Restless Leg Syndrome is no laughing matter

Did you ever see a TV ad you weren’t sure was real or a joke? That’s how I felt the first time I saw an ad offering a drug to treat “Restless Leg Syndrome”. It sounded suspiciously like the pharmaceutical industry had run out of real diseases to treat and was inventing new ones just to sell more drugs.

Well, it turns out this is a real problem, as I found out when I had a bout of it (although in my case, with restless arms) that kept me from sleeping. For me, it was caused by a cold medication, and went away after I stopped using it. But for others it is not so temporary. A friend of mine suffers from a very extreme version and as a result has chronic long-term insomnia and must get through life on barely any sleep. If you’ve ever had insomnia, you’ll know lack of sleep is very stressful and can lead to anger, depression, or loss of short-term memory. With RLS, it can also mean an inability to lie down or even sit to relax.

Because “restless leg syndrome” sounds so frivolous, a term with growing use is Willis-Ekbom disease or RLS/WED.

As frustrating as it can be for adults, it can be even worse for children. Of course, kids aren’t great at describing symptoms in the first place, plus RLS/WED may manifest differently for them, getting misdiagnosed or dismissed as attention deficit, hyperactivity, lack of concentration, or simple squirrellishness. Yet it can have a real impact on their learning and socializing, and prevent success in school. Children with RLS may not get enough sleep, but lack of sleep manifests differently in children than adults, not necessarily appearing as sleepiness.

Causes of RLS/WED aren’t well known, although it seems to have a genetic component and sometimes relates to iron levels. It can be triggered or worsened by pregnancy or some medications, although in those cases usually recedes after giving birth or discontinuing that drug.

If you are impacted by RLS/WED, the good news is that a support group is forming to serve the Simcoe region. If you can’t sit still or spend your nights “on the move”, you should check it out. The first meeting will be at 2 PM on Sunday, June 16 in the Angus Ross room at the Barrie Public Library. Discussion will include terminology, symptoms, treatments, supports, myths vs. reality, how to talk to your doctor and give useful information, and other pertinent issues. For more information, email WEDBarrie@RLSgroups.org or call 705-503-3647 to speak with Randy or Cathy. Meetings are open to everyone, whether you or a loved one may have RLS/WED or if you just want to learn more about it.

Published as my Root Issues column in the Barrie Examiner. 

Erich Jacoby-Hawkins is a director of Living Green and the Robert Schalkenbach Foundation.