20 Tips for Traveling with Rheumatoid Arthritis / Disease

Flying with Rheumatoid Arthritis (RA) is a challenge

flying with rheumatoid arthritisToday as you read this, I’m doing my don’t-miss-the-plane dance. My close friends and family all know well how I start asking them a week before a trip to “pray I don’t miss the plane.” Really. I have missed the plane. Twice.

I literally start preparing to catch a plane weeks ahead of time. Then that last few days is like the sprint to the finish! What JOY when I do get to through airport security on time. Really.

Travel can be harsh on people with Rheumatoid Disease (RD)

 

This question was posted on RAW’s Facebook today: “If your work has you going on planned trips around the country how can you be sure that you will be able to make the trips and give lectures? I deal with this everyday and have to cancel many trips due to my RA. How does everyone else in this situation deal with a job like this? If I can’t get out of bed due to the pain I sure can’t get on a plane and lecture to a large group who has paid a fee to see me.”

Ideally, your doctors will help your disease to be better controlled, but that doesn’t happen as often as we’d like. Meanwhile for those like this reader who worry about taking trips for work, here are a few ideas:

1) Talk with the employer about fewer trips if possible. When they have to be cancelled, consider whether Skype or a Go To Meeting conference might be an option.

2) Talk with your doctor about what kinds of symptom-treating medications will ease your pain, especially during travel.

3) Seek accommodations: Will the employer allow a travel companion to take some of the burden off of you? Will your audience make accommodations so you can speak later in the day? Or sit in a comfortable chair instead of stand at a podium.

More strategies I’ve learned to travel with a chronic disease

PSW-conferenceI’m on my way to Green Bay – no, not to go to a football game. I’m speaking to the Pharmacist Society of Wisconsin (PSW) on Saturday. I hope what I’ve learned about traveling / flying with RD helps someone. Please add your travel tips in the comments.

4) I set aside a whole day for travel. Others may be able to travel & meet or talk or work on the same day, but I’m already working hard with RD.

5) I cheat: I do everything the easiest way possible. Curbside bag check. We grab lunch at the airport after security (and often take it onto the plane). Print boarding passes at home.

6) Comfy soft clothes without belts to remove for security. Slip on / off shoes.

7) Medication schedule: I don’t wait for pain to tell me it’s time, but stay on a strict medication schedule while traveling. Whatever medicines you use for rescue, consider taking them preemptively. In my case, that means anti-inflammatories, low dose prednisone & muscle relaxers, and pain meds.

8) Rest up before travel. Before a big trip, I spend a few days working from bed, going to sleep early, or just taking it easier on myself than usual. Rest is the best way to reduce inflammation.

When people ask me, “How do you do it all?”

I say, EASY: I don’t.

9) Honestly, I stop doing every usual thing in order to make a trip possible.

10) I get help! I’d never think of traveling alone. I have help to pack my suitcase, help to unpack, help to navigate the airport or convention center.

11) I set limits. Lots of limits – like early bedtimes, nonstop flights, and midday meetings instead of early morning. People aren’t aware of what limits I need, and may not be able to accommodate them, but I try my best.

More RA travel tips I’ve picked up along the way

traveling with RA12)  Start “packing” about 3 weeks before travel to reduce stress as much as possible.

13)  Adjust the expectations of others. Make sure they know you’ll do your “best” and that’s enough.

14)  Check all medications and refill if needed.

15)  Plan to visit the GP a couple weeks before the trip. Get any vaccinations you need. Refill any meds that might help you travel more comfortably such as prednisone, pain meds, or topical anti-inflammatories.

16)  Make a list of the key items you pack & keep the list for next time you pack.

17)  Buy rolling bags with 4 spinning wheels, and easy-use handles.

18)  Bring ThermaCare heat wraps and/or the new cold wraps.

19)  Get a lightweight bag / purse to wear cross body – not cutting into shoulder or arm.

20)  Stay hydrated. This commonsense tip can reduce jetlag, excess side effects, and fatigue. Ask flight attendants for water. Fill an empty water bottle at drinking fountains.

I’m sure we can think of more. Add your ideas to the comments!

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

28 thoughts on “20 Tips for Traveling with Rheumatoid Arthritis / Disease

  • September 5, 2013 at 10:33 am
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    If necessary, request assistance through the airport. I always request a wheelchair if I’m traveling internationally. That way I don’t have to navigate the terminal dragging bags (and unwilling limbs) in an unfamiliar spot while in a hurry to catch a plane and fatigued.

    Reply
  • September 5, 2013 at 10:35 am
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    Great topic, Kelly

    I know that every airline has services for people with handicaps. It is helpful to call the airlines ahead of travel and explain your accommodation needs. The airline will provide wheelchair services with an airline assistant from curb to airplane door, including going through a special line for security.

    Larger hotels and conventions often provide accessibility services. Medical supply companies will often rent scooters or wheelchairs and deliver them to a hotel in larger urban centers.

    There are numerous websites online with suggestions for traveling with a disability. I typed in handicapped travel on google and found many useful links.

    I am curious if anyone has traveled with a power wheelchair and how this might work? I really appreciate my own chair and would prefer using it to renting a chair in my destination city.

    Reply
    • September 5, 2013 at 1:08 pm
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      I asked a guy who was on a scooter how that worked. He said that they get you in your seat and then they put the scooter with the baggage. When you land, they have it waiting for you at the door. I’m sure they would do the same thing with your wheelchair.

      Reply
    • September 6, 2013 at 12:19 am
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      I just traveled to Las Vegas and took my scooter, that was a great thing. I was the first on and they put my scooter in the baggage and when I got to Vegas they had it waiting at the door. This made my trip a lot better.

      Reply
  • September 5, 2013 at 10:59 am
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    You’ve got the basics in there for sure Kelly and I’m not surprised. I just could not see how you managed to do all of the speaking and the trips you manage to do feeling the way you do, so now I have some insight into what it takes.
    Last time I traveled I rolled up my down lightweight puffy jacket and used it as a pillow. That way if the plane was freezing I would have an option for warmth.
    My friend takes a light pashmina with her everywhere just in case. It’s easier than carrying a sweater.
    I’m so happy to be able to take so many books on my ereader and lose that weight.
    On last year’s trip I used a backpack for a carryon, and for shopping expeditions. Luckily it is easier to manage as my shoulders are not too bad.
    I usually wear my wrist braces or a hand splint, both to save my hands and avoid pain, as well as to be a visible sign of my mostly invisible illness

    Reply
    • September 5, 2013 at 11:17 am
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      I do a lot less than u think too. This is the 3rd trip this yr – in Sept. All 3 were very short. Only big one this yr is ACR.

      Reply
  • September 5, 2013 at 11:56 am
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    I have traveled on flights that allow you to state your needs prior to arriving at the terminal. You register online as needing mobility assistance or you can call the airline as well. My arrangements were that a wheelchair would be waiting for me with an attendant to wheel me through security and then to assist me until I arrived at the boarding gate. Then upon boarding the flight attendants assisted me to my seat. I also received assistance upon arrival at my destination. (Orlando Florida) We had also called ahead for a scooter rental for a week. So, after our arrival we picked up the scooter which was extremely helpful and allowed me to keep up with others as we were visiting the theme parks at Disney World. Disney World does offer rentals as well, but it is a first come first serve basis, so we wanted to be assured of a scooter for the entire week, so we rented at the Scooter Store. I made sure I had all of my meds as well as pain meds for the week. I did all this during a flare of my SI joints. I wanted to be with my family and enjoy being a part of this planned trip. I definitely would not have been able to do the trip without planning ahead. Planning ahead is absolutely essential when traveling! We also reserved a handicapped room which offered more space and a bath chair which was very helpful. I was not pain free, but at least I did not miss out on the fun!

    Reply
  • September 5, 2013 at 12:19 pm
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    A lot of corporations will allow employees to build in “travel days.”. Days just for traveling to and from without expectiion of meetings, etc. I was allowed to work from home the day before traveling and the day after….it really helped with the stress level and recovery process.

    I have also learned to schedule my flights on planes that offer power outlets at the seats. I purchased a power adapter so I can use my heating pad if necessary. It really helps on those long flights….both for warmth and joint pain relief.

    Lastly, I stick to one hotel chain so I know what to expect with the bedding, added services, etc. My favorite is Hilton Garden Inn with the adjustable comfort beds.

    Reply
  • September 5, 2013 at 1:04 pm
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    I always ask for early boarding because I’m somewhat disabled. The airlines are usually accomodating. It helps because I really do need extra time to get situated.

    Reply
  • September 5, 2013 at 1:16 pm
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    I use an app on my phone to remind me of my medication schedule. I like Med Helper – you can put in meds that you take regularly and also those that are taken as needed.

    Reply
  • September 5, 2013 at 1:29 pm
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    Does anyone know if you can take a rollater thru security and on the plane? It’s a newer, cuter type of walker.’mine is red, w/ a red and black seat cover my daughter made.’it has 4 wheels and folds up quite compactly. I don’t need a wheelchair to and from the plane then and my cane just isn’t adequate for longer walks. But I can really scoot along w/the rollater and don’t get short of breath, cause I can sit if I need to! I’m taking a much needed vacation in October, all non stop flights, and want it as stressless as possible!

    Reply
  • September 5, 2013 at 2:21 pm
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    Like others, I always use the wheelchair service at airports. It gets me to the gate on time (since it always seems to be at the other end of the airport) and helps get you through security, too. Definitely a must if you have to make connecting flights. I always end up getting a pat-down at security since I can’t walk much without my shoes and usually am wearing an air cast boot on my bad ankle. Sometimes I even get to skip the lines, depending on airport policies.

    I use a backpack as my carry-on because it lets me have both hands free when I walk. I have a fold-up cane that will tuck neatly into the seat back pocket. I *always* get an aisle seat and spring for extra legroom seats if they’re available (some airlines like JetBlue have this option and it’s usually an inexpensive upgrade).

    Make sure to get copies of prescriptions, especially any injectables you have to bring along. I’ve heard from people with joint replacements that they usually carry some sort of doctor’s note about their joints, since some of them can set off the scanners.

    For luggage, I have a set of Helium wheeled bags that are super-light and easy to maneuver. Oh and I always pre-board so I don’t have to deal with rushing and shoving crowds. Hotels also often have handicap-accessible rooms that have walk-in showers or at least seats/benches in the shower for easier access. Marriott has these and I usually request them.

    I’m planning to get a lightweight travel scooter soon so I can get around better when I get to my destination, but for now I try to rent them. It’s no fun to put up with the hassles of travel then end up not being able to enjoy your trip because you can’t get around easily enough to do what you want.

    Reply
  • September 5, 2013 at 4:07 pm
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    Thank you once again. Your articles and comments are so real. I like the RD distinction. Everything you write hits a high note for me. Dutch

    Reply
    • October 20, 2013 at 8:27 pm
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      Thanks for the information. I haven’t traveled since RA and your tips are encouraging.

      Reply
  • September 5, 2013 at 4:20 pm
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    I travel constantly all fall as a recruiter for a well-known school’s master’s program, and have for ten years… Last year, RA hit me for the first time in my life, like a ton of bricks while I was on the road. I had no idea what was wrong with me and was in utter agony. I thought I’d die. A year later, I’ll be heading out on the road all fall again very soon. I’m much better, but still have major limitations I never had before RA. I did learn to ask for help and I constantly use handicapped door openers, I always check my bag so I don’t have to lug it through airports, I use my entire arms and legs in lieu of wrists/hands. I wear knits and extremely comfortable clothes on the road and make them things I can get in and out of easily. I take cabs. I bring my ipad instead of a laptop so it’s not heavy to carry. I take later flights so I get enough rest, I ask total strangers to help me lift things if needed… I was always very independent and have learned that I HAVE to ask for help now, and have learned to live with that. It’s a necessity.

    and I get sleep on planes and in hotels whenever I can. Travel really is brutal on the entire body so the more you can do to build in help along the way, the better off you’ll be…good luck to anyone else who’s a Road Warrior. I empathize completely!

    Reply
    • October 20, 2013 at 8:37 pm
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      Thank you for your information. May have to try traveling again.

      Reply
  • September 5, 2013 at 5:00 pm
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    If non-stop flights are not available, schedule longer lay-overs in the big airports. 15-30 minutes may not be enough if you’re having a flare up.

    If it’s a road trip, plan to stop every hour so you can move and stretch. I don’t do long distance road trips w/o another driver anymore, but if I had to, I would probably have to stop even more frequently than that.

    Reply
  • September 5, 2013 at 5:06 pm
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    Hello Kelly. Great post as usual. I just want to add my two cents about traveling. I always split my meds. Half go into my carry-on bag and half into my checked luggage. That way if something happens to one, I will still have the other. I also fill my prescriptions at Target, so I check ahead of time to find the closest Target to where I will be. Just in case.
    And, as stated above, using my iPhone to remind me when it’s time to take my meds really helps. I get so off my regular routine when traveling its hard to remember things like that (lovely RD fog and all). I found, to my amusement, the phone reminded me of my meds at the time I would take them at home and had adapted to the time zone difference. Very handy if you ask me.

    Reply
  • September 6, 2013 at 3:01 am
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    Thank you everybody for the helpful hints! I am transitioning from being able to walk through an airport to sometimes having problems. Fortunately, my Husband usually can go with me. For times he can’t accompany me, I fly in the day before, and get settled in my hotel, and leave the day after the meetings.
    The only advice I could give to others is this: be very careful to observe your surroundings. One time, after the meetings, there was an event a couple of blocks from the hotel. I left the event early and took my scooter back to the hotel alone. This was not a good idea, and was frightening. I will spare you the details and everything turned out OK, but keep in mind how volnerable we can be, especially when traveling alone.

    Reply
  • September 9, 2013 at 9:34 pm
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    I would much rather drive than fly but driving is now becoming a challenge. I hate flying but it is the only way I get to see my grandchildren. On September 19th, I fly from Bismarck, ND to Milwaukee via Denver. I am not looking forward to the trip.

    Reply
  • October 3, 2013 at 1:03 pm
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    I recently too a trip across the country discovered a tip that made traveling much easier.

    On the way out I had two later flights, 3pm and 8pm. On both flights I was in the back row, and the flight wasn’t full, so I was able to sit with my feet on the empty seats beside me. Having the extra room to accomodate my joint pain was a major blessing.

    On the way home I had two early flights 8, and 11 am and they were both full. Sitting with my knees bent and my feet hanging down for that long was torture.

    Next time I fly, I’m going to look for last row seats on late flights and see if I get lucky again.

    Reply
  • October 20, 2013 at 8:34 pm
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    Have just read all the comments on traveling. I am 10 years post diagnosis, and doing well. I can walk OK, and I exercize and do strength training 3 mornings a week. I used to travel to Europe for a few weeks a year in the 1990’s and it was wonderful and took a LOT of energy. That was before I had RA. I am timid about doing that again.
    How long are the flights most of you are speaking about when you experience that jet lag? Are you unable to walk because of the RA in your feet and knees? What kinds of medications are you taking with you? Also have any of you traveled on airlines with Enbrel syringes? – – – I have overweight friends (without RA) who can’t walk far, or stand in line and the airlines accommodate them with wheelchairs and help getting seated. They said that works very well for them.

    Reply
  • November 9, 2013 at 7:33 am
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    I was an administrator in education & it required extensive travel. I always asked to stay at the convention hotel. During breaks or lunch, I could go to my room & rest. I also bought 2 of my toiletries & kept my suitcase partially packed. I was presenting at a large international conference shortly after having a flare so I called the medical supply store & rented a scooter. It was at the hotel waiting for me!

    Reply
  • November 22, 2013 at 8:41 pm
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    Going to ACR this year, I did several things that helped, and learned several things to do in the future.

    What helped: We got help and wheelchairs from curb through security to the flights and from the flights through the airport to the curb. We got good shuttles and parking. Scoot Around left scooters for us at the hotel. We asked for assistance and received it everywhere we went. Taking critical meds (Rx Pain, Pred, OTC Pain, Antacids) in hand luggage, and less critical meds in checked luggage.

    What I’ll do next time: Take our own scooters; Ensure the handicap accommodations at the hotel really ARE for the handicapped (problems at ACR best left undiscussed here); Upgrade seating either to Business or even to First Class for leg room and other comfort! Worth the extra price, and will almost be paid for by taking our own scooters.

    Cheerio!
    Elizabeth

    Reply
  • May 11, 2015 at 11:57 am
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    Ooh great list! Will defo be printing this out as I embark on my second flight with RA.
    My tips from first flight would be:
    Book airport assistance and if possible call your airline beforehand to see if they have support they can offer you.
    If you use crutches or aids that need to go through security scanners, get them back before anything else at security gate by making staff aware of your needs.
    Pack smaller toiletries in those 100ml or less bottles to lower weights of baggage.

    For work trips email any printed documents you may need to a contact at the other end reducing paper bulk to carry.
    Get chargers for laptops etc that are lighter. I have a great one that weighs half of what the originally supplied charger.

    Reply
  • Pingback: Preparing for Korea and my RA » Cara Mooney Photography

  • February 23, 2017 at 9:38 am
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    I have JIA and I am a senior in highschool. I want to do a Gap Year in England but I am not sure how that will work out because I am on methotrexate and enbrel, do you have any idea?

    Reply

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