RLS flying

[Barrylegs]

Hi, I am due to fly to Canada soon I have RLS, and I have to sit on plane for 9 hours, legs and arms on the move, any ideals how to help me.

[Happyfriday123]

You can do this for a minute it it is too strong: stand on one foot and shake the other leg as fast as possible (in the same way as you would shake your hand if there is still water on it…sorry, hard to explain 😂). This is a quick fix for me. But the thing that l helped me much better on flights were dopamine agonists.

[SueJohnson in reply to Happyfriday123]

Are you still on a dopamine agonist?

[Happyfriday123 in reply to SueJohnson]

Yes, unfortunately. But I’m trying super hard to get rid of them. I am trying almost everything, at the moment I’m on celery juicing and cold bathing 🤪

[SueJohnson in reply to Happyfriday123]

What are you taking and how much?

[Happyfriday123 in reply to SueJohnson]

I am taking Pramipexole/Sifrol 0.125 in the evening. This seems as not much. But I react super sensitive on just this small amount. I started in 2015 but with only 1/3 of the amount and not every day. As time went by I had to take more and now I take it every night. And unfortunately, augmentation has been sneaking in recently.

[SueJohnson in reply to Happyfriday123]

Luckily that is a low amount. I would try reducing by 1/3 every couple of weeks recognizing that it won't be fun but will be worth it in the end. A low dose opioid would help while you are getting off it. And I would start taking gabapentin now as it takes 3 weeks to be effective although it won't help much until you are off Pramipexole for several weeks. Beginning dose is usually 300 mg gabapentin or 100 mg gabapentin if you are over the age of 65. Once you are off Pramipexole increase by 100 mg every few days until you find the dose that controls your symptoms. Take it 1-2 hours before bedtime. 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. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will lessen. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily" It is important that you check out the Mayo Clinic Updated Algorithm on RLS if you haven't already, which will tell you everything you want to know including about its treatment and refer your doctor to it at

Https://mayoclinicproceedings.org/a... Have you had your ferritin checked? If so, what was it? What other medicines are you on?

[Happyfriday123 in reply to SueJohnson]

Thank you. I will talk to my doctor about it. Ferritin is checked and ok. I don’t take other pills medicine.

[SueJohnson in reply to Happyfriday123]

Do you know what your ferritin is? If your doctor just said it is OK, it may not be since what is OK for normal folks is not OK for RLS.

[Happyfriday123 in reply to SueJohnson]

Yes, exactly, it was over that RLS-“limit”… But this is a good point, I will check this definitely again when I go to my doctor next time! 🙏🏼

[Happyfriday123 in reply to SueJohnson]

Really grateful for this. Can‘t wait to tell my doc about gabapentin 🙏🏼 I don’t know if this is available in Switzerland

[Madlegs1]

The only thing that would really work might be Oxynorm 5. They last about 6hrs and take 15 mins- to kick in.I would board and distract myself as much as possible as suggested, and finally take the OXY.

If you can't get that, then Valium 10 mg would be your best bet. I'm sure a Dr would prescribe a few pills just for the flight if you explain the circumstances.

All the best.

[Memmy]

If you are in the UK you can get Boots codeine and paracetamol. For 1 time it's ok but paracetamol is the one to be careful with.

[soupersuzy in reply to Memmy]

I saw your reply to Barrylegs. Why is paracetamol one to be careful with? I ask as I take it virtually every night for one reason or another, I always thought Codeine and Paracetamol was the one that could become addictive.

[Memmy in reply to soupersuzy]

It seems if you take too many it can affect your liver but it's safe as long as you don't exceed the dosage

[soupersuzy in reply to Memmy]

I don't ever take more than 2 doses a night so should be ok, thx.

[SueJohnson]

If you take something that works at night, take it in the same way before your flight.

[Joolsg]

What meds are you currently taking for RLS? You can get a medical alert card asking for an aisle seat so you can walk up and down during the flight.If you're on Dopamine Agonists it would indicate you're in augmentation if you're concerned about the flight and walking around. When is your flight?

[RestlessNights11]

I feel for you. I flew from Australia to USA and forgot my medications. Seriously it was hell. My advice is take your meds, walk as much as you can & get an aisle seat!! Hope it all goes well for you.

[Allyp69]

I want to see our son in Sydney from UK this winter, hopefully. RLS unbearable on long flight, only way for me is to go business class and it costs a fortune....lying down is the only way I can get through a 12 hour flight plus another etc...😔You have my sympathy but I don't take meds for RLS.... Just iron, CBD oil...Hope you find relief.

.

[67Waterman]

Hi Barry.

God yes, I do feel for you as well. We have just been to Mexico for a holiday. The flight there was a day flight, 11.5 hours. I just watched films back to back (someone else suggested music - anything like that really does help). Anything that keeps your brain seriously hooked and working seems to mean that it does find time to get RLS. I think I manged four (rather terrible!) films!

The flight back was a different matter as it was a night flight, so I had already been up and awake for 12 hours even before the flight took off, was already tired and fidgety, and certainly could not watch films all night long. This is also when I start to get a bit tearful because I know that RLS will be hell, and every minute will seem like a lifetime.

I take Gabapentin, 300mg at breakfast, 300mg at 2.00pm, 300mg at 5.00pm, 600mg at 7.00pm and 600mg at 9.00pm. That generally keeps my RLS at bay day and night.

However, where the situations are very stressful, like a night time flight, then I will also take 0.25mg Ropinirole (dopamine agonist). And if my RLS still pops its ugly head up on the flight, then I will take another 0.25mg, just to get me through, and keep taking until the RLS is under control.

I know that Sue will wrap my knuckles on this, but 10 hours night time flight when you are already tired means that one's RLS is at its worst, and I am one for "any port in a storm".

I hope this helps Barry. Good luck and enjoy Canada when you get there. Sally

[Lilcatfeet in reply to 67Waterman]

I travel regularly between coasts. I found I had to stop taking the red eye flights after a nightmarish experience spent walking the aisle, much to the annoyance of other passengers. I know it’s not always possible to avoid night flights but it sure helps.

[Eryl]

I've completely eliminated my rls by changing my diet. In my opinion most rls is caused by inflammation of the nerves and the most common cause of this chronic inflammation is high blood sugar which is caused by eating too much refined carbohydrate. I do not eat anything made with added sugar like cakes and biscuits and as little as I can of anything made with white flour i.e. bread and such foods. Also you need to avoid fruit juice as it has a lot of notural sugar but none of the fibre which gives come protection.

[PoorRichard in reply to Eryl]

Agree on diet & especially sugar, high glycemic carbs. It has made a huge difference for me. Thanks for charting a path.

[Eryl in reply to PoorRichard]

As well as carbs, other things which can be a problem are polyunsaturated fats which can cause oxidative stress on nerves (nerves are built from fats) and for some oxylates and others nightshades.

[Healing2021]

Two things help me flying: 1) compression socks and 2) I’m really flexible..so I get a window seat and then put my legs almost straight up in the air, leaning on the side of the plane. I find if I can get my legs above heart level, it helps tremendously.