Traveling with Fibromyalgia: The “Invisible Disease”

I am the proud owner of a diagnosis of Fibromyalgia.

Well, not really proud; I’m not even the slightest bit happy nor am I amused by it. However, I refuse to be held prisoner by the “invisible disease” that affects so many people, rendering them useless and agonizing in pain. Technically, Fibro isn’t even considered a disease, seeing as it is not degenerative and there is not a specific test that says “Hey, YOU! You’ve got Fibro!” Instead, it’s years and years of testing for ailments and real diseases that don’t actually reside in your body; it’s having heaps of people tell you that your problems are all in your head and it’s unneeded stress of thinking that something serious is wrong, and you’re nearing death. After you’ve Googled your demise nightly for a few years, FINALLY you find a doctor that believes in Fibro (some do, some don’t), and wallah!… you get a Xanax prescription, Vicodin and other pills that really just make you feel shittier than you already did. It’s countless trips to the ER when you think you’ve had a stroke, a heart attack or your vision just magically disappears for a solid 15 minutes. It’s not knowing WHEN to go to a doctor, since Fibro mimics a million other serious issues; I am sick and tired of going to the doctor, only to hear nothing is wrong. Most importantly, I will NOT be the person that complains about feeling like crap, nor do I want to even bring up the fact that my Fibro has flared-up and that something hurts.

If I do complain or even mention my Fibro, then you should be aware that it’s gotten to the point that I’m beyond miserable and I have been for quite some time.

Every time I travel, I am in the middle of a flare-up. It never fails. I have never been able to hop on a plane without worrying if my trip will be painful or if I will be able to get through it. Luckily (if I can say luckily?!), Fibro is hugely affected from stress; when I travel, within days of me leaving my work-life behind, my stress is gone, and so is 90% of my symptoms. Additionally, as soon as I return, it’s patiently waiting for me with a giant hug, as if it missed me dearly.

The worst issue I have seemed to have while traveling was Costochondritis; an extremely painful inflammation of the cartilage between my ribs and breastbone, usually brought on from some sort of trauma, but also from Fibro. The pain and symptoms mimic a major heart attack, so you can imagine how fun it is (it is actually bothering me again as I type this. At least I know now that I’m not dying!). I was told that the inflammation was going to take three to twelve months to heal, which was diagnosed exactly three months to the date that I was to be leaving for a two month trek of Europe. Miraculously everything appeared to be golden upon departure, however the fear of re-injuring caused me to miss out on partaking in water sports while visiting Corfu with my friends. I was completely bummed out about sitting back and watching my friends from the beach having fun on jet skis and water tubes, but it was something I just wasn’t going to risk. It was also the only time I have let my Fibro hold me back from doing something I wanted to do, mainly because I was so far from home should it become bad again.

I’ve heard and read so many stories of people suffering from Fibro who are basically contained to their beds, sleeping their days away in pain and misery, but I REFUSE to be like they are. I threw out my medications (not the Xanax! I need those babies!), try to avoid certain things that trigger my flare-ups and I don’t talk about it. While some people think it’s not good for me to keep it in and not mention it, I really don’t feel the need to constantly say “I’m hurting.”

The only reason I am even writing about my issue is to hopefully inspire someone, anyone, even if it’s just one person who is in pain to get up, get out and travel the world.

Even if a flare-up is bothersome while traveling, it’s far better to be experiencing new cultures, food and people than hanging around the house in your pajamas all day. After all, when your mind is so occupied with new sights and cities, you actually forget about being in pain. When you forget about the pain, you automatically stop stressing over being miserable, and the flare-up burns off quickly; it’s amazing what happiness can do to Fibro, and I truly believe it’s the real cure to the symptoms. Know your limits, get rest when you need it but DON’T let this “invisible disease” dictate your life.

travel does the heart good

About The Roaming Bean (109 Articles)
You're probably wondering what the heck is a "Roaming Bean"... Given that I am clearly not a Bean, and my name is Jen, what gives with this Bean thing, right? A friend of mine called me JenBean as a child, and it kinda stuck. Actually, it really stuck... even my license plate says Jenbean. And seeing as I have this grand lust to wander the world, The Roaming Bean seemed suitable. I've changed my career path more times than I have my underwear (minus all the times I've gone commando).... from animating, to forensic pathology, to international business, to fashion marketing and even to my wonderful and favorite of the bunch, degree in culinary arts, nothing kept my attention. Nothing was fun enough to do every day for the rest of my life. I mean, even though I cooked for celebrities in the heart of Hollywood, CA, why the hell would I want to sweat my ass off in a ridiculously HOT kitchen for most of the day and go home smelling like beef and onions? And the chef hat?? Do you know what that did to my hair?? Enter traveling.... The rainy day I descended down the tower of Notre Dame in Paris, gripping on to the railing for dear life so not to slip and tumble to an early death from the torrential down pour that was causing a small flood in the stairwell, my life changed. When I safely made it to the ground, legs shaky from an apparent lack of fitness it requires to walk up and down 387 steep stairs, I realized my hands were stained a delightful copper color from the rusted hand rail I had so dearly clung to. Desperate to get the icky stuff off my supple hands, and no running water in sight, I did what any other hopeless idiot would have done: I washed my hands in the nearest Parisian gutter. It was that moment that changed my life... I threw away my hair dryer, my rolling luggage and my dignity. I let my hair go natural, I bought a back pack and I CAMPED through Europe for a month and a half. Yes my friends, I crossed over into a savage traveling beast. Ok, a lot of people travel that way. But I didn't. And I'm so incredibly thankful for that rainy day in Paris that made me realize the world is a pretty sweet place. That realization led me on a quest; a quest to get out there, see things, soak up some local culture and eat my way around the world (with minimal food-related illnesses, such as but not limited to raging diarrhea).

12 Comments on Traveling with Fibromyalgia: The “Invisible Disease”

  1. Hi Jen – so glad to find this as I am looking for inspiration. They don’t know what I have yet but my symptoms are pointing to fibro. My boyfriend lives in Toronto and I live in Seattle. I used to love our long distance relationship and I adore traveling. Even with my symptoms I do fairly well. The day after a flight is the worst. I usually have a lot of pain and anxiety attacks but I start feeling better shortly after. So here is my issue…I have plans to join my boyfriend at a beautiful resort in Florida next week. He’s working, I’m just along for the fun. I’m really looking forward to it and I know I might have some pain to deal with. I’m ready for it. BUT then we fly back Saturday morning and leave for Hawaii from Seattle on Sunday. I’m scared to death that not having a break between flights is going to do me in. I still do great on the flights themselves; it’s just that I usually need at least a couple of days to recuperate. I’m doing so well right now and I’m scared to risk it. My doc says go, my boyfriend says go, my family says go. I’m scared that it’s going to be miserable and we are going to have to cancel our Hawaii trip that was so expensive. I’m thinking maybe scheduling a massage between the trips to help my body a bit? Any other suggestions? What would you do? I really appreciate your advice. A little lost now…

  2. Hey! I have fibromyalgia too. WOO! but not really. I travel the world but just take it easy. I’m glad there’s others like me out there!

  3. Sadly, much of my travel is for work, so am not in “vacation” mode once I get to my destination, so I don’t have the benefit of less stress, etc. I did just discover the company allows “b but business class” travel for flights 5+ hours long, if your senior mgmt. Approves it. That helps: being able to stretch and having a more comfortable place to “nest” and to rub down my legs has been a blessing. Sleep however – either on the plane or in t he hotel is still elusive. Sigh.

  4. Thank you so much for sharing your story! Your first two paragraphs sound just like me. I am currently in a flare up, brought on by a head cold. The fatigue is INTENSE. My husband and I have a trip booked down south in just 4 more sleeps. I have been afraid that we would have to cancel, as the cold will likely settle in time, but the fibro likely won’t. We went once before, and the fibro symptoms faded when we got there, and stayed away for most of our trip. Thank you for reminding me that I don’t need to wrap myself in bubble wrap and stay home all the time or constantly focus on ‘how I feel’ just because I have fibromyalgia. I feel much better about going, even though I’m in a flare up. I Googled ‘traveling with fibro flare up’, and I’m glad I found you! 🙂

  5. Are you still there? I just got off a plane (with two small kids – although thankfully this time a nanny too) to visit my husband who is working in NYC. We arrived on Friday. I managed dinner on sat because I brought ALL my pills with me) but have been in bed the whole time apart from that and today is possibly on a par with the worst fibro day I’ve ever had. Trigger point and muscle pain EVERYWHERE, so thirsty I just drink and drink and can’t stop (this always comes with flare) and had to crawl to bathroom one point this morning I was so weak. . WTF? I had been managing SO well for weeks and weeks. So I googled fibro and travel and found this. I am in LA too. Are you on twitter? Where in LA are you? I have friends who have similar thing to me but most think they have Lyme. I’ve been to everyone, like you, and all they can say is fibro…

    • Alice,

      Thanks for finding me! I find my flare-ups are a mind-over-matter situation, so when I travel I just focus on seeing the sights and before I know it, I’m good to go.

      I don’t take any pills as they make me feel worse, but I hope you’re feeling better!

      I’m on Twitter @theroamingbean, and I’m in LA.

      Happy travels!


  6. I enjoyed this blog post very much. I had not traveled for years since I prefer to cocoon in the comfort of home, but 6 months ago I traveled out of the country. The only precaution I took was not booking a return flight because I didn’t know how I would do and wanted the flexibility to return quickly if I didn’t handle it well. It worked out very well, and it’s so true what you said about the stress leaving once you’re away! I had so much energy, slept well, and for several weeks I didn’t feel any fibromyalgia symptoms, it was wonderful! But as soon as I returned it was waiting for me and boy did I pay for it physically. There’s definitely a connection with stress; hopefully someday it will all be figured out so there will be a cure. I too don’t like to talk about my pain, and I avoid fibromyalgia forums…I already feel it and I don’t want my mind to be stuck on it thinking about it any more than I have to. I admire you for switching your careers, I never was interested in working at the same job for forever either! Maybe if I had moved about more with work I would have left a stressful career before being diagnosed with fibromyalgia. After quitting my job I found that being a full-time housewife is also very stressful! Thank you for the encouragement to travel, it really counteracts the symptoms and makes them fade away.

  7. So glad I found this. I am in the middle of a flare up and an opportunity to go to Turkmenistan has showed up at my door. I considered not going because of fibro. So I am reading your blog now and thinking, maybe I can deal with the 18 hour flight!

  8. Hey Jen! I’ve been meaning to stop by again and comment on this post. Thanks so much for sharing. I just found out I have a bunch of food intolerances too so ALL the good stuff had to go for the next few months – including chocolate and Guinness! Hopefully it will be worth it. Keep fightin’ the fibro xx

  9. Thank you for writing this. I have fibro and have dreams of traveling the world. The flares can really leave you bummed and then the depression kicks in. I found you because I searched “Traveling the world with fibromyalgia” Go figure! It’s possible 🙂

    • Hi there! So glad you found my post! i hope it inspires you to travel! Fibro sucks, but I’ve found it truly is not as bad if you don’t sit and dwell on the fact that it’s there. Every single time I travel, it goes away. Never fails. It is so insane how stress brings on the flair-ups! I’m a restaurant owner, so the stress is unbearable on a daily basis. Are you in a high-stress profession, too?

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