Restless Legs Syndrome (RLS) Discussion Board

I am headed overseas next October and am already fretting about the plane ride. Last time I ended up physically ill from being awake all night, worried I was disturbing others, impossible to sit in my seat for any length of time, pacing etc. For me it is the inability to elevate my legs that creates my problems. At home by 4 pm I either have to be sitting with my legs elevated or moving around. Grateful to hear of any coping mechanisms I can try. Sleeping pills, anti anxiety meds don’t do the trick. I have had RLS since my 20s (now approaching 70) and cope pretty well at home but traveling is always a nightmare.

The first step is to immediately go to the airlines website with your reservation number and reserve an aisle seat. That gives you the option of getting up and walking around during the flight without bothering anyone and also allows you to stretch your legs by putting them in the aisle while you are seated. Next, ask your doctor for a small prescription of Carbidopa/Levodopa. This is a short acting dopamine med that you can take once you are on the plane and maybe mid-flight. You cannot use this med regularly because it is guaranteed to quickly cause augmentation, but you can use it occasionally without that happening. Also, many flight attendants are familiar with the issues that those of us with RLS face. If you need to go stand in the galley for a while, just let them know. The Foundation even has a Medic Alert card that you can use for this. Finally, prepare something that you really enjoy doing that requires mental concentration. An engrossing movie on your computer/phone, games like Sudoku, bridge or crosswords, etc. If you keep your mind engaged, the flight goes faster and your RLS will be less likely to cause a problem.

These are tricks that I learned after many years of overseas travel. At the end of my career, I was usually on one of these trips two weekends out of every month.

There is a push pedal foot rest thingee that some people use on planes. I have not, but have heard of others who say it lets them exercise while seated and keeps them from having to walk.

I take it that you have no medications that work? If you have not tried Sinemet (called that in the US, it is carbidopa/levadopa), it may be perfect for the flight. Oh! I see Steve said the same thing - great minds and all that!

When booking a seat for a flight I always book the very back seats if possible, these are at the toilets.
It means there is a little bit of an area available.
Also if up to do a bit of stretching or pacing (in a little circle) it means you are near your seat but not blocking the aisle which can become difficult when there are always trolleys going up and down and people heading for the bathrooms.
Being near the back makes it much easier even if they are considered the worse seats because of being near the toilets and because the seat backs don't move. Worth it even though I was on an 11 hour flight.

Also, I double up on my medications starting about an hour before the flight boarding time.

Thanks for the advice. Yes, I always reserve an aisle seat but had not thought of Levadopa. Will talk to my doctor about getting a short term prescription!

Just be careful to only take the Sinemet for flights, or similar "emergencies", and not to slip into the habit of taking it daily. It works so well you might be tempted to, and it will almost certainly lead to augmentation if you do. I've been taking it for years without problems because I only take it a couple times a week at most.

Beth, do you take any other DAs? Sinemet was my first, about 20 years ago and it was great until I augmented on it. Now I take .25 ropinerole and some low doses of opioids but thinking about plane trips still freak me out. From New Zealand all flights are long.

Hi yankiwi
sorry for the late reply!
No other DAs, just the occasional Sinemet. I don't think it would be useful like that if I was also taking a DA every day.

I agree, Sinemet would not be useful if taking a DA every day but it was great for occasional use. I'm trying to convince my sister to try it on long flights. She can cope otherwise but flying is hell for her.

Flights can be difficult. While waiting in the airport before boarding, I always walk as much as possible. You might try some compression socks in advance to see if they help. Definitely let the airline know of your condition. The last time I flew I was on Southwest, which, of course, does not have assigned seats. I told them at the gate and they made sure I got in an early boarding group which allowed me to get an aisle seat.Just knowing I'm not hemmed in helps.

JulHer1968 wrote:Flights can be difficult. While waiting in the airport before boarding, I always walk as much as possible. You might try some compression socks in advance to see if they help. Definitely let the airline know of your condition. The last time I flew I was on Southwest, which, of course, does not have assigned seats. I told them at the gate and they made sure I got in an early boarding group which allowed me to get an aisle seat.Just knowing I'm not hemmed in helps.

I sometimes feel guilty when I do this at Southwest...but I shouldn't. This is the "but you don't look sick" thing; I actually have heard people say things around me when I am standing in the early boarding line that imply some people who are in it that do not "deserve" to be. But, much better I get an aisle seat for my sanity as WELL as my seat mates'!

It's kind of like judging people who use handicap parking when a disability may not be visibly obvious. I am glad you do what you need to do for yourself.

JulHer1968 wrote:It's kind of like judging people who use handicap parking when a disability may not be visibly obvious. I am glad you do what you need to do for yourself.

Exactly!

Not sure about others, but some things have taken me longer to do (to take care of myself) than others. Nice to get there at some point .