Restless Legs Syndrome: What It’s Like Living With an Incurable Illness

I remember waking up in the middle of the night as a kid, feeling as if I was buried alive in a tight space and trying with all my might to move my limbs, but couldn't.

They flared up only few times a year, mostly when I was stressed or exhausted to the point I couldn't sleep.

I spent my life thinking it was a bad dream or that it was all in my head. I had no idea my experience was abnormal. I don't exactly remember when the problem began, but it went undiagnosed for years.

For most people, there comes a point when you realise it is indeed real and just how bad it is. For me, that came last year, at 25.

Now, I know that I've had Restless Legs Syndrome (RLS) on and off throughout my life, but last year it kicked in hard. It attacked me with a vengeance.

Sometimes, it's a tingling sensation when I simply have to move my legs or I'll go crazy. Sometimes, it feels like pins and needles are pricking from the knee downward.

There's also twitching or jerking which makes me want to jump out of my skin. On worst nights, the tingly feeling morphs into an unbearable burning sensation that spreads to my arms.

These sensations usually occur within an hour of lying down, only at night. I have to get up and move around no matter how hard I try to force myself to shut it down and sleep.

RLS, also known as Willis-Ekbom Disease, is a neurological condition associated with abnormal sensations in the legs. The main symptom is an overwhelming urge to move your legs.

My condition worsened last year, amid COVID-19, when I would writhe in my bed for hours at night.

When I couldn't have my legs confined anymore, I explained my condition to my sister, who is a doctor, hoping she'd have a solution.

But you know, describing it is like trying to explain the feeling you get when you're on a rollercoaster, when you feel your stomach drop and your organs shift.

If you've been on a rollercoaster ride, you would know what it feels like. Imagine trying to explain how it feels if you've never been on one. That's exactly how it is describing the symptoms of RLS.

While my sister did try her best to help, her advice of exercising regularly, eating healthy, didn't make much of a difference.

This was also the time when I had bouts of anxiety attacks which prompted me to see a psychiatrist. He thought it was psychological since mental health issues can also manifest as physical problems.

I was also advised to change my medicines for anxiety multiple times, thinking they could be aggravating my RLS.

Nothing seemed to work. RLS was robbing me of sleep every night, leaving me exhausted, groggy, and further worsening my mental health issues.

The lack of quality sleep affected all aspects of my life. I tried everything and would just about do anything for a good night’s sleep.

via GIPHY

After months of tossing and turning around in bed, all alone, in the dark, wondering what was wrong with me, I finally sought a neurologist.

I got multiple tests to rule out other conditions or deficiencies. My blood reports showed I was absolutely fine. It was then that I was officially diagnosed with RLS – not something psychological but a real, physical problem.

It was a relief when I figured what I had. But that is no comfort when there is no cure for it.

The medicines did help, but there were times when I was unable to get a full night's sleep. When the medicines stopped working, the dosage was increased or I was prescribed different drugs.

Being diagnosed with the condition has definitely been a breakthrough. But I continued to live in dread of these attacks.

What made a big difference was an online support group where I learnt that my suffering was not unique. I wasn't the only one who was unheard, gaslit by people around me. So many of us are misdiagnosed and unheard.

When my family and my closest friends were unable to fathom what I was going through, I surrounded myself with people who were dealing with chronic, invisible illness and validated my experience.

Living with RLS

via GIPHY

There is no single way on how to cope with a chronic illness. I began learning all about RLS, the various triggers, and lifestyle changes. Low-impact, regular exercise, healthier eating habits, practicing deep breathing have made a big difference.

While I stick to them every day, I try my best to not be overwhelmed or let bad days define me.

There are days when I feel like I've been swallowed up by a body. Living with the symptoms can be truly challenging. RLS patients not only struggle with never-ending symptoms, we also struggle with advocating our issues.

We struggle with whether we'll get a good night's sleep or not, the fear of the impact it'll have on our normal functioning. We struggle with being gaslit, being unheard. We struggle with taking a step back from the lives we've built and rebuilding a whole new one.

Seek a good neurologist who will listen to you, and surround yourselves with people who will understand you. It can be your family, your friends or a support group. Figure out your triggers and stick to a routine that works best.

There are good days and there are bad ones. While bad days are a reminder of a loss of a normal life, good days give hope of new treatments.