My Trouble with Travel

The holiday season is now over, and for many of us suffering from multiple sclerosis, that’s a reason for celebration. This time of year can present a number of issues for us, from a hectic and exhausting schedule to loud noises at seasonal events. The biggest issue for me, however, is that of traveling to see loved ones. In the past couple of years, taking a trip, even for something that should be pleasurable, has become a nightmare.

Traveling was once something that I loved. I’ve had the pleasure of living on both coasts and exploring everywhere in between. I’m happy to say that I’ve been to many of the states in the US. There is a lot to experience out there, and when I was younger, I wanted to see it all. I’m glad I had many of those experiences because lately, a simple one hour car ride can wreck me for days. It’s gotten to the point where the very thought of sitting in a car can cause such a tremendous amount of anxiety that I can barely function.

So what is it like for me?  Well, the first thought that comes to mind is how painful a trip can be. Pain is a pretty common MS symptom for me, particularly in my legs. Typically this pain is a sharp, burning sensation, like my legs are on fire from the inside out. Other times it can manifest itself as a dull, aching type of discomfort. Still other times, my legs will just start spasming and I have no control over it.  While I deal with these sensations throughout any given day, they very much come to the forefront when my legs are confined (as happens when you sit in a car or plane). I have trouble getting comfortable in the confines of my own home, let alone in a vehicle. No matter where I am at, I typically shift from sitting to lying to even standing. Sometimes that helps, sometimes it doesn’t, but I at least feel like I am doing something to battle it.

In addition to the pain issues, I am no stranger to one of MS’s worst and most common symptoms: fatigue. You wouldn’t think sitting in a car for an hour or more would have a profound effect on someone but I assure you it does. While fatigue is an issue that I battle nearly every day, it is magnified if I’ve been traveling. I may have some excitement when I arrive at my destination that will keep me going for a few hours, but not long after that the fatigue will start to set in. The day after traveling somewhere can be especially hard. MS fatigue is not a sleepiness (no amount of sleep will help it), your whole body feels weighed down and moving anything becomes exceptionally hard and even more exhausting. It’s very much like fighting through quicksand or trying to escape a giant vat of molasses, and that’s just to even accomplish the simplest of tasks. Just raising your arm to take a drink of water can seem so incredibly difficult. Compounding all that, when you travel, you are normally there to be active (and in this case, “active” can be be as simple as meeting with friends or family), adding more pressure, which only exacerbates the issue.

I’m not sure why I have a worsening of symptoms while traveling. The motion? Vibration? Cramped space? Stress? I’ve spoken to others with the disease via the various support groups I frequent and realize that I am not the only one. Travel seems to take a heavy toll on many of us.

This year, the pain and fatigue I’ve been experiencing when trying to travel have really impacted my life. It’s gotten to the point that, lately, I have been avoiding traveling more than thirty minutes. This has led to missing out on some vital Tysabri infusions, Christmas with my family, and countless good times with friends. That’s how bad it’s become for me, that I’d rather miss Christmas then drive in a car for two hours. When I take a step back and think about it, it seems insane that I’ve driven across the country several times but now such a short drive seems unthinkable.

As always, I do have hope. As I mentioned, I’ve missed infusions because of the drive, but I’ve now found a much closer place to get them. A consistent infusion schedule gives me optimism. I’ve also found a good rehab facility nearby that I plan on working with on a more regular basis. I’m always looking to our great MS community for tips though. I’m hoping this sparks some discussion, do you have trouble traveling with MS? Do you take any special measures?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (32)
  • Kubbyskoo
    1 year ago

    Those who still walk or easily get about, have a gift left to explore the world and come tell us about it … MS is world wide and handled differently world wide. Be nice to hear some! Otherwise just have fun.. I don’t travel anymore causing too much trouble …

  • Singaporesling
    1 year ago

    I am considering a cruise. Since 2015 I have balance issues that persist. Am I being realistic thinking I can still go n cruises. ?

  • Devin Garlit moderator author
    1 year ago

    I think so, each of us are very different. Go with your gut feeling, but also definitely talk to your MS specialist and see what he/she thinks.

  • JenJen
    1 year ago

    Same here I have a bed made in the back seat and my ms symptoms seem to take a little longer to strike. All I do when I get to my destination I am ready for bed and deal with me. The next day is for what ever reason the trip was for. May GOD be with you and anyone who has need of strength. From the the bottom of my heart Stand Strong.

  • sip1beer
    2 years ago

    Hi, Devin. I have been lucky enough to have traveled to over 70 countries in my life. That was before MS. Now that it is getting progressively worse, so does travel. My husband and I travel to Europe every year, and I’ve finally gotten in a routine of only going to familiar places and doing familiar things. That way, I limit the surprises. I start packing two weeks in advance, so the day of travel, all I have to do is get dressed, add my meds to my suitcase, and leave. I would rather sit in an airport for three hours than have to rush. I use a scooter, so I have to make sure the airlines know that and that the hotels have elevators. The cobblestones are a killer in a scooter, but I’ve gotten past that by learning to joke about the ride. Once you start laughing, you can’t stop. Cruising is also great, because they can easily accommodate your needs.

    Fatigue is a problem, but I make sure I haven’t planned too much, and that I always plan a rest. Every time my husband says, “Let’s go somewhere!” I start thinking of excuses. Then, I look at my pictures of all the places we’ve been, look around my house, and the decision is easy. Go!

  • Singaporesling
    1 year ago

    Thank you for sharing!!! You give me hope. You travel places I like. They did not appear accessible before my diagnosis…but MS was not an issue when I used to travel. I want to travel again …but now with my small children. I read that London and Paris are becoming more accessible. I hope this is true. ….

  • Devin Garlit moderator author
    2 years ago

    Thanks so much for sharing your story! I’m glad to hear you are still getting out there! Familiarity is a huge advantage to me when traveling too, with anything really.

  • Isalady
    2 years ago

    Wow, your description of traveling is spot on! I am going to make sure my family reads it. I start stressing about where the restrooms will be, and worrying about what I’ll do if I am unable to get to one in time. I also have a lot of back pain if I sit for long periods and I worry and stress about inconveniencing any travel companions with my frequent stops. It’s no wonder I’m exhausted before we even leave to go anywhere! We take a lot of cruises, these are great vacations because I can do (or not do) anything I want without inconveniencing travel companions. But the travel to get to the cruise ship is another story…..

  • Devin Garlit moderator author
    2 years ago

    Thanks so much for sharing! I hope my words will help explain your situation to your family! That’s pretty much why I wrote this, to help with situations just like that!

  • trloftus
    2 years ago

    Hi Devin. I can relate to your plight. The fatigue feels real, but with my coping method, I can handle it. I also believe the cause of fatigue (especially regarding travel) is anxiety. My answers; Meditation and faith. I will close my eyes, breath deeply, feel my own environment, and repeat in different ways that “everything is good” and “it will all be alright”. The Lord is in control – I am not, so I let go of the stress and anxiety. Count your blessing and thank the Lord for each of them. I must admit; sometimes I have more success than other times, but it always helps me to some degree. Try it for yourself at home before a trip to see how it works for you. Best wishes!

  • Grandma5
    2 years ago

    I was so glad to read this because the last three times I went back to visit my family is end up in the hospital I try to figure out what causes the problems. If we fly the next day I need to do nothing but rest. I think just being out of your routine is part of the problem. Everyone has steps going to their house and since steps cause me so much trouble this adds to my problems. I don’t normally go out in the evenings and since everyone works we do many things in the evening. My husband thinks that as long as I’m in the wheelchair I should be fine. No one understands the toil of constant social activity takes on us. I always push myself and then I pay the price. So frustrating. I wish I knew how to make traveling pleasant

  • Devin Garlit moderator author
    2 years ago

    Thank you for reading and sharing your story. You are so right, people often don’t understand that activity, whether we are seated in a wheelchair or not is still so taxing!

  • buchanan1
    2 years ago

    Will be driving to NY in a couple of weeks and I know I will need to to stop every 2-3 hours to stretch and bathroom breaks. I use a walker to ambulate secondary to my left leg spasms and left foot drop. My MS has affected my left side. Last time I drove these distance was 2012 and 2013. I know it will be tiring, but I don’t want to put it off and with hotel, airline and rental cars so expensive I have no other choice. I am out and about driving everyday for long periods of time and getting out to stretch and bathroom breaks.

  • Devin Garlit moderator author
    2 years ago

    Good luck on your trip! And thanks so much for reading and sharing your story!

  • mascha
    3 years ago

    Yes I did a road trip not long ago. I had to stop every 2 hrs to stretch.I was a passenger in the car but my body did get stiff and spasm.We did a test road trip first,which was a 5 hour trip. Then our road trip of 14 hrs. I did get tired but more so my body.

  • Devin Garlit moderator author
    3 years ago

    Glad you made it through your trip! Those spasms are tough! Thanks for reading and sharing your story!

  • KarenMc
    3 years ago

    Your article is so helpful to me!
    I’ve been having a hard time explaining my fatigue to my wife. I will have her read your article!

    Here’s a general question about fatigue. Does rest help?

    I skipped my low impact aqua class today because my fatigue is bad today and feel like “pushing through the fatigue” will not be helpful

    Thank you so much!

  • Devin Garlit moderator author
    3 years ago

    Thanks for reading, glad it was helpful!

    For me (and we can all tend to be a bit different), sometimes rest will be helpful but most times it won’t. I could sleep soundly and wake up and be fatigued. That said, when I know I have something big coming up, I do try to rest up for it.

  • Lisa M
    3 years ago

    Hi Devin
    I just read your article on travel and like a few other have stated, You make great points. Im considering a road trip (17hrs) this Spring to visit a friend, this will be my first car trip thats more then a couple hrs. Im hoping with lots of stops along the way to stretch that I’ll be ok, but you raised some good questions, for me to ponder. Im still thinking this over, there is so much I need to take along with me just to be able to get around, like my scooter, my rolly, my shower chair…I made reservations at a hotel for ground level, with walk in shower stall, so I think Im ok there. I just second guess myself, I don’t want to be miserable by the time I GET THERE! I won’t be doing any of the driving, just riding but like you say, sometimes getting comfortable at home can be trying. If anyone has any insight for me, please feel free.

  • Lisa M
    3 years ago

    Thanks Devin, I try to make that my motto as well, Im considering a “trial” road trip, maybe an 8 hr trip just to see how I fare. I figure if I AM a miserable grump at half the time, It may be smart to consider sending my friend a plane ticket to come see me! 😉

    I’ll let ya know how it all ends up!

  • Devin Garlit moderator author
    3 years ago

    Well, if you many stops and have a few distractions you’ll probably be ok! I like to think positively, sure, you may end up miserable but you may end up fine too. Better to go and give it a shot then to regret not giving it a try later. Ive been trying to make that my motto these days, I just try to be smart and budget in some rest time for when I arrive. Good luck to you though, sounds like it’ll be fun!

  • Kimberlybthatsme
    3 years ago

    Hi Devin, I just read your article (spot on by the way) and like the others you must be in my head. I was just diagnosed a week ago but suspect I’ve had it for a while. I’ve also had a failed back surgery so my getting “worse” with travel, grocery shopping, making the bed I thought it was due to my back issues until just this week when I was finally diagnosed with MS. In the past few months I’ve lost interest in driving, shopping, cooking, juicing and visiting friends. My level of pain and exhaustion is off the charts! I will be traveling to Florida soon (flying, with wheelchair help…saves lots of pain and energy for sure!) to visit my mom who has taken this news worse than I did! I found that asking for assistance with a wheelchair, taking my pain meds as soon as I get on board and trying to keep my mind on other stuff (i.e., brain games on smart phone) it seems to help. No matter what I do, it still takes me a day or 2 to get over the travel part. I plan to stay positive…as far as the meds for MS…the meds my doc wants me on will cost me over $5,000 for 1 month supply…that’s not happening! I will be fighting this disease the alternative way…wish me luck!

  • Azjackie
    3 years ago

    You just like me. Family, especially Mothers act as if you’ve been handed a death sentence that they’re required to administer it.
    I understand your desire not to take the prescriptions but the drug manufacturers can offer assistance. When I did not have a job my $10,000/month prescription was free to me to continue treatment.
    I wish you well.

  • Devin Garlit moderator author
    3 years ago

    Good luck! Keeping your mind busy is so key to not only traveling but even just everyday life! I know I can get a little crazy and emotional if I don’t (sometimes even if I do!). Oh I totally understand about your mother too, mine still handles it worse them me!

  • 1949pockets
    3 years ago

    I just read your article as I sit / lie in the backseat of our truck, pulling a travel trailer, and bouncing all over the place and feeling every bump in the road. Driving over 500 miles from El Paso to Ft.Worth. I want to curse the road, the trip and anything I can think of. We got the travel trailer to make it easier for me. It is no longer working. I try to stay positive with every jolt of the truck I just want out! I’ve been yelping with pain at some of these road bumps.

    Has anyone had experience with a mobile home? Is it as any better??? Is the suspension better to lessen the sometimes violent bumps and movement?

    I like to travel to see my friends and family. These rides are talking their toll on my body and aggravating the MS. My husband is trying to make it as comfortable as possible. It’s just not working anymore.

    If it weren’t for SwiftKey app, I wouldn’t be able to write this at all. Anyone with MS should get this free app to help you write and text.

    Thank you for this article. I know my legs will be going wild tonight!

  • 1d84c45
    3 years ago

    You could try renting a mobile home cheaper than buying to find out if it works.

  • Devin Garlit moderator author
    3 years ago

    I’ve wondered about a mobile home too. It seems like that might be easier but I’m not really sure. I’ve never actually ridden in one. I hope the rest of your trip goes well. I will definitely check out the SwiftKey app!

  • Johan
    3 years ago

    Devin; it appears that you’re reading my mail. It seems that I could have written your article. I too was once a ramblin, gamblin guy, been all over the USA. Lately, I try not to drive more than 50 miles a week. Yes, I still drive. Diagnosed with SPMS in 2012, quit working because of it in 2014. Life is still adventurous. I do have trouble traveling and am planning my first flight with MS soon, about 500 miles. Special measures that I take I came across shortly after diagnoses; common sense.
    Thanks for writing, articles like yours help keep me going.

    JE

  • Devin Garlit moderator author
    3 years ago

    Thanks so much for reading! That’s so awesome you still drive!

  • Azjackie
    3 years ago

    I almost forgot, take the trolley, cart, whatever the airports offer. Worth it to store energy for your destination. I found this out the hard way one side of airport to another in North Carolina. By the time I got to my destination I tried recovering with 6 hours sleep. Return home I used the trolley and felt much better.

    Good luck I wish you well?

  • Devin Garlit moderator author
    3 years ago

    Awesome! Thanks so much for the tips!

  • Azjackie
    3 years ago

    Devin,

    I was diagnosed January 2008. I did 1 unsuccessful year Tysabri infusions while working full-time.

    Between my job and the drive to the infusion facility I was so wound up the nurses would have me relax 1/2 hour before infusion. I firmly believe MS was brought on by stress. I am now retired and take 1 x/day oral Gilenya. Now the only stress is insurance and minimal visits to Dr.

    I also suffer severe exhaustion when traveling for long periods of time. My neurologist is 2 hours away so I combat this leaving earlier and stopping to get out of the car at least once to move.

    Luckily I do not suffer pain driving but I do suffer stiffness with exhaustion. When I try to walk I move like Frankenstein. The stopping during the trip helps a little.

    If I am a passenger I try a little meditation and stretching. On a plane I try sleeping. No deep breathing with meditation, germs (week immune system – Gilenya).

    I also find drinking something icey cold during travel is helpful. I guess it wakes my nerves?

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