Discussion in 'Fibromyalgia Main Forum' started by deserella, May 6, 2012.

  1. deserella

    deserella Member

    I have been reluctant to go on a trip with my husband and his family to visit his grandparents because I don't want to ruin for everyone because of my health problems. My husband really wants me to go so I finally caved in said yes and he booked me a flight. Including a delay in Dallas it's a 6 hour trip from Salt Lake C ity to SOuth Carolina.

    Any suggestions on how to manage the illness when traveling?
  2. ghosalb

    ghosalb New Member

    depending on how sick you are, this blog has some information on effect of travelling on ME/CFS patients. Read the comments also.
    wishing you safe trip
  3. Kittyweird

    Kittyweird New Member

    Traveling is so difficult for fibro people! Here are some things I do that help.
    I do not go into the TSA cancer box. I opt for the pat down. I explain that I have Fibro & that they need to be gentle with me.
    I carry a stainless steel water bottle that I fill at a water fountain in the boarding area, as it is important to stay hydrated. I take 1/2 a Dramamine tablet & a ginger capsule, as I get motion sickness. I take a neck pillow with me so that my head/neck is supported & use a cane to help me walk distances & support my body.
    I always let my hosts know not to plan anything big for the day I arrive, as I need time to recover from travel.
    I ask for a comforter to fold under me when I sleep & extra pillows.
    Suitcases with wheels are a must. I also try to travel with carry on only as checking bags takes up more energy to retrieve & carry.

  4. deepak

    deepak Member

    Hey Bala ,

    Are you in india too ?

  5. deserella

    deserella Member

    Thanks so much for the good advice
  6. ghosalb

    ghosalb New Member

    I am in NY, USA right now. Planning to return to India (Jamshedpur)after 35 years because it is becoming difficult to deal with this desease alone. Trying to find a doctor in India who will give me Rituximab.
    We have to start a group in INDIA about this. I do read your posts.
  7. deepak

    deepak Member

    What is ritumixab ? is it for CFS ?

    But in india not much awareness at all about all these things ?

    I am thinking maybe to go to usa and take the peptide shots Mikie took.

  8. ghosalb

    ghosalb New Member

    Deepak - so far Rituximab (read Norwaygian paper in this blog) has shown the most promising results for CFS. It is available in India. Have to find a doctor who is brave enough to try it. Take that Norwaygian paper to your doctor and try to convince him. I will keep you posted if I find one in India.
    Good luck
  9. pogwarden

    pogwarden New Member

    Greetings Deserella. Travel is incredibly tough for me also. I've been fighting CFS and other aches and pains from old injuries.

    Some good tips have been posted. For me, planning ahead is the key. Making sure I have all my meds and supplies together, getting refills as needed. Making sure the required paperwork is together and ready to go. Getting my packing done a day early, so that on the day of the trip the only thing I need to worry about is getting to the airport and getting on the plane. As mentioned above, letting the airline know you need to pre-board is really a good thing.

    My wife and I sit in the very back of the plane. Since planes are so full now a days, sitting in the back gives us the best chance of sitting the two of us, in three seats. The "middle seats" tend to fill from the front backward.

    I know the feeling of spoiling the trip for others as well. Our last trip together from Oregon to Wyoming to see my daughter and her family was a disaster. By the time I got to the hotel I was in so much pain and so fatigued I become quite grumpy. Then I tried to do too much the first day, resulting in me spending the next five days in the hotel room, leaving my wife to visit and do things alone.

    This last February we had planned another trip to see our newly born third grandbaby. I still felt so guilty about how the last trip had gone the anxiety started building. Just minutes before we were to leave for the airport the anxiety became to much for me and I collapsed, ruining that trip. I did make sure my wife went on ahead the next day, but still....

    Over the last several years, we have come to some what of an agreement in that my wife (of 31 years and a wonderful, supportive person....I must say I married very well. My wife on the other hand, not so much) is prepared to do some things solo. If I cant leave the hotel room, I dont expect her to stay cooped up as well. I've learned save my strength for what we both consider the important events we want to see or do.

    Granted, we both would prefer to do everything together, but with the understanding I most likely wont be able to everything, the vacation is better.

    Now that I've rambled on and on, my thought would be to work out a similar arrangement with your travelling companions. Its OK if you stay behind while they go out. They dont have to have guilt over leaving you behind and they certainly dont need to not do anything to stay at your side. With that understanding, everyone should have a good time, including yourself. You wont need to feel guilty about holding anyone back.

    Anyway, just my thoughts.


  10. GeminiMoon

    GeminiMoon Member

    I take about 10-12 trips per year (business & pleasure) and am sure to bring all my supplements with me. I pack extra meds also and am sure to take melatonin a few days before, during and after my trip. I have taken many homeopathic supplements and meds in my purse and have never had any problems in security. Then, I pack extra in suitcase.
    I take a few books with me, order myself a Starbucks latte and sit back and enjoy the extra time reading.
    I get fatigued often, but I won't give up travel. I love it too much!
    [This Message was Edited on 05/09/2012]
  11. FaithHopeCure

    FaithHopeCure New Member

    I have been wanting to respond to this, but have not been able to find the words that would describe how awful traveling has become for me. It gets worse the older I get. Whether it is flying or driving long distances. It does not matter whether I am going to visit family/friends or going on a vacation. If i am going to a hotel I always schedule a massage which helps tremdously but I wish I didn't have to spend the extra money on a fancy message therapists.

    I am not sure why traveling is sooooo stressful on our bodies. I suppose the busyness of the airport and sitting for a long time in one spot creates muscle stiffness. Although, recently we upgraded to first class because it was a great price and that helped out a lot! Being able to stretch out the legs and recline all they back was a luxury! I still needed a massage the next day at the hotel.

    My husband loves to travel and we have another vacation coming up memorial day week. I will be doing a lot of pleasurable reading and will try to keep my mind and spirit in a happy place! Hopefully this vacation I won't be so nauseated from pain or in tears because of pain.

    I have learned to breathe deeply and think happy thoughts and I do bounce back more quickly.....
    [This Message was Edited on 05/11/2012]
  12. ILoveGreen

    ILoveGreen New Member

    I've travelled light and travelled full-on with all the comforts of home with me. I believe there is a happy medium, depending on your destination and your comfort level with your host.

    Personally, if I were you and hadn't travelled in awhile, I'd bring whatever I thought I needed to be comfy: Favorite pillow, heating pad, ice packs, etc. Checking a bag is no big deal. Trying to fit everything into a carry-on is, especially with TSA regulations. When you check a bag you don't need to worry about complying with TSA regulations and 4 oz. bottles of fluids and such. You can bring your body lotion (any size bottle is what I'm saying) if you want. Just place it in a ziploc in case it leaks and you're good to go. I also like to bring a "LeSac" expandable nylon duffle in case I shop or somehow manage to bring back more than I came with.

    As far as special items for personal comfort, I would put earplugs at the very top of my list. Better to be prepared than not. Also, may I suggest that you request bulkhead seating? The benefit of the extra legroom far exceeds the lack of under-the-seat storage you lose if legroom is important to you.

    I would try not to worry too much about the 6-hr flight and layover. Rather, look at it as an opportunity to stretch your legs in Dallas. Hopefully you will be able to deplane and walk around a bit, perhaps have a bite to eat and maybe get a chair massage! Most of all, enjoy your journey and have a nice visit in N.C.! Bon Voyage!
  13. deserella

    deserella Member

    Thanks for the suggestions. I'm going to bring my favorite memory foam pillow and I also think a pad for a mattress because the mattress we are sleeping on is old. Any suggestions on a comfy pad I could bring that would work for traveling?

    I get really bad tension migraine headaches when My neck and shoulders get stiff. Usually happens when I have my neck in a position for too long. I've noticed that heat packs work better than ice to relax the muscles and prevent a headache. Does anyone know of a battery operated heating pad I could use on the plane? I think if I have heat on my neck/shoulders and stretch every hour I can prevent a bad headache.
  14. zenouchy

    zenouchy Member

    Some of these might be repeats, but I'll mention what I think is the most important. Bring plenty of healthy food with you (Important to keep blood sugar levels up and eat what your body needs) and ***buy lots of extra bottled water in the airport to have on your flights***. I had an 8-hour flight where the airlines ran out of water halfway through the flight. Hard to believe isn't it? I came prepared with extra water "just in case" never thinking this could happen and then it did. Plus, when the stewardesses come around, they give you the tiniest cups of water and only stop by once in awhile. Hydration is key.

    Also, if you have a long flight, for some people with fibro (this is me or I am in lots of pain), I get up a move for 5 or 10 minutes every hour on a long flight. My muscles tense up terribly otherwise. It might help to get up and do some neck stretches at that time to avoid a terrible migraine.

    Dark masks can be very helpful too when you want to take a nap and it's bright out. Other than that, ask for help for what you need guilt-free! You deserve a great trip. Enjoy!

    Big hugs,

  15. sunflowergirl

    sunflowergirl Well-Known Member

    I'm dreading a flight that I know I need to make. It's only 2 hrs. but I get so wiped out from pain and everything that I've been putting it off too long.

    About the battery operated heat.....I bought a small unit from Q Fiber....look it up online. It's pricey and works OK....just not like a heated rice sock....but it's better than nothing. I was having troubles at first, talked to a rep about it and he said they recommend using rechargable batteries instead of regular since it zaps so much energy. It velcroes around my waist.

    I've also taken my rice sock placed inside a fresh clean sock, and asked the flight attendants to heat it up for me. If they're not too busy they will do this.
    If an ice pack helps buy one and ask them to put fresh ice cubes in it. I find alternating heat and ice helps me.

    I also bring my own little pillow and a sweater coat that I save for my travels. It's makes a great blanket and I can pull it over my head as I nap. It's comforting and I refuse to use anything like a blanket that the airline would supply.....ewwwww!

    Great idea about bringing your own water also. I guess they do run out of whatever on board.

    My absolute WORST HORROR travel story......years ago we were flying back from Acapulco, the flight got moved to a different city and it went downhill after that. I was stuck on the aisle seat (the best part of the story) next to two young men. Did I mention it was MEXICANA airlines. Around 5 the food came.....very smelly mexican food which I do love but this was awful. After everyone ate, they turned down the lights so everyone would sleep. Crying babies, people snoring, the smell of the food lingered forever, and the plane was packed so no other place for me to sit. The person in front of me put her seat all the way down, refused to bring it up a little and I felt trapped and claustrophobic. I stood the entire flight from Mexico City to L.A. for 5 hrs. I thought I was in hell.
  16. deserella

    deserella Member

    That's awful. Flying with all the post 9/11 regulations is stressful enough!

    I had a really bad flying experience too the last time I flew. I was going to Hawaii with my brothers, my parents had gone a few days ahead and would be picking us up in Maui. Our plane didn't work in Salt Lake so we had to wait forever and then in L.A. the plane broke again and we waited for hours. My brother has claustrophobia issues so he had taken a Xanax to calm him down for the flight, but we didn't leave for a a long time and when we were ready to board hewas too out of it to help me with my bags! When we got to Honolulu we were so late that we missed the last flight of the night to Maui. The airlines sent us to the wrong hotel, finally we got to the right hotel and the room on the top floor had no air conditioning . The next day when we descending into Maui all 3 of us all started clapping for joy that we finally made it! I was really wiped out and sore from sitting in one position for 5 hours and lifting heavy bags, but at least I had a beautiful scenery to relax in.

    I'm determined to make the trip go smoothly and make myself as comfortable as possible. I really appreciate everyone's advice.
  17. deserella

    deserella Member

    I wanted to report that my trip went well THANKS to all of the suggestions. I didn't come home and have a big crash. I thought I'd write down what helped me for any future travelers who are wondering what to do.


    First thing I did was get ear tubes because I wasn't going to deal with horrible ear pain that i usually get from altitude changes. That was the last thing I needed to have on top of all my other pain issues! I pretty much begged the ENT to put them in for me! I had a separate flight from my hubby so I made him take my heavy luggage. If I were traveling alone I think it might be worth the $25 not to deal with tons of luggage. When they began to board I didn't stand in line and got on last so i didn't waste energy. I reserved an isle seat because you can stretch your leg out into the isle and I knew I would be getting up to stretch every hour or so. Right before the flight I put menthol pain patches on areas I knew were prone to soreness and I took a muscle relaxant right before the flight because I knew being in one position for that long would stress my muscles. I brought a neck pillow and I took a empty water bottle as suggested and filled it up after security checks. My mom lent me here expensive BOSS headphones- even with no music they really muted out the screaming baby behind me.

    My husband talked to his grandparents whom we were to stay with and gave them the heads up on my health condition, and they were all very thoughtful and understanding when I had to stay behind and rest while they went out.
    I made sure to meditate every day anywhere from 5-15 minutes since I knew being around in-laws might get a bit stressful. Relaxing music on my I-
    pod came in handy in the car when my in-laws wouldn't stop bragging about all their other grand kids wonderfulness & accomplishments. (I know they didn't mean to hurt my feelings I'm just sensitive because I haven't been able to do all I wanted with school and such due to cfs). We visited a lot of different families I had never met and I hate feeling like a looser because I don't do a whole lot in the eyes of people who don't understand CFS. If uncomfortable conversations came up instead of getting anxious I tried to quietly step out and go read or play the piano.

    I was so worried about this trip, but coming home and not sleeping for 3 days straight has given me the confidence that I can have CFS and still Travel. We all just have to tweak it a bit to make it CFS & FM friendly :)

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