7 Keys to Savvy Traveling with Fibromyalgia

July 26, 2012

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

With all that traveling, 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

  • SNG Accessible Travel AdvocateUse a travel agent who is an SNG Certified Accessible Travel Advocate™. These travel agents 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. Find your closest SNG Certified Accessible Travel Advocate here.
  • 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!
    • Here’s what this will provide you:
      • A wheelchair with airport staff to push you through the lines at security (instead of standing in line)
      • Someone to wheel you down the long concourse to your gate (instead of hiking for miles)
      • Early boarding (for free)
      • Someone to meet you at the end of your flight and get you to your connecting flight (instead of you trying to figure out where you’re going and having to hike there; ever been through Dallas or Chicago?)
      • Early boarding again (for free)
      • Someone to meet you at your destination and wheel you to baggage claim (instead of you gathering up all your carry-ons and hiking with them)
      • Assistance getting your baggage for you at baggage claim while you sit and rest in the wheelchair (instead of you standing and watching for it, then having to lift your heavy bags off the belt)
      • And finally, wheeling you and your luggage to your shuttle or rental car (instead of you having to walk there, dragging all of your luggage)
    • Now… Tell me you wouldn’t arrive less fatigued mentally and physically if you took advantage of this option!
  • 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 travel 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 a travel 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!
  • Make use of your hotel tub. Even if you can’t get a whirlpool tub, use the plain bathtub with some Epsom salts to relieve pain. Epsom salts are my secret weapon to combat fibro pain. Whenever I think I might have done just a little too much, I take an Epsom salt bath to ward off the aches and pains. (It usually works too!)

2. Don’t be a Victim

  • Travel at 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 flights.
  • 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 fibromyalgia legs, especially at a big airport. If you’re going a long distance, maybe even spend the night between flights.
  • SeatGuru Mobile AppUse SeatGuru.com to choose a comfortable airline seat. This site lists which seats are cold, have extra legroom, 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 traveling 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 traveling 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 a travel agent can reduce your stress level and planning time, and even save you money.
  • Remember Everything. | EvernoteUse 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 travel: camping, visiting relatives, hotel. Keep these in something like Evernote (you can get some free Premium love with that affiliate link, or you can use this non-affiliate link) 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 work for traveling. Know what will work 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.
  • If you travel often, keep your toiletries bag pre-packed. Even if you don’t travel often, 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 fibromyalgia 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.
  • Place orders to be delivered to your hotel. For example, instead of packing a large bag of Epsom salts in your suitcase, you can often place an order online and have items shipped to your hotel. This could also work for snacks, bottled water, etc.
  • 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

  • ReflexologyGet 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 traveling 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 buy 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.

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5. Remember the Healthy Essentials

  • Glass of WaterDrink more water than normal, especially if you are traveling by air. 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 traveling by 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

  • Cherry blossoms in handChoose 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 traveling with someone who isn’t around you every day, be sure to communicate the signs that indicate you’re starting to have a fibromyalgia 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 traveling 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 travel with extra 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.
  • If traveling by air, choose your outfit so that there is no “undressing” necessary. 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.

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Action Steps

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

Working with Tami gave me hope for healing for the first time in years. My fibromyalgia has been very chronic throughout my life and Tami’s gentle way of listening and supporting me helped me realize how much discomfort I had been tolerating. With her guidance, I’ve been able to acknowledge my challenges and build a support team that is helping me with the special care I need for well-being and peace of mind.

— Christine


SeatGuru Mobile logo © TripAdvisor LLC. Evernote logo © Evernote Corporation. “Reflexology” © www.istockphoto.com / Christophe Schmid. “Glass of Water” © www.istockphoto.com / DNY59. “Cherry Blossoms”  © www.istockphoto.com / Daniel Rodriguez. All rights reserved. Used by permission.
 

 

{ 23 comments… read them below or add one }

Amy October 3, 2012 at 11:57 am

Is there a way to find out what sorts of beds hotels have without calling all of them? My husband and I need to travel for Thanksgiving, but I’m afraid to. I just got a lovely wool topper, and I’m finally starting to sleep a bit better. I don’t want to be tossing and turning and wake up in excrutiating pain. I’m also nervous of the food choices available to me, since I have multiple food sensitivities.

Reply

Tami October 3, 2012 at 5:10 pm

Hi Amy!

This is where a travel agent can be worth their weight in gold! For one thing, travel agents have access to special prices at hotels that you don’t have access to! Second, you can have your agent do all the calling around. ;-) An SNG Certified Accessible Travel Advocate™ is trained to know all about accessibility issues – and that should include chronic pain and food sensitivities! For example, there’s a B&B here in Oregon that I recently heard about that serves gluten-free cookies and pancakes! Yippee!

One specific suggestion I can give you, however, is to check out the Radisson hotels. Many of them offer the Sleep Number beds. I have a Sleep Number bed here at home and it is SO GREAT! I can make it as soft or as firm as I need. When traveling, that’s a nice option!

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Amy October 4, 2012 at 8:22 am

Unfortunately, we don’t have the money for a travel agent. But I did look up the Radisson. The only one they have where we are going is a water Park Inn by Radisson with the most horrible reviews. Yikes. Well, I’ll keep digging. Maybe in the end, my husband will go for the travel agent idea. Thanks!

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Tami October 5, 2012 at 12:37 pm

Amy, you might check with an agent anyway. Sometimes they get their cut from the hotel, not from you! =)

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Amy October 5, 2012 at 2:44 pm

Ahhh, thanks Tami! We will do that if we still decide to go. Right now my pain has gotten so bad I’m not sure if I can take the stress of the trip, but we will see where I am when that time comes around.

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Wheelchair Chic October 24, 2012 at 10:05 am

Thank you so much for this post. It was quite illuminating to see so many helpful tips and suggestions collected in one place. Even searching online, its not very easy to find this kind of information collected all in one place!
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Cate February 9, 2013 at 9:50 pm

This is wonderful. Thank you so much. I have fibro and am heading to the other side of the world. 31 hours travelling and I’m a little nervous. But reading this helped so much. :-)
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Tami February 10, 2013 at 8:00 pm

Wow! That’s a long trip. Just remember that your needs are important – and do what you need to in order to have your needs met. Hugs!

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Ruth Hopley April 17, 2013 at 7:32 am

Thanks for all the infro, appreciated it.

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Anna April 17, 2013 at 5:08 pm

I travelled to Australia from Canada last Fall…..I did a lot of the things you suggest. Fortunately I did not need a wheelchair.

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Tami April 21, 2013 at 12:17 pm

Awesome, Anna! Using a wheelchair can really save energy, especially in large airports. I’m glad you didn’t need it though.

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Terri April 18, 2013 at 1:05 am

I only have mild fibromyalgia , but have noticed that travel can be a factor in a flare up. Thank you for such a comprehensive list!!!

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Tami April 21, 2013 at 12:19 pm

Travel can be so hard on the body. You’re not in your own bed. You’re often not on your same sleep schedule or diet. It’s just difficult. Hope the suggestions help the next time you travel!

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Ravi Sharma November 21, 2014 at 11:57 pm

I travel a lot. thanks for this. it will help me

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Martin February 12, 2015 at 12:15 pm

Very informational. I’m a planning freak so I just loved point #3. Just plan ahead and yes plan the trip months before and you will have no surprises.

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barry April 24, 2015 at 12:55 am

Hi,

Thanks for the tips. My mother currently has Fibromyalgia and she travels a lot as well. i’ll be referring her to your article.

Keep up the great work!

Barry

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Jack April 25, 2015 at 2:13 am

Thank you very much for sharing these useful tips. Although, I have only mild flare ups once in a while, travelling for long time is not easy.
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Leicia June 16, 2015 at 1:55 pm

Dear Tammy,

I’m reading your Fibromyalgia book, and finding it useful. I have FMS as a secondary diagnosis, ( along with CFS.). My primary diagnosis is Ehler’s Danlos Type III, a genetic collagen disease. I was wondering if you’ve had any clients with both EDSIII, and FMS. ( Resaerch rates for EDSIII patients with FMS are 25%.).
I have quite a story as my EDSIII took a long time to get diagnosed. I’m much better now, and hoping to be able to work a little again in the next year or two.
Anyway, I just wanted to ask you if you’d had clients with my disease.
Keep up the good work! Thank you, Leicia R.

Reply

Tami June 16, 2015 at 7:13 pm

Hi Leicia! Yes! I do have clients with both EDS and fibromyalgia. I have one client who is trying to get an EDS diagnosis right now. We’ve been working on it for almost a year now. Not an easy thing. This particular client is part of a secret online Facebook group with me. If you’re interested in joining, I can introduce you to her. BTW – one of our local EDS experts calls fibromyalgia “EDS lite” because she’s never met a fibro patient who didn’t also qualify as having EDS. I find that very interesting! Feel free to email me directly if you’re interested in joining the group. I’m glad you’re finding the book helpful! <3
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ellen June 18, 2015 at 6:02 pm

This is like my personal travel support Tami-thanks for all the tips and ideas.

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Tami June 18, 2015 at 7:43 pm

You’re so welcome, Ellen! I’d love to know what ones you try. =)

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mishalkhan February 15, 2016 at 4:30 am

I’m reading your Fibromyalgia book, and finding it useful. I have FMS as a secondary diagnosis, ( along with CFS.). My primary diagnosis is Ehler’s Danlos Type III, a genetic collagen disease. This particular client is part of a secret online Facebook group with me. If you’re interested in joining, I can introduce you to. thanks for shearing us.
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Tami Stackelhouse February 16, 2016 at 12:04 am

I don’t have EDS myself, but I do have several clients who do. I’ll keep you in mind. Thanks!

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