Vacation, all I ever wanted … if only the Go-Go’s could know how much those lyrics mean to someone with arthritis or a chronic musculoskeletal disease.
While we all know that taking vacation is good for us, every aspect of getting away becomes more challenging and stressful when you have a chronic illness. In fact, we commonly hear from patients that they either don’t take vacation as much as they’d like to after being diagnosed, or that traveling requires more extensive planning, packing, and preparation.
“Travel is just too difficult anymore,” Lyn M. told us on Facebook. “Not just equipment, but the ongoing fatigue. My hands don’t function [well] and I have neuropathy in my right leg. The pharmacy and grocery are about all the traveling I can handle. It’s hard for others to understand.”
Michele H. agreed, noting that having arthritis “limits my life,” she shared on Facebook. “I envy those that can travel.”
We wanted to understand how our community felt about this issue, so we asked ArthritisPower members in a recent Community Poll: Do you take fewer vacations in light of having a chronic disease?
Nearly 1,000 people responded to our poll question, and 63 percent said that yes, they do take fewer vacations because of their disease.
How Traveling Is Harder with Arthritis
“This is definitely a challenge,” says Santa Fe, New Mexico-based rheumatologist Hillary Norton, MD. “I have some patients who have really decreased their travel because of it.” Dr. Norton knows this problem personally. As a doctor who attends medical conferences all over the world and who has been living with ankylosing spondylitis for more than two decades, she understands firsthand how taking vacation changes when you’re managing pain and fatigue from arthritis. Here are the four main reasons she says traveling is more difficult when you have arthritis:
1. Lack of mobility during long plane or car rides: “Anybody with inflammatory arthritis has difficulty being still for prolonged periods of time, and a long plane ride or a car ride can really cause a flare-up,” Dr. Norton says. “There are things that we can do to help minimize that, including getting up frequently on a plane. For some people who get swelling, wearing compression socks can help. For long car rides, stopping and taking walks and taking breaks can really help.”
2. Changes in your diet: “You want to enjoy yourself on vacation, of course. But interruptions in food routine can be challenging for us,” says Dr. Norton. This is particularly important for people whose arthritis co-occurs with gastrointestinal problems such as inflammatory bowel disease or irritable bowel syndrome. Bringing healthy snacks from home or stocking up on staples (such as oatmeal, yogurt, and fresh fruit) while you’re away can help prevent GI problems like nausea, constipation, and diarrhea.
3. Preparing your medication: You never know what could happen when you’re traveling, and you need to be prepared for worst-case scenarios. “It’s really important to talk to your rheumatologist about what emergency medicine might be important to take with you in case of a flare,” says Dr. Norton.
She recommends talking to your pharmacy in advance of your trip because some pharmacies will do a “vacation extension” so you have enough medication on hand while you travel.
It’s also a good idea to check with your doctor or pharmacist about how to pack your medication safely. Some biologic drugs are safe to stay at room temperature for 14 days, so you should find out whether your medication requires refrigeration or not. If yours does need to stay cold, you can pack it in a special travel bag (you can get this from the drug manufacturer’s patient assistance program or from your pharmacy).
4. Changes in routine that can cause fatigue or pain: Vacation may entail being in a different time zone, walking more than usual, or changes in when you go to sleep and wake up, all of which can throw your schedule off and contribute to flares. Dr. Norton advises that you identify what parts of your routine help you stay healthy and stick to those as much as possible while you travel.
“For me, maintaining my exercise routine while I’m on the road is very important, so I make a lot of use of hotel gyms,” she says. “I try to still maintain my schedule of getting up early and exercising no matter where I am because it makes a huge difference for me.”
You may need more rest than the people you’re traveling with, so stick up for yourself and don’t hesitate to head home earlier or skip activities that might be too much for you.
The Importance of Traveling and Fulfilling Life Goals
Even though traveling when you have arthritis requires a lot more planning, packing, and preparation, it’s important to still do what you love, whether that’s visiting friends and family or seeing far-flung destinations on your bucket list. Talk to your rheumatologist and other health care providers about your travel plans and goals. They can help you feel ready, healthy, and safe for your trip.
Dr. Norton recalls one patient with advanced inflammatory arthritis who was discouraged by many people from going on a hiking vacation in Ireland. “It was clear to me that this was a really life-defining trip for her,” says Dr. Norton, who agreed that she should go. “We worked on getting her disease under the best control possible before she left. We did some medication adjustments and got her in her best shape possible, and she did it. It was such a life-affirming trip for her and it was inspiring for me to see her do that.”
“We can’t let our disease define us,” says Dr. Norton. “There are going to be challenges, but there’s sometimes challenges at home too. The benefits of traveling and doing what you want to do far outweigh any inconveniences that your disease might pose.”
Tips for Making Traveling with Arthritis Easier
We asked our CreakyJoints Facebook community for some of their tried-and-true advice for making traveling with arthritis easier:
Stretch and move while you travel
“Reposition yourself and stretch at least every 30 minutes,” says Heidi B. “You can do leg/foot stretches while seated in a car or plane.” Try to get an aisle seat on planes, buses, and trains so it’s easier to get up and stretch.
Pack items to stay comfortable
While you don’t want to pack so much stuff that it becomes hard to tote around, bring key items to make your journey more comfortable. Many arthritis patients like to travel with such just-in-case items as splints, compression gloves and socks, heat and ice patches, or special pillows to support your neck or lumbar spine.
“Portable heat is a lifesaver for me,” says Charlotte M., who recommends hand and footwarmers you can put in mittens or socks and stick-on heat packs to put on your back, shoulder, or knees. “A heating pad that plugs into the cigarette lighter in the car can help keep your back from aching during a long drive.”
“I take everything with me that I use at home: electric massager, ointment, leg warmers, ice packs, heating pads, foldable walking stick, you name it, because you never know what you might need,” says Mankomose N. “My weekend trip looks like a week.”
Bring supplies in case you need ice
“I always pack some Ziploc sandwich bags and a couple rolls of compression wraps in case I need my friend ice,” says Nancy K. “When flying I add a couple of those snap ice [packs]. When driving I take my frozen ice packs. The compression wraps are to hold the packs in place.”
Be prepared with medication
- Pack your medication in a carry-on bag so it’s always with you.
- Keep your carry-on with your medication under the seat in front of you rather than in the overhead bin so it’s accessible.
- If you’re traveling to another country, check beforehand to make sure you are permitted to bring the medication with you.
- Bring extra medication and divide it among your various bags.
- Bring a doctor’s note for any prescription you take and/or the original prescription in case you need a refill (you may need this when going through security).
- Pack any medication that needs to stay cold in a special travel bag (you can get this from the drug manufacturer’s patient assistance program). If your medication needs to stay cold on a very long flight, let the airline know in advance in case they can help store it for you.
- Leave a copy of your prescriptions home with a loved one, so they can help you from afar if necessary.
Get help at the airport
You can log thousands of steps at the airport getting to your gate, which can lead to pain and fatigue before a long flight. “Request special assistance for airports if you need it,” says Candace L. “I always get an assisted wheelchair to travel,” says Judy S. “I would miss my plane if I didn’t! I am so grateful for that service.”
Ask about priority boarding so you can get seated on the plane sooner and arrange transportation in advance at your arrival destination (such as a hotel shuttle or a private car service) “so you’re not standing around after a long flight vying for a taxi or local public transport,” she adds.
Bake in extra time for resting
“Plan to rest the day you arrive and let your joints adjust,” says Candace L. “You’ll be in a better position to enjoy things on day two.” The same thing goes for before and after you leave. If your schedule permits, give yourself an extra day before you leave to pack and prepare with less stress, and a day to settle in and unpack when you get home before you go back to work.
Bring assistive devices
Always better to have your cane or walker even if you don’t end up using it. “I love my folding hiking stick,” says Nancy. “It can’t bear serious weight but that little third point adds invaluable stability when I have to stand for a while or negotiate uneven surfaces.”
Use luggage that eliminates unnecessary stress and strain
Make sure your suitcase has wheels and is easy for you to maneuver. Consider pushing your suitcase in front of you instead of pulling it from behind to reduce the strain on your arms and shoulders.
Another tip: Use bags that allow you to be hands-free. “I use a backpack as my ‘purse,’” says Nancy. “There are two side pockets. In one I keep an empty spill-proof travel coffee cup. Once through security I buy coffee and pour it into my spill-proof cup. I also buy a bottle of water for the other side pocket. My backpack also has my drugs, a washcloth, a sweater, a book, a rolled towel, and a few snacks. The front pocket has the contents of what I would carry in a purse, except for the wallet and cellphone. I assume pickpockets might like my backpack and because my wrists tire so easily, at the airport I wear a travel pouch around my neck. It has my driver’s license and passport and anything I might keep in a wallet. My hands are now free of handling anything unless I choose not to check my suitcase.”
Don’t be ashamed to ask for help
“Fight for your right to assistance,” says Terrie W. “I had a horrible train experience even after having a handicap ticket. They made me carry my own bags all the way down the platform, struggling in tears, followed by forcing me to climb a set of stairs to take a seat on the second floor. Fight for yourself!”
Get Involved in Arthritis Research
If you are diagnosed with arthritis or another musculoskeletal condition, we encourage you to participate along with other patients like you in research studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.