July Chit Chat Recap: Coping with Summer Heat When You Have LEMS
Summer can be one of the most challenging seasons for people living with Lambert-Eaton Myasthenic Syndrome (LEMS). During this month’s LEMS Family Chit Chat, members from across the U.S. and internationally shared how heat affects their symptoms and the practical strategies they rely on to stay safe and active.
While everyone’s experience with LEMS is unique, there was one message nearly everyone agreed on:
Heat often increases weakness, fatigue, dizziness, and overall symptom severity. Learning to recognize your body’s limits—and planning around them—can make a significant difference.
Tips Shared by the Community
Avoid the hottest part of the day
Many participants plan outdoor activities for the early morning or evening when temperatures are lower. Several members said they simply avoid being outdoors during the hottest hours whenever possible.
Stay in cool environments
Air conditioning remains one of the most effective ways to prevent symptom flare-ups. Members who live in warmer climates shared that spending more time indoors on extremely hot days has become an important part of managing their LEMS.
Protect yourself from direct sun
Several participants found that staying covered actually helped them stay cooler.
Suggestions included:
- Wearing a wide-brim hat for shade
- Choosing lightweight, breathable fabrics such as linen or cotton
- Wearing long sleeves made from lightweight materials to keep the sun off the skin
- Applying sunscreen when outdoors
Use cooling products
Community members recommended several products that helped them regulate body temperature, including:
- Cooling towels or cooling scarves activated with water
- Portable neck fans
- Handheld misting fans
- Cooling bed sheets for sleeping
- Cooling vests (some members have even received them through their healthcare providers)
Not every product works the same for every person, but many participants encouraged experimenting to find what provides the most relief.
Rethink hot showers
One of the most common challenges discussed was the effect of hot showers. Several participants noticed that warm or hot water significantly increased their weakness afterward.
Ideas that helped included:
- Lowering the shower temperature
- Using a shower chair or bench to conserve energy
- Gradually cooling the water before getting out of the shower
Keep cool while sleeping
Hot nights can make recovery even more difficult. Members shared that using fans, breathable bedding, and cooling sheets helped improve comfort and sleep quality.
Plan ahead
Many participants check the weather forecast before scheduling activities. If high temperatures are expected, they adjust plans, complete errands earlier in the day, or build in extra rest breaks.
Listen to your body
Perhaps the most important advice shared was to respect your body’s signals. Many participants noted that once they become overheated, it can take hours—or even the rest of the day—to recover. Taking breaks before symptoms worsen often helps prevent a more significant setback.
More Than Heat
As always, the conversation extended beyond this month’s topic. Members discussed navigating insurance challenges, finding experienced neuromuscular specialists, preparing for medical appointments, and supporting one another through the ups and downs of living with a rare disease. These conversations continue to remind us that while every LEMS journey is different, no one has to navigate it alone.
Join Us Next Time
Our monthly LEMS Chit Chats are an opportunity to connect with others who truly understand life with LEMS. Whether you’re newly diagnosed or have been living with LEMS for years, every conversation offers practical ideas, encouragement, and a welcoming community.
We hope you’ll join us at our next Chit Chat on August 29! Look for the registration page on our Events Calendar.