Ask Our Health Leaders: RLS and Sleep Health Awareness
Last updated: March 2023
Restless legs syndrome (RLS) is one of the most common sleep disorders. The unpleasant sensations that characterize the condition can make it difficult to fall asleep, stay asleep, and fall back to sleep after waking up.1
Every year in March, the National Sleep Foundation celebrates Sleep Awareness Week® to raise awareness for sleep disorders and sleep health.
To help celebrate and raise awareness during this awareness week, we asked our Community Health Leaders all about sleep and sleep health! Here's what they shared:
Do you have a sleep routine or bedtime routine? What are the essential steps you take to try to get the best rest?
I definitely do have a routine that helps me wind down to sleep mode. If I'm in pain, I will have a bath a few hours before bed. I have a decaffeinated tea and do some reading. If I feel a little more excitable, then I also do meditation before bed to calm my brain a bit.
Laura Wheatman Hill
I try to limit screens for 30 minutes before bed. I journal a little bit and read from a paper book (not an e-reader). I keep the lights low and pleasant. I take magnesium before going to bed as well as migraine medication that is a bit sedating so I'm sleepy.
I struggle to follow a sleep routine due to my other diseases, but there are some that are easier to follow than others. Winding down before bed for an hour isn’t always something I can do because of the sudden-onset need for sleep. When I can wind down an hour before, it really does help me sleep better.
One of the major things I was told to do: Don’t check the time in the middle of the night. That is one I can easily do. Even though I have a Fitbit Sense smartwatch on every night to monitor my sleep, I don’t check the time when I am struggling to fall back asleep.
I also avoid blue light in the middle of the night; if I wake up and can’t fall back asleep, I don’t turn on the TV or go on my phone.
When you're experiencing RLS symptoms late at night and are unable to sleep, what do you do?
The first thing I try to do is meditate myself to sleep. This works more than half of the time, and I am very grateful that it does. But when it doesn’t work, usually because the symptoms are either too painful or the movements my legs do to keep sane are becoming something that could wake my husband, I leave the bedroom.
I pace around my little apartment living room and kitchen, stopping now and then to do calf raises for fear of the floor creaking now and then might disturb the neighbours downstairs – I know it doesn’t, but that doesn’t matter to my extremely tired brain at that moment.
Then, when I feel like I am super exhausted and my RLS has calmed down slightly, I will climb back into bed and hope that I fall asleep before my RLS kicks back in.
Laura Wheatman Hill
I will get up and stretch, usually. Sometimes doing some squats or hamstring stretches will help get the wiggles out. I try to get the room cool and make sure I've taken my magnesium. If I'm really stuck, I will take Klonopin®.
Generally, I do not stay in bed when it is severe. It just gives that toss-and-turn mentality, and when my RLS is severe, I'm not going to sleep anyway. I tend to get up and do something that will relax me. I will watch a documentary or read a book.
If the RLS is going nuts, I sometimes stretch or pace a bit. I will take an extra RLS medication and then, while I wait for it to work, I do the things I mentioned earlier.
Pacing the floor is my go-to method of trying to keep the creepiness at bay. I stretch my arms and legs by utilising the coldness of the wall next to my bed, allowing me to stretch my legs up against the coolness. It does help, and especially in the summer when the weather is almost emotionally draining, any relief is a blessing.
Once I have gotten to the point of being able to "see through" the sensations, I can start to distract my mind by watching late-night or early-morning shows whilst I head towards the time my limbs quieten down enough that I can sleep.
What do you feel is the biggest myth or misconception about RLS and sleep?
I think the biggest one, other than the fact that it is not just the legs, is that it is [thought to be] mildly irksome and irritating rather than insanely aggravating and sometimes painful. A lot of people can't comprehend why it would prevent sleep, since they think it is pretty mild.
Perhaps that is the case for some people, but for me, it has been pretty severe and it definitely prevents sleep. When it is painfully severe, there is no way I can sleep like that. And before diagnosis, those days were entirely sleepless. I used to have severe sleep deprivation, which we all know is unhealthy and certainly made focusing at work difficult.
Laura Wheatman Hill
I was told for years by someone I believed that RLS wasn't real and that I was making up my symptoms. I was then told by a health professional (my primary care doctor at the time) that, unless I had done an official sleep study, I couldn't possibly have RLS. She tried to prescribe me medication I'd taken before (beta blockers) and didn't listen to my concerns.
So the biggest myth is that "it's in your head." While it is neurological, it is also real. You deserve "real" care for it, not someone dismissing you or your concerns.
The most-held misconception I hear is that people think it can be ignored. I compare it to a migraine; similarly, RLS is all-consuming. The symptoms are not a mild sensation that, if you try hard enough, you can ignore.
There is no ignoring the feeling that you must move your legs; the sensation builds and builds if you do attempt to utilise the "mind over matter" theory. The explosive reaction that happens if you try to quell the sensation just goes to prove the forcefulness of the symptom. It simply cannot be ignored.
Is there anything you wish more people knew about sleep and sleep health?
Laura Wheatman Hill
If you are not sleeping through the night, it's worth investigating. I had RLS for years before I realized it was the reason for my ongoing body pain. I didn't realize I was on the wrong medication for my overall health because I discounted my sleep issues and never mentioned them to my medical providers.
Once I handled my RLS, my overall health improved immensely. So, while it felt like a small piece of the puzzle, it made a huge difference to make sure I was sleeping well.
I wish more people knew how important sleep is to our overall health, physically and mentally. It’s also important to know that just because you are sleeping doesn’t mean you are having a good night’s sleep. There are steps we can take to try to help us have a good night’s sleep, and some of them are pretty easy to follow.
Mental Health May Question: On an average day, how would you rate your level of anxiety related to RLS?
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