Oh, Shoot! It's Morning Again: A Look at My Daytime RLS

During a recent discussion about restless legs syndrome (RLS) – I talk about it wherever I am and to whoever will listen – someone called RLS a “night sickness” and for some reason, that triggered me and made me truly, truly angry. I reacted more than I normally would!

It didn’t help that I had zero sleep the previous night and the whole day had been so very miserable.

"Nighttime sickness? Are you kidding me? I wish!"

I turned my heel, huffed quite dramatically and just walked away because if I engaged any further, it would have definitely escalated. The poor man didn’t deserve that much backlash over one comment — a very uninformed comment but a non-malicious comment nonetheless.

Yes, RLS can occur during the daytime

Most people without RLS, and even some people with RLS, do not fully understand the scope of RLS. I don’t even think anyone does.

Sleepless nights, moving and kicking all night...everything has been about the night. A lot of people do not realize that for some, the day is even worse! At least at night, you can toss and turn and just be upset and even eventually get in an hour or 2 of sleep.

The day is a different story.

Getting through school was not easy

RLS has caused people to fail exams, drop out of school, and quit jobs. These are things I have seen and some I have experienced. I left mid-exams during my SSCE exams in high school because my legs just wouldn’t stop, and I couldn’t concentrate because of it. I kept moving my feet and the examiner thought I was cheating! After a while, I couldn’t take it anymore, so I turned in my half-written paper and exited the exam hall.

I cried all the way back to my boarding house because I was sure that I was going to fail an exam for the first time in my life. I didn't! How I managed a D, I still don't know. This went on to happen to me during university as well. My GPA was good; it could have been great!

Fears and anxieties

Daytime RLS can drive you crazy! I have had to leave work one time too many times because I felt like cutting off my own legs. Daytime RLS has caused me so much anxiety and frustration and is still doing so to date!

I am terrified of traveling, going to concerts, going to the movies, or even going out on dates that involve sitting for a period of time. My doctor prescribed a dopamine patch a while back, which worked well for a while until augmentation set in.

Few relief options for daytime RLS

We don’t talk about daytime RLS as much as we should, and I think it is actually worse than nighttime RLS. I know so many people have a plethora of stuff that helps them, like taking a walk, exercising, getting a massage, warm baths, etc.

These have even helped me at one point or another, but for people like me with chronic RLS in the day with full-time jobs that keep you situated, it just isn't very realistic.

Impossible situations

A lawyer battling daytime RLS can't just say, "My Lord, I need to take a break from defending this client and take a quick run."

A surgeon mid-surgery can't say, "Oh, by the way, I'll leave this patient wide open and go get a quick leg massage, be right back."

A customer service agent can't just hang up on his or her clients or just walk out of the office.

Tears of frustration

At least 3 times during working hours, I go into the washroom to shed tears of frustration! I kick and move my legs. I've even taken to bringing a skipping rope and hot water bottle to work to no avail.

Two and a half decades of restless legs syndrome and it just gets worse the older I get. I am working with my doctor and therapist to try to find a workable treatment; I know there's no solution, but anything is better than what I'm currently going through.

We are in this together

This isn't a "so and so number of things you can do..." type of article but words born out of my pain and sadness to let you know that I see you, I hear you, and I'm right there with you. To let you know that I will not stop talking about RLS or sharing our stories, no matter how difficult or frustrating it gets.

One day, I hope RLS research gets the funding it deserves so the generations to come won't have to suffer like we are. Until then, we keep pushing!

Oh, shoot. It's morning, again!