Yesterday we went to visit my daughter who is working in Bath. We then decided to take her to the sea side for a change of scenery . I was in the passenger seat so i had alittle more leg room than in the back . My poor understanding mom was sat behind with my two daughters on the back seat with her. Obviously i could not have as much leg room as i needed because of my mom sat behind me . My legs spoilt the whole trip it was a nightmare, even tho i avoided sugar and ice creams are difficult to avoid at the sea side. It was obviously my legs panicking because of the lack of room i just do not know . I am even worse when we fly so any advice would be of help .
I miss my daughter so not travelling to see her is definitely not an option . I think RLS restricts us all of enough treats in our lives but it is not taking this away from me
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I love your last words! Good for you!
I do long-haul flights at least twice a year and do the following:
-I wear knee high support (compression) stockings
-I take my shoes off to give my feet room to breathe
-I try and keep my mind as busy as possible. I bring my cross-stitch, crossword book, novel, mp3, etc. When I'm not keeping busy with any of these, I tune into my surroundings as much as I can. In a plane that means watching the movements of others; in a car that means looking out the window at the scenery, cars, etc.
There is a game my family and I used to play when on long car trips. We would look at other cars' license plates and go through the alphabet in order (in other words, if we found a plate with "b" on it before we found one with "a", it wouldn't count).
I have tried the compression stocking before but they didnt make alot of difference. On our way home from Malta last September i resorted to drinking slimline tonic water but im not sure if it was the visits to the stewardess to buy more or a couple of visits to the loo that helped. We are definitely paying for extra leg room next time !.
I did try and keep busy in the car which helped for a short time and then eventually my partner had to find somewhere to safely stop. Thank you for your advice
Oh yes, they are nightmares, worse, they are real. I choose the train or bus or plane (not long trips though) as you can at least stand up. Otherwise, the car at times is the only means of transport and it is horrible. Good on you for doing lots of things, but often none of them work. Even stopping doesn't help unless it is a long stop. I am sorry, it seems suffering continues for all on RLS.
So true but i think it does help to stay positive . I know there are people who are so much worse than us but like my gp once told me ' yes thats true but your condition is yours and it causes just as many problems so never think its less important '
Do you drive, because, for me, I find that it really helps if I'm in the driving seat compared to being in the passenger seat? I think it's because you have to focus on your surroundings and the road much more. Also, it's all about the planning. Planning journeys whenever possible that coincide with your best time of day without and with your medication.
Thank you but i actually took my DA on the way home but it did not make much difference if i am honest. I think my legs were in full gear by then so they just thought sod that i am carrying on . Sorry sometimes i have to make a joke otherwise we would lose the plot
Do you take Iron Sulphate supplements? It's worked for quite a lot of people apparently. I've been on them for a few weeks now, not long enough to have an affect, I think. I think you have to take for at least 3 months to see any affect, hope it works for me.
I, too, understand your last words, but it might be that things get so bad, and you've run out of all options, that you have to change you diet drastically and 100% of the time (i.e. no treats, dairy, processed sugars, gluten, maybe even eggs, whatever), to see if that works. I know that sounds terrible, but so is RLS, isn't it? Not wanting to get you down, but I guess we all have to consider all options to either try to beat this 'evil' or at least cope with it as best as we can so we can continue to do or see the things we love.
I was prescribed ferrous sulphate and folic acid afew months ago and had bloods taken a couple of months ago and they said my levels were ok. I am seeing my gp this week so i am going to ask for my bloods to be taken again because i am thinking are my levels low .
I have already reduced my sugar intake which has made a vast difference. Believe me i do everything i should . I stopped taking amitriptyline because they worsened my condition.
Have you been fasting? I've had my bloodwork done a few times for iron and the first two times my doc said my level was fine, however, I asked for it to be done again and this time I decided to fast and the result was that this time the iron level was at the lower end of the 'normal' range that it should be, but he said for those with RLS it is worth taking the iron supplement to see if that helps. So, it might be worthwhile fasting before your blood is drawn. Also, I think it might be the case that for some people to get their iron levels back up you have to tale the supplements for quite a long time (at least 3 months if not more). Also did you take the iron sulphate with Vitamin C?
Hi, it does sound a nightmare and Sails advice is always good.
I like your attitude don't let this problem take things away from you.
Everybody's experience of RLS is different and you can fight with it or accept it to varying degrees. Sometimes it's good to accept things as they are, especially when there's nothing you can do to change it. Perhaps we can be over-accepting, when actually there is something we can do.
I say this because there is a possibility that you can change things, difficult to judge from.what you say.
For years I accepted my experience of RLS without thinking that there was anything to be done about it. Simply struggling with it makes it worse. It was, amazingly, only last year, after nearly 12 years of RLS medicine, that I learned of augmentation.
Here follows a lot of don't knows.
I don't know if you've heard of augmentation. If you have or haven't I don't know if you take medication for your RLS or not, what medication - - - and so on. So the rest is very presumptious.
Despite differences in people's experience, "text book" RLS occurs in the evening, it's a circadian condition. Perhaps when you were driving to or from the seaside it was in the evening but in any event if you look at the features of augmentation, it's described as
worsening of symptoms
symptoms happen earlier in the day
symptoms spread to other parts of the body (from just the legs)
the latency period (time between becoming motionless and symptoms starting) gets shorter.
It's just a thought, but if you are taking medication, it may be causing augmentation. If you're not on medication maybe things could be improved by starting.
I am taking pramipexole the lowest dose , i take gabapentin 1800mg a day and codeine 30mg with paractamol which are prescribed for chronic back pain . I began the pramipexole in November and have never taken more than 1 tablet as i augmented on Ropinirole due to my last gp increasing the dose too fast too soon
Parminter has I think offered some good tips for your trips. I reccognise that some people have problems travelling in plane or car having to keep still. I just thought you might be suffereing augmentation as I've never had a problem with RLS whilst travelling
Just a further point about augmentation.
It is NOT caused by increasing the dose too fast too soon. If it's going to happen, then it's going to happen. Apparently the reason for it, is not known.
Also, if you augmented on Ropinirole, then it's also likely that you'll augment on Pramipexole, party because the risk with Pramipexole is greater and also partly because as you;ve already augmented once, then it's likely again. The Pramipexole, then, is more likely to make your RLS wiorse rather than better.
If you wish to do this trip regularly - and of course you do - then it will be worth any outlay you make.
DIY versions include sitting stretched out on the back seat, lower legs on a child or your mum to help you stretch your feet up towards your knees as hard as possible in order to stretch the calves.
If you are supple enough, try sitting on your feet with rolled-up socks between calf and back of the thigh. This will give extreme pressure on the calves - it works for me, but I am very 'bendy'.
Combine these with heat on the calves and/or the thighs from hot-bottles or some other heating pad.
We get very inventive, but clever people have come up with devices that will do it for us.
Some of the devices, like the Relaxis Pad, are very expensive, but I think we must save money elsewhere in order to make life worth living.
When you travel by public means, get a letter from your doctor before you book, and explain the absolute necessity of the 'roomiest' seat you can get.
Thank you and will the air line really give me extra leg room with a note from my gp ? We were going to book for extra leg room but obviously at a cost ! . I will try some of the advice you have given tho and many thanks again x
They can at the least give you an aisle seat on the cross-aisle or bulkhead.
This is a medical condition, I do not see how they can refuse - but you need to get your booking in early, and try to choose the seat yourself.
I no longer take long trips, but I always choose an aisle seat at the back, so I can jump up and do stretching exercises in the space at the rear door.
I do this online, but your agent can certainly do it for you. It may cost a tiny bit more, but mostly it does not.
I go to the back because the plane fills up from the front.
I know it's not the most socially acceptable answer, but I've had relief at times from using deep heat on my legs and back before flying or driving any distance. If I haven't used it and my legs just even get a niggle, out comes the deep heat/liniment, and it does seem to distract the legs for a while. Otherwise, lots of breaks if driving and if flying, lots of standing if possible. When I flew from Australia to UK 10 years ago, every take off and most landings were an absolute nightmare. I don't know if it was the change in pressure? Anyway, pushing against the seat in front with all my might was the only way I could seem to get any relief but I swear if I'm doing the flight again at any time in the future, I'm going to dope myself up with opiates or whatever I can get my hands on. Good luck and keep the positive attitude!
For me, take-offs are the worst part for two reasons: 1. the vibrations they cause put me on alert for an attack 2. take-offs signal the "well, I'm officially trapped; there's no turning back now" moment.
I agree about the vibrations. One flight on a smaller plane was so bad I had to stand the whole way which was only an hour and the plane was not full so it was ok. I had an interesting talking with the air steward though about RL. Left her a lot more aware than before! I've had to stand on bus trips too for a couple of hours but at least there's room to do that. as my mum would have said...' ooh how we do suffer!'.
I am fine with the take offs , its the restriction that seems to start my rls. Im sure my legs go into panic mode and then they begin. I stood up for most of the journey from Malta but i think the looks were worse ! I honestly believe that people are not educated enough when it comes to rls. I hated the stares from passengers , looking at me as if i had gone mad. I felt like screaming ' dont you think i would sit down if i bloody could , so stop staring !!!!'.
I'm probably way out on this one! A psychotherapist once called me narcissistic. (I had to look up the spelling). I've always thought I'm a bit of an exhibitionist myself and to top it all, my second wife often accused me of overdramatising.
When I have an RLS episode, usually twitching, in public, I often exaggerate it and I think, I hope they have noticed this then they'll realise, I'm different. In fact, I'm special. They don't have an impressive sounding condition, Willis Eckbom Disease like me.
I don't know what kind if person that makes me, but in respect of RLS, I don't really give sh** what anyone thinks about my strange behaviour!
I definitely do not exaggerate my condition in public, if anything i try and hide it if i can. I suffer from chronic back pain and am even too proud to use a walking stick out in public because i would rather suffer in silence so to speak.
I'm not suggesting you exaggerate it, the point is, it's nothing to be ashamed of or embarrassed about. I am suggesting that it would help to change the way you think about it. There's no need to hide it.
You know why you're doing it, you know that it doesn't make you less of a person.
From past experience i definitely know most people do not matter. I know some people that use walking sticks incase they are seen by DWP and these make it so much more difficult to be taken seriously . This is why i keep my conditions to myself x
That's fine, there's no reason to feel bad about it either way. I'm lucky that I don't need a walking stick, but if I needed one, I wouldn't struggle not using it. Similarly, if I needed to do something to relieve RLS symptoms in public, I wouldn't struggle by trying to hide it.
Obviously, there are things which I wouldn't do in public, but generally speaking, I am not swayed by what I think others may be thinking of me.
It might be interesting sometime to go on a typical flight and find out how many passengers have RLS and are hiding it!
I can really commiserate with you. So many delightful outings and picnics have ended in the dreaded car journey home. I see someone else mentioned that when they were driving RLS did not affect them. I am the same. I suffer severe daily RLS in arms as well but when driving I have never had an attack. As Manerva says some things we just have to accept (although not too accepting if anything can be done). Going to see your daughter is probably worth the discomfort and I still love any outings even though I know I will suffer. I sometimes find that if cold air is directed on my legs in the car it really helps and seems to delay the onset of the dreaded wriggling. Take care
I agree about the cold air. I often roll my trouser legs up and put the fan on high just to get my legs cold. Being too warm often can trigger my legs in the first place!
I'm with you restlessstoz. Had this bloody curse for more than 50 years. Coolth definitely delays or prevents onset. Summer and winter I sleep (ha!) with a fan positioned at the foot of the bed, directed at my bare feet. It's worth the negative marital response. Also, I try to do without footwear whenever possible, as cooler feet are more comfortable eveningwise. I read an interesting comment by a U.S. sufferer, who said that cold feet only really works when you can feel the coldness seep through to the centre of your foot...surface cold doesn't fully cut it. I reckon this is correct.
When I'm on a long plane flight, I always bring an emergency supply of nicotine gum. I have never smoked but I tried nicotine on a hunch once and it eliminates the symptoms. Not good for sleeping because it will keep you awake but it is good on an emergency basis. Be careful, it is addictive!
I gave up smoking cigarettes over 2 years ago and stopped using a Vap last June so nicotine is definitely a no no for me but thank you and i am glad it works for you
I find taking 1/2 teaspoon (2 grams) of Kratom (buy online) 1/2 hour before traveling really calms my legs down. I can sympathize with you; without Kratom traveling distances by car, bus or plane is torture for me!!
You can ask for levadopa. Use it only on long car rides or airplane as you can augment very quickly. There are other things that might work over the counter like Hylands restful legs and Valerin and Restovin. I used to be able to use those items with success. Not anymore.
Maybe you could persuade your GP to prescribe an opioid such as tramadol or better still targinact which has been licensed in the EU for treatment of rls (I think there was an article in the BMJ about it recently). If you could get even one packet you could reserve them purely for use on these occasions (which I agree are torture) so that they could supplement your main treatment of pramipexole. Alternatively, could you consider halving your pramipexole tablet and using part of it prior to the car journey and the other part that evening? You would probably suffer that night with rls but it might be worth it not to have the symptoms on the journey.
On my journey to my current treatment, I have tried any number of different options and in the process have amassed a stash of supplementary medications that I keep for these situations.
I am seeing my gp in a couple of hours so i will chat to him and ask if he will do me a prescription . I weaned myself by choice from morphine 80mg so he knows i would only use the prescription for emergencies. Thank you
I would refer him to the article in the British Medical Journal - they seem to love that publication and it admirably illustrates the use of opioids in the treatment of rls.
I already take pramipexole so i do not really want another DA . I will ask my gp about the other ones you have said . I must admit tho that last May on my way home from Tenerife i was already on 40mg of morphine a day and i took 10mls of oramorph( liquid morphine) and it had no effect on my rls , but made it more difficult for me as i had to stand or walk . Thank you for your advice tho
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