Restless Everything Syndrome
Often, in the dead of night, I wander down the hall of my home with so many questions plaguing my mind. I try so hard to shake it off, to think happy thoughts and just immerse myself in positive thoughts and energy, but my mind never stops wondering: Is it just me? Am I broken somehow? Surely there must be others like me.
I hoped that somehow, someday, there would be a cure for RLS
Having had restless legs syndrome (RLS) since I was about 5 years old, I've always had the hope that somehow it will miraculously go away or at least become seasonal like my asthma. But as I grew, it got worse and worse. Then I started hoping that a cure would definitely be found before I got to my 20s. No such luck.
Eventually, I convinced myself that if I had kids, maybe, just maybe, it would finally go away. Nope. Pregnancy and childbirth somehow worsened my case. As a matter of fact, I now have varicose veins and recurring muscle pulls to show for it.
My restless legs syndrome progressed to restless everything syndrome
As time went on, the restlessness in my legs slowly but surely started manifesting in other areas. It started first in my genitals (I have an article detailing that). The restless genital syndrome showed up quite early in life, almost at the same time the restless legs syndrome presented.
Over time, it started presenting in my tongue (bet you didn't see that one coming). Then, in my late 20s, it moved to my fingers, and now, in my 30s, my whole hands can barely stay still. I was checked for chorea and tremor. It isn't Huntington's disease or Parkinson's disease either. Just good ol' restless legs syndrome.
Is restless legs syndrome still the most accurate name?
I wonder, since it's been proven to affect other parts of the body now, is restless legs syndrome still an accurate name for it? Maybe just restless everything syndrome? But I digress.
If you have experienced restless legs syndrome, you know how uncomfortable and how so very frustrating it can be. Now imagine having that same feeling in 3 other parts of your body and feeling it constantly without any breaks in transmission. Welcome to my world.
This is not the quality of life I envisioned
I think about the young ones who, through no fault of their own, have to deal with restless legs syndrome with no cure on the horizon, and my heart just breaks. My kid, my goddaughter, and so many children I know are battling this unseen menace day in and day out.
I look back at my life through the years and the years I still have left, and every time, my chest tightens and tears come rolling down, because this is not the quality of life I envisioned for myself. So I ask again, is it just me? Is my case somehow worse than others? Am I broken somehow?
Hope is all we have for future generations
I have so many questions! Is there any hope? Has anyone had their restless legs syndrome completely go away? Is there any serious research happening?
Is the next generation going to have to spend their lives suffering just as I am suffering currently? Are they the generation that would finally call and recognize restless legs syndrome for what it is: a disability?
Are they the generation that would finally find a cure? One can only hope, because at the end of the day, hope is all we have.
How often do your RLS symptoms affect your mood?