December 20, 2022

Food is Now My Only Medicine

By Janice Hoffmann, former RLS Foundation Board Chair

Restless legs syndrome has different manifestations as well as different triggers. Here is my story that can best be described by the Hippocrates quote: “Let food be thy medicine and medicine be thy food”.

Oakley Township, Macon County, Illinois

It is 1958, and my legs ache so relentlessly, so deeply that tears roll silently from the corners of my eyes. I am swaddled in quilts and blankets, writhing on the floor of our living room trying to get relief from the warmth of the fireplace. My feet touch the Motorola that brings Ed Sullivan into our home every Sunday night. My pillow touches Mama’s feet as she sleeps in the Barcalounger, having no other idea how to comfort me other than sitting vigil. The doctor says “It’s just growing pains”.

It is 1958, and Dad is keeping a cow so that we will have fresh milk, because who among us has heard of a sensitivity to dairy, the only questions being how much cream to separate and whether or not to pasteurize.

It is 1958, and Mama is still baking bread and cookies, because who among us has heard of a sensitivity to gluten?

It is 1958, and my tongue breaks out when I eat tomatoes, but that’s what we grow, so I eat tomatoes. Also from our garden, I eat peas and eggplant, both of which will score high on the food sensitivity tests I take sixty years later.

It is 1958, and although I will not know the name of the disease until I am middle-aged, I will suffer from restless legs syndrome for the next six decades. Over the years I will have dozens of prescriptions, both FDA-approved and orphan drugs, most with significant side effects. The worst include spectacular sleepwalking incidents with cooking sessions and outdoor nocturnal strolls; I will fall asleep while driving.

Jet Blue Flight: JFK-LAX

It is 2013, a month before my 65th birthday, and I am counting in slow motion till takeoff; I fight the panic that can spiral. Thoughtlessly, I had packed my restless legs syndrome drugs, so now they are in the belly of the plane instead of my belly, and I have a death grip on the armrests of 23C in a narrow-body thermos bound for Los Angeles. At the moment, my RLS symptoms themselves are not severe, but my PTSD is. I’m fighting neuro-transmitter flashbacks to the myriad times I’ve had to struggle to sit still. If I move as I want to, as I need to, as my body demands, I will become a caricature of mental illness. I am consumed with the struggle not to fidget. I can think of nothing other than when I can next move, stand, or stretch.

Those night crawlers I used to catch in the rain as a kid? They are now inside my thighs. Their mouths clamp on to my kneecaps before squirming throughout the fascia, wriggling amongst tendons and muscles, slithering amidst vessels and arteries. I breathe deeply, sit up straight, and close my eyes. I put my hands on my thighs and feel the movement, trying to gauge how severe this bout will be so that I can prepare for whatever magnitude on the Richter Scale is coming. I sing along with Carole King: “I feel my thighs, move, under my hands, I feel the sky tumbling down, a-tumbling down.”

My recurring nightmare is that I’ll become one of the stories whispered in RLS support circles: I’ll be the person that becomes so obsessed with the need to move, that I’ll end up on a 72-hour psych hold.

When the seatbelt sign is turned off and I can move about the plane, I will confide in the flight attendant, so she knows she doesn’t have to wonder about me.

Claremont, California

Finally, in 2019, at the age of 71, I am diagnosed with food allergies. If I completely avoid gluten, dairy, eggs; if I eschew caffeine and alcohol; if I only eat organic foods free of pesticides, preservatives, hormones and additives; if I avoid a lengthy list of foods from avocados to zucchini, my RLS will disappear completely. Completely.

I start eating a plant-forward, anti-inflammatory diet in my attempt to cure RLS, the disease I have struggled with since the age of ten, and adjunct health miracles happen: I inadvertently cure five additional chronic conditions for which I have taken medications for years. These days, at age 74, without medication, I no longer have high blood pressure, high cholesterol, reflux (GERD), or clinical depression, and my arthritis is under control.

There are no dietary restrictions that are as bad as living with RLS. I have made peace with sleep and awaken rested for the first time in my life.

Janice Hoffmann served on the RLS Foundation Board of Directors from 2005 through 2011, and was Chair from 2008 through 2010. She is a member of the Ekbom Heritage Society and has been a strong advocate and friend of the RLS Foundation for most of our 30 years.hAfter leaving the working farm of her childhood, Janice had two careers and traveled to over 60 countries. Now she spends her Southern California days walking her dog, writing, and reflecting on things done and left undone.