Coffee: I'm also an RLS sufferer and it... - Restless Legs Syn...

Restless Legs Syndrome

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Coffee

23 Replies

I'm also an RLS sufferer and it often seems to affect my whole body which drives me MAD! But after googling RLS I found an obscure site that went against accepted advice and suggested that in some cases, strong coffee (obviously the caffeine) could help. I tried it and it WORKS! When I am up in the middle of the night, I drink strong coffee and five minutes later my RLS is appreciably better!

However, I know that for most people, it would make it worse!

23 Replies

You know, I swear that coke (the caffeine?) makes my RLS better. Weird, but true.

Madlegs1 profile image
Madlegs1

It has never been researched , as far as I'm aware , that caffeine actually causes rls. The original proposition came from a Japanese research that showed just one individual got rls from coffee as a side effect in a completely different test. --' so not really very conclusive.

Caffeine is certainly a stimulant and will keep people awake- but shouldn't produce the shaking legs.!😅

Plenty of other triggers to do that.!

I read of one other person for whom this worked. I wonder what the rationale is? Something to do with conversion of glutamate to gaba I suppose. It seems a bit counter-intuitive to drink coffee in the middle of the night but it’s worth a try.

involuntarydancer profile image
involuntarydancer in reply to involuntarydancer

Maybe not glutamate to gaba as it works on the RLS symptoms - was getting confused - the caffeine will still cause alertness

I have drink coffee sometimes in the night, then use the deep freeze, now could be one or the other or both that i find helps me to sleep. The coffee definately doesnt keep me awake.

TheDoDahMan profile image
TheDoDahMan in reply to

Hi, Elisse,

What do you mean by "use the deep freeze"? Thanks!

in reply to TheDoDahMan

Sorry i should have explained what that was. Its a product that is used for sports injuries like sprains pains etc. There is a Deep Freeze spray or gel. it has menthol as a ingredient and it the menthol that works. Any product that has menthol would work the same.

TheDoDahMan profile image
TheDoDahMan in reply to

Gotcha'! Thanks!

LoisTonya profile image
LoisTonya

Hi Altosinger,

Caffeine, alcohol and lack of exercise is most doctors default for every ill. I’ve never drunk alcohol before but Kirstie Anderson, consultant neurologist in Newcastle,said that, for most people, some alcohol can be advantageous. I’ve started having a small amount of Malibu in the evening and I am sleeping better. As I know nothing about alcoholic drinks and didn’t know what to buy I saw that Malibu was reduced in price and bought it!

Bettyboop45 profile image
Bettyboop45 in reply to LoisTonya

I drink a small Guinness and that helps me 😀

Bftalbert profile image
Bftalbert in reply to LoisTonya

Alcohol either has no effect, or at times, makes it worse, but it never helps. I have had severe RLS for about 45 years. It's a lot like ADHD. These things work on us just the opposite from others. For instance, I can't take benadryl. It should make me drowsy, but instead makes me want to crawl out of my skin with RLS.

SuperMNew profile image
SuperMNew

Yes, coffee increases dopamine in the brain (so I understand) which is what drugs for RLS do; however, the caffeine depletes magnesium which is essential in the body.

LoisTonya profile image
LoisTonya in reply to SuperMNew

Hi SuperMNew,

That makes sense to me. I drink quite a lot of tea. Worried about caffeine I tried camomile tea at bedtime but find I sleep better after proper tea and, of course, I take quite a lot of magnesium.

Bftalbert profile image
Bftalbert in reply to SuperMNew

You are exactly correct about the dopamine!

kicinskil profile image
kicinskil

I might give that a go - thanks for the suggestion! Do you sing in a choral society?!

in reply to kicinskil

Yes - just sang in an amazing concert Armed Man and other things!! Wonderful!!

Bftalbert profile image
Bftalbert

I have had RLS for about 45 years. I, like you, often get the whole body effect (scream). Have you ever had it while on a plane? It's the worst!

I discovered caffeine by accident about 13 years ago. Now I grab a cup of coffee or take a caffeine pill at the start of every plane ride and movie, as well as those usual night episodes. I've told probably close to 10 people about it over the years, and it has worked for every single one. The funny thing is, doctors just kind of shrug it off. After all, what do I know. Lol!

newlife54 profile image
newlife54 in reply to Bftalbert

Hi are you still active on the site ?

wlippincott profile image
wlippincott

Coffee works for me too for my rls! I usually take it around 1-2 am mixed with skim milk and vanilla. (cold coffee with fresh ground beans). I also take 1/2 tsp of L-theanine then too. I think that counteracts the caffeine some. A bit later some ashwagandha which can help me fall asleep. I've tried getting by without the coffee and that never works since I can't relax with the rls and I'm dead tired. I also avoid Saturated Fat, chocolate, MSG, and gluten. Take extra Magnesium and electrolytes as well as B Vitamins and Iron. But the Physicians all say to get off the caffeine. But I need green tea during the day to stay awake....

I believe I developed the rls after using a lot of lemon juice concentrate which had Sodium Benzoate as a preservative. The Sodium Benzoate converts to Benzene in the presence of Vit. C. Benzene is a lethal poisen in very small amounts. Sodium Benzoate is also used in many products and sodas. I avoid it now at all costs. Probably is responsible for many other bad health issues for other people. It should be banned.

Whymelord profile image
Whymelord in reply to wlippincott

Hi, I’m still walking the floor so I’m gonna try coffee now ,hopefully I’ll help,can’t make the RLS any worse thanks for the tip.

newlife54 profile image
newlife54

Hi are you still active on the site ?

Sleeplesnights profile image
Sleeplesnights

Strong coffee at night works for me as well. I know its supposed to be a stimulant and all medical advice is not to drink it after 6pm but obviously there are exceptions. As I understand it this idea only works for non coffee drinkers which includes me. Apparently, when we drink coffee during a RLS surge we get a Dopamine boost. Furthermore, I have the added advantage that coffee doesn't keep me awake. Happy days.

Sleeplesnights profile image
Sleeplesnights

Coffee works for me too. Most nights RLS either stops me sleeping or else awakens me and I can't get back to sleep. A strong cup of coffee always solves the problem. It should be noted that I am not a coffee drinker and my information is that if I was, coffee would not work as I have described above and might in fact have the opposite effect.

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