10 Tips for Traveling With EDS, POTS, and/or MCAS

If you have Ehlers Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), and/or mast cell conditions, you may need a vacation from preparing to take a vacation! There are so many things to remember to make sure you can be safe and manage conditions away from home. We are preparing for a family road trip from Florida to Michigan to see family we haven’t seen in a year, and I find myself exhausted from the mental and physical preparations for our journey. I can’t wait to be on the road with all the packing behind me!

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I have Ehlers Danlos syndrome and POTS and so does my daughter. My son has recently been diagnosed with hypermobility as well, and is exhibiting many of the same signs that we noticed with my daughter at that age: difficulty with pain while writing, pain with ankles and knees, back and neck pain, winged scapula, headaches, random allergies that can’t be nailed down, and gastrointestinal struggles. Needless to say, packing for not one, but three folks with chronic conditions in one family requires the planner to be prepared for many predictable or erratic symptoms that may emerge during travel.

Here are our top 10 travel reminders that may help ease the mental strain of trip preparation for our fellow Ehlers Danlos syndrome/POTS/mast cell travelers. I hope to use this checklist myself on our next journey!

1. Check all your prescriptions two weeks in advance.

You may not be able to renew them yet, but know which are running low and check with your pharmacist to see what needs to be done to have all your medications on hand for your trip. If your doctor needs to renew a prescription, you may have some back and forth communication that you need to allow time for, so be sure to do this well in advance of your trip to deal with any delays that may arise. If you carry an epi-pen for mast cell-related issues, make sure your epi and all inhalers are handy and within the expiration date.

2. Check all your supplements at the same time.

Make sure you have ordered all your vitamins. In our house, between the three of us, we use adult and children’s versions of numerous vitamins and supplements. I also make sure to take my monthly B12 shot before traveling, so I do not have to pack syringes.

3. Order all pain-relieving supplies.

For us, this meant checking our essential oil balms and rollers and actually mixing new supplies of both. We also bring BioFreeze, Lidocaine patches, and heating and cooling patches for me while I am driving. We pack heating pads, the TENS unit, all braces and AFOs. Don’t forget your KT or Rock tape and baby oil to remove it! We also are packing our physical therapy regimen printouts and supplies so we can continue our routine at our destination.

4. Ensure you have diet-friendly food items packed whenever possible.

Folks in our house eat low-FODMAP and gluten-free items, so we need to have those on hand when we cannot find a diet-friendly fast food stop on the road. You don’t want to become ill while stuck in the car for hours because you did not have food that works for you. Make sure you have your stomach rescue meds on hand as well. If I start having a food reaction, it’s one of the few things that work to help manage severe abdominal cramping.

5. Make sure to leave room in your car for mobility devices.

We are still on the hunt for a used rollator, but this trip won’t involve demanding walking, so I will just need room for my cane and disability pass in the car. If you are flying or traveling by train, make arrangements for assistance if needed.

6. If you have a support animal (which we do not), refresh your pet supplies and make sure you have room for them in your vehicle or luggage.

If you are using modes of transportation other than driving, prepare adequately by contacting the airport or train depot to find out what you need to do to travel with your animal. Remember to make plans for any pets you leave in the care of others as well.

7. If you have mast cell issues, don’t forget to pack your magic masto cream or ingredients to make it.

In my case, I had to mix up a new batch right before leaving.  Luckily, I had supplies on hand so I did not have to shop for them as well. Ensure you have an adequate supply of masks for your trip to limit your contact with triggering substances. Also, pack all your toiletries so you can limit contact with products that may cause a reaction.

8. Don’t forget adequate hydration and salt.

Stock up your electrolyte solution for the trip, and premix some for the long ride so you aren’t struggling to maintain a balance of fluids that doesn’t make you have to stop at every rest stop, or leave you parched and dizzy upon arrival. If you need to plan an IV infusion before you travel, make sure to schedule this well in advance. Also, for those who use it, don’t forget to pack and wear your compression wear to limit blood pooling while seated for lengths of time.

9. Have your emergency info card updated in your wallet and a list of your medications on hand in case you have a medical emergency while you are traveling.

Some of you may have medical alert bracelets or necklaces to wear as well. For those with mast cell issues, this may mean a signed copy of the mast cell protocol from your doctor in case you end up in the emergency room after coming into contact with a trigger.

10. Take a deep breath.

Traveling is a privilege and easier for some of us than others. Know that the effort you are taking to prepare will help make your trip more enjoyable and less symptomatic. While traveling can be hard on our bodies, being prepared will help us approximate the home environment as closely as possible, so we can enable ourselves to have an easier and hopefully, more pleasurable travel experience.

Wishing you safe travels!