How I Manage MS Heat Sensitivity During the Summer

A combination of lifestyle changes and helpful tools keeps me cool.

“Mom, your house is like a morgue!”

I hear this complaint from my children each summer, as they curl up in blankets while I’m happy and comfortable in my spaghetti-strap summer dresses. No one (other than me) is allowed to touch the thermostat, though, seeing as it took multiple setting changes to find just the right range to suit my sensibilities.

In the past, I blamed my heat sensitivity on my on-the-go lifestyle. I blamed it on menopause. I blamed it on crazy weather changes.

Hindsight truly is 20/20. I was officially diagnosed with multiple sclerosis (MS) 1 year ago, but I now realize I’ve had this condition much longer as I look back in time. Those thermostat wars with my kids should have been a red flag. I believe heat intolerance was my first noticeable MS symptom, so managing it became a way of life long before I first became acquainted with the work of Dr. Wilhelm Uhthoff.

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Uhthoff’s phenomenon and MS

The Uhthoff phenomenon is named after this German ophthalmologist who discovered in 1890 how heat worsens neurological functioning in people with MS.

Fast forward to the 21st century, when researchers now estimate that 60 to 80 percent of people with MS experience a temporary worsening of symptoms due to heat. Even the slightest rise in core body temperature (one-quarter to one-half of a degree) can interfere with nerve impulses already damaged by demyelination. This results in increased symptoms, such as fatigue, concentration, pain, and blurred vision.

Gone for me are favorite summer pastimes, such as sunbathing by the pool and taking day-long hikes. Hard cardio training? Gone. Hot tubs and infrared saunas? No can do!

I have quickly advanced from relapsing-remitting MS to secondary progressive MS. And with that progression, I have experienced a significant change in my sensitivity to heat. When I’m overheated, fatigue and double vision take over and my energy drains. I sweat so much that I look like I just stepped out of a shower.

Worst of all, the pain flares that I experience daily on the right side of my body come in waves until my core cools down. Heat sidelines me quickly and without warning.

Plan for success

I have lived in multiple states and climates, going from the dry heat of Colorado to the more intense heat and humidity of Texas and North Carolina. Over time, I’ve learned to adapt so I don’t become a couch potato all summer long.

First and foremost, I use a weather app on my phone so I can check for detailed daily forecasts and plan, plan, plan. While the outside temperature may be a beautiful 78 degrees, it registers in my body like it’s 118 degrees.

So, I now plan events for late afternoon or evening when the air is cooler. I love to garden, so I enjoy that in the early morning. If I’m going to an outdoor activity, I arrive early so I can grab a seat in the shade.

The bonus: Scheduling things this way also helps my family and friends understand how heat affects me.

Adapt and conquer

I’ve also learned to adapt my exercise regimen. I still get to do the things I love, but in ways that make more sense for me.

When I hike, it’s no longer straight up a mountain. Instead, I find a relatively flat, forested trail. My indoor workouts have evolved from sweat-inducing gym rat sessions to a mellow tai chi practice.

I’ve also found an indoor hydrotherapy program specifically for folks with MS. I get to double my fun this summer: exercise plus a cool pool!

My class was recommended to me by my physical therapist and is run through my local parks and recreation district. I encourage you to check your community for similar programs.

Indulge in cool summer treats

I have found that the ways in which I fuel my body also make a difference in my symptoms, including heat intolerance. I’ve become a pescatarian, cut out caffeine and alcohol, gone organic, and stay hydrated thanks to continual encouragement from my daughter.

Beyond that, I’ve rediscovered foods that were a cool (pun intended) part of my childhood. Chilled watermelon slices, frozen blueberries by the handful, homemade ice cream, popsicles, and grandma’s lemonade help me feel cooler. So do cucumbers, nectarines, and pretty much anything else with high water content.

I also scour websites and blogs for healthy, refreshing recipes that don’t involve turning on the stove or oven, like cool pasta salads and chilled soups. Eating smaller meals also helps.

For beverages, cool, clear fluids are the way to go. If you’re like me and get bored with water, try adding fresh lemon slices or fruit to change things up. I love brewing my own decaf iced tea. (Stay away from caffeinated drinks, though, because they can be dehydrating.)

And I’ve said bye-bye to wine! Not only can alcohol lead to dehydration, but it can also make your body feel hotter than it really is. Cutting out alcohol may be a bummer, but that doesn’t mean you have to miss happy hour with the gang. Opt for a cold, non-alcoholic beverage. I geek out and ask the bartender to put water and lemon or lime in a wine glass.

Dip into the MS toolbox

I’ve also come to rely on a handful of supplies, tools, and gadgets that make life with MS a little bit easier in the summer.

These include:

• Umbrellas that offer sun protection: Some can attach to railings or outdoor chairs, and some swap the traditional round shape for useful angles instead. My favorite umbrella also acts as a portable mister, complete with a fan, which is perfect when walking my dog.
• Handheld or wearable fans: They make me feel fancy and create a nice cooling breeze. I was recently gifted a fan that wraps around my neck like a pair of headphones and has adjustable vents that blow air down my back and neck. It’s safe to say I’m a fan of the fan.
• Handheld spritzers or a water bottle with a fan: These are inexpensive, travel-ready, easy to use, and reliable.
• Lightweight, breathable clothes: Depending on my daytime activities, I layer clothing that I can remove as the day gets warmer. You can also purchase clothing engineered to keep you cool. I find that keeping my neck and head cool helps me through most summer days. I particularly like the cooling neck wrap I purchased last summer. The National MS Society shares a list of vendors that offer cooling equipment and garments, many of whom offer discounts.
• Air conditioning: If you have it, use it — even if it’s just a small, portable unit. If you don’t have A/C, work in visits to your favorite indoor spots with air conditioning. Window shopping at my favorite mall or catching a movie in the middle of the day are my favorite treats. In addition, many utility companies and local communities offer discounts on air conditioning for those in need of assistance. And, according to the National MS Society, the cost of an A/C may be tax deductible if your physician writes a prescription for it.

The takeaway

MS has unique challenges. Managing summer heat is doable with the right tweaks and adjustments. It can also push you out of your comfort zone to discover new delights and passions.

Stress is one of my biggest triggers for MS symptoms, so I look for things I can change or control. Heat management is one element I’m determined to master.

Until then, I expect to hear, “Mom, your house is like a morgue!”