Traveling with EDS and POTS: What I Pack to Survive
Travel is exciting, but when you live with chronic conditions like Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS), it’s also exhausting, unpredictable, and sometimes downright overwhelming. I’ll be honest - I’m a high-maintenance traveler. If you’ve ever seen me heading out for a week away, you’d probably wonder if I was moving in. But every single item I pack has a purpose, and without them, travel would feel impossible.
Here’s a peek inside my travel survival kit and why these things make such a difference for me.
1. Hydration Essentials
Dehydration is a recipe for a full-on POTS flare. I never leave home without:
Electrolyte packets (LMNT, Liquid IV, or whatever works best for you)
A large insulated water bottle that I refill constantly
Pro tip: An Ice Shaker Bottle is amazing because it is insulated and can be used for water or drink mixes like electrolytes, greens, or protein shakes.
Compression socks to help blood circulate when I’m sitting on planes or in the car. (TBH- I don’t love compression, but on long plane rides, it’s worth it.
Bonus: If you have the capability and you’re medically cleared, IV fluids are a lifesaver in helping with or preventing POTS flares. They are part of my weekly maintenance for POTS, and during my last trip, I made time to get one, and it helped so much! Walking around an amusement park the next day felt like a breeze.
2. Comfort and Body Support
EDS means my joints don’t play nicely with new mattresses, airplane seats, or long car rides. To minimize pain and injury, I bring:
Braces or KT tape for joints I know will give me trouble. I have a posture support brace that helps keep my shoulders back in the sockets, which is helpful, especially after extended sitting. I also bring a soft cervical collar to help with my neck because, honestly, one night on a pillow that doesn’t agree with me can flare my neck pain more than anything else.
If I’m traveling by car, I’ll bring my own pillow to help avoid flaring up any neck pain.
My red light therapy wrap. It helps calm down aches and pains, and anecdotally, helps with inflammation.
A Denneroll for my neck. I like to start my day on this to help reset my alignment and improve my neck posture, which is highly affected by different pillows and sitting on an airplane or in a car for extended periods.
Therabands to do stability exercises after long periods of sitting or after sleeping in a new bed.
Options to improve comfort on flights: A neck pillow and a lumbar support cushion
3. Medications and Supplements
I keep all of my daily meds and supplements with me in a small organizer that stays in my carry-on and never in my checked luggage. I also pack:
Extra salt tablets and electrolytes
Rescue meds for flares or allergic reactions (my MCAS friends will relate)
A small stash of snacks that are safe for my dietary needs, so I’m not stuck in an airport or gas station without options. Gluten-free items like protein bars and salty snacks (chips, nuts) are my go tos.
4. Tools for Recovery
Because I know my body will feel it after traveling, I prepare with tools to take care of my body.
I always bring a pinky ball and a guasha or IASTM tool for self-release. These are quick and easy to pack in a carry-on bag.
Magnesium spray or CBD cream to help with aches and pains and calm tired muscles.
Heating pad or portable hot/cold pack to soothe sore joints and muscles. Lately, I’ve been bringing my red light therapy wrap, but a heating pad will suffice, too!
Bonus: a few Epsom salt packets to unwind after a long travel day while easing sore muscles.
5. Accessibility and Energy Savers
Travel is unpredictable, so I try to give myself options:
A small rolling bag instead of a backpack (my shoulders can’t handle the load)
A portable fan or cooling towel is great for dysautonomia symptoms when I overheat.
Bonus: A foldable cane for days you may need a little more stability.
Also, it’s important to know it’s OK to request a wheelchair at the airport. This is one of the best ways to conserve energy for the actual trip, rather than burning yourself out walking long terminals before you even board the plane.
6. The Mind-Body Piece
Travel isn’t just physically draining; it’s mentally and emotionally demanding too. Some strategies you can utilize are:
Noise-canceling headphones for overstimulation and nervous system regulation. Also great for throwing on some meditation music or white noise if you’re having trouble sleeping.
A grounding practice (apps like Activations or short breathing exercises) to help me reset when I feel a flare creeping in
Something comforting from home, usually a favorite essential oil. But other options are your own pillowcase, favorite sweatshirt (planes are always freezing), or a small blanket.
Final Thoughts: Plan Ahead
Traveling with EDS and POTS means you really can’t pack light. I’ve stopped apologizing for it, and (if you’ve read this far), I’d encourage you to do the same. I’d rather be the person who brings too much than the person who ends up in urgent care because I didn’t have what I needed.
If you live with chronic illness, give yourself permission to overpack, plan ahead, and prioritize your body’s needs. Travel is hard enough; you don’t need to prove anything by “pushing through.” Sometimes, to enjoy the moments that matter, we need to put in extra work behind the scenes. The people who love and care about you will not blink an eye at this. Prioritize your comfort and take care of yourself. Chronic illness does not mean you can’t travel and have fun. This is your sign to book the trip - and pack everything you need to thrive, not just survive!
If you resonate with this, please reach out and share your packing essentials with me! I’d love to hear them!
Disclaimer: This post is for educational and informational purposes only. It is not intended as medical advice or a substitute for individualized care. Please consult with your healthcare provider before making changes to your health or travel routines.