“SI only could unplug my legs in the evening, or shove them in a cupboard, double-locked, until morning!” This is what I repeat to myself for four years. Because, tirelessly, between 10 p.m. and 11 p.m., when I was finally calm on the couch, semi-recumbent or seated, very unpleasant twinges seized my legs, complete with tingling and, sometimes, electric shocks. And these impatience can drag on until 3 am. A waking nightmare.
Exasperating! Because the only solution to muzzle the symptoms is to walk, walk, walk. Again and again. Endlessly. By regularly shaking my legs with jerky movements. Over time, I discovered that the cold weakens the intensity of the symptoms, because I also have the feeling that my feet and my calves heat up like after a sunburn.
“This disease is unpredictable and vicious”
Also, I fix frozen pockets of gel, stored in the freezer, on my legs – the jet of cold water being insufficient – and I pace the apartment crying from fatigue as much as from anger, especially on Tuesday evenings, because It bodes well for a wasted Wednesday with my kids. One more, where I’m going to be next to my pumps, sleepy. Professionally, I am a logistician and I made several careless errors, which could have been detrimental.
I come to apprehend my evenings with a lump in my stomach, because this disease is unpredictable and viciousit sometimes leaves a little respite, we think it’s finally settled down, and boom!, it starts again.
And falling asleep is only part of the problem, because some nights my legs jerk when I sleep, called periodic motions. Result: I have multiple micro-awakenings, which do not always wake me up completely, but my husband does. I end up proposing to him to make room apart. The double penalty… But he refuses. His love carries me through this ordeal. Because, after four years of chaining nights that are rarely restorative, I am exhausted, with zero morale.
Doctors blame my veins
I however consulted quite early, but my general practitioner detected a venous insufficiency, corroborated by an angiologist, with a Doppler. The insufficiency is minimal, but real. As I had a twin pregnancy, only sixteen months after my eldest, incriminating my veins seemed logical to them. During these years, I therefore accumulated compression stockings, elevation of my legs – which aggravated impatience -, capsules of red vine and butcher’s broom, in vain.
The click comes from a TV report on restless legs syndrome (RLS), where I recognize myself.
A disease that is part of sleep disorders
I immediately go back to my GP, who finally sends me to a sleep centre. I see right away that the neurologist is on familiar ground, she tells me that RLS is part of sleep disorders and she confirms the diagnosis, which I made on my own…
I immediately do a blood test for ferritin, which evaluates the body’s iron stores, because a deficiency in the brain can promote the syndrome..My level is normal, the neurologist then evokes a possible problem of dopamine in the brain. The agony of my life!
I immediately think of Parkinson’s disease, which one of my aunts has, I see myself diminished like her. But the two diseases have nothing to do with each other. My treatment initially consists of taking high doses of L-tyrosine, an amino acid precursor of dopamine, which helps the brain to manufacture dopamine for 6 months, but it is not conclusive, the impatience is just a slightly less strong, but just as frequent.
I then switch to dopamine in medicine. The nausea is daily at the beginning, but is it related to my apprehension of the treatment or to its start? It still works. I have now rediscovered the pleasure of sitting in the evening at the cinema, at the table with friends or lying down to read. This disorder is not fatal, of course, but we really suffer. To thank my husband for his support, I asked for remarriage; I have confidence in my legs for our second wedding dinner, they will hold up well!