Coffee, including "decaf", seems to cause/worsen R

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

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Robin-Whittle
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Joined: Sat Aug 28, 2004 5:24 pm

Coffee, including "decaf", seems to cause/worsen R

Post by Robin-Whittle »

Can anyone report their experience with RLS and coffee, including
the possibility that decaf coffee on its own, in the absence of any
other source of caffeine, contributes significantly to RLS?

Some people suffer RLS so frequently and severely that they want
or need to take prescription medicine. I am curious how many such
people completely avoid all caffeinated drinks and furthermore
do not drink any decaf coffee at all. Not "only one or two cups a day"
- no caffeine and no coffee of any kind from one month to the next.

My wife Tina has suffered from RLS and PLMS (Periodic Limb
Movements in Sleep) since she was about 12.

Coffee and tea was causing the worst of this, and decaf coffee
caused less trouble. She has been having no caffeine apart from
what remains in decaf coffee for two years or so. Decaf coffee
probably contains 4 to 6% of the caffeine of non-decaf coffee. See
the webpage mentioned below for more details.

A few months ago, Tina cut down from about 3 decafs a day to 3 a
week. Her RLS pretty much stopped for several weeks - a huge
change from being a nightly event, with frequent serious disruption
of sleep. Then, the RLS incidence slowly increased, but to a lower
level than before.

A similar thing happened when she stopped decaf altogether 8
weeks ago: no RLS at all for a week or so, and then a return of
symptoms at a still lower level.

Since then, there have been mild RLS symptoms about once a
week. This can be dealt with easily by lying on her side and/or
taking one or two 500mg Tyrosine tablets.

If this pattern continues, then this is the true "natural" level of
RLS which she suffers from. If so, then the frequent and
sometimes really bad RLS of the past was therefore caused by
a combination of inadequate iron (her iron levels are fine now),
caffeine and whatever else is in coffee which contributes to RLS
symptoms.

I think the caffeine in decaf coffee is too little to explain the
strong RLS symptoms it was causing. A more likely explanation -
one I find convincing at present - is that coffee, including decaf,
also contains significant quantities of compounds which block and
do not activate mu opioid receptors. These compounds are
"mu opioid receptor antagonists". It is not known to what extent
these compounds affect the other types of opioid receptor.

Opioid receptor agonists (any pain-killing opiate drugs, such as
morphine - compounds which bind to and activate mu and some
other types of opioid receptor) are very effective at reducing or
stopping RLS symptoms. However they are addictive and they
have debilitating effects such as drowsiness and constipation.

Since relatively low levels of opioid receptor agonists reduce or
eliminate RLS, it would not be surprising if opioid receptor
antagonists - such as those which exist in coffee - cause or
worsen RLS symptoms.

The original research on these compounds was done here in
Melbourne Australia, in 1983. The research was considered so
significant that the initial paper was published in Nature. There
has been some further research in the USA since then, and the
active compounds have been identified. The most significant is
"4-Caffeoyl-1, 5-quinide" (AKA 4-Caffeoylquinide or 4-CQL).
However, the existence and effects of these compounds are not
widely known. They seem to have "flown under the radar" of pain
researchers and clinicians. I have never seen them referred to in
an RLS paper.

One of the recent papers is:

Adriana Farah, Tomas de Paulis, Luiz C. Trugo and Peter R. Martin.
Effect of Roasting on the Formation of Chlorogenic Acid Lactones in Coffee
Journal of Agriculture and Food Chemistry. 2005, 53, 1505-1513

http://vanderbilt.edu/ics/Files/Effect of Roasting on lactones.pdf

Other papers are listed at my page:

http://aminotheory.com/coffee/

We find that moderate and occasionally immoderate consumption
of chocolate does not seem to contribute significantly to RLS.

- Robin
I have no formal qualifications in any field. Internet discussion groups and
information from people with no medical qualifications - people who
have never met you - are no substitute for proper medical care and advice.

Chipmunk
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Post by Chipmunk »

I don't drink caffeine at all and still have WED/RLS pretty bad. I drink only water or milk and occasionally orange juice.
Tracy

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ViewsAskew
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Post by ViewsAskew »

I also completely avoid it - well, not completely, but in the winter I sometimes have some decaf black tea - maybe 10-15 times a year. I drink decaf coffee even less, usually only after dinner at my in-laws - so 3-4 times a year.

I drink primarily water, herbal teas like chamomile, juice, or sparkling water.

But, I found the research fascinating! It makes perfect sense. Since we have so many genes involved with RLS/WED, I imagine that some of us may be more bothered than others by something like this.
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Post by Polar Bear »

I drink only decaf coffee, about 4 a day.

As yet I've been unable to find anything that particularly triggers my symptoms. None of the usual coffee, alcohol, ice cream, chocolate. Perhaps the fact that I have symptoms 24/7 masks any mild trigger factors.
Betty
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

Wayne
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Location: Virginia (USA)

Post by Wayne »

I don't drink any caffeine at all now and I rarely did when younger (pre RLS) and I still have RLS issues.

Robin-Whittle
Posts: 44
Joined: Sat Aug 28, 2004 5:24 pm

Post by Robin-Whittle »

Thanks for your replies. I assume everyone who posted has sorted
out their iron levels, so their RLS symptoms have causes other than
low iron.

My concern is that some people think one or two cups of coffee, or
several cups of decaf coffee, is a small amount which wouldn't affect
them. Googling "coffee" together with "anxiety support group" turns
up plenty of pages which indicates that some people with serious
anxiety problems don't consider coffee or caffeine to be a cause or
a contributing factor to their difficulties. Quite a few anxiety support
groups meet for coffee! This is despite caffeine being an anxiogenic
drug and there being a plethora of warnings to anxiety sufferers
about avoiding caffeine entirely. For instance the NIH:
http://www.nimh.nih.gov/health/publicat ... ndex.shtml
says that anyone with anxiety disorders should not use caffeine.

Some people may think that the lower levels of caffeine in decaf
coffee mean that its OK to drink this, but as far as I know, for
people with anxiety disorders, there's no safe limit - every bit of
caffeine makes anxiety worse.

Polar Bear, you wrote that you have symptoms day and night and
that you drink 4 cups of decaf coffee a day. Have you tried having
none of this, together with no other sources of caffeine, for a few
days? Have you ever tried two or three 500mg tyrosine tablets?
When Tina was having bad RLS (due to caffeine and/or decaf
coffee and/or low iron) we found that this reduced or eliminated
it for a few hours.

I am not suggesting that caffeine or any form of coffee is the
only or even the main reason people suffer RLS. My concern was
that these would cause or greatly worsen symptoms and that
many people might think it is OK and normal to drink these, so
they might never try stopping entirely.

- Robin
I have no formal qualifications in any field. Internet discussion groups and
information from people with no medical qualifications - people who
have never met you - are no substitute for proper medical care and advice.

badnights
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Post by badnights »

You mentioned that your wife used to drink caffeine and also that her iron used to be low. Can you tell us when and how her iron rose in relation to her use of coffee? What iron measures were low and are now OK (ferritin, hemotocrit, transferrin)?


ps I went months without coffee in any form. No help for the WED.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Robin-Whittle
Posts: 44
Joined: Sat Aug 28, 2004 5:24 pm

Post by Robin-Whittle »

Hi Beth, Thanks for your reply. I won't post personal details such
as Tina's iron levels. I wasn't suggesting that these were related
to coffee or caffeine consumption, but perhaps these do affect iron
absorption. Now her iron levels are good (according to her doctor),
we still found that 3 cups of decaf a week caused troublesome RLS
and that without this, there's very little trouble.

There could be all sorts of factors at work, different factors being
more or less important for different people.

- Robin
I have no formal qualifications in any field. Internet discussion groups and
information from people with no medical qualifications - people who
have never met you - are no substitute for proper medical care and advice.

badnights
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Location: Northwest Territories, Canada

Post by badnights »

You misunderstood. I didn't ask what her iron levels were. I asked what "iron" you were talking about (ferritin? hematocrit? etc).

You also missed the main question, which I will try to clarify here: when did her iron go up in relation to the improvement in WED symptoms and in relation to the quitting of coffee? You have two factors in contention here for being the cause of the improved symptoms: stopping coffee and increased iron levels. Have you made any effort to distinguish between them?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Robin-Whittle
Posts: 44
Joined: Sat Aug 28, 2004 5:24 pm

Post by Robin-Whittle »

Hi Beth,

Sorry about my misunderstanding. The blood measurements we have
are for ferritin (ug/L), iron (umol/L), transferrin (g/L) and transferrin
saturation (%). My limited understanding of iron metabolism is that it
is difficult to establish what stores the body has of iron through blood
tests alone. Do you know of any good references on interpreting blood
tests regarding iron? These pages are 10 years old but contain some
background on iron metabolism: http://sickle.bwh.harvard.edu/menu_iron.html

From the point of view of getting iron into neurons, for the purpose of
ensuring tyrosine hydroxylase can operate properly (converting
tyrosine in to L-DOPA, which is then converted into dopamine) I guess
one of the the most important factors would be the levels of iron in the
serum, most of which is bound within ferritin cages.

http://www.chemistry.wustl.edu/~edudev/ ... ritin.html

The iron in haemoglobin in the red blood cells would not be available to
the neurons. The next question is how iron gets into the cerebrospinal
fluid (CSF), or more particularly interstitial CSF (between the cells, not
the bulk flow from the choroid plexus) near the dopaminergic neurons
which are involved in RLS. A third question would be the effectiveness
of the transporter which gets the iron from the interstitial fluid into the
neuron itself.

The iron and ferritin measurements we had from mid-2008 were within
the lower part of their acceptable ranges. I am not sure how to
interpret transferrin and transferrin saturation figures, but they were
within the acceptable range too.

At the end of March this year and the end of June, iron and transferrin
saturation were within the acceptable ranges. In March, Tina's ferritin
was way above the acceptable range and transferrin was well below.
(She took no supplements the day before the tests.) We changed to a
different kind of supplement from that day, before we knew the test
results. At the end of June, both these figures had come closer to their
acceptable range and her doctor was happy with the new arrangement.

As far as I know, Tina's iron intake has been more than sufficient for
the last year or two. The changes we saw in RLS/PLMS symptoms
correlate exactly, to the day, with the changes in decaf coffee, and were
unrelated to the change in iron supplementation.

Our observations shouldn't be regarded as proof of anything as far as
other people are concerned. However, for us, the almost complete
cessation of RLS/PLMS symptoms from going from 3 or so decaf coffees
a day to none is a substantial and welcome finding.

My interpretation of the little-known papers I cite at
http://aminotheory.com/coffee/ are that it wouldn't be surprising if
coffee of any kind, decaf or not, made RLS/PLMS symptoms a lot worse,
or caused them when there would otherwise have been none. Opioid
receptor agonists reduce or eliminate the symptoms, so it would not be
surprising if the antagonists which apparently exist in coffee worsened
or caused the symptoms.

I imagine the same is true of fibromyalgia or any other condition which
arguably involves disturbances of the spinal nociception (pain
perception). Spinal nociception involves a class of neurons (sometimes
known as wide dynamic range neurons) which both drive pain
perception signals to the brainstem and drive the muscles to produce
reflex reactions in an attempt to avoid the noxious stimulus.

If someone is suffering excessive pain when there's no real reason for
such sensations, (which, I understand is the case with various pain
disorders, including probably fibromyalgia), and if they are eating or
drinking something which contains a lot of opioid receptor antagonists,
then I wouldn't be surprised if their symptoms were reduced or
eliminated when they stop taking these antagonists.

Pain perception and the role of opioids in suppressing it is a well
researched field, but many questions remain unanswered. The best
reference I know for the current state of knowledge is chapters
12, 23, 24, 29, 49 and 50 (and maybe others) of Alan Basbaum and
M. Bushnell eds "The Science of Pain" Elsevier Academic Press Aug
2008. Yet this book, and the PAIN journal, do not appear to contain
any mention of the opioid receptor antagonists which apparently
exist in significant quantities in coffee.

- Robin
I have no formal qualifications in any field. Internet discussion groups and
information from people with no medical qualifications - people who
have never met you - are no substitute for proper medical care and advice.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Post by badnights »

It's an interesting subject. Not simple though. The references you cite indicate that coffee contains both opioid-receptor antagonists and agonists. They also suggest that more work needs to be done to establish whether these substances are absorbed unchanged into human bodies, and question whether the concentrations in hot-water-extracted brews would be high enough to cause CNS effects. So the notes of caution are abundant.

But an interesting topic, and a dramatic correlation for your wife, which would be clear enough for me to be espousing the theory if it had happened to me. (unfortunately it didn't).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

veldon7

Post by veldon7 »

Hi: I drink several cups of coffee throughout the day, I know for a fact that it aggrevates my RLS. I have tried drinking less, only in the am, and my legs don't jerk as much. The more cups I have the worse my legs are. I am trying to cut back on caffeine, but have not been successful. I read that decaf is bad for you because of the chemical process of taking the caffeine out.

Polar Bear
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Post by Polar Bear »

I read that decaf is bad for you because of the chemical process of taking the caffeine out.

I didn't know that.... guess my decaf might have to go.
Betty
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

Rubyslipper
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Location: Missouri

Post by Rubyslipper »

This is all very interesting. I didn't see where anyone posted about caffeine or caffeine-free soda. I don't drink coffee but do drink caffeine-free soda.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Robin-Whittle
Posts: 44
Joined: Sat Aug 28, 2004 5:24 pm

Post by Robin-Whittle »

Hi veldon7 and PolarBear,

Quite a lot of decaf coffee is made with the "Swiss water" technique,
which used to be done in Switzerland but is now done in Canada:

http://en.wikipedia.org/wiki/Decaffeination

so decaf coffee doesn't necessarily have any residues from non-water
solvents. I think this is a more expensive process, so decaf coffee
made with this process would probably come with a notice to this effect
on the package.

I surveyed research into caffeine content of decaffeinated coffee at
my page:

http://aminotheory.com/coffee/

and concluded it is likely to be in the range of 4% to 6% of the
strength of non-decaf coffee. Due to the caffeine alone, it wouldn't be
surprising if reducing or eliminating decaf would help anyone having
sleep difficulties.

PolarBear, you mentioned in the "sativa vs. indica" thread that you had
recently been diagnosed with fibromyalgia. I understand this is at
least in part a disorder of nociception (pain processing). If - as several
papers suggest - coffee of all kinds, including decaf coffee, contains
significant quantities of opioid receptor antagonists, it would not be
surprising if even a decaf coffee every few days would significantly
worsen any problem you have feeling pain due to stimuli which are not
normally painful.

Since this research is not widely known, it wouldn't be surprising if
doctors consider decaf coffee to be relatively benign and unlikely to
worsen or cause fibromyalgia or RLS symptoms.

- Robin
I have no formal qualifications in any field. Internet discussion groups and
information from people with no medical qualifications - people who
have never met you - are no substitute for proper medical care and advice.

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