I have restless legs syndrome and am flying 12 hours next week with a 2 year old. I hope she will sleep during the flight as it will be over night but I know it could likely be on me which means I cannot move! Nightmare when it’s all your want/need to do. Does anyone have any tips on how I can relieve the pain without moving too much? I have got a little foot massager roller that I can put under my foot but it’s a bit fiddly and won’t solve the issue.
Eugh, I’m going to just have to get through it and deal with it. It’s just so upsetting and feels like forever when you’re in it.
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Monks90
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I forgot to say, I’m not on medication. I had a bad experience with a doctor before where they didn’t take me seriously and asked what I wanted them to prescribe, I didn’t have a clue and wanted to be advised. I will go back to the doctor but won’t have time before our flight on Monday.
I was in a similar situation last February and had hellish long haul flights to and from Thailand . My RLS was nightmarish for the whole time and I was in great distress. On returning I took Sue's advice and got a Ropinirol prescription just to be used for such occasions. Since then, (the best part of a year) I have taken one tablet on 3 occasions and it has worked perfectly each time. Having read about all the negative experiences with Ropinirol I was reluctant to take it at all but until I find an alternative will continue to use it like this. My RLS is severe when I get it but I don't have it every night so I'd like to find something that I don't have to take every night but can take if I need to. My doctor was reluctant to prescribe Gabapentin and to be honest I'd rather not take it either. I need to find time to get back to the doc and see if any of the alternatives mentioned to me on here are available to me. If you can get some Ropinirol before your flight i would definitely take that and avoid hours of agony.
What a shame you asked so late as the best thing would be some medicine. Any way you could get an emergency visit or telemedicine call before then. If so Ask for just enough ropinirole or pramipexole for the flight. You don't want to take it for longer than that because it will lead to augmentation which believe me you don't want. But it will definitely stop your RLS for the flight.
Otherwise you are in trouble. You can buy some Co-codamol which is OTC and take 2 of them but unless your RLS is very very mild it won't work.
When you get back post again and we can give you lots of advice including non-medicines to help with you RLS.
Monks, Have you had recent full panel, morning fasting iron blood tests to include serum ferritin?
RLS is linked to low brain iron.
You can have severe iron deficiency without anaemia but UK GPs are unaware of this or the link to RLS.
You could pay for a private iron infusion (£800) at The Iron Clinic in London and Manchester, but that can take up to 6 weeks to take effect.
In the meantime, for the flight, you could ask for 30mg codeine. Low dose opioids are very effective for RLS.
And start learning ALL you can about RLS. Start with RLS-UK website, particularly Useful resources - Iron therapy.
Make sure you aren't taking trigger meds like anti depressants or sedating anti histamines.
RLS first line treatment now is iron therapy.If your TSAT is below 48% you can start taking oral iron pills now. Look at the iron infusion page on the website.
And NEVER let them prescribe dopamine agonists ( Ropinirole, Pramipexole or Neupro). UK is a decade behind best practice as set out in the Mayo Clinic Algorithm and the new AASM guidance and RLS-UK follows these.
PS I note that some websites and Sue recommend using dopamine agonists just for the flight. I personally don't recommend this because of my personal loathing for these drugs. But I accept they do work for one off occasions. Just don't ever use them long term as they lead to drug induced worsening.
I'd just add that, when I first started taking Ropinirole, even at a tiny 0.25mg dose, I had several days where I almost couldn't move while my body adjusted. So for that reason also, I don't think it's a short term solution either.
I hope it's not a long flight. Hopefully your toddler might sleep while you walk around if things get bad.
It’s 12 hours 😭 but I’ve done it before and I will get through it, it’s just not fun. Not in the slightest. But I feel a bit of hope now taking the codeine as a one off and empowered to do something about it after as well.
each person can react differently . I took ropinirole starting at 0.25mg / day and the result was positive 100% first night.
So if I had been in this flying situation it would have probably worked perfectly. I augmented from about 1 mg ( didn’t realise that was the issue till 1.5 mg about 8 mths later ) and weaned off pretty easily in due course to 275 mg Pregabalin / day which is reasonably effective these days
Taking ropinirole in my instance as a one day fix such as this case might work
Just goes to show we react differently The power of 0.25mg of Ropinirole tho shouldn’t be underestimated. I was shocked by its immediate impact . Don’t stay on it despite its “wonder drug” style early impact for all the reasons highlighted by other posters here
Excellent! The codeine should help- take one about an hour before your RLS usually 'kicks off'. It may wear off after 5 or 6 hours, but at least it will cover you for a good chunk of the flight. Solpadeine max has 12mg codeine so you could also use that. The Mayo algorithm allows codeine doses of up to 60mg a day so it will be fine to take one 6 hours after the first codeine for the flight. When you're back, start to become an RLS expert. I'll bet you will respond brilliantly to iron therapy via ferrous bisglycinate 65mg at night or iron infusion.Good luck.
I find caffeine tablets work really fast for me . Just double checking , no middle east destination involved? Codiene , Abu Dhabi , Dubai etc don't mix 👮♀️
Caffeine can help some but can also make RLS worse for some. Unless you try it before you go to see which way it affects you, I wouldn't try it on the trip.
Yes but it has a lot less codeine. 8 mg and you can only take 2 of them or you will have too much paracetamol. So you could take 2 as the 30 mg starts to wear off which unfortunately on a 12 hour flight it will - usually after about 4 to 6 hours. I would suggest not taking it until 15 minutes before your 2 year old is likely to go to sleep as I am sure she will be interested in everything that is going on for awhile.
If you belong to the Restless Legs Syndrome Foundation, download the Restless Legs Syndrome Special Accommodations Card to give to the flight attendant. You can join for $40 even if you don't live in the US and it is well worth it. RLS-UK also has a medical alert card available to members for things like flights. Otherwise be sure to talk to the flight attendant and explain that you will be walking a lot
that’s good to know, there really is a lot to know! Thank you so much for all of your information below too. I’m going to get clued up. Thankfully it’s been liveable for the past 20+ years but there are sometimes you just get totally fed up and when it gets really bad.
I was going to wait until you got back to give you advice on how to control your RLS but since others have chimmed it here it is.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin).
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
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