Traveling with arthritis can be challenging. Getting medications through security, checking out accessibility issues at landmarks and confirming handrails are actually present in your hotel room all take time and effort.
In many ways, advances in the treatment of arthritic diseases have broadened the boundaries of travel. You are now able to do things that patients even 15 or 25 years wouldn’t have thought possible.
With that new freedom comes new concerns and obstacles that must be addressed. One of the major ones is trying to do more than perhaps you should.
Know your limits
“I think one of the most important things about choosing a travel destination is to be realistic about your limitations,” said Edward J. Hellman, MD, a physician at OrthoIndy in Indianapolis. “Be honest with yourself and any traveling companions about what you can and cannot do.”
Think about the climate and environment of the places you want to go. If you have pain on cold or wet days, you may decide to not go to some states in the winter. Similarly, if you don’t do well with heat and humidity, then the Deep South or the Caribbean in August may not be such a good idea. Climate information by month is available on the Internet or through a travel agent.
But also important is the reason you are choosing one place over another.
“I would say go where you want to go,” said John Indalecio, MS, OTR/L, CHT, a hand therapist at Hospital for Special Surgery in New York City. “See places you are curious about or where there is something you want to see.”
Touch base with providers early
Talking with your health-care professionals early in the process is important. They can give you an unbiased assessment of what your limitations might be. They also can connect you to local resources such as chapters of the Arthritis Foundation or travel agents whom other patients have used successfully. Ask your therapists about exercises you can add to help you move safely on unfamiliar terrain.
Recommended travel agents
“It would be ideal for the patient to discuss their plans with their health-care team well before the date of departure,” said Margaret Tsai, MD, an adult rheumatologist at the Cleveland Clinic. “This gives you time to obtain extra medication refills, emergency treatment for flares-ups, and a letter for Transportation Security Administration inspectors to facilitate clearance of medications, syringes or medical devices.”
This would be a good time to go over other considerations such as:
• changing medication times as you move across time zones;
• medications that need to be taken with meals and how best to make sure you are eating properly on the road;
• vaccines or other precautions needed to avoid diseases common at your destination (some medications for rheumatoid arthritis (RA) affect your immune system);
• discussing emergency plans with your doctor, including replacing medications if needed, what to do to alleviate certain symptoms, how to contact the physician in a hurry and whether he or she can recommend a rheumatologist in the area;
• obtaining medication refills should they be needed; and
• a complete health history including all medications, both prescribed or over the counter, and contact information for both your primary-care doctor and any specialists you are seeing.
Some medications or infusions are given on a specific schedule. It may be possible to make adjustments to avoid needing treatment while you are away. If not, your doctor might be able to help with making arrangements for administering the medications at your destination.
“Optimally, having medications or infusions on time provides the best therapeutic effect,” says Tsai. “Working closely with your provider, you may be able to rearrange your treatment schedule around your travel dates.”
Things to consider
There once was a bus company whose advertising slogan was “Getting there is half the fun.” For everyone, those days are over. People traveling with pain have additional things to think about.
One is the distance from home. How long will the travel take? Will you be exhausted once you arrive?
For a longer trip, experts suggest you break it up into parts if you have the time. Instead of a 13-hour flight or a 15-hour drive, stop overnight or maybe even take a full day off along the route to unwind, relax and sleep in a real bed. Get to your destination a day earlier than any tours or activities you have planned to get comfortable and ready to go.
Getting there by air
Method of travel is another consideration. If you are flying, try to book a nonstop or direct flight so you don’t have to make a dash to another gate. Here are some other suggestions.
• Arrive at the airport extra early to talk with the airline staff. Tell them your needs so they can make arrangements to help you at your final destination or if you are changing planes.
• Take advantage of preboarding so you can be settled in your seat before the crush of regular boarding takes place.
• Try to get an aisle or bulkhead seat because they have more legroom. Make sure you aren’t getting an emergency exit seat, or you may be asked to move.
• Make use of shuttles or ask at the entrance for a wheelchair. Gratuities for the drivers or those who help with the wheelchair are appreciated.
All aboard: trains
Trains may be easier for those with pain in the U.S. Amtrak has a special services desk that can arrange overnight accommodations on the train if needed and reserve seats with better legroom or ones that swivel. Most trains have refrigerators if you need one. The only down side is that passenger trains usually require you to climb stairs to get into the car.
Some international trains are accessible, but others may not be. When you decide on a destination, go to the carrier’s website to determine if they can accommodate you.
Wheels on the bus
Interstate bus travel can be the most challenging. Most buses don’t have lifts or pneumatic kneeling devices. Often they will allow a companion to travel at a reduced price or for free with a doctor’s letter.
Lovely sea cruises
Cruise ships are a good option for both newer and seasoned travelers. You can see many places without packing or unpacking, and people with additional needs make up a big part of their client list, so they make services readily available. For example, you can rent scooters and have them waiting for you upon boarding.
When looking at cruising, pay attention to whether the stops are port calls or tendered. The first means you dock at a pier and get on and off the boat via a ramp. If tendered, you are placed on another boat and taken to shore. While the crews are trained in the best way to make the transfer, getting to shore is more dependent on weather and sea conditions.
You can book excursions either through the line or privately. Many websites, such as cruisecritic.com, provide reviews of specific ships and more information on the ins and outs of excursions.
Getting around your destination
After you arrive, how do you get around? Look into the availability of accessible taxis, subways and buses and even at the width and availability of sidewalks. Many times, you can get this information both domestically and overseas from the local convention and visitors bureau. You might also want to contact independent living centers at your destination. They usually know how to navigate around their towns.
Interestingly, there is very little correlation between the size of the area and how easy it is to get around. New York City is said to have fewer than 500 accessible cabs, while many taxis in Aruba are vans.
Location: an important part of lodging
The top three things to think about when looking at lodging is location, location and location. If you choose an all-inclusive resort or big theme park, consider how close it is to your arrival destination. Should you go with a quaint little bed and breakfast? Would you be able to get to the second floor bedroom without an elevator?
Once you have narrowed down the places to stay, call the hotels directly to ask specific questions about the rooms. Ask to talk to housekeeping or the engineering department. Unlike the front desk, these people actually see the rooms and know the most about how they are set up.
If you have specific attractions you want to see, make sure that your hotel is as close to them as possible. You should contact the attraction directly because “accessible” can mean different things to different people. They can also be helpful in finding accommodations nearby and answering questions about the best way get there.
Tours and sightseeing
When looking into tour or sightseeing options, ask about the pace of the tour and whether it is time-limited or if you can take breaks. Find out if the transportation is a full-size bus, trolley or minivan and if there will be staff available to help you get on and off. How far is the walk from your accommodations to the pick-up and drop-off points?
There are two major kinds of trip insurance. Trip interruption protects you against changes in your plans. It reimburses you for losses if you need to cancel the trip. While on the trip, it will pay airline or transportation costs should you get sick and have to come home early.
Health insurance policies are also important. Many policies, including Medicare, don’t pay expenses outside of the U.S. Travel medical policies pay for these expenses and often refer you to a local English-speaking doctor.
The local U.S. embassy or consulate is another good source for vetted local doctors. Before you leave, write down the contact information by going to usembassy.gov.
Make sure that the policy includes evacuation or repatriation insurance. Few health plans pay for an air ambulance or other conveyance to get you back home. Some estimates say getting you back home can cost $15,000 in the U.S., and from overseas the cost will be much higher.
Make sure you understand what you are getting. Having a pre-existing condition doesn’t necessarily mean you can’t get insurance. You may have to meet certain restrictions such as paying for the insurance with your initial deposit.
If you are going on a packaged tour or cruise, the operator or cruise line can usually provide you with insurance options. In some cases, your personal insurance agent may be able to suggest providers if he or she doesn’t have any options to sell you directly. Most insurers have websites. Another possibility is insuremytrip.com, which allows you to directly compare prices and policies among the major companies.
Now you pack
With the preliminaries completed, now comes the heavy lifting (literally) of packing. You know how much you can lift safely, so keep that in mind. Even though there will be porters and baggage handlers for much of the trip, you’ll still have to get your luggage from the parking lot to the airport.
Suggestions for packing include:
• travel-sized heat and cold packs;
• assistive devices such as a tool to button your shirt, even if you don’t use them too often;
• a horseshoe pillow to support your neck and a lumbar pillow for your hips and back;
• a nightlight or flashlight with batteries so you don’t become disoriented at night;
• a backup power source for your mobile phone; and
• a suitcase or bag with wheels, preferably the kind that spins 360 degrees and that you push instead of pull.
When it comes to taking medication, bring your own food and drink and put them in your carry on. The TSA has rules about the size of liquids you can bring on a plane, so it may be best to buy these after clearing security. Power bars are a good fallback that usually won’t cause problems.
Additional concerns with RA
There are some additional packing concerns for those with RA. If you have medication that needs to be kept cold, get a small, insulated travel cooler. The maker of your medication may have a support program that will send you one for free.
When you have a long flight, tell the flight attendants as you board the plane. They may be able to provide you with ice for later or put it in the plane’s refrigerator. Make sure that the medication is still in the box with your name on it. Tape your boarding pass to the box so a flight attendant will know your seat number.
“Mobility International’s website is a great place for information both in the U.S. and abroad,” said Indalecio. “There is an area where they discuss travel and pain. Other possibilities include your local chapter of the Arthritis Foundation.”
Consider travel agents
Talking to a travel agent (TA) — especially one specializing in the needs of those with arthritis or pain — might be worth your while. They have researched places to go, things to do and how to get there in ways you may not have thought about.
When looking for a TA, consider the following.
• Talk to other people with arthritis about whom they have used and would recommend.
• Independent living centers often work with TAs when scheduling trips for their residents.
• Contact the Society for Accessible Travel and Hospitality at sath.org.
• Check in with the local Arthritis Foundation or other national societies to see whom they use to get people to conferences.
Driving, taking a train or bus or even cruising is not that much of a security hassle. However, plan ahead if you are taking a plane.
Never put your medications, both over the counter and prescription, into your checked baggage. If the bag is lost, it may take days to recover it.
Make sure you have shoes that you can easily take off and put back on, and have any assistive device you may need with you. There are suggestions from the TSA on what to expect available from www.tsa.gov/travel, or call the TSA Cares hotline at (855) 787-2227 at least 72 hours before you leave. They also have a disability notification card that discreetly lets you inform the officials of any conditions, available at https://bit.ly/29bOXAB. This does not exempt anyone from screening.
“At the other end, taking prescriptions through customs should not be a problem,” says Dr. Hellman. “Keep them in their original containers and labeled with the name of the traveler.”
Travel can be fun and broadening, and getting away from home can help rejuvenate anyone. Pain may interfere with some traveling (you might want to think twice about the hang glider or parasail), but with planning, you can still enjoy visiting a lot of the world.
Want to learn more about traveling with chronic pain conditions? Read “Limited Mobility Traveling Tips: Traveling With Arthritis” and “Pilates Exercises to Do While Traveling.”