The first time I tried to tell my parents my legs hurt, I was 8 or 9 years old. We were on a road trip from New Hampshire to Virginia when I told them, "I need to move, my legs hurt." There were no rest stops for miles, and the more I bugged them, the more annoyed they got. I remember getting the feeling, Wow, they think I'm crazy.
The sensations in my legs stayed with me as I grew, but I kept quiet. I didn't bring it up again until I was 20, when television commercials for Requip began airing. Finally, I had an explanation, and my parents understood that it was a real problem: restless legs syndrome, or RLS.
When I went to see my doctor, I told her my symptoms (I fit the four criteria necessary for diagnosis) and she confirmed my suspicions. I was tested for iron-deficient anemia, a common cause, but I seem to be one of the many patients who has RLS for no known reason.
There was only one medication on the market for RLS at the time, which had just recently been approved. One of the side effects was drowsiness, and I work with kids; I have to be peppy and ready to go! Being sleepy isn't fun for me. So I opted not to go on prescription meds at the time.
My doctor suggested I take Tums at night, because the calcium in them might help relax my muscles. That didn't work very well for me, but I did find that leg stretches before bed seemed to help me fall asleep more easily.
What RLS feels like
Whenever I'm sitting still, my legs start to feel tight. You know that feeling after a really tough workout? Well it's like that, only for hours versus a couple of minutes after the gym.
On a really bad day I'll have that kind of tightness and, if I ignore it, my muscles will feel like they'll explode if I don't get up and move. That's the only way I can describe it. My leg muscles feel like they're twisting and expanding and I know if I don't move them I'll go insane. I'll be sitting and jump up all of a sudden in one second flat because I'll have this crazy urge to move.
How RLS affects social life
I can go out to dinner with a friend and be fine, but if we go to watch a movie my legs will start acting up as soon as I sit back and relax. I'll cut my night short even if it's only nine o'clock so I can go home. I'll just tell my friends I'm tired because I know I'm not going to be able to sit and relax with my legs bothering me the whole time. I'd rather go home and be free to move around, or now that I'm on medicationtake a pill and go to bed.
Long car rides? Forget it, unless we can stop every half hour or so for me to get out and walk. And if I have to fly, I always pay extra or request an emergency exit aisle, because there's room for me to move my legs.
I warn everyone that I have RLS, and a lot of times they'll just laugh or play it off. It's not until they start hanging out with me that they believe it. One friend didn't believe me until she had me over for dinner. I just had to get up so I started cleaning the kitchen and that's when she finally noticed that I really do have a problem.
Turning to medication for relief
Some days are better than others, but my case seems to be totally random. Some people say that avoiding caffeine or exercising helps them control it, but I haven't picked up on any patterns; it's just that all of a sudden I'll have a really horrible day, and then the next one won't be nearly as bad.
Last year my RLS got worse and was really starting to interfere with my daytime activities. I had trouble sleeping at night too: Once I would lie down, I would be up for at least another half hour, moving my legs and changing positions constantly. Eventually I'd drift off out of sheer exhaustion, but it was such a frustrating feeling.
I revisited the idea of prescription drugs, now that they've been on the market a while and seem to be helping a lot of people. My doctor prescribed Mirapex. I take one pill 30 minutes before bedor before a play or a movieand it works wonders. I can actually sit still for more than an hour at a time now.
I try not to take Mirapex every night; on some good days I'll skip a dose, thinking I'll be OK without it. But more often then not, my legs start acting up once I lie down and start to drift off. A few weeks ago I went to visit my parents and forgot my pills. It was just one night, but it drove me crazy. I was so happy to get home and have a good night's sleep again!
I know I'll probably have RLS forever, but I'm not worried about it anymore. I'm thankful my case isn't that serious and there are worse things I could have. As long as my medication works and I can lead a normal life, I won't complain.