I sleep with a fan directed to my feet

[Alex2308]

Guys, I have a mild RLS for 20 years. What really helps is a torrent of air directed to your feet. It makes you "feel" your feet so your nervous pathways don't go overadjusted to make a signal stronger. Any sort of a fan helps, even a very little USB-powered.

[ChrisColumbus]

I've never tried that as such, but do find that just sticking my feet out into cold air can help. In general, I find that a cold bed rather than a warm one helps me. Others however report that cold can exacerbate their symptoms.

[Alex2308 in reply to ChrisColumbus]

Cold air works for me too. But not always there. A simple fan setup is much easier to make. The key is not cold but a sensation. It's like a mic on auto adjust. If it's too quiet it becomes noisy. Your feet have to feel something.

[ChrisColumbus in reply to Alex2308]

I might give it a try in the summer, as long as I can do so without annoying my wife (who doesn't suffer from RLS and doesn't like drafts!)

[SueJohnson]

That is great that you have found something that works for you. Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[Alex2308 in reply to SueJohnson]

hi, thanks, I don't remember exact numbers but my ferritin was more or less OK few years ago, so my GP said I didn't need to raise it further. But I actually tried to raise it myself with lots of hemo-iron along with all the most effective iron supplements for about half a year or so. Nothing changed much.

[SueJohnson in reply to Alex2308]

Doctors will tell you it is OK but what is OK for others is not OK for those of us with RLS. Non-heme iron is preferred and you may not have taken enough elemental iron or taken it in the wrong way. There are a number of things that can interfere with its absorption.

[Alex2308 in reply to SueJohnson]

ok, thanks for your help, I'll try to run tests again

[Boldgirl45 in reply to SueJohnson]

Can I ask why non-heme is preferred Sue?

[SueJohnson in reply to Boldgirl45]

For one thing it increases cancer risks and heart disease risks and all the recommended iron tablets are non-heme like ferrous sulfate and iron bisglycinate. The only time heme iron is recommended is someone who has celiac disease.

[SueJohnson]

Also have you tried gabapentin or pregabalin both of which are the first line treatment for RLS? With your mild RLS, one of those at a low dose might completely control your symptoms. 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 uptodate on it atHttps://mayoclinicproceedings.org/a...

[Alex2308 in reply to SueJohnson]

thanks a lot, I'm too afraid of augmentation and it's not really needed with my pretty mild RLS

[SueJohnson in reply to Alex2308]

You don't get augmentation from gabapentin or pregabalin. You can get it from ropinirole or pramipexole. You probably wouldn't need much with your mild case and wouldn't it be nice to have no symptoms at all and not even have to use a fan.

[Alex2308 in reply to SueJohnson]

both are addictive anyways, so even neurologists here look at you as a junkie and never prescribe it if your case is mild like mine, I tried lol

[SueJohnson in reply to Alex2308]

Sounds like you need a new neurologist. They are not addictive. You can become dependent on them because they do relieve your symptoms, but you can aways come off them without any withdrawal symptoms if you do so slowly. Read 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 uptodate on it as yours obviously isn't at Https://mayoclinicproceedings.org/a...

[Chelle1981uk in reply to SueJohnson]

my mum was on Pregabalin and it didn’t help, she’s now on Gabapentin three times a day and it doesn’t help - we are at a loss what to do with her restless legs. The doctor upped her Gabapentin and she ended up getting severe swollen ankles so we reduced it and they’re no longer swollen but she still has pain in her right ankle and no one knows why.

[SueJohnson in reply to Chelle1981uk]

Sounds like she should go back on the pregabalin and try increasing it if it didn't help. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin) daily."

[Chelle1981uk in reply to SueJohnson]

Thanks Sue. It didn’t work first time round so don’t think it’ll work if we put her back on it 😔 my dad is ringing the GP tomorrow to ask them to investigate further with regards to the constant pain in mum’s ankle.

[SueJohnson]

How much was she taking?