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Restless Legs Syndrome

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Still tortured

kirash profile image

Still struggling. I have been taking magnesium powder and b complex vitamins. Also using a lot if magnesium oil. 50 sprays in morning and night - 10 under each arm, 10 on stomach, 10 on each leg. I am rarely getting to sleep before 3am sometimes 4 or 5am. Luckily I dont start work until 12.45.

I am on mediation for blood pressure, depression and anxiety. Betaloc (a beta blocker) quinapril, aspirin venlafaxine and bendrofluazide. From reading, betaloc and venlafaxine can exasperate restless legs. My doctor says he isn't touching the venlafaxine. I will ask about betaloc as he gave me that on fact that my heart rate was raised on the particular visit.

I am flying from New Zealand to Dublin on 21 July and I am dreading the flight. On the last long haul flight I really struggled. Doctor has given me some diazepam to try....not working. I have only been taking 1 x 2mg.

As you all know this is torture. The doctor has mentioned ropinirole but I am very reluctant to go onto any more meds. Has anyone got any more suggestions?

17 Replies

Hello!

My go-to thing on long hauls is compression stockings, but I read your other post and see you've already tried those. Can I ask what you've done on past flights? (I do long hauls at least twice a year, so I might have some more suggestions for you).

kirash profile image
kirash in reply to

Hi Sails. Thankyou for your reply. When I say I have tried compression socks, I tried a pair my husband had and they are more than likely too big. I was just last night looking on line to buy some for my trip. Do you use them when you aren't flying?

It has only been in the last year or so that my legs have become so bad. My last flight was a couple of years ago to Cuba and that the first flight on which I was so uncomfortable and quite distressed as I just could not get comfortable and was actually in torment. So hence why my apprehension around the next flight. After the last flight I actually thought I couldn't face a long flight again but this one is for a special family occasion. Should I get some compression socks which fit and try them out at home? Just interested why you maybe only use them on flights if they work.

in reply to kirash

You’re welcome 🙂

I use them when I’m not flying as well. They are the first things I put on when an attack strikes at night. It is the tightness these give that calms attacks (sometimes and depending on how intense the attack is). Yes, I recommend getting a pair to try.

Are you flying direct or will you have a layover? If a layover, how long for each leg/what order will the flights come in (longer flight first?)?

(I understand that the second question might be somewhat unusual to ask, but I promise that I have a point).

kirash profile image
kirash in reply to

4 hours then 2hour stop. 14 hrs then 2 hour stop. Then 7 hours to Dublin.

in reply to kirash

Ok. Use those layovers wisely (walk a lot if you can!). When I fly, I try and get layovers at big airports - the bigger the better - so I can get lots of walking in between gates. If I’m lucky I’ll tire myself out by the time I get to my next gate.

Though easier said than done, try to stay calm and think happy thoughts. Though so much easier said than done, try not to think about the “what-ifs” (what if my legs act up?, what if people stare?, what if no one understands?, etc.) that go along with RLS.

The key on flights is distraction!

Assuming you’ll have a TV screen to look at, use that as much as possible! Play games, watch movies, shows, etc. My husband (who does not have RLS, but I’ll include it anyway) measures flight lengths by what he can watch (I’m now proud to know that our long-haul flights are 3 movies and a couple sitcoms long😂). Hopefully you can get wrapped up in the stories. If not, make sure you bring stuff to do. My flight bag includes my crosswords and puzzle book, a novel, my cross-stitch, my mp3 player, and my magnetic backgammon game. When I’m not doing any of those, I watch my surroundings (who gets up, who sits down, what the attendants are doing, who is ordering what, etc.).

Make sure to get an aisle seat!

If you have an in-flight attack (God forbid) and end up doing calisthenics on the floor, just remember this if people stare: you will never see them again and vice versa!

I hope this helps somewhat!

Afterthought: plan what you will do on each flight. I don’t know about you, but I’ve noticed that attacks are most likely to strike when I’m not doing anything.

kirash profile image
kirash in reply to

Thankyou! As my legs play up every night I suppose I am expecting them to do so. I'm flying on emirates all the way. Wellington to Melbourne. Melbourne to Dubai. Dubai Dublin. Arrive about 2pm so good time for getting to accommodation, some fresh air, food and sleep.

I have paid to book my seats! Taking no chances. Would be a nightmare to be stuck at a window.

I'm going to take some inspirational talks and calming music on my phone! Once I get the compression socks I think I'm sorted.

Living in New Zealand any flight beyond Australia is long haul so I have flown in many but not with rls like it is now. We flew to Cuba a couple if years ago and it was agony. I vowed off flying ever again but....cant let this destroy my life.

Thanks for your help. Been very interesting.

in reply to kirash

You’re welcome!🙂

Yes, please try not to expect them to act up since that is the worst you can do. If they do, they do. I never thought I’d say this, but try not to let it get to you.

When an attack strikes:

I got a valuable piece of advice from another member on this site, and that is to pay attention to what you tell yourself during an attack.

My current dialogue while in the middle of an attack goes something like this: “#%@#$&!@#$%-&#” (translated into the nicest possible language, this means: “darn legs, why??? Can’t you just act normal for once?! Ugh, this is so awful! This shouldn’t be happening! What do you want from me??”)

Notice how I try to dictate how I want things to be (“this shouldn’t be happening” is trying to dictate how things should be). Unfortunately, the world does not work like that. We cannot dictate what will and will not happen at any given time.

The bottom line is “the more we stress about it, the worse it could possibly get”. Try to not stress during an attack (something I also thought I’d never say). It is next-to-impossibe I know, but please try.

I’ve heard good things about Emirates from my landlords (they fly them when going to visit their daughter in Australia). Dubai is a BIG airport, which is good news for you legs!🙂

in reply to kirash

Hello! I forgot to tell you why I fly long-haul so much. I live in Norway but am from the States, so I go home at least twice a year (spring/summer and Christmas).

kirash profile image
kirash in reply to

I did wonder.....!

in reply to kirash

Hi,

long flights for me too, not nice, I take 1g acetaminophen with codeine at a first sign and a slipping pill, 10 hrs latter, coffee and voila, landing.

cheers

B

Could you discuss with your GP replacing the aspirin with dipyridamole? Dipyridamole is also a blood thinner (I presume this is why you are taking aspirin). It operates on your adenosine levels which are also implicated in rls (in a complicated way I don’t understand fully - if you google dipyridamole and rls you can find the research). There is a study which found that rls sufferers who were prescribed dipyridamole experienced an improvement in their symptoms. I took it for a year and although it wasnt a silver bullet it did have beneficial effects and you would effectively be killing two birds with one stone.

I too find compression stockings useful, particularly if I apply a magnesium rub to the legs before I put them on, and they may be good for a long haul flight. I find distraction with a VERY absorbing activity - such as a computer game (unfortunately reading, tv and paper puzzles are insufficiently powerful) is quite effective and I can get up to two hours of relief following 20 minutes of computer game. Others on here have also observed this - it’s a good drug free resource.

Yes I find often at night when I sit down to read my legs start up. Have to stand at the kitchen bench with book on the bench and stretching my legs.

This blog is fantastic. Whilst I sleep a lot if you are awake and I get up in the morning to all your advice!!

I’ve never tried it but some people have mentioned that oddly nicotine gum can help. Also some of us find that caffeine can actually be calming. I used to take a flask up to bed, I don’t often need it so I’ve now switched to caffeine tablets as they’re easier. Good luck

Thankyou. Hmmm. Dont think caffeine works for me!!! Makes me more jittery

Lapsedrunner profile image
Lapsedrunner in reply to kirash

We’re all different. You’re bound to get some gems of information that are useful to you on this forum!!

Well, keep trying the Diazepam. it takes time with a small dose. it lingers in the body and build up when taken orally. I sympathize with your problems on ling flights.

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