considered a key manifestation of dysautonomia (5).

Heat can cause vasodilation (enlargement of blood vessels) as mentioned above. This can, in turn, make orthostatic intolerance and POTS symptoms worse (5).

MCAS and heat intolerance

Mast cells play many roles in the body and have receptors for a variety of pathogens, immune cells, and physical stimuli like temperature (hot or cold) (6).

When the mast cells go haywire and Mast Cell Activation Disorder is present, the mast cells can respond to things that are not normally threats. Heat (and cold) is a known trigger for mast cell activation and can increase discomfort, cause, or make symptoms worse (6, 7).

Some antihistamines that are often used to manage MCAS (and others) can contribute to heat intolerance because they decrease sweating (Diphenhydramine) (7). If this is a concern for you, please speak with your medical team.

Of note: Other medications that can contribute to heat intolerance include SSRIs and SNRIs, Beta-blockers, Aspirin, and more (7). Discussing this with your doctor, paying attention to cooling strategies (see below), and hydration may be helpful.

Tips for Managing Sensitivity to Heat from The Zebra Club community

We went to the experts – The Zebra Club Community! We asked them to share what they use to help manage heat when the temperatures start rising. These real-world tips come from people who understand the daily challenge of temperature regulation with hypermobility conditions.

1. Cooling Clothing and Fabrics

Choose Natural, Breathable Materials

Linen is a game-changer for heat management. As community member Ash discovered: “I was shocked a few years ago to find just how cooling and lightweight linen clothes are. I was on holiday to the beach and wore linen one day and polyester the next – the difference was crazy. Over the past couple of years, I have thrifted lots of linen summer items.”

Key fabric tips:

• Prioritize linen, cotton poplin, gauze, or voile
• Choose loose-fitting, white or light-colored clothing
• Avoid polyester except for athletic wear
• “The weave and weight of the fabric can be just as important as the fabric content” – BendyChristy

Expert fabric selection from BendyChristy: “Clothing is ideally minimal, loose fitting, white, thin linen, and thin cotton poplin, gauze, or voile. This makes it tricky to shop online. When shopping online watch out for linen clothing with polyester liners, a polyester liner totally defeats the purpose, rip it out and wear full coverage skin colored underwear.”

Layer for Temperature Changes

“Wear light natural fibers, wider clothes in layers that can easily be taken off (or put on because I get cold easily too)” – Helene

2. Bedroom and Sleep Solutions

Cooling Bedding Options

• Silk duvets for natural temperature regulation – “A silk duvet” – DanielaS
• Cooling duvets that actively cool when you move: “Cool duvet (Amazon) -when you move it, it actively cools down a bit -not brilliant but I’ll take anything when it’s 28°C at night!” – Hen
• Pet cooling mats placed by the bed: “Also have a pet cooling mat by the bed which I sling over myself if needed for immediate cooling effect. The cat wouldn’t use it -more fool him!!” – Hen
• Cooling weighted blankets: “I just found cooling weighted blankets which are really helpful. They conduct heat away from the body but also give us the weight sensation we need to fall asleep” – Caroline
• Bamboo Sheets – Ian

Nighttime Cooling Techniques

Mischa shares her multi-step approach: “I love to rinse my hair, and put it up in a bun still quite wet. It helps me stay cooler. I have a small, clip-on fan blowing directly on me, and can adjust the angle and speed any time during the night.”

3. DIY Cooling Methods

Ice-Based Solutions

Old-fashioned ice remains unbeatable. BendyChristy, who lives in a very hot, humid climate with POTS, explains: “I have tried lots of cooling gadgets over the years but nothing beats good old ice! Every other gadget I’ve tried is warm after 15 minutes, but this can be refilled with ice from any place that sells drinks.”

Water-Based Cooling

• Cold foot soaks: “Putting my feet into a container of cold water” – Jan
• Cold wrist rinses: “My dear Mum always said to run cold water over your wrists” – Marnie
• Cool showers: “In the summer when I shower, I will turn the temperature down as low as I can stand it and that helps if I’m overheated” – Allison
• Creative water applications: “Very simple but I always have a tiny spray bottle with water in my bag and am constantly misting my face and arms with water, it absolutely works wonders – and my friends and family love me for it as well 😂” – littlebee

4. Specialized Cooling Products

Neck Cooling Solutions

• Cooling neck rings kept in the freezer: “I discovered these cooling neck rings last summer and I love them, I keep a few in the freezer” – Katie (Staff)
• Cooling scarves: “I also have a scarf with gel pellets in it that absorb a lot of water and will cool my neck for hours by the evaporation of the water” – Helene
• Wet scarves: “Cooling cloths around the neck. Makes me think of Susan Sarandon in Thelma and Louise do this with a scrap of her scarf” – Rachael

Portable Cooling Devices

• Handheld battery-operated fans: “Hand held battery operated fans” – Hen
• Neck fans: “I just got myself one of these and it seems like it’s going to be very helpful!” – Meg
• Portable fans: “I’m getting a shark fan” – Bethany (Ambassador)
• Embr Wave wristbands: “I love my Embr Wave wristband, and will also run cold water over my wrists and splash my face with cold water” – Mischa
• Cooling vests: “It’s been very helpful in hot situations like ball games” – Bethany (Ambassador)

5. Hydration and Internal Cooling

Hydration is so important. Nutritionist Lorna Ryan wrote a great blog for us on hydration, electrolytes, and POTS.

Strategic Drinking

• Metal water bottles: “Also metal water bottles instead of glass or plastic as seems to keep cooler for longer. Lots of ice” – Hen
• Cool (not ice-cold) beverages: “A lot to drink but not ice cold e.g. cold fruit or herbal tea” – Lucy
• Electrolyte drinks: “Lots of cool electrolytes drinks too” – Mischa
• Increased hydration: “I up my hydration considerably. It’s amazing how being dehydrated can cause such bad temperature dysregulation” – Ash

6. Home Environment Management

House Cooling Strategies

Hen shared a comprehensive home cooling strategy: “We keep the house temperature as low as possible (no air con. We have shutters on our windows and keep them closed during the day in summer. We open windows at night to let cool air in but close them during the day -to keep hot air outside- and use fans.”

Additional home tips:

• Natural landscaping: “We also are in the process of planting even more plants around our outdoor sitting area as more plants make for more agreeable temperatures” – Helene
• Wall cooling: “We have lots of climbing plants on our walls. It works pretty good. People always remark on how cool our house is on hot summer days” – Helene
• Outdoor shading: “We’ve made a large awning that allows me to sit in the shade and keep that part of the garden cooler” – Helene
• Patio cooling: “I have misters around my patio so I can stay cool while throwing the ball for my dog” – Aimee

Strategic Timing

“On sunny summer days we keep the curtains and windows closed as long as the temperature outside is higher than inside” – Helene

7. On-the-Go Cooling Solutions

A Portable Cooling Kit

• Fine misting spray bottles: “Have a fine misting spray bottle with peppermint essential oil in the water” – Helene
• Cooling towels: “I use cooling towels (Frog Toggs)” – Ash
• Beach shade shelter tents: “Beach shade shelter tent for beach or garden” – Lucy
• Umbrellas: “An umbrella to create shade” – Lucy

Fashion and Function

• Big sun hats: “Big sun hats” – Lucy
• Hair management: “Oh, and hair up! I will whip my hair into a bun just to walk from the air-conditioned car to the air conditioned building” – BendyChristy
• Friction prevention: “‘Chub rub shorts’ if there is skin friction” – Lucy

8. POTS-Specific Cooling Strategies

Compression and Cooling Balance

For those managing POTS with compression garments, janinekits shares: “For POTS I really need to wear my waist high compression tights, especially on hot summer days. But unfortunately it diminishes the cooling effect of flowy, cooling clothing. Wetting my legs under the shower while wearing the compression tights really helps. I do it a few times a day.” Janine

9. Natural Cooling Remedies

Essential Oils and Sprays

• Peppermint for cooling: “I also find the essential oil, peppermint, to be very cooling” – Ash
• Alcohol and peppermint spray: “I spray alcohol with a drop or two of peppermint on my neck, under my arms, or on my back” – Mischa
• Face and arm misting: “Very simple but I always have a tiny spray bottle with water in my bag and am constantly misting my face and arms with water, it absolutely works wonders” – littlebee

Body Positioning and Techniques

• Strategic positioning: “I find sitting rather than standing in the sun and being hydrated” – Fiona brown
• Frozen hand therapy: “More for hand pain, but it is cold, a plastic tub of rice kept in the freezer is so lovely to sink swollen sore paws into” – Racheal

10. Planning and Prevention

• Study locations in advance: “When camping I study Google maps and campsite plans to ensure we can reserve a spot in the shade” – Helene
• Climate-specific strategies: BendyChristy, living with POTS in a very hot, humid climate, shares: “My number one rule is ‘stay inside’! Not very practical but there you have it; every building in my climate has air conditioning. From June to November I go from air-conditioned house to air-conditioned car to air-conditioning building.”
• Set temperature limits: “But on hotter days (above 22 Celsius) I just don’t go outside” – Helnene

Creative Cooling Combinations

• Multi-cooling approach: “Also the cooling scarf Helene mentioned, I wear one around my neck and one around my wrist. And instead of a heating pad at the foot of the bed, in summer I have a cooling pad meant for pets at the foot of my bed” – janine

Community Wisdom: The Bottom Line

The most important advice from our community? Listen to your body and don’t be afraid to prioritize your comfort. As one member noted: “My body has been doing a great job of taking care of me over the years.”

Heat intolerance with EDS and dysautonomia requires creative solutions and advanced planning, but with the right strategies, you can stay more comfortable.

FAQ

Does Ehlers-Danlos cause heat sensitivity or heat intolerance?

Heat sensitivity and heat intolerance are commonly reported by people with EDS. It is unclear if it is EDS alone that causes is but dysautonomia, MCAS, and certain medications definitely contribute to this.

What is heat intolerance?

Heat intolerance is an inability of the body to maintain body temperature in response to elevated temperatures. This is often a result of autonomic dysfunction.

What causes heat intolerance?

There are multiple conditions and medications that can contribute to heat intolerance. Many of these impact the autonomic nervous system regulation of body temperature, including the ability of the body to sweat effectively.