What - if any - recommendations for flying?

The idea of being trapped in a plane with RLS is beginning to haunt me. Any tips/meds anyone could recommend please. 2 hour flight in 3 weeks, 3 hour one in December and heaven help me, South Africa in June!! The doctor gave me diazepam 2mg. I tested it out and spent half the night staggering around like a zombie with RLS then all morning in a daze.

I have 1mg neupro patches, 2mg ropinirole and 0.088mg pramipexole. Also a lisiniprol 10mg for high BP.

Although I know the neupro works, not sure about rest! When I say work it means that usually legs don't start until early evening! I never sit in an armchair in the evening and find upright dining type chairs or a stool better although not for long. Why is that? Hence I hardly sit down in the evening. Even displacement activities don't work anymore. I went to the pictures Sunday at 12.45 pm and struggled after 50 minutes!

Sometimes I get cramp too from trying to flex muscles.

So sick of it.

Sorry didn't mean to go on


11 Replies

  • Tell the stewardess immediately once you get on board..sometimes they

    can switch out a seat for you so you can get up and down easily. The

    crew will know what you are doing when they see you standing in a cubby

    area doing knee bends. A lady on here suggested for me to hold my butt

    cheeks together tight to help with that.. diazepam didn't work to half settle

    me ever..it was one of the first drugs that I was ever given. I walked around

    like a dope face and I still had RLS horrible..same with clonazepam.- I went

    on a space walk around the house... but it may work very well for you especially

    since you are on other dopamine medicines..I never had the combo.

    Anytime you are taking a BP medicine, you cannot skip a dose..or delay it.

    I can't sit in any one chair very long.. It bothers me and I feel stiff, just agitated

    from it.. I have watched movies laying on the floor..or on a mat on the floor..

    mostly when I am at home alone.. I do so much better sitting in a hard chair

    but there are certain circumstances that a couch or a chair with padding will

    be fine..Our bodies were never made to sit.. someone just decided to do that

    one day and everyone else started doing it.. I hate church pews..those are the

    very worst.. I don't know what else to suggest.. I told one woman to take a

    steamy romance or some exotic book so she had her mind elsewhere... I think

    that she stopped with the forum after that suggestion.. haha=) It might work..

    who knows..

    The cramping that you describe reminds me of children who didn't drink all

    day long in school and then they would come in the final part of the school

    day with pain in their legs and cramps especially when it was hot..they

    also had headaches..some felt dizzy..It's a fact that all of those symptoms

    can and probably do mean dehydration..drink, drink and drink some more

    water..it helps keep swelling of the legs down which is always happening..

    on very long flights..

    There will be plenty of others that will be up and to the bathroom many times.

    No one likes to be cramped up in a plane..I tend to fly business class..did

    first class just once..that was enough for me..

    I wish you the very best of luck...It's been very long since I took a flight that long.

    I share the same concerns as you do..=)

  • Make sure your flights are in the daytime, take small amounts of medication, do stretching and moderate excercise before..the temazepam may stop the anxiety prior to journey...you can also request the seats with extra legroom next to the emergency exit....the long flight, I would only do with stopovers I think...

  • With the help of HU, I managed to track down a previous post asking the same thing! Hopefully if you copy and paste this into the internet explorer address box, it will show the 21 responses. Best of luck!


  • That helps a ton. Thanks.!

  • Ok thank you

  • Thanks for your reply Yikes. I too lay on the floor if I am desperate to see something on the TV and kick and flex my legs. It doesn't stop the RLS but helps to manage it. I do think its odd how sitting in different chairs works. I also seem to sit forward - rather than relaxing back - I wonder if pressure on the thighs helps?

    I will see another doctor tomorrow and try the clonazepam. I also wondered about tramadol. I had a hip replacement a few years back and that was one of the things I was on. Also morphine - but think that was only a couple of days. No RLS!! It was amazing.

    Regarding cramps - I think you're right - more liquid.

    I have read the old responses to the question. Certainly got some useful tips.

    How about the power of prayer! Aah no, I think I tried that. Also offered the devil my soul but he said it was too jumpy!!

    Iceland in just over 2 weeks - 3 hour flight - but day time! Having said that I struggled on the last 20 minutes of 90 minute flight. Is it psychological? It's the trapped feeling.

    Has anyone had any RLS management training? There are pain management clinics! I have tried relaxing and trying to ignore it which means that I then jerk uncontrollably and it makes it worse. Lol.

    Another thing that interests me is how you guys can write stuff on here at night when legs are bad. I can't concentrate on anything at that point.

    Thanks for all the help.


  • I have a workstation in my kitchen that allows for me to stand or sit...

    I also have a sitting area in the den. I have this tiny, I do mean tiny pedal

    machine that can go under the desk that I would keep using. It doesn't

    take away rls entirely but it gives my legs something to do. Some bounce

    their legs or walk their legs or shake their legs..I have that dragon software

    that you speak, it types what you say but there are many days that I hate it.

    I have it trained to understand what I am saying but sometimes it comes out

    and says something that would embarrass me so much if it was a professional

    document..it has some problems with block writing but it can work casually

    for most things. I just have to re-read again before I send it.

  • Also going to SA in March and was wondering how to cope with 16 hr flight.

  • Hiya, went to Florida with Virgin last yr & they put me in the bulkhead seats with more legroom. It meant I could at least not worry about kicking another passenger in the back for 8 hours. I also did a tonne of leg stretching, walking, bouncing on toes etc to keep muscles from kicking off. This all worked beautifully on daylight flight over.

    Back was hell. I was too polite to move around as much as I needed to & as a result kept dropping off & jerking awake when my legs jerked which then cycled.

    I also took a Valium - one each way. But I'm reasonably sure the keeping moving every time the seat belts sign switched off was the thing which meant one way was fine and one way wasn't.

  • Hi I take resue it is a natural remedie I never thought it would work but it does I take 8mg of repinerole and 200 mg of tramodole a day I had had rls for 25years and always dreaded the thought of flying because I have panick attacks as we'll

  • I am flying from UK to Oregon on West Coast USA with a 2 hour layover in Newark - New York. Each leg of the journey is 7 hours. I have RLS 24/7 in arms and legs. We checked the internet for prices and then went to a travel agent who happily matched the prices. She also checked the seating and booked us the very back seats, including the aisle seat for me. (Bulk head seats were gone) This means we are near the toilets so we will look on that not as a nuisance but as a bonus :) But it also means that there is a little space near the galley area where I can walk. I don't have to climb over anyone to get out and I don't have to walk the length of the plane to get there. I step from my seat and can immediately go walkabout, even if it is in very small circles. And will be able to do stretches.

    My itinerary printout includes the seating booking for all 4 journeys so well dare anyone say my seating is not confirmed.

    I also had my valid membership card from the WED/RLS Foundation to show the travel agent that I was requesting specific seating because of a medical condition. And will use this card as necessary anywhere I can during the journey, for my own benefit. Does that sound selfish...... When it comes to RLS, you bet I will be selfish !!

    So with my easy access seating and my medication and a few extra cocodamol 30/500 I have done all I can and am much more hopeful now than I was pre booking.

    The same journey a few years ago had me in my seat, weeping and punching my legs.

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