COMMUNITY QUESTION: Road trips with fibromyalgia?

AlyssaWinegardenAlyssaWinegarden New Life Outlook
Carol asked: 'What are good tips for comfort when by car for a long distance? I can feel every groove in the road.' Thanks for your help, friends!

Comments

  • @AlyssaWinegarden Hello, I have learned that I must take at least 2 soft pillows with me. I put 1 behind my back and recline my seat. The other pillow I use under my right arm for support. I will often take another pillow to put behind my head but on a trip to Kansas a couple of weeks ago found that was NOT enough. I stopped and bought a neck pillow to add to the mix. Make sure if you get one it is not a hard one but a very soft one. I think mine has tiny little balls of some sort to fill it. One other thing I bring is a very soft blanket regardless of the weather. I find that getting cold makes things much worse and the ac blowing on me hurts. I also make sure anything I may need is in very close range so I don't have to twist and turn to get things. Hope this helps.
  • I use throw pillows at work, in the car and sometimes at places where I know I'll be sitting for a while. At work I have a small heating pad that I place between the pillow and my lower back. In the car I bought a heated car seat pad where I also place between the pillow and my back. They are very inexpensive. The heated car seat pad can be purchased in an auto supply store, Walmart, Target, and even online, which I find myself doing quite a bit since having FM.
  • @AlyssaWinegarden No doubt about it, long trips in the car are difficult. I agree a/c blowing on joints is painful.I try to aim them away from blowing directly on me. Pillows may help with more comfortable positions. I find that I need to stop often and get out to move around so I can stretch.
  • I travel to AZ. For the winter. I will travel up to 4 hundred miles in one day. I will have to rest for a day before I can then travel again. I have just found Community and have read the posts regarding the use of pillows and neck rest and believe me that I will be adding those in my car. Thank you all for your sharing.
  • @Buntyblue67
    Hello I read your post and I agree to take extra pillows and blankets regarding the weather.We took a 5 hr trip i used both pillows and blanket too.It was in aug and I still got cold and it was in the high 90's.you would not think to pack blanket and pillows in the middle of summer but i did and i am very glad i did.
  • This info is good. I will start using more pillows. I hurt all day everyday. Car rides are the worst, can feel every little rock it feels like. I have a blood disorder call Factor V Leiden that also has its limits of sitting, standing for long. My list also includes chronic pain, chronic fatigue, RA, OA in spine and neck.
  • Thank you all for the information, I never knew why I was always colder than any one else, and the pillow s will help I am sure
  • JoiJoi Member
    I drove to the east coast from Nevada back in 2002,I was off the road nightly by 6pm and back on it by 7am. I drove alone, looking back it may have been a mistake as I have fibr. It wasn't as bad then, its gotten alot worse since I made the move home. I find I get cold very easily and its hard to warm up when I do get cold, I am sure being diabetic doesn't help at all.
  • I've gotten to the point where anything over 3 hours is too much. It takes me too long to recover after returning home and I've found the same thing with flying. I'm only 49 and I'm so scared of becoming home bound or something. I also have Interstitial Cystitis, Pelvic Floor Dysfunction, Arthritis, Chronic Fatigue and it just goes on. Good luck to those who are still able to travel and I pray for your comfort.
  • I just took a trip to Reno, from the southern part of the Central valley in Calif. It took us 6 1/2 hours because of traffic and weather. I bowl in a tournament every year at this time. I really questioned myself as far as going again next year. I was in so much pain this time that I cried. I really dreaded the ride home. I had taken a couple of throws for the motel room, boy was I glad I did. The ride home wasn't as bad. Next year pillows and a car heating pad will go too.
    Also, I learned just how much my hot tub has been helping over the past 9 years. I moved a year ago and haven't been able to hook it up. I have found I'm in much more pain this winter and have had to rely on more pain meds.
    I have never been on this site before today, Thank you so much for all the great info!
  • We love to road trip - one of our favorite things to do. For a while, we had a van, and I made a nest with memory foam mattresses and pillows and comforters... My daughter and i would trade places any time I needed to rest. Also - stopping and moving every hour can seem frustrating, but it makes a WORLD of difference. Now that we have a car instead of the van, we haven't gone as much. So we are purposely looking for an old, cheap van that we can turn into our roadtrip van. Also - lots of water - it's amazing how much dehydration seems to exacerbate the existing issues!
  • I have had fibro for the past 26 or so years, probably longer. It was misdiagnosed as many other things in the early years, one of those diagnoses being "panic attacks". I loved taking trips and going on vacation until the fear of panic attacks and the myriad of symptoms got so bad, I didn't want to go anywhere. Eventually, I began to realize, the "panic attacks" did NOT bring on my symptoms -- it was THE SYMPTOMS of pain, nausea, headaches, IBS, dizziness, etc that caused me to feel anxious. I was very fortunate to find a doctor who also suffers with fibro, so she understood the struggle, and NEVER dismissed anything I said. For 24 years I was unable to travel by car (forget plane or train!) to visit my elderly parents who live 10 hours away by car. Reading how others handle the trip, it amazes me how we all came to the same remedy: Absolutely bring a throw, something soft. The AC can chill me to the bone and then I am so cold internally, and that makes me even more uncomfortable. A Therma- Care heat pack for lower back, neck or shoulder is also very soothing and helpful. Definitely drink -- I bring decaf tea in a thermos -- it also keeps my insides warm. A pillow is also a must, and/or a neck support pillow. My car has heated seats (for back and butt) which is a lifesaver! Recline the seat until you find a comfortable position (and change the position every so often) so you don't get stiff. Have your pain meds handy (unless you are driving). Don't be a martyr -- take them when you feel the pain coming on. And MOST IMPORTANT, ESPECIALLY if your fibro also causes the horrendous pain of restless legs -- STOP OFTEN!! Get out of your car, walk around, stretch. The longest car trip I have now taken was 13 hours. I no longer have "panic attacks" because I KNOW where my symptoms and pain come -- fibromyalgia. Knowledge and validation are so vital in dealing with this illness and being able to do the things you want or need to do. Beside medication and vitamin D, I practice reiki, EFT (tapping), meditation, self hypnosis, acupuncture and gentle stretching. I know I will have good days and bad days. Sometimes, I HAVE to get down to my parents, even if I can barely move and am stiff and in pain. Thankfully, my husband loves to drive! Doing the above methods, I am able to take the road trip.

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