- Last Updated: 12 July 2023 12 July 2023
Traveling can be a challenge, but for the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) patients, it can be both a challenge and stressful. The key is to be as prepared as possible. Allow yourself extra time to plan and review your schedule several days prior to departure so it is as clear as possible. Plan rest periods into the schedule.
Use the schedule (on your person) as a reminder of upcoming activities since this will help reduce any stress of anticipation and anxiety. It helps to minimize any possibility that stress will bring on some health crisis that could prevent the trip altogether.
If traveling by air, purchase trip cancellation insurance and keep phone numbers of the hotel handy so you can quickly cancel if necessary. This will help reduce anxiety.
If you are traveling with family or friends that may not understand ME/CFS & FM, be clear that demanding, yelling or giving you orders will not quicken your response, but may actually slow you down.
Many patients don’t like to tell others they have an illness. Any attempt to keep up a front under a stressful situation is a fool’s folly. Make sure you can actually travel with your companions without doing harm to yourself.
Start your trip with paper and pen
The first step to being organized is making a list of what you’ll need. Take a pad of paper and start the list at least a couple of weeks before the planned departure. Every time you think of something, write it down on the same piece of paper. Writing things down on different scraps will add to your stress. Do not think “I’ll remember it” and write it down later. The chances of that happening are close to zero.
Whether the trip is a weekend or 2 weeks really won’t matter. You will still need to pack the “I use it every day” type of items and medications, but you’ll also have to pack the “if I get sick I’ll need” type of stuff. Those items are readily handy when you’re at home. When away, if you need them, it becomes a problem. The only difference it makes in packing will be the amount of clothing needed. ME/CFS & FM patients travel with “stuff.”
The best tip is to open the intended suitcase and start putting the items on your list in it. If you don’t have room to keep an opened suitcase around for a couple of weeks, then pick one designated spot for a landing zone, and deposit items there.
This way, "take with me" stuff won’t get confused with other items and you’ll reduce the stress of last minute rushing. Items that are used everyday and can not spend two weeks hovering in an opened suitcase can be deposited a couple of days before you leave.
When you use the item, put it back in the suitcase. This reduces the risk of forgetting something you really use daily.
Medications need to be at the top of your list
It is a good idea to write down all the medication and dosage you take (should you have more than the one or two you can remember). Put the date with your name, address and phone number at the top. If you have a number of allergies, list those as well. On this sheet, write down your doctor’s name, address, phone number and any emergency contact numbers s/he has given you, so it is readily available.
If using prescription medications and you plan to travel by plane, bring the medication in the bottle in which it came. If possible, travel with extra dosages of medication in case your return is delayed.
It would be wise to have the prescribing physician write a brief letter (to whom it may concern) to the effect that you are under this doctor's care and your treatment consists of: product A, B, C and D (especially if these are controlled-substances / Schedule II type meds).
It might help if you put your tickets, travel schedule, your medication list, your doctor’s letter and your doctor’s information into one envelope so all papers are together and keep this information on your person. Packing a duplicate copy of the same in your luggage would not hurt.
Many patients are not able to get out of bed, or, out of their neighborhood. If you are fortunate to travel overseas, discuss your trip with your doctor so s/he can provide other tips.
It is a good idea to check with travel guides (i.e., books or a reliable website) or review requirements for the countries of destination to double-check what is prohibited or restricted. Some countries won’t allow your prescribed medications, let alone “extras”.
Other necessities to check and pack
If you wear eyeglasses or contacts, it is a good idea to have a printed copy of your prescription, especially if you can’t see without your glasses. If you have an extra pair, take them along with your medications in your carry-on. Glasses and other personal items should go with you and not in luggage, if not restricted.
If you use a special heating pad, back, neck, wrist or leg braces, ice packs, canes, etc. or any medical “accessory” take those with you.
Make sure you pack any chargers you may need such as your cell phone charger and/or computer charger.
Think of the items you’ll need that you do not use on a daily basis and ask yourself “what if I need this?”
Planning can reduce stress. If you’ll need more items than allowed in luggage, consider sending a package UPS or Fedex to your destination ahead of time. If staying at a hotel, contact the facility ahead of your arrival and make arrangements for them to hold the package. Just be clear on what their rules are. Don’t assume anything.
Before taking off into the friendly skies
For air travel, if you are disabled, you may be entitled to certain allowances. Check with the airline. Plan to get to the airport with plenty of time in order to reduce stress.
If you need a wheelchair to get from curbside to the gate and are relying of the airline supplying it, allow extra time. Some airports have the airlines’ personnel doing transport, and some airlines use a contractor. It pays to ask.
Check with your airline regarding luggage restrictions and additional costs. You are no longer allowed to bring your own water or drinks on a plane, but you will be able to purchase something in the secure area prior to boarding. It is a good idea to do so.
For carry on restrictions, check with the airline. With the TSA limits on liquids to three ounces per bottle, pay attention to sizes if carrying liquid medications such as cough syrup. Many companies now sell their products in travel sizes such as shampoo, conditioner and mouth wash. Make sure your carry on meets requirements both in size and weight and follow TSA rules.
Currently, all medications and health/beauty items need to be packed into a single, quart-sized, zip-top plastic bag (usually one bag per person). Pack non-essential items in your checked luggage but check with your airline for any additional surcharges on checked luggage.
Go the restroom a few minutes prior to boarding. Ask the agent when they will announce the boarding and judge accordingly. For landing, normally, the plane starts its descent about 45-60 minutes prior to landing. Again, go to the restroom before the seatbelt sign comes on and it is too late. It just takes awareness and planning. If you are making a one hour flight, there will not be enough time to visit the restroom on board and/or weather conditions during your flight might limit getting up when you need to.
If you need to pre-board a plane, make sure you have a letter from your doctor stating your needs and that you need to pre-board and why. Rules have tightened since 9/11 and no longer can you just ask to pre-board.
Since many patients have issues with body temperature control, plan to dress in layers. Airplanes have recycled air so it may be helpful to take precautions such as taking vitamin C if it works for you.
Any special diet considerations, such as sugar-free or gluten-free, must be accommodated. Make sure you have something to eat with you, not in checked luggage. Should there be any delay in your travel or it takes longer than anticipated, you will not have to walk miles to find something to eat.
Have readily available your tickets and boarding pass as well as any directions or maps you’ll need upon arrival.
If traveling by rail, bus or car
If traveling by train, make sure either you or a friend can get your luggage on board. Don’t rely on porters because when you need one, they may be scarce. This is where arriving early and letting train personnel know you’ll need help may pay off.
Increased screenings or random inspections at train stations or onboard trains are fairly common, sometimes even using K-9 units. Don’t get upset or worried about these measures, as they are being conducted to ensure everyone’s safe travels.
Many trains run into delays, especially along the northeast corridor from Boston to Washington. To reduce stress, have appropriate clothing, food, drink and medications with you. A smart idea is to travel with a neck pillow and a good book or magazine.
Going by bus might best suit your budget, some offer a small senior discount, but it can be noisy. Some patients have noise pollution issues so here it may be a good investment to have headphones, whether to block out noise, or pipe in music to your ears. As you do so, remain alert and keep your belongings close-by, since many passengers will be getting on and off.
Whether plane, train or automobile, make sure you get up and either walk around a couple of minutes every hour or so, or stop at a rest area every hour or so. This will help reduce the pain FM patients feel from being in one position too long. If going by plane on a long flight, stretching, finding ways to move around and doing frequent but simple exercises are crucial to avoid deep vein thrombosis (DVT).
Have a happy and stress-free trip!
Visit the TSA website to stay current on TSA recommendations for travelers with special needs.