Living With Restless Leg Syndrome

“Restless Leg Syndrome? I think I might have that sometimes! The last time I was on a  plane, I had terrible leg cramps.”

leg cramp 200x300 Living With Restless Leg Syndrome Photo

Cramps are not always indicative of restless leg syndrome

For a true Restless Leg sufferer, words such as these can be disheartening. Unfortunately, they can be all too common. Everyone I meet seems to think they have RLS.

However, RLS is actually a very serious condition, as debilitating as any other sleep disorder. That’s part of the reason that the RLS Foundation changed its name to the WIllis-Ekbom Disease Foundation and is lobbying for an official name change.  Restless Leg Syndrome sounds, well, just a little too common!

Restless Leg is not a leg cramp, and it doesn’t have all that much to do with restlessness. It’s not about feeling a little sore now and then, and it’s definitely not insomnia. In fact, RLS doesn’t only affect your legs, it affects other limbs as well. Personally, mine tends to be concentrated in my upper arms. Thankfully, I have been on medication ever since I finally saw a neurologist 10-years ago. Only then did I finally start sleeping normally.

Trying to self-diagnose RLS can be confusing. The symptoms listed online are vague, ranging from “a creepy crawling sensation” to “an uncontrollable need to move your limbs”. With that in mind, here’s what RLS feels like to me.

1. Torture

Sure, this might sound melodramatic, but when my RLS is at its absolute worst, it’s like someone is poking me with a sharp stick every 30 seconds. It doesn’t matter how exhausted I am, or how much I want to sleep, my body insists on waking me up! If you’ve ever fallen into a deep sleep after pulling an all-nighter only to be disturbed every few minutes by construction workers with a jackhammer, you can relate to this frustrating feeling.

 

2. Constant fidgeting

My RLS is also coupled with PLMD (Periodic Limb Movement Disorder) which means that traditional sleep medication won’t help. Taking an Ambien might knock me out like a prizefighter, but I’ll still be moving without knowing it. It’s not only when I’m trying to go to sleep, it also happens on a long bus or plane ride. These days, when I go to the movies, I bring medication with me (otherwise, I risk seriously annoying the person sitting next to me).

 

3. A choice between allergies or sleep

Like many people, I suffer from seasonal allergies. I also have a cat who sleeps on my pillow at night (yes, I’m one of those people) and she’s not going anywhere any time soon. Unfortunately, taking an antihistamine can severely impact my RLS symptoms. This means that  the severity of every allergy attack has to be weighed against my RLS symptoms. If you have noticed a spike in your RLS symptoms during allergy season, this could be why.

 

4. Fear of massages.

For most people, a hot stone massage at a zen spa in New Mexico  would be a cherished luxury. For me, it was painful. I had to clench every muscle in my body to avoid from twitching, and even then, I sent a good four of five stones flying across the room. The masseuse assured me that it was just “the toxins coming out.” I didn’t have the heart to tell her that I have RLS and I had made a terrible mistake. I spent $250 to be miserable. At least the flying stones didn’t break anything.

 

5. Red, red wine.

There is a noticeable difference in my sleeping patterns after even just a single glass of wine. This traditional nightcap might as well be a double espresso, because it will keep me up all night. I thought it was just me, but I have read stories of others having a similar reaction.

Do any of these symptoms sound familiar? Do you notice a worsening of your symptoms after drinking wine, or taking allergy medications? If you suspect have RLS, and know in your heart that what you are feeling isn’t just a typical leg cramp, pay a visit to a neurologist and find out for sure. Personally, it was the best thing I ever did for my health.

Over the years, I have found a few ways to temper my symptoms, such as taking a powdered magnesium supplement, hot baths with Epsom salt, and stretching. But until I went to a doctor and was properly diagnosed, sleeping at night was the hardest part of my day.

Think you may have RLS? Read our Patient Guide to find out how to be diagnosed and treated.

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