Coffee actually calms my legs. Anyone else?

[auntiesioux]

I know this is backwards but I know several folks with severe RLS, like mine and a small cup of coffee in the middle of the night calms our legs down. I only do this every so often but it always works. Anyone else experience this. Of course the doctor does not believe me. Thanks for feed back

[LisztLover]

Yes! I do the same! It’s 3:00am here and I’m drinking a cup of coffee as I write this...it seems to make me sleepy and calms my legs. It doesn’t work, however, if I have a cup at 10:00pm while going through the initial phases of the RLS, which actually start before 10:00. Go figure!! My family doesn’t understand and discourages me from drinking coffee during the night, but I know what does and doesn’t help me. You’re not crazy or alone! 🤪 For me, It’s basically whatever works!!

[Marilynn in reply to LisztLover]

I've also experienced this in the past but thought it was just a fluke. However having read this I will certainly give it another go. Thank you.

[involuntarydancer]

I picked this tip up on here and I also find a cup of coffee helpful. I understand it is to do with how it operates on the adenosine system in the brain. According to Dr Buchfuhreres book there is no evidence that coffee exacerbates rls.

[Hidden]

Yes, SOMETIMES a cup of coffee in the night seems to stop the RLS and i get back to sleep. Had one last night which got me back to sleep. When websites say dont drink caffeine, its more to do with keeping you awake, as caffeine is considered a stimulant, rather than making RLS worse. I as first thought it was a fluke when i had a coffee in the night, but seems not.

[martino]

I suppose all the comments illustrate the point that if it works for you then do it!

[Hidden in reply to martino]

Totally agree! I just had a couple of bad nights, but then last night was fine. The only thing I changed: once again having some chocolate before bed. In the past I have noticed a connection between eating chocolate before bed and having a good night. Makes no sense but, hey, I’ll keep doing it if means having a good night.

This syndrome is so messed up!

[LotteM in reply to Hidden]

I would ‘t mind that too! Hope it continues to work well. Enjoy!

[DisneS in reply to Hidden]

Just eaten a square of chocolate and was thinking I was causing more problems for myself but, after reading your experience, maybe I’ve actually helped myself!

[Hidden in reply to DisneS]

How’d you do last night after the chocolate?

[DisneS in reply to Hidden]

No better no worse than usual!

[Wi11iams]

Theres lots of variables in having a coffee at night, but i find i can sleep better if my brain is awake more when i try to sleep, that probably why tramadol works so well for me!

Other questions to ask are; could it have something to do with the link to stomach bacteria? Have you tried with other hot drinks? Possibility it could be the warmth of the drink in the stomach, rather that it being specifically coffee. Or even maybe just the act of getting up and doing something that distracts the brain. Either way glad you have found something that helps a bit! 👍

[Hidden in reply to Wi11iams]

I also drink tea in the night when i am up pacing, that doesnt help. Its when i decide to drink a cup of coffee instead which seems to work.

[Hidden]

Thank you. I'm going to try this then, I've always felt guilty as if it;s self inflicted for drinking a coffee in the am which I need to overcome the fatigue from lack of sleep.

Tea doesn't work for me at night time,

Chocolate, as per another responder also contains caffeine I understand. I though the sugar might counteract the beneficial effect but maybe dark would work?

Caffeine does usually keep me awake if taken in the evening though awake and still is far preferable to being frequently woken with thrashing legs and stumbling around exhausted.

Any idea how much coffee you take?

[auntiesioux]

Hi all, so happy to hear some agreement as we will probably NEVER hear this from a doctor. While I don't measure how much I drink it is probably just about 4 ounces with warm milk and honey. I have tried just the warm milk and honey when I am unofficially dancing and that does nothing. It is the coffee which seems to work. I don't drink much because I don't want BR issues for the next few hours. Would love to hear from anyone else as am going to print this out to take to my next, excuse the expression, "Doctor's

appointment."

[Hidden in reply to auntiesioux]

Just looking at this thread again. Did you say your doctor doesn’t believe you?? Does that stress you out?? Do you need advice on how to deal with that because boy, can I give you some!! I seldom see my doctors now because I got so stressed out! You know something is not right when that happens....

Are you going to print this out? Because I have a message for your doctor.

[auntiesioux in reply to Hidden]

Hi Jess, BTW I always like to see your pretty face when you respond. The doctor, the 'expert' neurologist in southern Oregon was so stressful for me and so not listening and so into his own whatever, not going back. I did print out the discussions on coffee to give to him but he would most likely use it as toilet paper. So, not going back. I have changed a few things in my diet and having a different type of body work but most startling is I "un" augmented. I am back on a very low dose of requip and very low dose of clonazepam. Both of which I took for years when I had a very stressful job but of course needed to work. I am still looking for the cause, even though using 'band aid treatment' in the meantime. There have been so so many "this is the real cause' but none have ever been a consistent 'it'. Anyhow, always nice to hear from you. Sioux

[Hidden in reply to auntiesioux]

Hi! Yep, I hear you. My neurologist has a somewhat of an arrogant nature about himself as well, but he is a good doctor. I’m sorry yours didn’t work out. Will you find another one? It sounds like changing your diet helped in your case! That’s great!

You’re in southern Oregon?! My parents are in Bend and absolute love it! I will be there for awhile after Christmas.

Yeah, I hate all these «band aid treatments» as well. It would be nice to find the underlying cause.

Take care,

[wlippincott]

Green tea helps calm my legs at night too. Loose leaf which can be very concentrated tea with caffeine. That also can help me sleep sometimes since it has theonine in it. However, my sleep is not good, so I try to reduce the caffeine. I love coffee so will give that a try too. Thanks for the tip. As you say, the timing is important. I also rub Vit. E on my legs and use heat. I have to cut all my socks so they don't crimp at the ankle or above since that will set off my legs.

[mmb8083]

Wow, cant believe someone else feels this way. I know I cant drink any kind of coffee after about 3pm or there will be tossing and turning (of course that happens anyway it seems even without that evening cup) but since I am up pacing so much of the night anymore I thought I would just try eating breakfast early with coffee at 3:30 am a few times and same darn thing, I went back to bed and actually slept an hour or two before the alarm went off. I thought it was just a random weird thing but I see others have experienced this also. Cant figure that one out.

[DisneS]

It’s really odd but sometimes when I’ve been kept awake for hours with this beastly illness, I go downstairs and decide I might just as well eat or drink something ‘bad’ with caffeine in it as there’s no point in trying anymore to consume the right food or drink, and hey presto my RLS eases off!

[DJTP1962]

I have an espresso when I can't sleep due to RLS and although it seems counter intuitive, it seems to help.

[Hidden]

well i tried coffee last night and it seemed to work! I am amazed because of the usual advice to avoid. i'm keen to discover if it happens again. i woke around 1 with one of my very uncomfortable wriggles, drank a small coffee and did a crossword. my legs were calmed far more than just with the usual crossword or bath. i went back to bed, couldn't sleep at 1st but lay there with utterly blissful comfort and stillness. eventually, maybe after 2 hrsm got to sleep and woke after a great 4 hrs, far longer than usual. Wriggling again but it dis feel as if something had been altered.

Research needed if it's the adenosine system as above!

Hope it happens again.

Will keep you posted. Wonder what the minimum dose is? Wonder if there are suitable caffeine tablets ( or is it something else as yet unidentified in the coffee which must contain other chemicals as well )

[Artsy]

Hi I drink 1 cup of coffee in the morning that helps me. A friend introduced me to this and she has lost 65 lbs and helps her with stress and sleep. I had to ask her what she is doing because I find ways to stop my RLS from getting worse through my eating habits. I have struggled with RLS all my life so I started doing this and its helping me with my arms and legs. My arms have been driving me crazy at night, and now they feel lots better. This is helping me be more focused, giving me energy, and I'm happier and also its helping me not eat snacks through the day because Im not hungry for carbs or sweets and Im a chocolate and pasta lover. I have lost some weighted also and thats great! My husband is a big fan of this also.

[Merster]

Hi Auntisue. Yes I have found coffee to settle the nerves down. I saw another post on a medical site and the fellow mentioned how against the belief coffee keeps you up it actually shuts down certain brain signals that settle nerves. Ya it works sometimes. I find that as soon as you find something that helps, like a conspiring demon it finds another way to drive you crazy

[Pluto46]

Don't know if it actually has an effect, but if I'm having one of my sleepless nights, I go down to the kitchen and make myself a bowl of cereal (All-Bran - thus killing two large birds with one stone) and some sort of cultured milk or evaporated milk. Doesn't always help, I have to admit, but it does break up the night into smaller chunks. Never tried coffee or tea or any other drink at night.

Chris

[Hidden]

Yes, a cup of coffee will sometimes calm my RLS too.

Right now I am attempting to taper off of ropinorole (3 mg a day) because I have daytime sleepiness, compulsions and augmentation. I am about 5 days into withdrawals and it is not fun! Last night I slept a total of an hour and a half. Doctor suggests trying Gabapentin. I pray that it works. Would anyone want to briefly share their successful withdrawal from a DA with me to give me encouragement.

[jilk]

if only, lucky you i would just LOVE a cup of coffee, but it is not for me