POTS, EDS, and the Scorching Sun: Heat Intolerance & Your Summer Survival Guide

Welcome to the sizzling chronicles of summer, a time when we embrace the sun-kissed longer days, BBQs, and hopefully beach trips! But what if I told you that for some folks, this wonderful season feels more like a daunting endurance test than a relaxing vacation? Today, we delve into the sweltering world of Heat Intolerance, a literal hot issue for people with Postural Orthostatic Tachycardia Syndrome (POTS) and Ehlers-Danlos Syndromes (EDS).

“What the heck are POTS and EDS?” – A Quick Breakdown

Imagine living on a seesaw. The ordinary ups and downs that most people take for granted could send you spiraling. Welcome to the world of someone dealing with POTS, a nervous system and cardiovascular disorder that affects circulation and could cause lightheadedness, fainting, and rapid heartbeat, especially upon standing.

Next, let’s travel into the EDS universe – a group of inherited connective tissue disorders that primarily affect your skin, joints, muscles, tendons, and blood vessels. It’s like living in a house where the structural foundation is less reliable than most.

Now, add Heat Intolerance to this mix. It’s like inviting an unruly houseguest who raises the thermostat too high and refuses to leave. Heat Intolerance tends to exacerbate the symptoms of POTS and EDS, making the sun-soaked months of summer a challenge to navigate. I know, I’m about to move back to Texas in the middle of July. My brain fog must have allowed that decision! But there are a few ideas to stay cool that we’re sharing in this article.

Meet Heat Intolerance: The Uninvited Summer Guest

Heat intolerance in people with POTS and EDS could be the result of dysautonomia – where the autonomic nervous system, responsible for our body’s automatic functions, plays the villain. When our body should be adjusting the thermostat to maintain a comfortable internal temperature, dysautonomia may crank up the heat or simply forget to switch on the AC altogether.

Cooling the Summer Sizzle – Practical Tips for POTS and EDS 

Now that we’ve highlighted the issue, let’s not surrender to the summer blues. Rather, let’s crank up our resilience with these practical tips to beat the heat!

  1. Hydrate to Dominate: Dehydration can worsen POTS and EDS symptoms. Fill up on fluids, and we don’t mean the mojitos and margaritas! Keep a water bottle handy, add hydrating foods to your diet, and consider oral rehydration solutions or electrolytes with supplements such as magnesium, potassium, and salt for an added boost.
  2. Fashionably Functional: Wearing light, breathable clothing and donning a broad-brimmed hat can make a significant difference. Sun umbrellas also make a stylish comeback as an unexpected accessory and are often necessary to beat the sun’s rays! You already know to wear sunscreen, right?
  3. Time it Right: Plan any outdoor activities during cooler hours, preferably early morning or after sunset. It’s all about timing when you decide to embrace the day avoiding peak sun.
  4. Cooling Gadgets to the Rescue: Consider investing in some cool-tech – literally! From cooling towels and vests to portable handheld fans – or even those new neck fans are hip! These are not just luxury items, but survival gear for the heat-intolerant.
  5. AC is your New BFF: While we’d all love to soak in some vitamin D, the air-conditioned indoors might be a safer option during peak heat hours, especially as we head into July and August. If you need options away from home, try going to an indoor mall or movie theater for a cool break, if only for a few hours.
  6. Take a Dip: If possible, spend time in a cool pool (or water of any type). Not only does it help with temperature regulation, but it also provides a low-impact exercise option for hypermobile bendy bodies with less gravitational impact on our joints. 
  7. Rest and Recuperate: Don’t push too hard. Heat intolerance can increase fatigue, so it’s essential to listen to your body and rest when needed. Seriously, it’s the time of year to really learn about proper pacing BEFORE you overdo it! 
  8. Love Thy Neighbor, and Their Shade: When you do step outside, seek out shady spots. They can offer surprisingly effective relief from the relentless sun. Rest under the shade of trees or covered areas as you are able.
  9. An Ode to Electrolytes: Replenishing lost salts and minerals is crucial for people with POTS.  Meaning – after you’ve been sweating, replace fluids. Sip on sports drinks or coconut water that comes loaded with electrolytes to keep symptoms at bay as best you can.
  10. Spritz and Cool: Keep a spray bottle of water in the refrigerator. A quick spritz on your face and neck can offer immediate cooling relief. This isn’t just a refreshing luxury, it’s a ticket to a mini oasis amid the summer swelter.
  11. Strategize Your Showers: A lukewarm or cool shower can work wonders for your core body temperature. If possible, plan your showers around the hottest parts of the day for a much-needed cooldown.
  12. Play Detective with Your Diet: Certain foods might exacerbate your symptoms. Keep a food diary to identify potential triggers and avoid them, especially during the warmer months.
  13. Frozen Treats to Beat the Heat: Homemade popsicles or slushies with hydrating ingredients can not only cool you down but also keep dehydration at bay. Who said practical couldn’t be fun? Yes, you can make homemade ones easily in an ice cube tray out of your favorite juice.

Heat intolerance can turn the joy of summer into a season of strife for individuals with POTS and EDS. However, with the right blend of preparedness and awareness, the summer can become less of an enemy and more of a setting for your personal narrative of resilience. Though it might seem like summer living with POTS and EDS is like walking on a tightrope, with a little bit of planning and a lot of self-care, you can transform it into a walk in the park – preferably a well-shaded one! 

Seriously, we understand that embracing the summer spirit might seem like a Herculean task with POTS and EDS, but it isn’t impossible and may even be like a vacation. We hope these tips equip you to deal with the scorching sun and make your summer a little more bearable. As always, consult with your healthcare provider before making any significant changes to your routines. Until then, here’s to turning up the AC and turning down the heat intolerance! No matter how you choose – stay cool, stay hydrated, and remember – just chill!

When the Heat Becomes Too Hot to Handle – Recognizing Heat Stroke 

Summer fun aside, it’s critical to keep an eye out for severe heat-induced conditions like heat stroke. Heat stroke is the most severe form of heat injury and needs to be treated as a medical emergency. While those with POTS and EDS may already be on a first-name basis with dizziness and rapid heartbeats, it’s important to know when the heat is causing these symptoms to cross into dangerous territory.

Here are some signs to watch out for:

  • High body temperature (103°F or higher)
  • Hot, red, dry, or damp skin
  • Fast, strong pulse
  • Headache
  • Dizziness
  • Nausea
  • Confusion
  • Losing consciousness (passing out)

So, what do you do if you or someone else might be having a heat stroke?

  1. **Call 911 right away** — this is a medical emergency.
  2. **Move the person to a cooler place.** If possible, get them to an air-conditioned location.
  3. **Help lower the person’s temperature with cool cloths or a cool bath.** Cooling packs can also be beneficial. However, do not use icy or cold water, as it may cause the body to shock.
  4. **Do not give the person anything to drink.** This might seem counter-intuitive, especially with the emphasis we’ve put on hydration, but during heatstroke, swallowing or even consciousness might be impaired.

While our advice on hydration, cooling, and avoiding heat triggers is still key, it’s essential to remember that heatstroke is a medical emergency that goes beyond our general summer survival guide. 

So, my POTS and EDS warriors, arm yourself with knowledge, prepare your summer action plan, and remember – it’s okay to take it slow. Our battles with heat intolerance might not be the summer adventure we’d prefer, but they are a part of our journey, and each day we learn to adapt is a day closer to becoming an unconquerable summer champion! Stay cool, stay safe, and remember – you’ve got this.

For more great tips: https://www.livescience.com/heat-intolerance-symptoms-causes-and-treatment

July 2023

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