'Caffeine and RLS

Please share your experiences, successes, and failures in using non-drug therapies for RLS/WED (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc. Also under this heading, medical interventions that don't involve the administration of a medicine to the body (eg. varicose-vein operations, deep-brain stimulation). [This forum contains Topics started prior to 2009 that deal with Non-prescription Medicines, Supplements, & Diet.]
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TimG
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Joined: Wed Nov 23, 2011 2:26 pm

'Caffeine and RLS

Post by TimG »

RLS seems to be a mystery malady in many ways and so many folks have found anecdotal evidence that certain physical treatments work for them. I've tried some, not others. Some have worked a little, some have not.

I'm wondering if anyone has had problems with caffeine intake and RLS. If I limit caffeine to earlier in the day, I seem to have less RLS at night. Not always, but much of the time. My problem is that I get tired in the afternoon and need a caffeine boost. To avoid caffeine I try to take a nap when possible. Sometimes I use light therapy to reenergize ( I have a device called a Feel Bright Light, that attaches to the brim of a ball cap and provides about 10,000 lux).

What's your anecdotal evidence regarding caffeine? If it adversely affects your RLS , does the caffeine source matter--coffee, tea, other caffeinated beverage? The timing? The amount?

Rustsmith
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Re: 'Caffeine and RLS

Post by Rustsmith »

The general guidance is that caffeine can be a trigger for RLS. It isn't that way for everyone, but it happens frequently enough to make it something that should be on the top of the list of things to avoid until you figure out otherwise.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Re: 'Caffeine and RLS

Post by stjohnh »

The avoid caffeine recommendation isn't just anecdotal. Caffeine is a known adenosine receptor antagonist, and extracellular adenosine directly affects the dopamine and glutametergic pathways, also known to be primary problems in RLS patients.

For me, I limit my caffeine to about 1 cup of regular coffee each day before noon (actually I drink about 3 cups of 1/3 caf coffee- 1 scoop regular coffee + 2 scoops decaf in my coffee maker-). Little to none after 12 noon. Sometimes a cup of hot chocolate or a singe chocolate candy in the evening (about 10mg caffiene). More makes sleep clearly more difficult.
Blessings,
Holland

QyX

Re: 'Caffeine and RLS

Post by QyX »

Caffeine has been triggering RLS symptoms for me for 3-4 years now, up to a point where I completely stopped using caffeine at all.

Since I'am using medical Marijuana, I seem to be able to tolerate caffeine much better again and small amounts like one cup of coffee or one glass of coke don't seem to trigger RLS symptoms anymore.

However, I am still very careful with caffeine and noticed that higher doses still can trigger feelings of discomfort that require me to use extra medication.

Frunobulax
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Re: 'Caffeine and RLS

Post by Frunobulax »

Again there is some variety :) I can drink coffee and black tea as much as I like (which is usually about 3 cups a day) provided it's early enough. I stop about 8 hours before going to bed, drinking coffee or tea later won't cause RLS but it exacarbates my insomnia. I have tried going without tea or coffee for weeks, but there was no change in insomnia so I enjoy my tea or coffee.

But then, SAM-E never did anything for me either.

Stainless
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Re: 'Caffeine and RLS

Post by Stainless »

I stopped drinking caffeinated coffee a few years ago. My wife secretly reduced caffeine over a week until I was off. As a lifelong heavy drinker of caffeinated coffee I was surprised was so easy for me. I know decaf has some and I drink about 3 cups first thing in the morning if I don't have something going on. Since going to decaf I have had regular many times and am surprised how easy I can transition back. When I drank the real stuff I never did after noon or I had trouble sleeping but not because of RLS. Everyone seems to be different.

Stainless
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Re: 'Caffeine and RLS

Post by Stainless »

Ice Cream is what sets my legs off. I stopped many years ago. Boy I miss mint chocolate chip....

ViewsAskew
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Re: 'Caffeine and RLS

Post by ViewsAskew »

I didn't have coffee for 15 years (any caffeine) because it was a trigger for headaches. A neurologist told me to drink it instead of using a "wake-up" prescription. I started drinking it in 2007 or so, I think. I notice no difference either way. Sure caffeine can keep me awake depending on the medication I take - but that is different issue.

I would love to see the correlation between age of onset, type of RLS, and what bothers us. I have eliminated many things over the years - rarely does anything seem to matter except ferritin level, excessive exercise (and only for a few days) or things to do with my skin - dry skin, tight clothes, scratchy items that tough me, something cold - and as soon as they are reduced or removed, the symptoms go away.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

TimG
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Re: 'Caffeine and RLS

Post by TimG »

ViewsAskew wrote:
I have eliminated many things over the years - rarely does anything seem to matter except ferritin level, excessive exercise (and only for a few days) or things to do with my skin - dry skin, tight clothes, scratchy items that tough me, something cold - and as soon as they are reduced or removed, the symptoms go away.
After I stopped blood donations and began taking iron supplements, my ferritin gradually increased to 100 from a low of 19. It has remained steady for over a year. That has made a difference in the frequency of RLS. I haven't heard before about excessive exercise causing RLS. I am a regular exerciser, but don't know what would be excessive. What would you classify as excessive? Also, is timing important? I notice that it is harder to get to sleep if I have exercised within a few hours of bedtime.

It is interesting that you mention things to do with your skin. I have never connected this to RLS, but I have similar issues with sensitive skin. I will try to see if I can reduce some of the things you mentioned, including dry skin, tight clothes and scratchy clothing, and see how this affects my RLS.

ViewsAskew
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Re: 'Caffeine and RLS

Post by ViewsAskew »

TimG wrote:
ViewsAskew wrote:
I have eliminated many things over the years - rarely does anything seem to matter except ferritin level, excessive exercise (and only for a few days) or things to do with my skin - dry skin, tight clothes, scratchy items that tough me, something cold - and as soon as they are reduced or removed, the symptoms go away.
After I stopped blood donations and began taking iron supplements, my ferritin gradually increased to 100 from a low of 19. It has remained steady for over a year. That has made a difference in the frequency of RLS. I haven't heard before about excessive exercise causing RLS. I am a regular exerciser, but don't know what would be excessive. What would you classify as excessive? Also, is timing important? I notice that it is harder to get to sleep if I have exercised within a few hours of bedtime.

It is interesting that you mention things to do with your skin. I have never connected this to RLS, but I have similar issues with sensitive skin. I will try to see if I can reduce some of the things you mentioned, including dry skin, tight clothes and scratchy clothing, and see how this affects my RLS.
For me, if I have been more or less inactive, if I go to the mountains and hike for hours or if I start a strenuous workout regime, the RLS is always worse for a short time. BUT - once I am used to it, that goes away, and may be it helps the RLS a bit. There are studies that moderate aerobic activity was effective at reducing symptoms.

Timing never seemed to impact it for me. For several years, I worked out at 6:30 AM, the moment the doors to the gym opened. I would shower, dress, and go to work. For a few years I exercised at 5 PM - got off the train, went to the gym, played a raquetball game, and went home. For a few years I went to the pool at 8 PM, swam a mile, showered, and went home. Different workouts, but none impacted RLS in terms of worsening it.

I often tell the story of the pantyhose, the train, and the boyfriend. Pantyhose always were horrible. At one job where I had to wear a suit, I would be tired coming home on the train. I would sit in the upper level, in the corner. When the RLS would start, I would wiggle out of my pantyhose and throw them in my purse or briefcase. One night, my boyfriend asked me for something that was in my purse - I told him he could get it. He stuck his hand in and came out with my pantyhose. Now, that was an interesting conversation!

I have lotion in every room in my condo. I slather lotion on ALL the time. It is as if the sensation of itching sets off the sensations of RLS. No itching, less RLS.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: 'Caffeine and RLS

Post by badnights »

I haven't seen any studies on "excessive" exercise and symptom severity. Actually - have I seen any on exercise and symptom severity ? I can't recall. I think the excessive exercise thing has become "wisdom" from repeated re-telling of anecdotes - in the medical community, not among us - and should not be re-told unless it's clear that it's anecdotal. It's like tobacco and WED/RLS. You still read that smoking makes it worse, but although I see that "wisdom" in medical papers, it's never referenced, and I haven't (that I can recall) seen any studies on the effect of smoking on symptom severity.

My personal experience is that extreme stress of any kind will cause bad symptoms - many days without sleep, or working out really hard when I haven't been sleeping well, or having pneumonia. These things cause bad symptoms. But I can exercise equally hard at other times - when I've been sleeping better and am healthier in general - and it doesn't cause worse symptoms.

Same with coffee - - but I'm not so sure sure about coffee :( . Sometimes I can drink it, sometimes there's a seemingly direct increase in symptoms.
Beth - Wishing you a restful sleep tonight
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