The Waking Nightmare of Restless Leg Syndrome

My insomnia, like everybody else’s, manifests itself in multiple ways. I suffer from a neurological disorder that is under-studied and poorly understood. It’s an ‘orphan disease,’ meaning there are not enough people with the disorder to make further research profitable. It is merely coincidental, but nevertheless usefully symbolic, that the disorder’s symptoms include an inability to stop moving — the physical manifestation of attention surplus disorder.

Imagine being tired and ready for bed. You’ve turned off the lights, brushed your teeth, turned down the blankets and settled your body. Now imagine that just as you are about to lose consciousness, somebody creeps into your bedroom and injects you with an oversized, clown’s-prop needle full of adrenalin. Your mind is still foggy, but your physical body is ready to run a marathon. And the adrenalin won’t wear off for hours, long after the cramps, the seized muscles and the feeling that your kneecaps are being squeezed between two bricks have dissipated.

My mother once told me that I was a ‘kicker’ when I was a baby, and that she had to constantly check me to see if I had thrown off my blankets. But don’t all children do that? I remember an opposite reaction to childhood sleeplessness — obsessively winding myself tighter and tighter into my bedding.

My first bout of restless leg syndrome — full-on, legs-akimbo RLS — as I understand it now, happened in my mid-thirties, which doctors tell me is typical. It was during a hot summer in Toronto, on a night when I was already wide awake from the suffocating heat. The toes of my right foot would not stop pinching inward toward the sole. The resulting muscle spasms crept up my shin and pumped my calf into a hard ball. This went on all night. The next day, I could barely place my foot

on the floor. I wondered if I was having a stroke. My friend Debbie, who was staying in my apartment for a few days and sharing my bed (we always enjoy a good co-snooze, when possible), joked that she figured all that bouncing around in the bed meant I must have been sleep-masturbating.

I went straight to my doctor for a quick fix. He had never heard of such a thing. He tested my reflexes (fine) and heart rate (fine), weighed me (always too fat) and sent me out for a blood test (whose results I never got).

The foot convulsions quickly morphed into flailing legs, and I was kicking Debbie so often her thighs were bruised. She moved to another friend’s apartment.

By the time I’d reached a year of doctor consultations and a wide and colorful variety of self-medicating strategies, I resorted to the last refuge of the unwell – the internet. This was 1999, remember. Like everyone else, I still thought the internet was for porn, conspiracy theories and hate groups. Restless leg syndrome appeared after several false starts (‘stump and gimp’ porn, anyone?). Thrilled, and thinking I’d found a community, I signed up for one of the dozen or so RLS forums, expecting answers and consoling. Typical of any group of people who feel abandoned or overlooked, the forum contributors were a cranky lot, often abusive toward each other and full of wildly contradictory information. Such as the following:

RLS is triggered by salt intake. A salty meal ups the blood pres- sure and high blood pressure dulls the nerves that signal spasms to the muscles. Drink lots of water. RLS is caused by electrolyte imbalances and over-hydration. Take a warm bath before bed. Take a cold bath before bed. Drink camomile/St. John’s wort/evening primrose tea. Camomile contains an enzyme that agitates the tendons in the extremities. St. John’s wort is better applied directly to the skin. Evening Primrose causes constipation, which aggravates RLS. Exercise vigorously before bed, or at least take mild exercise, go for a walk. Never, never exercise less than four hours before bedtime. Wash your feet and hands in pepper- mint oil. Not your feet and hands, your temples. Not your temples, your armpits. Avoid red wine. A glass of port before bed settles the body. Watch a lighthearted comedy before bed. All electronic and/or digital communications, passive or transmitting, must cease after 6 p.m. Leave a glowing light on in your bedroom. Sleep behind blackout curtains. Don’t eat pork. The smell of bacon induces pleasant childhood memories, like the smell of baking bread. Jumping jacks do the trick. Yoga is the cure. Sleep on a hard mattress, sleep on the floor, sleep with a pillow under your back, sleep with your head hanging off the bed, sleep in a cold room, sleep in a hot room, sleep under heavy blankets but keep your body away from synthetic fibres. Let your pets snuggle with you. Pet dander in the lungs and/or digestive system has been linked to RLS. Take Nyquil, Paxil, Aspirin, Tylenol 3, any of the ‘-pam’ drugs, rub Ben-Gay on your shins. Empty your body with laxatives and purify your system of all foreign chemicals. Do a full lymphatic cleanse. A few bars of chocolate before bed trigger serotonin flares, which override RLS. Read a book. The feng shui experts are right – never have materials containing words near your bed, because words carry thoughts and thoughts carry burdens. Light a candle. No scented candles! Speak to your doctor. The medical industry knows nothing and cares less because there are not enough RLS sufferers to make treatment profitable. All the RLS forums are full of crap. Thank you, RLS forum, you saved my life!

The last time I wandered around an RLS forum, a lively discussion was underway regarding the salt/sodium issue, and whether or not Himalayan salts (the pink kind) are a ‘good salt’ or a ‘bad salt.’ One contributor claimed that the lamps made from Himalayan pink salt rocks cured his RLS, another applied a crusty pink jam of monk-sourced salt and organic honey to her legs before bed …

I’m not making fun of my RLS community, such as it is (okay, yes, I am making a bit of fun) – these are desperate people desperately looking for answers to a disorder that nobody fully understands and that the medical world appears to have abandoned. So, of course there are aggravated debates, of course people reach out to pseudo-science and alternative medicine – or outright witchcraft (which is at least more empowering, as the sufferer is given tools and rituals to negate the disorder’s power – a seductive and, in my view, wholly acceptable option).

My point is that within the RLS community there is so much division and frantic cure-seeking that people, already sleep-deprived, tend to lose their grip on the real problem. We focus on infighting and our excessive reliance on – indeed fervent devotion to – a singular practice or set of practices, instead of compiling shared experiences toward common cause, or, more important, applying collective pressure on the medical industry.

Any discussion of which came first, insomnia or restless leg syndrome, would not only be chicken-or-egg pointless, but also neglectful of the fact that insomnia is an umbrella term that describes multiple, usually entwined symptoms that feed off each other. There is no such thing as single-symptom insomnia, no insomnia without an underlying cause or subsequent affliction.

An orphan disease, RLS is so alone in the medical family, it is primarily described as a syndrome because no one knows what it really is: a symptom, a disease, a condition … Syndrome seems to be the most successfully vague diagnosis, the one that satisfies doctors, who have to say something, and sufferers, who need a label.

The phrase is awkward, embarrassing to speak out loud. Tell someone you can’t sleep because you have restless leg syndrome and the jokes come thick and fast, along the order of ‘Me too, but then I just roll the wife over and she takes care of it.’ RLS is a diagnosis fit for a Benny Hill running (literally) gag, an Adam Sandler set-up line. You can hardly blame the zinger makers. The disease sounds like a pop-and-lock move. I hate saying ‘restless leg syndrome’ out loud, in full form (but if you just say ‘RLS,’ you have to explain the acronym, and then it sounds like a joke set-up anyway). Sometimes I shake my legs when I say it, do the joke myself, preempt the gag reel.

No two RLS attacks are exactly the same, and no two RLS sufferers display the same reactions, but RLS is generally described, rather uselessly, as the inability during sleep to stop the body from involuntarily stretching, jerking or tightening then loosening (primarily) the leg muscles. If only.

RLS insomniacs will tell you that the leg muscles are only the beginning, a good night. In my own experience, I have bobbed my head up and down in violent jolts, flapped my arms about as if I’d been stung by a hornet, clenched my jaw and the muscles around my chin until my ears rang, laid in bed with my back and shoulders soldier-at-attention style, pinched my butt cheeks together until my sphincter hurt and performed elaborate ‘bed calisthenics’ (insert your own Benny Hill joke here) – rubbing my feet together non-stop for hours, performing stomach-down high kicks, launching a leg, or both, out from under the sheets repeatedly until only my midriff is covered – all while half-awake, during that state of near-sleep when the mind is almost ready to quiet. RLS is sneaky that way – it kicks in only when you are finally settled, finally have your pillows and blankets just right, after the weight of the day begins to lift.

By the end of that terrible RLS-possessed summer, three hours of sleep a night was a winning evening. I was fragile and touchy. I craved cheese and ate it by the pound. I gained thirty pounds in four months. RLS also brought out my latent (but not by much) obsessive-compulsive behaviors – the usual fears and anxieties, the double- and triple-checking of locks, fridge doors, light switches and unclean hands, as well as a quick-thrill/remorse/repeat compulsion to shop daily, to begin idiotic collections of objects (usually holiday- or seasonal- themed), only to dispose of the items a few days later, and, most dangerous, to shoplift. Shoplifting is a crime, but it is also a compulsion, and, as I later learned through talking to doctors, compulsive behavior is both triggered by and a trigger for insomnia.

Boyfriends came and went during this time as well – nice enough men who always read my inability to snuggle and loll in bed with them as a rejection of either their bodies or of intimacy. When I explained that I was a ‘kicker,’ they would make that sad face a parent makes at a child they know they have caught telling a whopper. So, off they went, pushed away in all senses.

When your bed becomes the place you go to every night to endure an unstoppable torment, not a place of refuge and quiet, you lose all perspective on the world outside your bedroom because you have no ‘safe space.’ We are brought up from infancy to appreciate our beds and bedrooms as spaces that provide quiet, rest, solace and pleasure. When that core safe space becomes a site of discontent, physical discomfort, a space one associates with a betrayal by one’s own body, you begin to see the world outside your bedroom as being similarly fraught, full of devilish torments and tormentors. So you go online and have a nasty argument about pink salt, because you live in a world where every night you have an argument with your own body. You’re trained for combat, and anybody who suggests your latest partial cure for RLS might be less than effective is just looking for a fight.

Excerpted from Bright Eyed: Insomnia and Its Cultures, by RM Vaughan, copyright 2015, Coach House Books.