Flying

[pab628]

I will be taking a somewhat lengthy plane trip soon and would like any tips on what helps keep WED from flaring up. I have flown before, the longest period being 3 1/2 hours and did not experience too much trouble. However, one leg of my trip will be a little over 5 hours with an hour layover and then another two hours (approximately). What do you do for longer plane trips?

[Polar Bear]

pab628 - I have just completed organising my long long air trip for May.
Are you a member of the WED Foundation? If so you will have a Membership card which provides your name and membership number and details of how the symptoms of the disease affect us. The back of the card states ""Willis-Ekbom Disease Special Accommodations"" and requests that consideration is given to permitting aisle seats and allowing us to walk when it is possible, to remain standing, and saying that ""Assistance in meeting the health needs of those with WED/RLS is greatly appreciated".

Alternatively, perhaps your doctor would provide you with a letter.

With regards to my journey. I checked flights and prices on the internet and then went to a local Travel Agent. The local Travel Agent matched to internet price.
But...... she also brought up the lay out of the plane and we chose seats for 4 journeys. We chose aisle seats at the very back. This was near the toilets... but also it is where there is a little area where it is possible to go little walkabout circles.
I could have booked on line and booked seats on line.... but .... I wanted to use someone who will keep it sorted, will make sure that if flights are changed that I still have suitable seating. She took a photocopy of my WED Membership Card.
My flight arrangements are printed out together with my booked seating for each journey.

My journey is from UK to Newark, New Jersey to West Coast USA. Each journey is around 7.5 hours.
The return journey is the same - excepting we have a connection layover of 8 hours !!
The journey is a total of around 18 hours one way , and 22 hours on the return and I plan on using whatever it takes to make it as easy as possible.

Any suggestions that you make have yourself, I'll be glad to hear


My normal medication is ropinerole and Tramadol with a30/500 Cocodamol in the evening.
I plan on using a little extra ropinerole and extra Codeine as necessary, and walking as and when needed.

[Polar Bear]

Well, just to update on my long haul flights.

It went really well... Not a symptom did I have !!

My meds were kept strictly on time and with a little extra 'for luck'. And then a little extra extra in reserve in case of desperation.
All clothing was loose and comfy, shoes were loose and comfy and could be kicked off.
Memory foam neck support proved its worth. Crossword book, sudoko, kindle tablet. And 60 movies to choose from on the aircraft screen.
The little area at the galley/toilet area was never going to have been of any use if walkies had been needed. Indeed I can't see how walkies would ever have been possible .... the aisle was full of folks seeking the bathroom, then it had trollies with foodstuffs.
One guy had to get onto his feet because of cramp and he was totally blocking the smooth running of the flight attendant duties. Not one inch was there to spare.

I cannot believe how well I managed to get through the 4 long flights.
Well..... apart from the fact that I was indeed self medicating as I felt appropriate

[badnights]

Good stuff PB. I just made it to PEI and back - lots of long layovers because I was flying on points. The Toronto-Edmonton leg is 4 hours, and is the worst, especially because I ended up doing it at night. Oddly, it wasn't going east that was the problem, it was the flight home, probably because I was so bagged by then. The WED started in on that 4-hour leg, after I had fallen into a deep sleep for about 15 minutes, and it just kept on and on until about an hour before we landed. I got another 20 minutes of sleep, then the noise and activity associated with landing prep interfered.

I always get aisle seats. If they screw up and change my seat to a window, as they did on two of the 7 flights I took on this trip, I make sure I sort that out when getting my boarding pass. I am going to ask my doctor for a letter saying I need an aisle, because it was touch and go for one of the flights whether I would be able to change it.

I took my first evening dose of medication early before leaving on the first leg of the return flight, because I could tell it was going to be bad. Between the first and second legs I had a long layover from 700 til 1100 PM, so I timed my second evening dose for 900PM so it would be kicked in by the time I got on the plane.

Usually that works, but I was running under very little sleep and coming off a gluten challenge which may have exacerbated my symptoms. When I awoke on the plane with symptoms after my 15-minute nap, I should have taken a levo-carbidopa, which acts within 15 minutes, and usually (about 80% of the time I guess) takes care of whatever is happening, as long as I don't indulge too often. (I use it 2 or 3 times per month, rarely more). But this time I forgot about it, for some obscure reason.

Since I'm lucky enough to be small and bendy, I spent a lot of time standing up facing the back of my seat, leaning forward onto the headrest. Sometimes with one or the other knee on the seat for a rest. When the aisle was clear, I moved out into the aisle a bit. I read my tablet standing up like that.

I also make use of the bathroom line-ups. I go and join a lineup. I always have to pee by the time I get in anyway. Just standing in the lineup helps.

Having a short-acting med for situations like that can be a life-saver. Short-acting opioids would be nice. The levo-carbidopa is fine as long as you respect the dangers. (augmentation if used too frequently.)

[Polar Bear]

Oh badnights, that all sounds one difficult journey - 7 flights !!
My long haul journey of about 5 years ago was like that.. and I swore never again would I be insufficiently medicated.

You say you timed your meds..... This year with regard to the journey I was very careful that meds were taken on time... but no way was I going to rely on that alone and I reinforced them with 30/500 cocodamol because each of the 4 journeys was at least 7 hours and one layover was 8 hours.

Lucky you to be small and bendy, I'm average height and pretty bendy for my age (65) given that I have some osteoarthritis but also have to admit to carrying an extra lb or 2, or 3. It must have been pretty bad to have to be standing upright at your seat, and it still would not have allowed for sufficient movement .... thing is, there just isn't any room anywhere to go stand and do walking on the spot.
Yes, always an aisle seat... and right beside the toilets for convenience -there's a joke there somewhere Convenient to stand up cos there's always folks queuing.

Our flight was pretty bumpy and seat belts on most of the time. Flight attendant told me to sit down... I was only going to the loo and went ahead anyway, she'd have had to rugby tackle me to stop me. Isn't it a case of any opportunity at all to get the legs stretched.

I'm sorry all the flights weren't easy and now that you are home you can get back to your normal routine.
You did it, you made it.

[ViewsAskew]

I felt for both of you just reading the posts. I guess the good news is that the flights always end, lol.

Imagine being stuck on flights endlessly.....like the movie Ground Hog Day, where it keeps repeating. But, on airplanes so you never got off and the flights never ended....

I just shivered at the thought.

[EeFall]

Before I realized what RLS was, I thought I was just fidgety, I was on a red-eye flight and I spent most of the flight walking up and down the aisle. The funny thing was I was not alone, another guy was doing the same thing. He walked the front of economy class and I walked the back and once in awhile we would meet in the middle. No food service or it would have been bad and most everyone was sleeping.

[badnights]

I just realized on this trip that they can't MAKE you sit down even when the turbulence light is on - d-uh, I mean I knew that, but I never really thought about it before. They are required by law (or policy?) to request that you sit down, but if you don't, they won't do anything more about it, other than perhaps to ask you again. There may be things people can do to you later (forbid you to fly with them again?) but at that point you should be able to get a letter from a doctor defending your need to stand. It would be nice to know one's rights in that regard.

[badnights]

Yes, always an aisle seat...

The very worst flight I had was a short one (thank God!). My booked flight was unacceptably delayed (I was going to miss an important appointment), so I got onto another airline's flight at the last minute. All that was available was a middle seat. The flight was about 2 hr.

It was hell, hell. I wish I understood why it's worse to be trapped. It makes me sound like a loony-tunes, to say I can't stand to be trapped, but really, the WED is worse when I'm blocked off - confinement actually makes it worse. You'd think this would be something a person could control with willpower, and certainly there are creative ways to deal with it (mentally) but it's not controllable, in the sense that you can't actually gain control of it and stop it. It's extreme and obnoxious and needs dealing with constantly, the whole time you're confined, it's not as if you can "calm" your mind and have it go away.

The girl in the aisle seat fell asleep, and eventually I stood up in my seat and climbed over her without waking her. Lol. But eventually I had to return, and there was no relaxation that whole flight, it was one continual struggle to stop from going insane.

[EeFall]

It is strange how being confined to a back seat of a car or on a plane seems to intensify the symptoms.

[Polar Bear]

I did not know that you could not be made to be seated when on an aircraft !!

[EeFall]

I did not know that you could not be made to be seated when on an aircraft !!

My wife and I were on a flight and eventually got up and moved to other seats. This man with his 2 incorrigible children of around 6 or 8 years old would not lift a finger to control them at all. We were in the back of the plane and we had seats facing each other. One of the little brats kept kicking my wife. The guy, father (I assumed) wouldn't even respond to me or the crew except with flippant remarks. The pilot even came back to talk to him about his kids. They were out of control running up and down the aisles, screaming, truly like watching little devils. When we disembarked police were waiting, they handcuffed the man and escorted him away and the kids were taken by social workers, or so they seemed.

We of course never knew what happened but I think when you don't even obey the pilot you are in deep trouble. It also could be that they investigated him while in flight and found out something about him, don't know but never want to be in that situation again.

[Polar Bear]

I wouldn't have liked to have been present in this situation..... especially if my husband had been with me..... hubby is not well known for his patience !!
Dreadful situation.

[ViewsAskew]

My husband and I were on a business trip - the event was held in Las Vegas, Nevada in the US. I don't remember all the details, but we had multiple delays, maybe had to change flights and our 6 PM flight didn't leave until the next morning. When we got on the plane, it was packed. My husband and I were both in aisle seats across from each other, his one row behind mine, so he was ahead of me when he sat down. There was a mother and father and toddler - seated on the father's lap. When hubby sat down, the father said, "I just want to apologize in advance."

The parents tried, but that poor child screamed the ENTIRE flight. 4 hours of screaming. Non stop is not always a good thing when it comes to flights .

I've never flown without earplugs since. Hubby has an ipod, but it didn't do all that much as the child was 1 foot away from him.

[Yankiwi]

I live in New Zealand and have made many long flights -- all flights out of here are long! On overnight flights I take a sleeping pill, the only time I ever take one. I walk around a lot during the flight. I've told the attendants I have RLS and they usually understand. I've taken a half a Sinemet when my legs really act up but now that I'm on ropinerol I don't have any more Sinemet. I'm going to ask my GP for Tramadol for short term problems such as flights, movies, long car rides etc.