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.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Polar Bear
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Post by Polar Bear »

Ronin - thanks for your information regarding decaf.
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

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

Post by Robin-Whittle »

A friend of ours found that reducing her coffee consumption resulted in a
significant decrease in her RLS symptoms. She was suffering RLS about
every third evening, sometimes in the evening when sitting still, and also
when going to bed or during the night. She has been using percussive
massage on either side of her lower-mid spine (with her own fists) with
considerable success. This would reduce or eliminate the RLS and PLM
symptoms for hours or for the rest of the night

She was drinking one not-too-strong plunger coffee in the morning, with
one or two not-too-strong instant coffees later in they day. She also
typically had a coffee (espresso I guess) when she went out, a few times
a week.

In the last few weeks she stopped having these coffees at home and
drank tea instead. She still has one or two coffees a week when she and
her husband go out. She reports that this has significantly reduced the
incidence of RLS/PLMD symptoms.

- Robin http://aminotheory.com/rlsd/
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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Location: Madison, WI

Post by Chipmunk »

Could you share the citations for the papers covering how coffee might make fibromyalgia or RLS worse? I have an aunt with bad fibromyalgia and she drinks a fair amount of coffee.
Tracy

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

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

Post by Robin-Whittle »

Hi Tracy,

I am not aware of any peer-reviewed papers arguing why coffee
exacerbates or causes fibromyalgia. There is a patent application:

http://www.freepatentsonline.com/y2009/0280177.html

which cites a Japanese paper:

http://sciencelinks.jp/j-east/article/1 ... 244268.php

as stating that "People who drink coffee every day have 3.7 times greater
risk than those who do not drink coffee."

My page: http://aminotheory.com/coffee/ lists the papers which show
that coffee contains opioid receptor antagonists. Opioid receptor agonists
(morphine and other opiates, plus the endogenous opioids such as
endorphins we produce in our own body) activate opioid receptors. This
activation reduces the sensitivity to pain. So anything which stops this
activation would be expected to worsen sensitivity to pain.

There's a background level of endogenous opioids in our body and the
papers I cite indicate that coffee consumption by humans would be
expected to reduce the activation of opioid receptors.

This 2004 paper, http://vanderbilt.edu/ics/Files/QUINIDE_opioids.pdf
which is freely available, reports on a test of 4-Caffeoyl-1, 5-quinide
(4-CQL), apparently the most important opioid receptor antagonist in
coffee (according to its affinity for the receptors and its concentration in
coffee):

* In particular, the caffeic acid derivative 4-CQL, which is found in all
* roasted coffees, showed in vivo inhibition of morphine-induced
* anti-nociceptive behavior in mice with the same order of magnitude
* as that reported for naloxone.

This means that the 4-CQL appears to have occupied the mouse opioid
receptors involved in pain perception (nociception) without activating
them, and in so doing, reduced their activation by morphine. Activation
of these receptors is anti-nociceptive - it reduces or blocks the perception
of pain, and also the generation of reflex responses, since both these
outputs of the spinal cord arise from the same set interneurons for each
part of the body.

There is plenty of research and clinical effort in understanding pain in
general, and pain disorders in particular. Fibromyalgia is widely regarded
as a pain disorder - a large part of its symptomatology involves feeling pain
as a result of stimuli which are not ordinarily painful.

Anything which blocks the activation of opioid receptors would lead
to a reduction in the body's pain thresholds. So it would not be surprising
if ingesting large quantities of compounds which do this (opioid receptor
antagonists) would cause pain to be perceived in response to normally
non-painful stimuli.

The papers I cite do a pretty good job of characterizing the
compounds in coffee which are opioid receptor antagonists (they occupy
but do not activate the "mu" class of opioid receptors, which I think is
the most important of several classes). However, as far as I can tell
there has no research at all on how these compounds affect coffee
drinkers.

As I wrote on my page, I searched both the PAIN Journal (the foremost
journal in the field) and the encyclopedic book "The Science of Pain" -
and found no references to these opioid receptor antagonists.

I wrote to the editors of the PAIN Journal, and one of them wrote back
(the same person is the editor of "The Science of Pain"), indicating he
would look into it. Since he probably knows more about pain research
than anyone else, and since he did not point out any such research
concerning these coffee compounds, it seems that these compounds
have entirely "flown under the radar" of the clinical and research-oriented
pain people.

If I was suggesting that someone drink coffee, or take any other
foodstuff or drug, in order to reduce or eliminate RLS or fibromyalgia,
then it would be wise to consult doctors and look up peer-reviewed
papers which would support such an intervention.

However, I am suggesting avoiding coffee, ideally entirely. As far as
I know, no-one needs coffee or caffeine and there could be no medical
concerns about reducing or stopping it entirely.

So I suggest that anyone suffering from RLS or fibromyalgia doesn't
need to rely on medical advice or peer-reviewed research before
deciding to cut back on coffee, or to stop it altogether. If they do want
to wait for this, they could be waiting and suffering for quite a few more
years.

What's more, because of the current lack of research, they are in an
excellent position to do research themselves. If they cut back or
eliminate coffee, without doing anything else, or perhaps while using
some other source of caffeine more than they were, then they can test
my hypothesis. Whatever happens, I would be keen to know the
outcome (rw@firstpr.com.au).

If they do find that their fibromyalgia diminishes significantly, then they
could easily write about this on fibromyalgia forums. They should also
write about it to fibromyalgia researchers. I haven't written to such
researchers, but I plan to at some stage.

- 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.

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

Post by Robin-Whittle »

Sir Thomas Willis wrote, in 1672 (English translation from the original Latin):

"Wherefore to some, when being abed they betake themselves to
sleep, presently in the arms and legs, leapings and contractions
on the tendons, and so great a restlessness and tossings of other
members ensue, that the diseased are no more able to sleep,
than if they were in a place of the greatest torture."

According to: http://www.nestleprofessional.com/uk/en ... offee.aspx

"In the UK, the first coffee house opened in 1650 in Oxford. The first
London coffee house opened in 1652 in St Michael’s Alley, Cornhill.
Lloyds of London was originally a Coffee Shop called “Edward Lloyds
Coffee House”. London coffee houses were nicknamed “Penny
Universities” because for the price of a cup of coffee you could sit and
join in the stimulating conversation with the great thinkers of the day.
Jonathon’s Coffee House in Change Alley was frequented by
entrepreneurs and merchant venturers, and was the beginning of the
London Stock Exchange. By 1675 there were nearly 3,000 coffee houses
in England."

The page http://www.localhistories.org/population.html states that the
population of England was about 4 million in 1600 and about 5.5 million
in 1700. Interpolating these figures gives a population of 5.125 million
in 1675. If there were in fact 3000 coffee houses, that would be one for
every 1708 people.

So it seems that the unfortunate RLS sufferers Willis observed could have
been coffee drinkers.

- 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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