Willis-Eckbom Disease/Restless Legs Syndrom: my life with this disorder
About Restless Legs Syndrome
I'm sitting here at my computer at 2:33AM writing this hub. I am supposed to leave for work in an hour and a half. I haven't slept. I suffer with a severe case of Restless Legs Syndrome. I have found that most people do not have any idea what RLS really is or how it can affect the life of one who suffers with it. In this hub, I want to simply tell some of my experiences with RLS.
Before I share some of my experiences, let me explain a little more about Restless Legs Syndrome. RLS is often confused with another disorder known as Periodic Limb Movement Disorder (PLMD). The two are similar in that there is movement of the limbs. They are different in that limb movement with RLS is voluntary (when awake). Movement helps to relieve a very uncomfortable, even distressing physical sensation. With PLMD, movement is involuntary and does not include the sensation associated with RLS. The only way to get relief from the sensation in the legs with Restless Legs Syndrome is to get up and move.
The name Restless Legs Syndrome is unfortunate because it is misleading. It puts the emphasis on leg movement and doesn't reference the distressing sensation which causes leg movement. Also, legs are not the only parts of the body that are involved. Arms, the trunk and even the mouth can be affected by the sensation of RLS.
Website for the Restless Leg Center Foundation in Rochester, Minnesota
My Experiences With RLS
My first memories of Restless Legs Syndrome, though I didn't know the name then, were of being in church with my parents. From their perspective, I was wiggling, squirming, trying to stand up and being generally disruptive to the church service. From my perspective, my legs felt weird and I knew from experience that if I could stand up, the weird feeling would go away. My parents would routinely take me out of the service and spank me. Remember, this was in the late fifties and early sixties when spanking was not frowned upon. At night, I would be forced by Restless Legs Syndreme to get out of bed to gain relief. I don't remember ever trying to explain the physical sensation in my legs to my parents until I was well into adulthood. If I were a child today, I suppose I would be diagnosed as ADHD.
As I got older, my RLS (still undiagnosed at the time) was only a minor, occasional occurrence. It would affect me in bed or when on long drives in the car. By that time I had simply accepted it. One time, as an adult, I asked my doctor about this strange sensation. That was in the 1980s and my doctor had no clue what I was talking about. I dropped the subject.
Prescription Drugs Can Cause WED/RLS
Drugs which can be prescribed for the treatment of RLS.
Drugs that can CAUSE RLS
In 2003, I had shoulder surgery and was prescribed narcotic pain medication. My RLS got many times worse and never got better even when I stopped taking the medications. I have learned since 2003 that taking certain medications is a common way for RLS to either start or to get worse. Since then, RLS has been a major, disrupting factor in my life. Due to lack of sleep, I am not as mentally sharp at my job and I am usually fatigued which can affect my family and social life. Drugs which can be prescribed for the treatment of RLS.
Red Green Video from Amazon
I will end with this humorous story. A friend and I recently went to see the comedian Red Green (of NPR and duct tape fame). Because of my RLS, I try to arrange to sit on the aisle so that I can get up and move around if my legs start bothering me. We looked for our seats at the show and found them in the middle of the row. I looked right and left, only to see dozens of legs blocking my way. As the show got underway and Red Green was hamming it up on stage, my legs were hamming it up, RLS style, in the cramped space. I was stretching, rubbing, squirming and really looking forward to intermission. That is when Red Green, bless his heart, broke into a multi-joke segment on the humor of the name Restless Legs Syndrome. There I was, resisting the urge to kick the back of the seat in front of me, while Red Green talked about a man who had gotten pulled over by a police officer. While standing outside with the officer, the offender kicks the cop's car. The officer objects and the man says "hey, I can't help it. I have Restless Legs Syndrome." Then he kicks the car again. After intermission, Red Green began the next session with more jokes about RLS. I have to admit, I was laughing along with everyone else.