How Kathy Regan Manages Heat Sensitivity with MS

July 12, 2021

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When I was diagnosed with multiple sclerosis (MS) in 2008, my neurologist told me to say goodbye to hot showers. I was so confused.

He said that most people with MS had heat sensitivity. This means when our core temperature rises, so do our symptoms. So, yeah, no more hot showers for me.

What that neurologist failed to tell me was that it goes way beyond not taking hot showers anymore. It means having to become a full-time meteorologist and find ways to combat the heat in summer.

Oh, and fevers. Fevers are very bad. Overheating when working out? That’s bad too. Did I mention using a blow-dryer can do it too? Yep. Oh, and hot tubs and saunas. Basically, overheating in any way is to be avoided.

The association of heat sensitivity and MS is so blatant that long before there were high-tech diagnostic tools like MRIs or lumbar punctures, doctors would put people in a hot bath to see if it brought on worsening symptoms. If it did, they were given an MS diagnosis.

Heat tends to worsen symptoms that a person has already experienced. For me, that means my cog fog, spasticity, weakness, and blurry vision become more pronounced. These symptoms tend to improve as I cool down.

This type of symptom worsening and abatement upon cooling is called a psuedoexacerbation, as opposed to a full relapse or exacerbation. (Fun fact: There is a fancy name for when elevated body temperature impairs vision: Uhthoff’s phenomenon. Don’t try to pronounce it — just try to avoid it!)

So, how do you keep your cool when the temperature soars in the summer? I’ve got you.

Here are my top six tips for dialing down your core temperature.
 

1. Don’t go outside when it’s really hot

I know this one sounds like a no-brainer, but sometimes the most obvious answer could bite us before we see it ourselves.

I don’t exercise outside (hello treadmill), I only go to and from my car and air-conditioned buildings, and the only time I’ll hang out outside will be in water, as in a pool, a lake, or an ocean. Cooling water is the key.
 

2. Use a handheld, battery-operated fan with a water sprayer on it

I add a few drops of lavender essential oil in the water to make it feel and smell like I’m at a spa.

It’s surprising what a huge difference spraying a little water on your face, arms, and legs can make, especially when you follow it up with a fan.

Bonus: It’s like having your own glam squad hanging with you. You have that hair-blowing-in-the-wind look wherever you are!
 

3. Avoid alcohol

This one is no fun at all, but I’ve tested it and it’s true: Don’t drink alcohol when it’s hot.

While results of research around the effects of alcohol on MS are inconclusive — studies have found both positive and negative associations — I know firsthand that alcohol affects me differently in the heat.

While I can normally have two or three glasses of wine (with water in between, of course) and feel just fine, when I’m out in the heat, the effects of the alcohol happen much faster.

A few years ago, I was at an outdoor concert on a hot summer day. I had a glass of wine and felt dizzy and nauseous immediately. Between the dehydrating effects of both the heat and the alcohol, I was in trouble quickly.

I needed to get to the first aid tent, tell them about my MS, drink a ton of water, and have fans blasting on me to cool me down. I was fine, but it was a scary half hour or so.

The weakness and cog fog that were left behind lasted a couple of days. Totally not worth it. It’s water and water only for me in the heat these days.
 

4. Dress for the weather

When the weather is scorching, dressing appropriately can make a huge difference.

Opt for light-colored, lightweight, loose-fitting clothes. You’ll be glad you did.
 

5. Drink tons of cold water

Other cold liquids are good too, but seriously, you can’t beat water for its hydrating and cooling effects.

Popsicles can also help cool you down from the inside out. Plus, they’re just fun to eat. They make me feel like a kid!
 

6. Wear a cooling vest, neck wrap, or bandana

I believe I’ve tried every cooling vest, neck wrap, and bandana that is currently on the market, and let me assure you, they can make a big difference.

I like Frogg Toggs neck wraps and bandanas.

When it comes to cooling vests, the ThermApparel UnderCool vest has made all the difference in the world. Other vests are big and bulky and didn’t really keep me cool very long. Plus, they made me look like I had a bomb strapped to my chest.

The UnderCool vest fits so snugly that no one can tell I have it on, even when I’m wearing a T-shirt. It keeps me cool for about 3 hours.
 

The bottom line

Summer can be such a fun time of year if you plan for it and pay attention to your own thermostat.

Don’t give MS any more than it already takes. Enjoy your summer — and stay cool!

Kathy Reagan Young is an MS patient advocate, blogger, and podcaster. You can find her at FUMS and you can get on the waiting list for her latest project Patients Getting Paid, a membership community to help people with chronic illness find and create flexible, remote work to accommodate their health at PatientsGettingPaid.com/list.

Last medically reviewed on July 12, 2021

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