7 Keys to Savvy Traveling With Fibromyalgia

By | March 22, 2019

In a prior lifetime, I used to take a lot of business trips. So many, in fact, that I had elite airline status. That’s over 50,000 miles trapped in an airplane, plus all the time in a hotel. Some of that happened while my fibromyalgia was developing.

With all those trips, I learned some tricks to make it a lot less painful and more enjoyable. Some of these things cost money. If they help you enjoy your trip–and survive it with grace–I suggest including them as part of your trip budget. Other items simply require a little more planning.

There’s over 50 individual tips here, so pick and choose the ones that make the best sense for you!

1. Take Advantage of Your Options

• Use a Special Needs Group Certified Accessible Travel Advocate. These are agents who can help you with everything from knowing what kinds of hotel rooms and cruise ship cabins would be best to knowing airline regulations. They can also help you with arranging for special equipment, such as refrigerators and sharps containers. Many of the things I recommend can be done for you by one of these agents.

• Opt for wheelchair assistance at the airport. You do not have to have a handicapped parking tag to take advantage of this option. You simply need to tell your airline in advance (or when you check in) that you need this kind of assistance–and YES, even with fibromyalgia, you really do!

• Choose early airline boarding. Some airlines will let you pay a small fee to board early. This will let you skip having to stand as long and will give you more freedom to stow your carry-ons where you can get to them.

• Visit an airline member lounge, such as an Admiral’s Club or Alaska Airlines Board Room. These lounges can be a haven if you have a long layover. They are quiet, have nice bathrooms, comfortable chairs, and snacks. Of course, they do cost money. If you are in the airport often, check into a yearly membership. If it’s a one-time deal, check into getting a day pass.

• Ask for early check-in and/or late check-out. When a hotel expects you out by 10 or 11 AM, and mornings are your worst time of day, an extra hour or two can be a life-saver!

• Ask for a fridge in your room if you need it. Many hotels can provide you a small refrigerator, even in rooms that wouldn’t normally have one. There may be a small charge or not, depending on the hotel. This is where working with an agent could save you some money.

• Get a hotel room with a whirlpool tub or bring a swimming suit and use the hotel’s hot tub. In my former life, when I would work 14-hour trade shows, I used to soak just my legs and feet in the hot tub, then in the pool. Alternating between the hotter and cooler water would increase circulation in my legs and reduce the swelling-and make everything feel SO much better!

2. Don’t be a Victim

• Use the best hours for you, when possible. The day I left my old job I swore I would never take another 6 AM flight again. It’s just not worth it to me or my body. If mornings are your best time of day, avoid the late night options.

• Give yourself extra time between flights. Airlines will allow you to have a minimum of 45 minutes or so between flights. That’s just not enough with fibro legs, especially at a big airport. If you’re going a long distance, maybe even spend the night between flights.

• Use SeatGuru.com to choose a comfortable airline seat. This site lists which seats are cold, have extra leg room, recline or not, have power outlets, and more.

• Check hotel information personally. Marking an online form that you’d like to be close to the elevator so that you don’t have to walk too far might result in a noisy room from all the elevator traffic. Speaking to the hotel directly can get you the room you want and need.

• Check restaurant info before you visit. If you have food sensitivities, check out restaurant menus online or through your hotel concierge before you visit. Don’t be afraid to call ahead and talk to the restaurant to be sure your meal will be safe.

• If you’re going by car, stop take stretch breaks. By communicating this in advance, and being sure to speak up when the time comes, will help you arrive more comfortably. It will also prepare those who are with you for what your needs are. Often simple communication and setting expectations can make things go so much smoother.

3. Plan Ahead

• Start planning far enough ahead. This may mean just a few weeks or maybe even months. Using an agent can reduce your stress level and planning time, and even save you money.

• Use a pre-set packing list. To reduce the chance of forgetting something–and save on mental fatigue (go go fibro brain!)–have a packing list for each type of trip: camping, visiting relatives, hotel. Keep these in something like Evernote, the Checklist app, or a Word document so that you can re-use them.

• Have a packing list for each person. You don’t have to pack everything personally! As a kid, we were each given our own checklist to do our packing. We had to show mom when we were done, but this way she could focus her energy on the things that only she could pack.

• Have your “go-to” outfits that you know will work. Know what works for going through airport security lines, what’s comfy on the airplane/in the car, your best summer outfits, winter outfits, etc. This will save you time and energy.

• Keep your toiletries bag pre-packed. Even if you don’t go on many trips, certain things can stay packed, such as a spare toothbrush, small bottles of toiletries, and spare deodorant.

• Take your time packing and do a little at a time. When I was in high school, I packed at 2 AM the night before I went on a six-week trip to Europe. Now that I’m older and have fibro I just can’t do that anymore! I get the suitcase and lay it out in the bedroom a week or so before leaving for a trip. As I come across things I’ll want to take, I put them in the bag.

• Plan your rest days. This will include days before your trip, when you arrive at your destination, during your trip, and when you get home. You know you’re going to need some recovery time, so plan for it. Block off time on your calendar to give yourself whatever kind of rest you need. Be sure to share with your friends and family that these are your rest days and exactly what that means for you.

• Do you have to rent a car and drive at the other end? Consider staying at the airport one night, using the shuttle, then getting your car the next day when your brain and body are fresh.

• In order to not overdo the fun things and burn out before your trip is over, plan days of more activity followed by days with less activity; don’t forget your rest breaks!

• You WILL need to plan in more detail if you’re with people who are super-high energy and want to do lots of things. Along with that, you’ll want to be prepared to “just say no!” and have a place where you can stay in and rest. Try not to feel guilty for doing what you need to do to take care of yourself.

• Plan a light week (or more) after you get home. Even with planning rest days, you’ll still want to ease back into things slowly.

• Have a friend or personal concierge service stock your fridge for when you get home. If you’ve been gone on a long trip, it’s so nice to come home to fresh food in the fridge. It lets you have a bit of a vacation after your vacation!

4. Pamper Yourself

• Get a pedicure or massage when you get to your destination (and schedule one for when you get home). Sitting for long distances wreaks havoc on your circulation. Even something as simple as a pedicure, and the leg massage you get during it, can help get your circulation going again. Other nice things about pedicures–they’re inexpensive and you can find one in almost any mall!

• Dress in comfortable layers. When you’re on a trip with others-especially on an airplane-dressing in layers will allow you to warm up and cool off by adding or removing layers. This will give you more control over your own comfort, rather than needing to ask for temperatures to be adjusted.

• Bring gloves and warm socks to put on. If you get cold feet and hands (thank you, Raynaud’s!), having some warm socks and gloves to slip on, even in the summer, will keep your whole body warmer.

• Carry on a large shawl. I have a lightweight wool one that can be used as a pillow, blanket, back support, coat, and roll up into almost nothing.

• Bring ear plugs, an eye mask, and anything else that might make things less overwhelming or help you sleep better on your trip. These are great for toning down the noise and overstimulation during your trip (car or airplane!) and can help in a strange bedroom.

• Bring your own pillows. A neck pillow can help for the airplane or car; consider packing your bed pillow in your suitcase for sleeping with at your destination.

• Pack your heating pad (or bring on the plane). If you and your heating pad are best buds, don’t leave it at home! You can even purchase an adapter to use it on the airplane. (Don’t forget to check SeatGuru.com to see which seats have outlets!)

• Try ThermaCare® or Salonpas® patches. If taking a heating pad isn’t an option, or you’d rather not carry it on, try these disposable heat patches that last eight hours!

• Bring some aromatherapy. Candles or essential oils can make a strange place feel more like home and have therapeutic benefits.

5. Remember the Healthy Essentials

• Drink more water than normal, especially if you’re flying. Start a few days ahead of time to make sure you’re well hydrated. This will help with the effects of pressurization on your body. I’ve found that the better hydrated I am, the less my body complains when I fly.

• Pack healthy snacks. When your blood sugar levels are stable, your pain levels will be lower. Don’t tempt fate and bring your own snacks along. You never know when your flight might be delayed… after it pulls away from the gate! Be sure to pack snacks that have protein in them so that you’re not experiencing the highs and lows that carbs can bring.

• Keep to your normal sleep schedule, as much as possible. This can be especially difficult to do if you’re staying with relatives, so be sure to enlist their help in helping you go to bed on time. Staying up late will mean getting up late or not getting enough sleep. And that will just lead to more fatigue and pain. Remember, you want to enjoy this trip, right?

• Keep to your eating routine, as much as possible. Part of the fun of being on vacation is the food, at least for me. However, I still avoid my trigger foods and the things I’m allergic to. Having intestinal cramps or headaches because I’ve had gluten doesn’t make my vacation any more fun. I’ll find other ways to enjoy vacation food!

• If you have skin sensitivities allergies, don’t forget to bring your own toiletries. Since I’m really sensitive to gluten, which is found in many shampoos and conditioners, I make sure to bring my own.

• Make sure to take your medication and supplements on time. If you need to, set reminders on your phone. Invest in a pill carrier so that your pills are with you at all times, that way you’re never caught off guard.

• Consider taking extra probiotics and digestive enzymes while on your trip. IBS acts up in proportion to stress; even vacation is stressful to your body, because you’re sleeping somewhere different, eating different foods, on a different routine, etc.

• Bring your CPAP, night mouthguard, and anything else you would use at home. Do NOT skimp on these things, especially if they help you sleep better! Remember that medical equipment does not count as a carry-on, so you can carry it on the plane with you.

• If you’re concerned about sleeping well, talk to your doctor about taking something while on your trip. There are many medications and herbal supplements that are great for short-term uses like this. Sleep is so important for those of us with fibromyalgia. If you think you’ll need some help, ask ahead of time.

• Get up and stretch. Pick an aisle and/or bulkhead seat so you have room to move around. If taking a car, stop and get out. It may help to pre-plan these stops; this way everyone will have the same expectations for when and how often these stops will occur.

6. Recruit Another Advocate

• Choose someone to help you advocate for your well-being. It can be really tough always having to say no yourself–especially if you’re having fun! Choose someone to educate about your illness so that they can be an advocate for you.

• Communicate some signals in advance so that they can back you up. For example, if you have a pre-arranged signal, you might mention, “It’s getting late.” Your partner can pick up on this and help you get out the door and into bed on time.

• Let them know what kinds of things you might need help with. Fill your partner in ahead of time on the things they can help you with: remembering to take supplements, carrying your purse or shopping bags, making sure you eat regularly, helping the group to stop and take rest breaks, etc.

• Tell them what signs to watch for that you are starting to have a flare up. If you are with someone who isn’t around you every day, be sure to communicate the signs that indicate you’re starting to have a fibro flare. Especially when we’re having fun, we sometimes miss these ourselves! Perhaps your early warning signs include more brain fog and searching for words, moving slower, a headache, or getting grumpy and snapping more than usual.

• Give them instructions on how to best help you when you are in a flare.Now that they know what to watch for, be sure to tell them what to do when you’re in a flare! Should they send you to your room and leave you alone? Pour you a hot bath? Stick some food in your mouth and make you eat? Force you to take a nap? What do YOU need?

• Clearly communicate what you want them to tell other people when you need to take a break. If you are with a group, be sure to give your advocate instructions on what to say to the others. Do you want them to explain the ins outs of your illness? Or just say you’re tired and need some rest? Should you take some copies of The Spoon Theory?

7. Travel Light

• Check on as much baggage as you can. This might cost you a little more money, but it will save you energy and pain. However, make sure that you don’t check on your medication or any medical equipment, such as a CPAP machine.

• Choose your outfit so that there is no “undressing” necessary, if you need to go through airport security. Don’t wear a belt, choose slip off shoes, no metal rivets on your clothes, jewelry that won’t set off the detector, etc.

• Use as much of what the hotel provides as possible. Often toiletries that hotels provide are formulated for the environment that you’re in. Definitely make use of the hotel’s hair dryer, iron, and other amenities, instead of packing your own.

• If you have allergies and need to bring your own toiletries, buy sample sizes of the toiletries you use, or get small bottles fill them with your own toiletries. I’ve gotten many of my small bottles at the Container Store.

• Over time, invest in mini-sizes of things that you can’t do without. Look for smaller sizes of your favorite hair brushes, or hair appliances, for instance.

Action Steps

First, I encourage you to not be afraid to travel with fibromyalgia! Just like exercising, test out your “trip taking muscles’ by taking some short, easy one. Then as your “muscles” get stronger, you can take on longer trips, to places farther away. Who knows, maybe you can even travel the world!

Second, please don’t tackle everything on this list at once! Pick and choose a few things to implement at a time. Some you can do even if you don’t have any trips planned, like buying and filling some small toiletry bottles. Again, take it little bits at a time and ease into this.

About the Author: Tami Stackelhouse is a Fibromyalgia Coach – a Certified Health Coach who specializes in helping women with fibromyalgia, tired of being held prisoner in their own bodies, find hope and freedom. Tami not only coaches women with fibromyalgia, she’s suffered with the symptoms herself for over 25 years.

Visit Tami’s website for helpful articles on fibromyalgia research, treatment options, and how to take care of yourself while managing life with an invisible illness. You can also sign up for her Hope & Healing eNewsletter that goes out once a month with articles, tips, and fibro facts.

Sometimes, just knowing someone understands what you’re going through can bring great healing. Tami would love to hear from you!

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