Traveling With Fibromyalgia and Chronic Fatigue Syndrome

Traveling can put a real strain on those of us with fibromyalgia or chronic fatigue syndrome. With careful planning, though, you may be able to avoid a lot of common pitfalls and the symptom flares they can trigger.

Planning Ahead

More stress equals more symptoms, so you want to plan ahead as much as possible to reduce stress during your trip.

Fortunately, that's something you can do right from your computer. You'll want to look at the Convention and Visitors Bureau sites for the places you're visiting as well as other travel sites. Look for things like city passes that get you into multiple places for one price. Ordering them ahead of time and having them mailed to you, if that's available, will keep you from having to go somewhere to pick them up after you arrive.

City passes sometimes allow you to skip lines, which can save energy. They can lower your stress about spending money while on vacation since you don't have to fork out money every single place you go. They also help you with budgeting.

Make sure to think about transportation. Some large cities have hop-on, hop-off (HOHO) tour buses that go to the major attractions and save you from having to battle traffic and parking in strange places.

If you're flying but not renting a car, look for options for getting from the airport to the hotel. Does your hotel have a shuttle? Does the airport offer a shuttle? What hours do they run?

If you're taking a wheelchair, you really have to think ahead.

For restaurants, you don't want to miss, make reservations. The larger your group, the more important that is. For those with food sensitivities, it's a good idea to peruse menus ahead of time, too.

Packing

Make a checklist of all the things you need to take with you. Make sure you include your medications and other things you need to alleviate symptoms. The list can really help when it comes to the things you have to use until the last minute.

Review the list just before you leave the house so you don't leave something important, like your pillow or toothbrush, behind.

Important Considerations

Here are some things you'll want to think about as you prepare for your trip:

• Clothing that can be layered. If you have temperature sensitivity, layers can save you, especially if you're going somewhere with a different climate. A few degrees hotter or colder, or a bit more or less humidity, can throw your body for a loop.
• Heating and cooling products, pain patches. Self-heating and self-cooling products can help with temperature regulation or pain relief. Pain patches can be handy, too.
• Medications. Take a little more than you think you'll need in case of unforeseen delays. If you're carrying narcotics or any other "controlled" drugs, it's a good idea to take them in their original bottles so you can prove they're your prescriptions. If you're using mass transportation, keep your medications with you so lost luggage doesn't mean any meds. You're allowed to carry liquid, gel, or aerosol medications on a plane, but you must inform the TSA officer that you have them and they're medically necessary. You may need to wait for an extra screening process, so allow time for that. The same goes for syringes and breast milk.
• Medical devices. A medical device like a CPAP can be a pain to transport, but it's worth the trouble to sleep well while on your trip. You can always carry a medical device onto an airplane, even if you already have the maximum amount of carry-ons. Again, be prepared for an extra screening process.

Be sure to review all the TSA regulations as you pack to avoid problems at the airport.

Chronic Pain and the TSA Pat-Down

When you're sensitive to the touch, the TSA pat-down can be a concern. Not everyone has to go through the pat-down, but people are randomly selected. Officers can also check people at their discretion, and a medical device like a CPAP or wheelchair can make it more likely. For women, a female officer should be available.

Know that a standard check includes the insides of your thighs, down your sides, and under your arms. TSA is very aware that the procedure can pose problems for people with health concerns. In 2006, it issued a memo on the website saying:

"TSA has established a program for screening of persons with disabilities and their associated equipment, mobility aids, and devices. Our program covers all categories of disabilities (mobility, hearing, visual, and hidden). As part of that program, we established a coalition of over 60 disability-related groups and organizations to help us understand the concerns of persons with disabilities and medical conditions. These groups have assisted TSA with integrating the unique needs of persons with disabilities into our airport operations."

If you are selected for a pat-down, tell the TSA workers you have fibromyalgia and need to be touched as gently as possible. It's a good idea to have a note from your healthcare provider documenting your illness. If you have concerns, you can ask to speak with a supervisor before it begins.

Probably the worst thing you can do is worry a lot about whether you'll have to endure this procedure. First, the stress is likely to kick up your symptoms, which won't make the flight terribly pleasant. Second, if you appear frightened it could raise suspicions and make you more likely to be selected.

If you take any meds or supplements for anxiety, you might consider taking them before you get to the airport (where the crowds alone could get your nerves on edge.) Remember to breathe deeply, to help your mind and body stay calm.

If you feel you're not treated appropriately by TSA, complain to a supervisor or file a complaint through the TSA website.

Schedule Downtime

If at all possible, schedule some downtime during your trip. It might seem like a waste of time, but it could keep you feeling well enough to enjoy yourself. It's better to schedule loosely than have to cancel a bunch of plans because you're not up to it.

Downtime is important after you return home, as well. If you can, try to have a day or two after you return for rest and recuperation before you have to jump back into your regular life.