Hot weather can take a toll on anyone. But for people with myasthenia gravis, heat can be especially distressing since it can be a trigger that worsens symptoms.

Fortunately, there are steps you can take to beat the heat and feel your best in the warmer months of the year. Read on to learn the how and why of hot weather and myasthenia gravis, along with some helpful tips to beat the heat and feel your best.

How Does Heat Affect People With Myasthenia Gravis?

Myasthenia gravis is an autoimmune condition that causes muscle weakness that may affect individuals differently. Myasthenia gravis typically affects the arms and legs, face, eyes, and neck. Fatigue and weakness, double vision, droopy eyelids (ptosis), difficulty walking, and problems with speaking, chewing, and swallowing are common symptoms. In some cases, myasthenia gravis can affect respiratory muscles and make it hard to breathe.

Many MGteam members have shared ways heat affects their myasthenia gravis symptoms:

• “Exhausted today. Heat wears me out. It drains me.”
• “Heat is horrible, neck and shoulders ache. Trying to keep my faith up.”
• “I’ve felt pretty rough today. I’ve been nauseous most of the day. The heat outside is so, so hard on me. I feel like a big limp spaghetti noodle, y’all.”
• “Well, with excessive heat AGAIN in Illinois, and I went and did it again. Spent too much time out in the heat yesterday to the point I had a headache, a fever, feeling very cold and very unstable.”

Why Does Heat Worsen Myasthenia Gravis Symptoms?

Medical researchers don’t fully understand why heat can trigger or worsen myasthenia gravis symptoms. Myasthenia gravis is a neuromuscular condition in which the immune system damages the connections between nerves and muscles. There’s some evidence that heat may interfere with signals between nerves and muscles. Hospitalizations in the U.S. due to myasthenia gravis occur more often in the summer.

Notably, one study showed that new myasthenia gravis cases are much more likely to develop in the summer months, or high heat, than other times of the year. However, researchers concluded that more studies are needed to better understand why this is the case.

Tips for Managing Myasthenia Gravis in Hot Weather

If hot weather worsens your myasthenia gravis symptoms, you can take precautions. Knowing how to prepare for warm temperatures can help you manage the heat and improve your quality of life.

Here are some tips for managing heat that you can discuss in more detail with your myasthenia gravis care team. It’s important to talk to your doctor right away if you experience new or worsening myasthenia gravis symptoms.

1. Stay Inside During the Hottest Time of Day

When summertime hits, it’s best to stay inside during the heat of the day, particularly during heat waves. Plan outdoor activities around cooler early mornings and evenings. If you’re concerned about getting enough exercise or physical activity during the daytime, try to find an air-conditioned gym or other cool indoor place to be active.

One MGteam member wrote, “It’s 92 Fahrenheit where I live, with a heat index of 104. I love being outdoors, but the heat kicks my butt. I went to the YMCA yesterday and worked out. It felt good being in the AC to release stress and chill out. I wanted to go walking in the park after, but the weather had other plans.”

“The humidity and high dew points are what sets me into flare-ups really bad,” said another member. “If it starts getting hot, I close up the house and put the AC on and try not to go outside except to my car if I have to go anywhere. I stay in and relax, watch a movie, or read on those days.”

2. Avoid Direct Sunlight When Outside

Some people with myasthenia gravis find warm temperatures more tolerable if they dress appropriately and limit exposure to the sun. When outside in the summer heat, take care not to do too much and overexert yourself. Always carry water or have some nearby.

“I bought a hat to shade my face and sunglasses that cover any and all sunlight from my eyes,” an MGteam member said. “After being in the sun a while, I make sure to rest in the shade.”

“I wear a wide-brim hat and wrap-around sunglasses,” wrote another. “I also do my outdoor yard and other work early in the morning and limit myself to one or two hours only. Of course, I’m stupid some mornings and work longer, but I do pay a price.”

If you’re traveling in the heat, it’s best to have a companion with you in case you need help.

3. Try a Cooling Vest or Cooling Jacket

A cooling vest or jacket is an insulated garment with compartments that can hold ice packets to help you stay cool. Cooling towels and cooling scarves have pockets for ice as well and can help cool your neck or other parts of your body.

“I fish at Lake Erie, and it gets hot! I use cooling towels,” posted a member. “I also bought a cooling vest, which holds several pockets of ice packs.”

Someone else wrote, “I just got a cool vest. It helps when I’m mowing the grass, both pushing and riding.”

4. Take a Break and Cool Down if You Overheat

If you notice myasthenia gravis symptoms worsening while you’re active in hot weather, it’s important to get out of the heat and rest. In warm temperatures, having a cool space where you can rest is essential. Cool showers can lower your body temperature, and cotton sheets can help you stay cooler when resting or sleeping. Extreme temperatures can contribute to worsening myasthenia gravis symptoms, leading to a life-threatening myasthenic crisis and hospitalization. Therefore, it is important not to overlook worsening symptoms.

“I went out for lunch with family members, and I almost didn’t make it through. The heat and humidity did a number on me. Made it home and now in bed resting,” an MGteam member shared.

“I stay out of the heat,” wrote another. “I only go outdoors to get into the car. Air conditioning and ceiling fans are a must. I also try to do things around the house in the morning because that’s when I have the most energy. Resting when you start to fade is a must.”

A different member said, “I have fans and an air conditioner running all summer/spring. Cool showers help. When on the go, a battery-operated fan that also sprays is nice, and a cooling scarf or two.”

5. Recognize and Avoid Heat Sources

In warm weather, make sure you’re not adding extra heat to your home. On hot days, be sure to close your curtains or shades to block the sun. You can also plan meals that don’t require you to use the oven, which can make your kitchen too warm.

Keep your car parked in the shade or a garage. If you have to park on the street, car windshield shades may help. Cars can trap a lot of heat if left in the sun.

6. Stay Hydrated

It’s easy to get dehydrated in the heat. Dehydration can also worsen myasthenia gravis symptoms. Drink plenty of water. You can also get added hydration and nutrition from salads because lettuce greens, spinach, and vegetables, such as cucumbers and tomatoes, have high water content. Fresh fruit, such as watermelon and berries, also contributes to hydration and can be made into smoothies.

“Hydrate! Hydrate! Hydrate! My muscles love H20. I drink lukewarm water mostly. It goes down easier. Yeah, even in the heat. I’m hydrating the best I can,” an MGteam member said.

One member shared their advice, “Stay at home. Stay hydrated. Smaller, more frequent meals. Reduce energy use. Increase rest. I pay attention to my body.”

“I always have a cup of crushed ice with me. When I start feeling hot, I start crunching or just put ice in my mouth,” a member wrote. Ice water can also keep you cool and hydrated.

Talk With Others Who Understand

MGteam is the social network for people with myasthenia gravis and their loved ones. On MGteam, members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.

Does summer weather worsen your myasthenia gravis? What are your tips for beating the heat? Share in the comments below, or start a conversation by posting on your Activities page.