Coffee helps my RLS!

[LakeCow]

I notice most advice on rls suggests avoiding coffee but a few of the posts here say it actually helps. I have found that a cup of good strong coffee after a bad night settles my legs and calms me down and basically puts me to sleep. I have recently tried coffee during the night and it has the same effect. Does anyone know why?

[Lapsedrunner]

It helps me too!!I take gabapentin which allows me to sleep with usually only a brief wake up but if my legs won’t settle I take a Proplus caffeine tablet (equivalent to a cup of coffee) and that usually works quite quickly. Easier than making it to drink!

Just found an article which is interesting- coffee seems to influence dopamine and adenosine amongst other things in the brain….just tried to add the link but can’t, I’ll try again later.

Glad you’ve discovered this, you’re one of a small gang now!!

[johannasuar in reply to Lapsedrunner]

I thought I was imagining this about the coffee, but it works for me too and at night I sleep like a baby if I drink a cup before bed. With RLS you never know what will work .

[Hidden]

Helps me too!

[Margaret59]

I’ve noticed if I don’t have a coffee mid afternoon my legs are worse in the evening, I thought I was imagining it at first. I’m on ropinirole, I take 3 x 0.25 mg.

[SueJohnson in reply to Margaret59]

Have you thought about coming of ropinirole and switching to gabapentin? Up to 70% of people will eventually suffer from augmentation which believe me you don't want?

[macramegirl in reply to SueJohnson]

What is the meaning of augmentation? Does it make it worse?

[SueJohnson in reply to macramegirl]

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. Believe me you don't want this because it can be hell to come off it and the longer you are on it, the harder it will be to come off it. And after many years on a dopamine agonist, which ropinirole and pramipexole are, you may have permanent damage to the dopamine receptors and gabapentin may not work. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know about it including the latest treatment and refer your doctor to it at

Https://mayoclinicproceedings.org/a...

[macramegirl in reply to SueJohnson]

Thank you for the information. I will discuss this with my doctor.

[TeddiJ in reply to macramegirl]

Hi. Good luck with that-they almost always know nothing, which is why we are all on this forum!

[dulciemary in reply to Margaret59]

Do you drink affiliated coffee or decaf?

[Madlegs1]

There is mixed experience on this site on the effects of caffeine on RLS.

So--- whatever works for you is good!👍😎

[Eryl]

I've not found it to cause RLS and I've managed to completeley eliminate my RLS without drugs by avoiding inflammatory foods. I imagine that people who find that coffee triggers their rls take it with sugar which is inflammatory.

[Joolsg]

I never, ever drank coffee until I read on here that it helped some people.I tried it and it worked.

I also now realise that all the official medical advice on NHS and NICE sites that says to avoid coffee is not based on any scientific evidence or trials.

We should do our own survey and present the results to a medical journal.

[Eryl in reply to Joolsg]

I concur, it feels to me to be very weak science based on the fact that is it a brain stimulant and that RLS is a brain problem which Is an incorrect assumption.

[BeachGolfer]

From the August 2002 Journal of Neuroscience: Thus, caffeine, by antagonizing the effects of endogenous adenosine, can facilitate dopaminergic neurotransmission by stimulating dopamine release and by potentiating the effects of dopamine receptor stimulation.

Coffee definitely helps me!

[Kmoore464]

I wonder of it is true for cokes? I had a coke at bedtime last night. Slept well

[DicCarlson]

Here is the study...

jneurosci.org/content/22/15...

[Joolsg in reply to DicCarlson]

Brilliant. Thanks for sharing.

[Lapsedrunner]

This is the article I read, pubmed.ncbi.nlm.nih.gov/135...

[coldfeet7]

I have read that they know the genes that effect your metabolism of caffeine and its effect on keeping you awake. So perhaps this explains why some can take it at night before bed time.

I confess those articles lost me quickly, but I wonder if you have to keep the caffeine level low to avoid too much stimulation.

If it is only the caffeine, that would mean tea could work as well. Anyone tried tea?

[Birdland]

I envy all of you that find relief in caffeine. If I even take a small amount my legs go crazy.

[Eryl in reply to Birdland]

Do you take your coffe with sugar or have anaccompanying biscuit? They're far more likely to be the culprit.

[Birdland in reply to Eryl]

Thanks for your reply. No I don’t ever eat any sugar or even honey. Also don’t eat any grains at all, or carbs. No potatoes etc. I even limit my fruit intake. My diet is very limited and boring but I can’t tolerate any of the meds for RLS so I am vigilant about my diet.

[TeddiJ in reply to Birdland]

Good for you. Gosh, that is so difficult to do!

[Jerry57 in reply to Birdland]

Birdland - My brother is the same way. Caffeine makes his RLS much worse, drives him up the walls, he says. But caffeine relieves my RLS in less than an hour. Whether its black coffee, tea, energy drinks, even No Doz pills, the caffeine gives me a couple hours of relief. However, we both get relief from opioids. Weird.

[John_naylor]

I have a small coffee in a morning, a glass of weak lager with my evening meal and a small square of chocolate with a cup of weak tea in the evening. I have done long, comprehensive tests on my ‘vices’ individually and together and found no worsening of symptoms for me.

[Jules1953]

I am now in the habit of having a coffee of an evening close to going to bed. I find coffee with milk added helps to settle me. I can't explain why.

[MumofSam]

I’ve never found coffee makes a difference to my RLS either way. Caffeine doesn’t seem to have much of an effect on me, as it doesn’t keep me awake or give me the buzz I hear people talk about sometimes. I could drink coffee till the cows come home and still feel sleepy.