Caffeine has never increased my restlessness though alcohol and sugar does. Someone on the forum posted that coffee relieved their restlessness so when I started getting mild symptoms late afternoon or early evening I tried it. Voila! Has anyone else had this unexpected response?
Has anyone else had coffee relieve RL... - Restless Legs Syn...
Has anyone else had coffee relieve RLS symptoms rather than exacerbate the restlessness?
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BeachGolfer
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You are correct.RLS is different for everyone.
I'm tired/ bored telling people that the caffeine/ RLS myth is not scientifically proven.
It is based on an early piece of Japanese research, which ,as a side comment, noted that one (1) participant had noted rls symptoms from a caffeine.
Voila!
Science has a history of such bloopers- mostly encouraged/ disseminated by an irresponsible press.
I put forward spinach and iron.
Margarine and butter.
High dose vit C and flu.
I'm sure you can add more.
Basically, everyone with RLS should keep an intake diary and find out for themselves, what their triggers are.
You're welcome!😎😆
Thank you! 😎
I give you Dr. Ignaz Semmelweiz, the first physician to suggest that doctors wash their hands between treating patients. He was committed to an institution as insane because of his outspoken views on the subject and died there, the subject of ridicule from his fellow professionals who could not accept that they might be contributing to the ridiculously high rate of mortality in maternity hospitals in the mid nineteenth century.
Makes one wonder if the profession has changed that much??🥴
It has.
I have repeated blood tests with scarred places. Makes it easier for them.
Health professionals generally now wear gloves when touching folk. Quite amusing to see them struggling to put on plaster or surgical tape!
This isn't anything new. "Universal" cross infection measures were introduced in the 1980s/90s. This was a move away from using protection only when handling people with known infections to assuming everybody is infected!
Dark days of HIV!
In "the clinic" phlebotomists (people who take blood) do one person nafter a nother, after abother and so on.
About 6 tests ago, one of them started without putting gloves on.
ME calmly, "No gloves then?"
P-IST, "It's OK, I've washed my hands".
SEE - progress!
What do you call somebody that takes urine?
Yes. Like you I read on here that both caffeinated and decaff coffee improved RLS for some so tried it and found it helped.
Hi. That's great! Years ago I also found that caffeine relieved my RLS symptoms. I take caffeine almost everyday, usually black coffee, no sugar, because sugar makes my RLS worse, too. However, I can have artificial sweeteners without negative effects.
Alcohol also makes my RLS worse. I found that kratom helps my RLS to a limited extent, though it is much more expensive than caffeine, and tastes absolutely horrid.
Kratom only works for a while … it then also becomes a dopamine agonist ☹️
Indeed, many more people have reported that kratom becomes less effective after a while and you need more to get the same results.
But - is does NOT become a dopamine agonist. Actually, kratom attached to opioid receptors, and dopamine agonists on dopamine receptors. Totally different. Kratom also does NOT like dopamine agonists lead to augmentation, which is not only worsening of symptoms while you take it, but also symptoms starting earlier and spreading to other body parts.
Mist medicines lose effectiveness after a while as most are made and meant for short term use only. Too bad when you have a chronic disease like RLS
Oh, that is interesting, and good to know. Thank you.
I had good results at first, and because there was talk of making it illegal, I immediately bought $300 worth. I used half of it, and, like you said, it lost its effectiveness. Now, I rarely take it, partly because it doesn't work well anymore, and partly because the taste is so revolting.
Scuse the question/anecdote.
Does kratom not come in capsules? I once wrote that some things taste so horrible that they're put in gel capsules which dissolve in the stomach. This avoids having to taste them.
I gave an example as cod liver oil.
Another member immediately replied.
"I didn't know that. I'll rush out tomorrow and get some for my RLS".
I bet it worked too!
Yes, kratom comes in capsules, and you are right, I would now recommend spending the extra money to get it in capsule form.
I could handle the taste at first, but as the benefits of the kratom decreased, the taste seemed to get worse. I am in the process of encapsulating an 8 ounce bag, though I wonder if it is worth the effort.
Perhaps it's going off. Was there an expiry date?
No expiration date on the package.
Oops!
Oops? Not following.
Sorry, a bit cryptic.
Kratom is completely unregulated. No expiry date.
That's not automatically a bad thing, It just means it's produced, packaged, stored, distributed and sold without any checks on quality or standards.
Things don't necessarily retain their good qualities indefinitely for example.
You'll never know when your Kratom was harvested, how long its been stored and under what circumstances before you even got it.
How long have you had it? It may simply have deteriorated!
It's hard to say.
You should see some of the herbs I find in the back of a cupboard. Some gone solid.
5 year old sage tastes a bit like ash.
Or is that hash? Can't read the label!
in reply to Elffindoe
😂😂😂😂😂
Coffee helps my RLS 😊
There is actually fairly recent underpinning that caffeine can help relieve symptoms. It has to do with the adenosine/dopamine receptor complexes. And cafeïne is an antagonist of the adenosine receptors. Don't ask me about the details. Paper by Ferré and coworkers published in 2018.
Coffee also helps me. If I wake up in the night I often make a small cup of coffee and it really helps. It doesn't matter if it's decaff or not
Hmmmm?
I thought adenosine antagonists would reduce adenosine function and lead to higher dopamine and glutamate levels worsening RLS.
I'll check.
Whichever way, some people find caffeine relieves symptoms. I've never noticed myself. I suspect that once my symptoms have started, it may have that effect.
However, by the time you've got up, but the kettle on etc, it's exercise.
I avoid it later in the day as it can promote insomnia, something I have irrespective of RLS.
For English only! What about Horlicks?
I once read some (tongue in cheek) research into this as an aphrodisiac. A couple dranks some, felt aroused, went to bed and fell asleep!
Clear as a muddy brick!
frontiersin.org/articles/10...
Here it (appears) to say decreased Adenosine 1 receptor A1R, can lead to hyperglutamate, hyperarousal and PLMS.
Increasing A1R activity, with dipyridamole lowers glutamate and relieves hyperarousal and PLMS.
Caffeine, sure enough, is an A1R antagonist = blocker.
Get this
frontiersin.org/articles/10...
Caffeine and other A1R antagonists can treat depression!
Following
thebrain.mcgill.ca/flash/i/...
Caffeine does not lower neural activity.
Huh! despite being an antagonist?
That's it, going for a coffee!
Me too! I kept thinking it was weird so I’m glad to see this post. Coffee or tea helps me! I even drink a cup of tea in the middle of the night if I wake up with my legs bothering me. Then I can go back to sleep!
Too much agreement here!!!! I went to decaf and found an improvement but much later I went to drinking plain warm water and found a further improvement. I found out that decaf still contains some caf. Of course it may be that doubling the amount of water that I drank and still drinking the decaf would have helped just as well. We need 20000 guinea pigs to test it on. On the other hand it only takes two weeks to experiment on yourself and have an answer tailored to your very own body. Just eat the same meals every day for two weeks and drink warm water for the first week and then a "reasonable" amount of coffee for the next week. Nothing to lose and everything to gain!
What if you eat guinea pigs?
Tea can contain as much caffeine as coffee.
I used to drink rooibos tea.
It's not decaff, no need for it to be. There's naturally no caffeine in it anyway.
Sadly it's not actually tea and the taste is acquired!
The other thing about decaff is, I guess, a chemical is used to remove the caffeine. Not all the chemical may be removed.
I just can't eat Guinea Pigs or ducks. My wife has had both as pets in the past so it would be like eating the family. Hence I can't comment on their effect on RLS.
I'm vegetarian so strictly guinea pig free.
I know what you mean though.
I grow my own onions, but I cry every time I eat one!
Drink tons of coffee, literally, doesn't make an ounce of difference.
Yes, I’m sure coffee helps me. I thought the coffee makes it worse story might have been perpetrated by the more genuine coffee keeps you awake story & extrapolated to RLS.I find coffee is something I can use to help relieve an episode & so get back to sleep. I am often to be found standing ( someone recently explained why these helped ), doing sudoko with coffee in hand around 3am ( or 1,3, and 5!
If you drink too much though you Walt needing to go to the loo so tricky getting it right!
All I can say is that I envy all of you. Caffeine in any form makes my symptoms shoot through the roof. Many years ago, before I had a name for RLS, my legs would start bothering me after drinking a cup of coffee. The symptoms would not let up for 3 days. That is why I never became a coffee drinker even though I wanted to.
I used to think it made no difference and have a couple of “real” coffees a day but I was bought some very strong (and delicious) Vietnamese coffee recently which wrecked my sleep. I’m not 100% sure if it just kept me awake so I noticed the RLS or actually made it worse but it was pretty clear that my sleep was a lot worse. I’ve always drunk a lot of coffee and wondered whether it could have a long term effect on adenosine receptors and made RLS worse but I don’t know enough about the biochemistry. And yes decaf still has something like a third of the caffeine left in.
Caffeine has never eased my symptoms, I always felt it made them worse. Having said that, I have been strictly off caffeine for over 6months, and searching for other triggers. Looking back now, On a few occasions in the 6months, the nights I have had the unexpected coffee, my symptoms didn’t go, but they were not as intense .
Weather it’s the caffeine or not I’m still unsure.
Defiantly something to think about and explore.
Thank you
Drink black coffee every day, does not affect symptoms either way.
Even when I came off coffee for a while there was no difference to my symptoms.
There we have it, statistics
10 people in favour of caffeine,4 people against.
1 for rooibos,
1 for kratom
20k guinea pigs.
3 am eastern standard time... I am having a cup of black coffee right now ... my legs are settling and soon I will be able to go back to sleep!
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