RLS

RLS (restless legs syndrome) by Patient Zero

Note:  I am not Patient Zero, though at times it feels like it.  🙂

I deviate from our usual one-of-its-kind, VUCA-ready experiential leadership program message today for an important health message... one that I hope will benefit many others.

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Before I begin, there are many resources available for people suffering with RLS, or restless legs syndrome.  I am not affiliated with any of these organizations, and make reference to a select few for those seeking additional information.

RLS Foundation

Johns Hopkins

National Sleep Foundation

Let me begin with a transparent, philosophical comment.  I'm not a big believer in taking medicines to mask symptoms.  This is not to say that I'm opposed to occasional medicines, or shun the medical establishment.

But I hope that this posting will reveal that there are many ways to pursue solutions to health conditions that are more practical, healthy, and effective (or not) than current treatments, since the drugs do not cure the condition, and/or they could be delivering more dangerous impacts to our bodies.

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HELP SOMEONE SLEEP BETTER NOW - SHARE THIS ARTICLE

RLS truly sucks.  It's a nightly drill in sleep deprivation for many people ~ 10 million American adults.

My experience with RLS is life-long, and is probably not unique.  My situation may not translate to everyone who suffers from this condition.  I hope this post will be widely distributed to benefit many of those who suffer.

Please share this article with anyone:

  • you know (or suspect) has RLS
  • has serious insomnia
  • has allergies or reactions to MSG (monosodium glutamate)
  • medical professionals
  • non-traditionally trained medical practioners

What is RLS?  (from the RLS Foundation guide)

"Restless legs syndrome (RLS), also called Willis-Ekbom disease, is a neurological disease that causes an irresistible urge to move the legs, often accompanied by unusual or unpleasant sensations. Symptoms may also involve arms and other body parts. Because RLS most often occurs in the evening, it can severely disrupt sleep and reduce quality of life. RLS can cause significant stress on your relationships, work, family, education or other areas of life by impacting your sleep, energy/vitality, daily activities or mood."

In my case, it causes massive sleep deprivation, which has probably already taken years off my life.

There's nothing simple about it, as there are 2 crucial (not understood at all) predispositions to RLS:

  1. a genetic defect (possibly multiple locations / markers)
  2. an immune system defect / allergy to key substances (ie. neural stimulants... MSG, caffeine)

I believe these causes are complicated by a host of life factors, including but not limited to:

  1. diet
  2. activity levels
  3. mineral deficiency
  4. physical vibration

I did not list potential psychological contributors to insomnia, because I don't want to confuse people who are legitimately trying to resolve their RLS symptoms first.  But you can imagine that if RLS is preventing someone from being able to sleep, it would be perfectly normal for that person (me) to think about, possibly obsess over all of the things going on in daily life.

Lastly, I also contracted another rare neurological medical condition, called Guillain-Barre syndrome, days before my college graduation.  I only site this due to the fact that no one has suggested a correlation between RLS and G-B syndrome.  And I'd be curious if anyone (or a large group of us) else with RLS has done so.

LIFE WITH RLS

Since I’ve been aware of my then-unnamed RLS symptoms since early childhood, I hope my home-brewed observations and coping mechanisms can help you pursue relief.  Try not to laugh too hard.

First stop, the beautiful "river of no return".  This is a stretch of the Salmon River in Idaho which famously received its name from the Lewis and Clark Expedition, as the local Indians warned them not to venture down a stretch where their canoes would be destroyed if attempted.

salmon river

salmon river

During the expedition, I shared a tent with my oldest brother Dee.  He woke up several times throughout the week and wondering "what the hell I was doing" with my legs straight up in the air.  A common method for me to cope with my "jumpy legs" was to raise them vertically, letting a good bit of the blood to drain into my core, while squeezing and punching my thighs and calf muscles.  It's not easy.  Try it.

He made sure to share his observations with my family and everyone else on the float trip.  No matter.  At that time, I thought my condition was so rare that I just filed it away as that freakish thing about Jon.  I'd never met or spoken to anyone else who'd heard of such a weird manifestation.

On the brighter side, my insomnia permitted me to watch the International Space Station with the naked eye, traveling across the sky around 3AM.  Awesome.  I also heard various animals and birds that I'd never heard before, and likely never will again.  No iPhone to record it all back then.

Next stop, way back in time, I remember my Mom patiently massaging my legs trying to help me fall asleep when I was 5 years old.  Many more early childhood recollections of waking up with leg cramps... screaming in pain, unable to unfurl the knots in my calf.  While I'm not sure if there's any connection, as I didn't experience cramps as much later in life, I thought I'd mention it as the unofficial "patient zero".  I still get one now and then.  Brutal.  There's that futile moment when they usually awaken me and I try to minimize the onset, only to lose the fight and have it seize up on me.  Usually end up with a sore leg for a couple days.

By my adolescence, I had found a marvelous technique that helped under the worse of symptoms.  I would lie face down on my pillow and not unlike a seal out of water, arc my torso up off the pillow then slam my head into my pillow.  I'd do this for seemingly hours, though it was probably less than an hour before collapsing, knocking myself out, or simply being too exhausted to continue.  Probably explains why I had such a strong core back then.

I wonder if that's why my parents insisted on me having my own bedroom.  Never asked.  LOL

Last mini tale.  Trying to rest in a sleeping bag at Boy Scout camp.  Ugh.  Seriously.  A sleeping bag, necessary to prevent hypothermia for most people, was awful with RLS.  Constraining a leg that wants freedom of motion to spasm is not a remedy... it's a torture test.

GENETICS
There’s obviously a genetic link, and research has indicated as much.  But I believe it's a bit more complex, due to my family observation.  My mother has regular, but sporadic and less severe symptoms.  My father, two brothers, and my two daughters have no symptoms.  But, my father's mother (paternal grandmother, now deceased) had at least as severe of symptoms as me.  This suggests a maternal linked genome connection, and possibly more than one, as my mom's condition has been much milder than mine.

For those of you using dopamine as a treatment for RLS, a cautionary note.  My grandmother took it late in her life, and it made her condition worse.  She literally could not lie down for a moment without twitching.  I'm not going to second-guess the doctors who probably thought they could "shut her system down" with dopamine.  But she suffered greatly from RLS medicines before her death in her 90s.

DIET
There are dietary triggers.  When I eat foods containing MSG, even MSG in impure forms (there are numerous such chemicals used in restaurant and processed foods), I am more agitated than usual, sometimes much more so.  I still show RLS symptoms when my diet is strictly regimented to fresh fruits and vegetables, though my symptoms are usually less
severe.

More information needs to be provided here to those suffering, as they may not be aware of this linkage.

Processed meats, salad dressings, sauces, and many, many other processed packaged and restaurant foods contain MSG in pure or impure forms.  The most common impure version of MSG is listed as an ingredient as “natural flavor”.  It is a mask.  This needs to eliminated as a permissible food labeling option, not just for RLS but for people with allergies.

The food industry needs to start labeling impure forms of MSG, because the current rules permit them to evade it.  An informed RLS sufferer can then make better choices when cooking at home or eating out.  Too many restaurants either ignorantly or blatantly lie about their use of MSG.

I am a walking RLS + MSG lab rat and can prove it.  Now where's that red button I need to push.  LOL

The economic motive for MSG is clear… it is an inexpensive ingredient that is added to boost “flavor”.  Think of it as a shortcut.  It’s both fast and cheap.  Most people have no idea that MSG is not a seasoning, it’s a neural stimulant.  It shouldn’t surprise anyone with RLS that avoiding MSG is a great way to avoid misery.

This MSG awareness issue will require a “movement” to resolve.

Monosodium Glutamate has caused:

  • headaches
  • severe allergic reactions, including asphyxiation
  • severe headaches
  • breaking out in a rash
  • sweating
  • sense of facial pressure or tightness
  • numbness, tingling or burning in or around the mouth
  • rapid, fluttering heartbeats (heart palpitations)
  • chest pain
  • shortness of breath
  • nausea
  • weakness

A final dietary point.  I don't drink coffee, so I'm not sure of its effects.  I suspect they're similar to MSG.  You may want to consider modulating its use if you have RLS.

ACTIVITY
Physical activity triggers exist.  When I fly on airplanes, normally flights over 2 hours, my symptoms are almost unbearable.  I usually have to get up and pace the aisles - anything to remain vertical, sometimes stretching, anything to minimize symptoms.

Yes, I'm that guy.  I usually sit on the aisle to avoid bothering you.  I've noticed plenty of other people standing on long flights, but asking strangers if they have RLS, particulary when many of them are undiagnosed, isn't a great conversation starter.

The presumption is that the constant vibration is what agitates symptoms.  It's 100% correlated.  I have not found anything short of serious drugs to minimize these symptoms on long flights.  I don't miss my millions of miles on planes.

Hey, one way to look at it is that you'll have guaranteed quiet time... good reading, listening to music, drawing, or otherwise occupy your mind... because you're not going to sleep without Ambien or some other narcotic.  Not for me.  I'd rather watch the curvature of the earth at sunset or dawn.  Sleep is for losers.  Haha.

Someone suggested that it might be sound... low hum on the plane.  I’ve tried no headphones, headphones, with and without noise cancellation, and none of these seems to affect RLS symptoms.

There are rare times when excessive physical activity worsens the condition.  I’ve not been able to correlate which activities or what level of activity is a trigger.  I suspect it’s a mineral deficiency, such as magnesium, iron, or possibly sodium that brings these symptoms on.  This correlates with the research around iron.  I am not deficient in iron, and therefore I’m not taking iron as a supplement beyond my normal daily vitamin.  So, I suspect there may be more to this area of research besides iron.

POSITION
If I take a 20-to-30 minute nap in a horizontal position, as opposed to my favorite lounge chair, my symptoms are usually very serious.  This is really no different than trying to sleep at night, but I mention this for reasons of causation.

Regardless of symptom stimulation situation, simply laying horizontal for a few minutes is a trigger.

I read the research on the condition being correlated with evening time, and while this is technically true, it misses the point.  It's getting horizontal that causes the symptoms, at least for me.  Seriously, what is it about the nerves in Patient Zero's body that want to go crazy when they're horizontal?  Or does the horizontal position simply make their agitation gravitationally "easier"?

My thoughts for some of you sufferers, perhaps you can raise your beds and get relief.  I've tried giant pillows, weird sleeping angles, and nothing seems to work.  Now, if they'd take me up to the Space Station where I can sleep in a vertical position... viola!  Better work, because those dang sleeping sacks would be bad news, and sleeping outside of one would be potentially dangerous.  Who knows what valve I might kick?

This would be an easy sleep study.  Those sleeping horizontal, sleeping on an incline, and in a chair can be compared.  Perhaps the optimal angle can be identified, and / or a new or special bed design can be provided to RLS patients.  Now there's a trigger for modern bed makers!

ALLERGEN
I don’t want to distract from the legitimacy of the genetics of this condition, but I believe that the RLS “mechanism” is more complicated than just genetic defects.  The “dietary” section above is one area for potential avoidance of symptoms.

In my body, RLS seems to behave like an allergy.

I believe that studies into the immune system, allergy mechanics, and dietary triggers would not only gain important insights, it might deliver more practical solutions.  Most of the studies of this condition seem like "swinging at a piñata".  No disrespect to those wanting to smash open a piñata.  But it's as if the research is only be funded to study biology and chemistry.  We are people.  My wish would be that some of them would step outside their myopic paradigm and start evaluating and communicating reasonable treatment protocols without the powerful drugs.  Alas, I know how the whole machinery of NSI, Big Pharma, Medical system delivery works.

Who am I to question their methods.  I'm just one life long experienced "patient zero".

I've already listed things that are not covered by RLS science to-date above.  More below.

Remember, it's not just advancing lab rat science, we've got millions of patients who cannot do the most basic of animal function each night... sleep.

PLEASE HELP US

And so, I reveal the most basic and revealing solution I know.  Take Benadryl.  Other anti-histamines may help you.

Believe it or not, the only consistent relief comes from Benadryl 20 to 30 calm minutes before bedtime.

Some of the latest research into histamines (only in animal studies, for some reason), seems a worthy angle.  Note, that should suggest a potential allergen as a cause.  I've provided one of them above... MSG.  Benadryl seems to interfere with the RLS allergy-like response in my body and calm the hyper-agitation.

Note:  I don’t take Benadryl every night because I don’t want the beneficial response to disappear.  Years after I recognized its positive effects, taking Benadryl still helps but its losing effectiveness, as there are nights when it doesn’t work at all.

God bless my mom, who has said that aspirin, getting up from her bed to walk, and stretching usually gives her enough relief to get back to sleep.  Relief may depend on what genetic variant, specific allergen... in other words, how severe your RLS symptoms are.

FAILURES & SOLUTIONS
What I have learned may be odd, but I believe others may benefit from these experiences.  Here goes...

My paternal grandmother's RLS was dreadful, and her symptoms made worse by taking dopamine.  There's research that backs this finding, so beware because I don't think there's any "going backwards" after the dopamine damage.

When I recently read about opioids being used recently, I got vigilant.  That must stop.  There are better, more sane ways to help people suffering from RLS.  Please don't do that to yourself.

I also have no interest in medieval TMS treatments.  If you want to be a guinea pig for people to send electricity through your BRAIN, be my guest.  I can't imagine what else could go wrong with 90% of your neurons being subjected to that type of "therapy".

I tried an electrical approach once, using a device my oldest brother lovingly bought me for my birthday.  I used a TENS electronic stimulation device applied to my legs.  The TENS device literally triggered my symptoms like a long airplane flight.  Utter misery.  Similarly, very nice mechanical (ala Sharper Image) leg massagers feel great until they get the nerves stimulated enough to create misery.

Your mileage may vary.

I have also tried too many approaches to remember, but among them are:  herbal remedies; seltzer water; Ambien (just to get some sleep… no longer); and most of them exacerbated my symptoms, usually within minutes.  I haven't tried the dopamine drug that my grandmother used late in her life, as it produced cumulatively worsening effects for her.

BORE YOURSELF TO SLEEP

I have been able to distract my brain enough (works about 20% of the time) with an iTunes podcast called “sleep with me”.   When it works, it seems to distract my brain and redirect attention from my RLS symptoms into my ears.  In a nutshell, the podcast is a bedtime story told by a guy that I can only describe as Forrest Gump-like, a bit bumbling, stammering, and goofy.  He tells stories that randomly redirect into oblivion.  I understand that normal, non-RLS insomniacs swear by it.  I'm happy for them, and I see how it works.

The drawback is that I will often wake up an hour or two later, and be back to square one.  It doesn't seem to work in round two at all.

SQUEEZE ME TO SLEEP

The only consistently beneficial physical protocol for me has been for deep, long-lasting (minutes) tissue compression.  In other words, a quick squeeze might feel good, but it seems to take a long, 60 second compression placed in very specific places, followed by a short release, in a repeating cycle over at least 15 minutes is what does the trick.

I learned this by accident when in a state of desperation, I asked my wife (with all of her body weight) to stand on my feet arches, calves, thighs, and lower back.  I cannot explain how much relief this provides when my symptoms are at their peak.  A little toe wiggle while she's smashing my legs is heavenly.  My wife handed over duties to our daughter, so it's not my wife's feet that are special apparently.  LOL

Sadly, it doesn’t last long in the bed.  So, at times, I do this right before bedtime and it gives me enough calmness to permit me to fall asleep before the agitation returns.

I have a good nubby massage roll that can poorly mimic this effect, and in lieu of pestering my wife, I will roll on top of it before bedtime.  I have to literally put my maximum body weight atop the roll for it to provide any relief.  So, there’s something to the long length and the extreme level of pressure that seems to calm my nerves enough to get some sleep.

The invention of a device to provide these deep, multi-location, pressure squeezes, but with no vibration would provide amazing relief for the worst afflicted patients.  Sounds like a patentable invention looking for an inventor.

MANIFESTATION
The origination of the spasms in my body is my lower back.  Although 95% of the time, I only experience RLS symptoms in my lower extremities, in rare instances I experience symptoms in my arms.  The spasms are far less “explosive” in my arms but seem to originate from the same lower back region.

They begin within 10 minutes of my assumption of a horizontal position, and it doesn’t matter if I’m flat on my back or laying on my stomach.  Very rarely, I can lay on my side and by gently rubbing my feet together, I can sedate myself to sleep.  1-in-100 odds are not good enough for a viable solution.

There have been some short periods of time when my symptoms almost abated - a few weeks at a time.  I have not been able to find any correlation to any of my actions in those rare periods - diet, activity, allergens.  My mom and I believe that the acute childhood symptoms were triggered when she used the product “Accent” in her cooking.  It’s pure MSG.

OBSERVATIONS
The surface of my skin, typically only on my calf muscles (but sometimes on my arms), usually only during relatively severe symptoms, will show visible signs of twitching.  I have a "freak show" video attached.  Those are not voluntary movements.  They're completely involuntary.

Note:  This is not painful, but annoying as heck.  If you can imagine being told or telling yourself to relax your body when you climb into bed, and this is going on, relaxation is impossible.

SUMMARY

The awareness and treatment of RLS to-date has been disappointing.  We are told by modern medicine that we have 3 basic options:

  1. run electricity through your brain - where almost all of your neurons are located... hmmm
  2. take a highly addictive pain pill - the same one poisoning and addicting millions of Americans... not me
  3. take a medicine that works in your brain in ways they don't understand - but it's a "natural" substance

I propose that we get more information shared by people OUTSIDE the medical community.  People with RLS suffer symptoms that seriously and negatively affect the quality of life, and shortens their life.  I'd personally prefer that we not have lab rat solutions by institutions whose research to-date shows almost no success.

If you're an RLS sufferer, you have my sympathies, and many of us would love to hear what you've discovered that may have provided you some or total relief.

I shared personal things that I hope you enjoy... in laughter or in relief of your symptoms.