Traveling With LEMS: Tips for a Safer, More Comfortable Trip

If you’re living with Lambert-Eaton myasthenic syndrome (LEMS), travel may feel off limits — like something from your “old life,” but not in the cards these days.

But people with LEMS can, and do, travel — for appointments, pleasure and everything in between.

With the right preparation and a flexible mindset, you can keep your health front and center and even enjoy your time away.

“You can still travel,” says neurologist Georgette Dib, MD. “You may have limitations and need to make some adjustments to manage your symptoms and care for yourself.”

If getting through your day-to-day with LEMS is already a challenge, it’s understandable if the idea of a getaway seems out of reach.

Navigating airports, long car rides and busy itineraries can feel cumbersome. And planning around muscle weakness, fatigue and dizziness can seem like more hassle than it’s worth.

“Traveling can bring added stress as you worry about your symptoms flaring or not having what you need nearby,” Dr. Dib acknowledges. “But we want you to be able to live your fullest life, and travel can be part of that.”

How to plan ahead for travel with LEMS

Traveling successfully with LEMS starts with thinking ahead well before you leave home. Proper planning can help you conserve your energy, avoid unnecessary stress, and stay safe on travel days and at your destination.

Dr. Dib offers these tips.

Choose your destination carefully

Where you go — and how long it takes to get there — can make a big difference in how you tolerate travel.

Long trips and physically demanding destinations can be more tiring. Hot or humid climates may also make LEMS worse.

That’s not to say you can’t or shouldn’t take a bigger trip or enjoy a day at the beach, if that’s your goal. But you may consider building in more rest time than usual if you do.

Manage your medications

Keeping up with your medications is key to managing LEMS.

Make sure you have enough medication on hand to last for your journey. It doesn’t hurt to have a buffer back home, too, so you don’t have to run out for more as soon as you get home.

Pack your medications in your carry-on bag so they’re within reach. And if you’re crossing time zones, avoid changing your schedule all at once.

“If you’re changing time zones, adjust your medication timing gradually — by one to two hours per day — to help your body adapt and prevent weakness,” Dr. Dib advises.

Pack what you need

Carting around heavy luggage can add to your fatigue. Plan to pack light when you can. And have a trusted travel buddy tote your things, if possible.

There’s a balance here, though: You don’t want to skimp on items you need to stay comfortable and fueled. Make sure you have snacks, water and assistive devices on hand.

Prepare for airport needs

Airports are big, crowded and physically demanding. But there are ways to make air travel more comfortable and less taxing.

Use these strategies:

• Request a wheelchair or airport assistance to help you get through security and to your gate.
• Choose an aisle seat so it’s easier to stand and move when you need to.
• Board early, and allow others to get off the plane ahead of you, so you don’t feel rushed.
• Keep medications, snacks and other essentials within easy reach — no one wants to have to dig through overhead compartments mid-flight.

Take care in the car

Long car rides come with their own challenges. Sitting for extended periods isn’t ideal for LEMS, so plan to stop regularly. Get out, stretch and move around often.

During the drive, small movements can help, too.

“Moving your muscles, even while sitting, can improve your strength,” Dr. Dib advises.

While in the car, you can:

• Do neck circles
• Raise your knees
• Kick out your feet
• Roll your ankles
• Circle your wrists
• Shrug your shoulders

When you get out of the car, move slowly. This can help keep dizziness at bay and keep you steady on your feet.

Pace yourself during your trip

Once you arrive, it can be tempting to rush into the fun stuff. But taking your time is key.

Avoid overpacking your itinerary. Keep your plans flexible, and leave lots of room for breaks.

Conserve your energy by alternating activity with rest. That can help you enjoy your trip without overexerting yourself.

“We generally recommend moving for an hour and then resting for an hour,” Dr. Dib suggests. “The best thing you can do is listen to your body. Activity is good for LEMS, but you want to balance that with rest.”

Stay hydrated and nourished

Hydration plays a big role in managing LEMS symptoms, especially if you’re also dealing with issues like dizziness or dry mouth.

Drink water regularly throughout your trip, even if you don’t feel thirsty. And bring healthy, protein-rich snacks to help you keep up your energy.

Bottom line: Plan ahead, but stay flexible

Living with Lambert-Eaton myasthenic syndrome may change how you travel, but it doesn’t have to stop you.

The key is flexibility. Plans may need to shift. You may need more rest than you used to. And that’s OK. Your travels can still be meaningful and enjoyable — even if it looks different from how you remember it.

If you’re concerned about managing medications or symptoms away from home, talk with your healthcare provider about strategies that will work best for you.