What the hell is going on with my legs?

It took me about 10 years before I googled something like, “what’s a strange feeling in the legs at night?”

The first result, “Restless Legs Syndrome (RLS),” which I’d never heard of, matched exactly what I was feeling.

The Mayo Clinic website said, “RLS is a neurologic disorder that affects sensation and movement in the legs and causes the legs to feel uncomfortable. This results in an irresistible feeling of wanting to move your legs to make them comfortable.” [mayoclinic.org]

While visiting a few dedicated RLS forums, it seemed almost everyone was recommending a ‘miracle’ drug called pramipexole. It was even one of the criteria for determining if you had Restless Legs Syndrome RLS or not. If it worked, you had RLS. I went straight to the doctor and got a prescription. It was readily available, often used for Parkinsons Diseases patients. For RLS they recommended a micro dose.

The first night I took it I was expecting some kind of psychodelic experience, but I didn’t really feel any different, until I woke up the next morning after 8 hours of deep sleep. I was completely convinced — it’s a miracle! — along with everyone else on the forums.

I was on pramipexoles for 4 years… the first year I slept like a baby, and then things started falling apart, horribly, until I knew I had to get off that insidiously addictive drug. I even looked forward to taking it at 10pm every night, even though I knew it had stopped working. Stupidly, I tried going ‘cold turkey.’ (Now I know it should be done gradually, weaning off over many months.) It took three attempts — each time 5 consecutive days without sleep. On the 6th day of the third attempt, I got a few hours sleep. I felt like myself again for the first time in years.

It took several more years before I really felt ‘normal.’ Pramipexole is a dopamine agonist, which means it boosts your brain’s production of dopamine — the pleasure/reward hormone, which also controls movement. Apparently pramipexoles make you impulsive, like a gambler. But dangerously, it burns out the dopamine receptors in your brain. The drug also masks the real cause of RLS.

With that monkey off my back, my RLS gradually became milder. And without the masking effects of drugs, I was able to do some serious experimenting on myself to get to the route cause of this monster. After many trial and errors, I stumbled upon something interesting, which seems to explain a lot about what’s going on. That’s why I’ve started this blog, to share what I’ve learned. Hopefully, this will help someone else too.

Those who suffer the horrible malice of Restless Legs Syndrome know very well the full breadth of good sleep hygiene, it’s just that none of it really works when it comes to battling RLS. We are told endlessly the virtues of getting a solid 8 hours of sleep a night. It’s just not possible when the monster lurks.

In my case, I would do all of these and more:

limit caffeine after midday
avoid heavy meals before bed
avoid screens 1 hour before sleep
read a book
take a warm bath
do gentle stretching
keep bedroom cool
use blackout curtains
use white noise
use a comfy mattress and pillows
no alcohol
no smoking
avoid checking the clock at night
aromatherapy
avoid late-night news
use compression bandages
rub magnesium oil on the legs

But when it came time to descend into a dreamy bliss, there it was, the monster, the first hint of RLS sparking the legs. You ignore it, hoping it will pass, but it rarely does. And before you know it, you’re rubbing your legs,  moving around trying to find a more comfortable spot, stretching, more rubbing, push-ups, situps, walks around the room, more rubbing, until finally any hope of sleep goes out the window.

Every night is different because there’s always the hope that tonight will bring a good sleep.

But the reality is, it can take hours, perhaps all night, before the night watchman checks in. Another frustration is staying asleep after going through the most perfect sleep routine only to wake up 20 minutes later with achy legs. There’s no choice but to get up and start again. I would find myself dragging my sorry arse around the kitchen at 4 a.m. completely spent, both physically and mentally, having tried everything to make the monster go away. It doesn’t let you stop moving, like a shark in the water that never sleeps. You try not to look at the clock, but you know exactly what time it is — 3 hours before you have to wake up. And you ask yourself, again, “Why me?”

Often it would turn itself off just as the birds were starting their dawn chorus. The RLS monster would disappear, gone like a thief in the night. A couple of hours sleep and it’s a brand new day, and the night’s struggle a bit of a blur.

Finding help became fruitless. The forums went around in circles recommending this and that drug, only to condemn them years later. I read every research report I could find. Nothing profound emerged, except, one small study from Finland, published more than 10 years ago, that gave me a huge clue…

A wise old man once said the legs are connected to the face.

Listening to the radio one day, I heard a short discussion about the military’s methods to fall asleep within 2 and a half minutes. From memory, it focused on relaxing the face while imagining you are upside in a canoe drifting down a river in the jungle. I tried it, it didn’t work, but of course nothing really works when your are in the grips of RLS.

The face has around 20 main muscles, and another 20 or so deeper supportive and minor muscles. Each emotion engages a combination of these muscles, for instance, a smile contracts both the zygomaticus major (lifting the corners of the mouth) and the orbicularis oculi (crinkling the eyes). And as we know, facial expressions are one of the original communications, before language, and mostly automated. Actors and politicians, of course, are experts at controlling these muscles, but even they give away their thoughts without knowing it.

Just thinking about anything can cause certain facial muscles to contract. Even if you are alone. So the best method to fully relax the face is to not think anything — not easy to do. Japanese Zen buddhists empty their minds during meditation — munoshin (無の心) — while the Chinese monks will tell you that’s impossible, they focus the mind on one point or a single object.

Two sides of the same coin. I gave it a toss…

I was like a rat in a maze searching for any clue I could find to get out of the RLS trap.

I didn’t know it at the time, but all the ideas I gathered would eventually mesh together: face relaxing, hypoxia, dopamine and iron deficiency, DNA, the circadian rhythm, and then there was diet…

One guy I met through an RLS forum claimed he could turn his RLS on and off through diet. It was a fascinating story. He maticulously recorded all his food intake for years and came to the conclusion that what worked for him matched exactly a low-oxalate diet. I had never heard of oxalates, but I soon found out everything I could, and became engrossed, overly so.

Oxalates are what plants produce naturally to boost their defence against animals trying to eat them. They are micro-sized sharp blades. Take a spring onion. The white part has very few oxalates, and the green part is full of them, which has a hash, gritty type texture. The premise is, if you have a leaky gut, these micro sharp pieces pass through the lining of your gut and into your blood stream where they travel around your body and gather in critical places such as joints and also form crystals in your bones. Kidney stones are made up of oxalates combined with either calcium or magnesium, and sometimes ammonium or sodium. The most common type by far is calcium oxalate, which forms when oxalate binds to calcium in the urine.

I even went back to university and studied nutrition. I went religiously low-oxalate: no spinach or dark leafy veges, no almonds, certain fruits were out such as figs, beets, roubarb, no soybeans.. and the list went on. I had previously been a pescatarian for 20 years, and was used to the discipline of controlling what I ate, but this was a whole new level. I was soon running out of food that I could eat, especially when it’s combined with a low sugar and low refined food diet, which was my usual fare.

When you get deeper into the study of oxalates, you find that ‘experts’ blame them for many of our ailments, from arthritis to chronic fatigue syndrome, as they damage the mitochondria inside the cells. It is fascinating, but there is very little scientific evidence to back up the claims.

After about 18 months on a low oxalate diet I didn’t feel any different. My RLS was still raging night after night. I did, however, learn a lot about nutrition and, importantly, how the body worked.

Having realized the limitations of finding a solution through diet alone, the next clue came while travelling through Greece.