My hypotheses & Carmex lip balm on the foot arch

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

My hypotheses & Carmex lip balm on the foot arch

Postby Robin-Whittle » Wed Sep 21, 2011 9:12 am

Please pause for a moment and try to get used to the idea that rubbing
a particular brand of lip balm into the arches of your feet may greatly
reduce or eliminate RLS/PLMS symptoms.

. . .
. . .

OK.

I know it sounds weird, but here are our observations and some of the
hypotheses which might explain it. A full account of my observations
and hypotheses regarding RLS/PLMS is in a 32 page document I sent
to about 25 RLS researchers at the start of September. This is not for
publication, because it is a work in progress and because health
matters need to be written about with more caution, and based on
more research.

It is probably not necessary to accept these hypotheses in order to try
using this particular lip balm (Carmex) on the foot arches, since
anything which is safe for lips is presumably safe for the arches of the
foot.

Here is a very brief summary of my hypotheses, without the references,
qualifications and further discussions which make up most of the 32
page version:

[1] - Humans have a recently evolved reflex response which lifts the
toes and the foot, in response to a light touch sensation in soft skin of
the foot arches - not the heel, ball of the foot or the toes. This response
is ordinarily enabled when walking on potentially spiky ground, or in
swamps, to avoid the soft skin of the arch from being punctured.
Today, only humans have foot arches. They are a necessary
consequence of a flexible foot which concentrates most weight on the
heel and the distant ball and toes, in order to gain the greatest
purchase on the ground, to facilitate forwards-backwards balance
which is so important for a bipedal species.

[2] - This reflex response is extremely sensitive, and is normally turned
off by a population of so-far unidentified dopamine-producing
(dopaminergic) neuron output terminals in the spinal cord. There must
be some dopamine receptors which inhibit the interneurons which give
rise to the reflex response. The brain or brainstem evidently activates
these descending dopaminergic neurons most of the time, including
when we are sitting still or sleeping, to prevent false triggering of the
foot withdrawal reflex response.

[3] - This is a modification of the standard foot withdrawal reflex which
is common to mammals in general and to primates and apes in
particular. The genetic instructions which create this soft-touch
sensitive system and its descending dopaminergic inhibitory system
also creates, as a probably non-functional side effect, similar
arrangements for the hands, the torso and perhaps the face. (This
system in the hands would help prevent the palm of the hand being
punctured if we grip a spiny tree-branch.)

[4] - RLS sensory symptoms and the PLM (Periodic Limb Movement)
sensations result primarily from some combination of:

(a) - Inadequate dopaminergic inhibition of these foot-withdrawal reflex
circuits in the spinal cord. This is likely to be due to lack of iron in the
dopaminergic output terminals and/or lack of tyrosine near these
output terminals and/or due to partial blockade of the dopamine
receptors due to dopamine receptor antagonists, such as the drug
Phenergan.

(b) - These and other nociceptive (pain sensing) circuits in the spinal
cord being more than usually sensitive due to inadequate activation of
their opioid receptors, such as due to ingestion of opioid antagonists
in coffee, or the use of drugs such as naltrexone.

(c) - A sufficiently high level of "noise-driven" - random - firing of the
soft-touch foot-arch sensory neurons, in the absence of any of the
point-contact very light touch sensations which normally stimulate them.
(This is "noise" in the electrical engineering sense - random events
caused by thermal motion of electrons, atoms and molecules. The
same process in an audio amplifier creates audible "hiss".) This low
level random firing is probably normal and would not result in a
conscious perception of touch, or in the foot withdrawal reflex, if the
reflex system was being properly inhibited by the descending
dopaminergic pathway and by sufficient activation of opioid receptors.

From this it follows that we can reduce or eliminate RLS/PLMS
symptoms by one or more of the following:

[A] - Increasing the activation of the dopaminergic receptors in these
spinal circuits. The best way would be by ensuring there is sufficient
iron and tyrosine in these parts of the spinal cord. Dopamine agonist
drugs will work too, but these affect the entire nervous system and can
lead to augmentation and side-effects including compulsive behavior
(punding) and pathological gambling.

[B] - Reducing the level of opioid receptor antagonists, such as by
reducing or eliminating the use of any kind of coffee. (Likewise
reducing or eliminating caffeine or any other drug which disrupts sleep
or in some other way contributes to RLS/PLMS.)

[C] - Increasing the level of opioid receptor agonists, such as by
increasing endorphins (such as through exercise) or by taking opioid
drugs such as morphine (which are addictive and have serious
ill-effects).

[D] - Reducing the level of "noise" firings of the sensory neurons which
can activate this foot-arch protective reflex system, to a lower level than
normal, even if this means these sensors are not able to properly
sense the lightest touch.

This final approach D is the subject of this message.

Anything which reduces the sensitivity of these cutaneous mechano-
receptor neurons would be expected to reduce the random "noise-like"
firing which I hypothesise is driving the RLS/PLMS symptoms.

A local anesthetic should do the trick. We found that rubbing EMLA
into the foot arch worked well. Clove oil would probably work too - we
have some but have not tried it yet. (Please make your own decisions
on the safety of using these, Carmex or anything else - I am not a
doctor and even if I was, I haven't examined you.)

EMLA is two local anesthetics mixed so they are a liquid at room
temperature. Small droplets of the mixture are suspended as an
emulsion in water. We found this acts within seconds or minutes and
reduces or stops RLS/PLMS symptoms for some time - maybe an
hour or more. The instructions state that it should be rubbed into the
skin and covered. We find that EMLA needs to be covered by
something, such as clingwrap, to stop it evaporating. EMLA is widely
available in Australia without a prescription, on a "behind the counter,
ask the pharmacist" basis.

In a few tests, I got the impression that simply wetting the skin of the
foot arch with water, and then covering it with cling wrap to keep it
moist, was also effective at reducing or eliminating RLS/PLMS
symptoms, for as long as the skin remained wet.

The third technique we have tried is the most promising. Carmex is a
lip balm from Wisconsin with a long history. It is inexpensive, such as
USD$4 for three 10 gram tubes. We use the 0.35oz "Original Carmex
Tube":

http://www.mycarmex.com/our-products/or ... fault.aspx

with: "Camphor (alleviates pain), Menthol (kills germs and relieves
discomfort), Phenol (gently numbs your sore lips and removes old,
dead skin) and beeswax, cetyl esters, flavor, fragrance, lanolin,
mineral oil, petrolatum, salicylic acid and theobroma cacao(cocoa)
seed butter".

This is presumably the same as the "Original Carmex Jar":

http://www.mycarmex.com/our-products/or ... fault.aspx

"Available since 1937, with over 1 billion jars sold."

There's no need to rub it on the top of the foot, the heel, the ball of the
foot or on the toes. Just the arch of the foot, leading up to the inside
part which is higher.

For each foot I used about 25mm (an inch) of the ~2mm diameter
cylinder of balm which comes out of the tube. I rubbed it in for about
10 seconds, leaving an oily, waxy layer. This requires caution when
walking. If it were to be applied when not in bed, I suggest covering it
with clingwrap and then using a sock to keep the clingwrap in place.

There may be many other creams which work well too. I suspect that
almost any cream, or even just water, reduces the sensitivity of the
neurons sufficiently to reduce RLS/PLMS symptoms.

We have used Carmex several times, most recently last night when
it completely stopped Tina's RLS symptoms in both legs. This was
stopping her sleeping. She was rubbing her feet together and they
were at times moving of their own accord. This was the worst
symptoms she has had since stopping decaf coffee and all other
sources of caffeine ten weeks ago. These symptoms were less than
when she drank decaf. I suspect they were caused largely by some
thoroughly delicious dark Lindt Lindor chocolate we had not long before
bedtime . . . I gave her one 500mg capsule of tyrosine, which we find
generally effective for getting rid of minor RLS/PLMS symptoms.
(We used to use three in the past, when her RLS/PLMS was worse.)
She lay on her side, which usually reduces the symptoms as well.
The symptoms continued.

I tried rubbing a bar of dry soap on the arches of her feet - to explore
the pervasive idea that a bar of soap in the bed would reduce RLS.
Maybe soap would reduce the sensitivity of the foot-arch sensory
neurons. However, this only reduced symptoms for the one or two
minutes which would result from rubbing alone.

This was the first time Tina has had RLS/PLMS in both feet since she
stopped decaf. Within a minute of applying the Carmax, the
symptoms declined and disappeared. She had no more symptoms at
all for the rest of the night. Frequently, in the hours before we get up,
she has a few PLMs when sleeping. Lying on her side usually fixes
this. However, there were none this morning. Perhaps the effects of
Carmax last, to some extent, 8 to 10 hours.

Since Tina only has low level, occasional, RLS/PLMS since stopping
decaf, and since I only get occasional RLS sensations and PLMs in my
right foot when awake, it is now difficult for us to research the
effectiveness of creams such as Carmax. Last night was an exception.

Its my impression that Carmax works well because it has phenol as a
topical anesthetic, and because it is thick and unlikely to evaporate or
run off the skin, at least while sleeping. Maybe the menthol, camphor
and salycylic acid (aspirin) help as well.

If there are symptoms in the arms, then I suggest applying Carmex to
the palms of the hands. However, if RLS/PLMS is this bad, I suggest
ensuring there are no disturbing factors such as caffeine, alcohol,
other drugs or the opioid antagonists in coffee (as discussed in
another thread).

Tina and I are keen to hear of other people's experience with
Carmex, other creams or just plain water - on this forum or via email
to rw@firstpr.com.au .

- Robin Whittle 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.

Polar Bear
Moderator
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Postby Polar Bear » Wed Sep 21, 2011 6:01 pm

Robin, thank you for your very thorough information.
Personally, having tried most things that didn't work, I therefore am cynical about something that seems to good to be true. However, such a product as this lip balm costs so little that it is an easy task to try it out. I don't know if it is available here in the UK but it is likely that there will be something similar.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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

Postby Robin-Whittle » Thu Sep 22, 2011 4:51 am

Hi Polar Bear,

This .co.uk Google search finds 260,000 pages:

http://www.google.com/search?q=%22Carme ... site:co.uk

It seems the 10 gram yellow tubes are available for about UKP3.00 to
UKP4.00. This Amazon page shows exactly what we use:

http://www.amazon.co.uk/Carmex-Lip-Balm ... B00178I0KQ

The small pot version is apparently the original form from 1937:

http://www.amazon.co.uk/Carmex-Classic- ... 003HJNVRU/

"Original" and "Classic" seem to be the key words. There are quite a
few Carmex products, including lip balms, such as the cherry flavoured
version, but this seems to have different ingredients, and does not
contain phenol - which they claim is an anesthetic and which is in the
yellow "Carmex Lip Balm Tube (Original)" we use. I can't say for sure
that this product is safe, but it has been very widely used for decades.

Last night, we had less chocolate, not so close to bedtime. We also had
a very high protein evening meal - Tina cooked a large piece of salmon
with a Moroccan marinade. The more protein, the more tyrosine in the
bloodstream in the hours which follow - so I think this makes it easier for
the dopaminergic output terminals to produce sufficient dopamine to
inhibit the reflex response.

Tina had a little RLS going to sleep - it subsided when she lay on her side.

Some hours later, in the middle of the night, she had RLS sensations
which were stopping her getting back to sleep. These continued when
she lay on her side. In the past I would have handled this with one or
more tyrosine capsules and some percussive massage, which I will
describe in a future message. Last night, I simply applied the Carmex
lip balm to the soles of her feet. A 25mm squeeze of it, for each foot, it
is about 0.07 grams. If we did this every night, a tube would last 71
days. I wrote that this left a "waxy, oily layer", but it is more correct to
say that it rubs into the skin and leaves the skin oily and perhaps a little
waxy.

The rubbing alone, for about 15 seconds, would quell RLS/PLMS
symptoms for one or two minutes. The symptoms reduced and then
disappeared during and after the rubbing. Tina had no symptoms for
the rest of the night.

- 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

Postby Robin-Whittle » Fri Sep 30, 2011 6:27 am

My initial impression was that Carmex was effective for quite a few
hours. However, recent experience indicates it may not be as effective
as this.

For the last three nights and for one or two nights last week I applied
it to Tina's feet and to mine at bedtime - before any onset of RLS/PLMs.
I have had PLMs within an hour of applying it and I think Tina has had
some RLS symptoms as well within an hour or so.

We only have relatively light symptoms, it seems that Carmex was not
able to stop these. Maybe if we used more of it, applying a thick layer
and wrapped it with cling-wrap the effects would last longer.

If there was some cream or lotion which reduced the sensitivity of the
sensory neurons of the skin of the foot arch for several hours, ideally
for 6 to 8 hours, so as to reduce the level of firing when there was no
stimulus, then I think this would be very helpful for mild RLS/PLMS.

Any such cream would probably have few, if any, ill-effects and may
reduce or eliminate the need for drugs such as dopamine receptor
agonists or opiates, both of which have serious side-effects.

I think that the local anesthetic cream EMLA is effective, but it needs to
be covered with cling-wrap or similar for its effects to last an hour or
more. However, it would be quite expensive to use regularly - and I
think it is not supposed to be used regularly.

Such a cream could be used if and when symptoms arise, or every night
before going to bed. It would need to be shown that the cream did not
cause the body to make the sensory neurons more sensitive.

The soft touch sensors in the skin are very sensitive. We probably only
need to marginally reduce their sensitivity to significantly reduce the
RLS/PLMS symptoms.

- Robin http://aminotheory.com
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.

User avatar
Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Postby Rubyslipper » Thu Oct 06, 2011 6:12 pm

I would never knock anything that helps someone live with RLS, especially something as simple and harmless as this. I do appreciate all your work on this and for sharing it with us.

"This reflex response is extremely sensitive, and is normally turned
off by a population of so-far unidentified dopamine-producing
(dopaminergic) neuron output terminals in the spinal cord. There must
be some dopamine receptors which inhibit the interneurons which give
rise to the reflex response. The brain or brainstem evidently activates
these descending dopaminergic neurons most of the time, including
when we are sitting still or sleeping, to prevent false triggering of the
foot withdrawal reflex response. " (And further paragraphs)

I don't want to offend but is there any scientific research to back this up? There is lots of known information here about what helps and causes RLS but where did the rest come from? You may be on to something here and I am glad you passed it on to some researchers. How wonderful if this worked for lots of people! I just wondered about some of your conclusions and statements.
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

Postby Robin-Whittle » Fri Oct 07, 2011 10:03 am

Hi Rubyslipper,

Thanks for your reply. The paragraph you quoted is from the briefest
possible statement of my hypotheses which I have been able to write.

What I wrote to the researchers was much more detailed. In the future -
probably early next year - I intend to develop this section of my site:

http://aminotheory.com/rlsd/

to contain a section for researchers, with full details of my hypotheses,
including all the observations, arguments, further discussion etc. I will
update this according to discussions with researchers and sufferers.

I will include in "researchers" not just the medical and neuroscience
academics, but keen people such as myself from outside these fields
who are researching their own RLS/PLMS or that of someone they care
for.

I also plan a section for RLS/PLMS sufferers who don't have the interest
or time to read all the research. This will include suggestions for non-
drug preventative techniques.

At present this page has the short version of my hypotheses and a few
links, including to this forum. In the next few weeks I intend to add to this
a summary of the non-drug preventives I think may be useful, including
the oral tyrosine and percussive massage I mention below.

It is well-known that dopamine receptor agonists and opioid receptor
agonists both attenuate or stop RLS/PLMS symptoms. If we think of the
PLMs as resulting from the same mechanisms (in the spinal cord) which
produce reflex reactions (which I am sure is the correct way to think of
them) than it follows that the particular reflex circuits can be inhibited,
partially or wholly by the activation of dopamine receptors and/or opioid
receptors, somewhere. Since all the limb-withdrawal reflexes are
generated in the spinal cord, it would follow that these dopaminergic and
opioid receptors are also in the parts of the spinal cord which control the
foot and leg muscles.

The motor cortex of the brain has a set of "upper motor neurons" which
reach down to the spinal cord. These are single cells, and they are very
long. For the foot and leg muscles, this is the lumbar area of the spinal
cord, which is located a little higher than the lumbar part of the spine
itself - about level with the navel. These upper motor neurons synapse
with lower motor neurons, which actually drive the foot and leg muscles.
The upper motor neurons directly activate the lower motor neurons.
For any one muscle, there are typically hundreds of these neurons
operating in parallel. These synapses can be inhibited, including during
REM sleep. They can also be inhibited by reflex reactions which require
some muscles to be relaxed, in order that others can contract. This
includes reflex reactions which lift one leg and transfer weight to the
other. These synapses can also be activated by interneurons within this
section of the spinal cord. There are complex networks of interneurons
and these can activate muscles to withdraw the foot or leg from
noxious stimuli. Likewise, for the arms, in a section of the spinal cord
at shoulder level. If you burn your finger on the stove and watch your
arm go flying in the opposite direction, this is your spinal cord at work
contracting muscles faster than if your brain had to do it, since the
pathways are shorter than if the pain signals had to go all the way to
the head.

The apparent shortage of dopamine in RLS/PLMS is directly correlated
with low iron levels. This is well known and well researched. Iron is
essential for the enzyme Tyrosine Hydroxylase (TH) to work. TH converts
the amino acid tyrosine into L-DOPA, and a second enzyme (which
never gives any trouble) converts L-DOPA to dopamine. All this needs
to happen in the output terminal of whatever neurons which normally
attenuate these reflex reactions in the spinal cord. On this basis, I
assume these output terminals are in the parts of the spinal cord which
control the foot and leg muscles. Exactly where the body and input
terminals of these dopaminergic neurons are I don't know, but it is
reasonable to assume that like other nociceptive (pain sensing)
regulatory neurons, that they descend from somewhere above the
spinal cord (supraspinal), which means, broadly speaking, the brain-
stem or the brain.

This fits well with our observations about how ingesting a gram or so of
tyrosine (available as 500mg capsules or tablets, without prescription
at least in Australia) reduces or eliminates symptoms for several hours.

It also fits well with our finding that percussive massage close to the
spine (don't bang the spine itself - just the ribs and muscles on either
side) at the level where the spinal cord controls the foot and leg muscles
will also generally reduce or eliminate symptoms for a few hours.

(While percussive massage might be safe for many able-bodied people,
I can't provide assurance that it is is safe in general, for anyone. I think
it would be a bad idea to use this with children, frail and elderly people,
or with someone who has a spinal injury.)

I think the most likely explanation for the beneficial effects of oral
tyrosine and/or percussive massage is that the dopaminergic neurons'
output terminals, which are in a localized section of the spinal cord
(probably a column ~1mm or so in diameter, in the dorsal horn of this
section of the spinal cord), are depleting the cerebrospinal fluid in
this localized area of tyrosine. When this happens, they are no longer
able to produce as much dopamine as usual, and the reflex response is
no longer as inhibited as usual. When this shortage of dopamine
becomes extreme enough, I suggest, the reflex response is triggered
spontaneously and repeatedly by the low-level of activations of the
sensory neurons from skin in the arch of the foot which occur even when
they are not being touched. This near activation and actual activation
would explain the RLS sensations and the PLMS movements.

I know of no other neurological condition which involves localized
depletion of a precursor, or of pathological sensations or muscle
contractions resulting from the normal low-level "noisy" random level of
sensory neuron activation. However, noise processes and localized
drops in power supply voltages are common problems for electronic
technicians - so it was relatively easy for me to think of these
explanations.

The big mystery of RLS/PLMS has been why it gets worse with inactivity.

I think this is very well explained by the hypothesis that the localized
shortage of tyrosine, in the cerebrospinal fluid (CSF) in which the spinal
cord neurons are bathed, does not occur when we are physically active.
When we are moving around a lot, the blood supply to this area would
probably have a greater flow. However, even if it didn't we might
hypothesize that the capillaries in that area are capable of supplying
sufficient tyrosine from the blood to the CSF only if we count the
capillaries up to a few mm away from the column in which the
dopaminergic output terminals are located. This is fine when we are
moving around, since the CSF is then being mechanically moved
around in the spinal cord, and so is in constant flux. Although the narrow
(say 1mm) column of spinal cord which contains the dopaminergic
neurons' output terminals is the main consumer of tyrosine in this general
area, and while it can't get its full requirements from the capillaries in that
~1mm column, I suggest they do ordinarily get enough tyrosine because
the CSF is being moved around as we walk, run or perform other types
of large-scale physical activity.

When we sit or lie down for a few hours, this movement of the CSF is
reduced or eliminated. Yet it was this movement which supplied enough
tyrosine to the dopaminergic output terminals. Therefore, more than
a few minutes or hours of physical inactivity will reduce the tyrosine
concentration in the CSF in that 1mm column and those dopaminergic
neuron output terminals will be unable to produce and release as much
dopamine as they need to inhibit the reflex response.

This would especially be the case if due to low iron or some other
problem, the TH molecules in these output terminals were not working
very well. Then, the lower the concentration of tyrosine in the output
terminals, the less dopamine would be produced. This is due to the
lower concentration of tyrosine resulting in it taking a longer time before
a tyrosine molecule happened to find its way into an empty, iron-
activated TH molecule. That longer the time each TH molecule spends
waiting for a tyrosine molecule to drift into its catalytic socket, after the
TH molecule has ejected the L-DOPA molecule it created from the
previous tyrosine molecule, the less dopamine these TH molecules will
be able to produce each second.

Percussive massage in this area can quickly shake up the CSF, so
within a minute or two, relatively high tyrosine content CSF from a few
mm away is moved into the area of the ~1mm column, where the CSF
was most depleted of tyrosine. Within a minute or two, the TH molecules
are back in business, cranking out L-DOPA at a rapid rate, since there
are now plenty of tyrosine molecules being transported from the CSF
across the cell membrane of the output terminal into the cytoplasm of the
cell, where the TH molecules are located. Within a minute or two, we
observe that the RLS/PLMS symptoms diminish or are greatly reduced -
and this reduction typically lasts for a few hours.

So I would say this redistribution, by shaking, of the tyrosine rich CSF
in this section of the spinal cord leads rapidly to a high enough
dopamine production and release to reduce or stop the symptoms.

Perhaps the most dramatic part of this, which Tina and I discovered in
2004, is that percussive massage near the spine at about the level of her
navel would reduce or stop the symptoms in her feet and legs - typically
for a few hours - without having any significant effect on the symptoms in
her hands and arms. Conversely, similar percussive massage on either
side of her spine just below her neck (where the spinal cord controls the
hand and arm muscles) would reduce or eliminate the hand and arm
symptoms, without significantly affecting the foot and leg symptoms.

I think this shows pretty clearly that the pathology of RLS/PLMS is
primarily or wholly in these two sections of the spinal cord (at least for
the foot-leg and hand-arm symptoms) - with no evidence that there is
anything wrong with the brain or the legs themselves.

In August I gained a better understanding of the normal human and
mammalian limb-withdrawal responses, after reading chapters 12, 23,
24, 25, 49 (parts of it) and 5 of:

Alan Basbaum and M. Bushnell eds
The Science of Pain Elsevier Academic Press Aug 2008
http://www.elsevier.com/wps/find/bookde ... escription

While there are still many questions about pain perception and reflexes
(they are both the result of the one spinal system) these chapters seem
to be the best reviews of the field.

There's no mention of RLS/PLMS in this material, and no mention of
dopamine playing a modulatory role as I describe. My hypothesis is that
the RLS/PLMS condition is specific to humans, due to the need to
protect the foot arch (which only humans have) and that this recently (say
2 to 4 million years) evolved system is very new and doesn't work as well
as most other aspects of our nervous system, which are the product of
evolution for tens or hundreds of millions of years. I hypothesise that
this dopaminergic descending control system is recently evolved, in
humans alone, to turn off this new soft-touch foot-arch protective reflex
when it is not required - and it is only required sometimes.

When Tina is suffering from RLS/PLMS, a very light touch to the arch of
her foot (but not the top, the heel, the ball or the toes) will elicit a toes-up
"ankle dorsiflexion" response and typically a secondary response of limb
withdrawal, which is exactly the same as the normal mammalian reflex
responses to a painful sensation at the base of the foot. However, this is
with the lightest touch, such as with the tip of a pencil, and only for the
foot arch.

I suggest that humans developed this super-sensitive, non-pain, soft-
touch activated reflex response by an evolved modification to the
existing reflex and nociceptive system. This system is down-regulated
by opioid receptor agonists, as part of the body's own system for
turning down the pain and reflex responses after a serious and
intensely painful injury.

The newly evolved arrangement adds the outputs of soft touch skin
sensory neurons to the interneurons in the spinal cord which have the
dual roles of sensing pain in the bottom of the foot and of initiating foot
withdrawal muscle actions as a reflex response.

We only need this soft-touch foot-arch reflex response when walking
on potentially spiky ground, including walking in swamps where there
can be spikes of branches, or perhaps sharp rocks. Then, I suggest,
there is some unconscious process in the brain or brain stem which
turns off the descending dopamine producing neurons. This removes
the inhibition and makes the reflex system very sensitive to the slightest
touch - but it is only for acute touch, in a localized area, as would result
from the tip of a thorn or protruding stalk of a plant. The reflex circuit
does not respond to pressure applied to the whole or to a large part of
the foot arch.

When we are sitting or sleeping, we don't need this reflex response and
so the dopaminergic neurons are activated - I guess by some part of
the brain or brain stem. They are probably activated 24 hours a day for
most people in Western society, unless we go walking barefoot outside,
especially across grass which may contain spikes.

I now think that the developmental processes which decide which
sensory neurons activate which interneurons (Chapter 12 of The Science
of Pain) result in the foot withdrawal interneurons being activated not
only by these soft-touch skin sensors in the foot arch, but by at least
some sensory neurons in the torso.

For instance, firm percussive massage of Tina's mid-back, above her
navel, elicits lots of leg movement - but only if she is suffering from
RLS/PLMS symptoms. This action seems to bring relief, since the kicks
stop after a few minutes of this. Also, I have noticed PLMs being
activated by her shoulders being cold! We consistently find that if either
of our lower backs becomes cold, this will also trigger RLS/PLMS
symptoms. I think this is coldness of the skin, rather than the spinal cord
becoming significantly cooled, but both mechanisms might be at work.


So the situation is probably not as simple as if the reflex reactions were
purely triggered by the soft-touch sensory neurons of the foot arch. Also,
some individuals may have had this developmental stage (in utero and I
guess within months of being born) work out in rather different ways - so
this might make them more prone to having RLS/PLMS symptoms.

You can see why it took 32 pages to cover my observations and
hypotheses, with references, for the RLS researchers.

I think that my hypotheses will, after suitable refinement, become
accepted as the best etiological theory for RLS/PLMS. Currently, there
is no accepted theory - and I think I am the first to propose one.

While I have based them on a lot of reading, including of sufferer's
reports on forums including this, and while we have spoken to other
people who find the percussive massage helpful, this set of hypotheses
is not based on the typical research projects or physician's clinical
experiences which are the subject of most medical and neuroscience
research papers. Since I am not a doctor or neuroscientist (I work in
electronics, computer programming and technical writing) I am not
currently in a position to write this up in a journal paper. Also, most
journals wouldn't be ready for an article which is long enough to cover
all the observations and hypotheses.

I understand that most journals have strict requirements about the
research on which their papers are based. They are keen to avoid
encouraging any irregular research, including research which has not
been approved by institutional and national ethics committees. This isn't
just to make their journals look good - it is to avoid any systemic
encouragement or acceptance of research which does not meet all
the relevant standards for protecting the humans or non-human animals
which are involved in the experiments.

So I figure that most medical or neuroscience journals do not want to
see, in the "Materials and Methods" section of a paper, the phrase "my
wife"!

So while I think these hypotheses are based on meaningful research,
and are compatible with everything I have read about the condition,
there is a lot of scope for improving the hypotheses by considering a
wide range of experiences from many sufferers.

Last week we talked in person with a long-time RLS sufferer and her
husband. They had found the night before that even a minute or two
of percussive massage of the lower spine reduced or stopped quite
severe symptoms for several hours - which is something she had
never experienced before. We hope she will try taking tyrosine too.
(Her caffeine and coffee consumption was very low - occasional
super-weak tea or fractions of a teaspoon of instant coffee, so I guess
this was not a major contributor to her symptoms.)

In the months and years to come, I hope to communicate with many
more sufferers and find out more about their condition - and how the
various non-drug preventatives work for them. I will continue
experimenting on my own low-level RLS and Tina's now (thankfully,
after stopping all coffee) low-level RLS.

I hope to engage more with the researchers. I sent the document five
weeks ago, and haven't received a response yet. All but one of them
would never have heard of me before. I figure I will hear from at least
some of them in the next few months.

- 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.

Polar Bear
Moderator
Posts: 7221
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Postby Polar Bear » Fri Oct 07, 2011 10:20 am

Robin: Just to refer back to your initial post in this thread. I got the Carmex lip balm and tried it on the arch of my foot. Unfortunately it didn't appear to have any effect on my WED symptoms.

However, it was very cheap to buy, and without wishing to sound flippant, it is a wonderful lip balm, and also I have found it to be a brilliant softener for nail cuticles.

I wish you well in your quest.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

cornelia

Postby cornelia » Fri Oct 07, 2011 10:51 am

Thank you for your post about the balm. I know your post is to try to help other patients. You have done that in the past with other non-pharma solutions. But please Robin, it can't be true that a lip balm will work for RLS, unless there is a placebo effect.
I think that is the reason not many people will answer your post. But you know, as long as it seems to work for you or your wife I'm really glad for you.

Corrie

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

Postby Robin-Whittle » Fri Oct 07, 2011 12:01 pm

Hi Corrie,

You wrote, in part:

> it can't be true that a lip balm will work for RLS, unless there is a
> placebo effect.

but you don't argue why this particular lip balm couldn't have any direct
physical effect on the RLS/PLMS processes.

As I wrote above, according to my understanding of this condition,
anything which reduces the low level of random activations of the sensory
neurons of skin of the foot-arch would reduce the triggering of the dis-
regulated reflex system.

There's nothing wrong with those skin sensory neurons or this low level of
random activations in the absence of stimulus.

I think the RLS/PLMS problems are caused by an inadequate "design"
of this part of our nervous system, together with low iron levels, anything
which blocks the activation of opioid receptors or dopamine receptors,
and anything which reduces blood circulation or the diffusion of the CSF
in the spinal cord.

If my hypotheses are valid, if a cream contains an anesthetic, and we
apply it to our foot arch and this results in less random activations of
these sensory neurons, then we would expect it to reduce or perhaps
eliminate RLS/PLMS symptoms.

Also, some substances may reduce the level of random activations
even if they do not contain an anesthetic.

I am not suggesting that all lip balms would work. (*Perhaps* any oily
or greasy treatment of the skin might reduce the level of random
triggering - I am not suggesting this is the case, but maybe it is.)

I am reporting that a particular lip balm which contains a compound
(phenol) claimed to act as an anesthetic does appear to work for us.
I am also giving an explanation of why this might be the case.

Only some types of Carmex lip balm contain phenol. Yesterday I saw
an Australian version of the "Original Carmex" lip balm, in a small
glass jar - but it was a different formula, without the phenol.

I am not suggesting this is *the* way to fix RLS/PLMS. I suggest the
most important things are fixing any iron problems and ensuring that
there is no caffeine or coffee - together with general good nutrition
and exercise.

However, if there's some substance which can easily and safely be
applied to the foot arch, which will reduce or eliminate the symptoms
which remain when we have taken every other preventive action, then
this would be good.

While I initially thought Carmex was quite effective, I later got the
impression it was less effective than I first thought.

Clove Bud oil is well known as a topical anesthetic. Its primary
constituent, eugenol, is regarded as having some pain relieving
properties. It is routinely used to anesthetize fish and it is used to relieve
toothache.

I am experimenting with this in various ways. My initial impression is that
it is helpful, but I think it is probably best not to apply it to the skin on a
regular basis without dilution.

The NIH says it is safe to apply to the skin:

http://www.nlm.nih.gov/medlineplus/drug ... l/251.html

** Clove oil contains a chemical that may decrease pain.
**
** Clove seems safe for most people when taken in food amounts,
** but not enough is known about the safety of taking clove by
** mouth in larger medicinal amounts.
**
** Clove oil seems to be safe when applied to the skin. However,
** frequent and repeated application of clove oil in the mouth or on
** the gums can sometimes cause damage to the gums, tooth pulp,
** skin, and mucous membranes.

In preference to trying out Carmex, I am now experimenting with clove
bud oil with (food grade) coconut oil and with isopropyl alcohol (to
displace water in the skin, and to get both oils into the skin more deeply).
Equal parts of all three, warmed initially to melt and then dissolve the
coconut oil, seems to work well.

Since our RLS/PLMS is relatively light, we can't be sure that its
disappearance for the rest of the night after the application of this
mixture is entirely due to this mixture. This has been our experience the
few recent nights on which we have tried it. If this pattern continues over
dozens of nights, then I would be more confident in saying that this
mixture was promising.

I will also try plain coconut oil, with and without isopropyl alcohol. Maybe
coconut oil alone will reduce the triggering. Likewise off-the-shelf
"skin moisturizers" based on mineral-oil, vegetable-oil and/or lanolin.
If they don't work, then maybe adding a small proportion of clove oil will
do the trick.

Please remember that reporting that something seems to work, and
proposing a hypothesis for how it might work, is not the same as saying
it will work for everyone. However, if the hypothesis is correct, then
it wouldn't be surprising if the substance was useful for quite a few
people, at least with lower levels of symptoms.

If someone reading this judges that a substance is safe to apply to their
foot arch, they might try it out and report their experiences here.

- 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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