What We Know About RLS

Understanding Restless Legs Syndrome

A simple guide to understanding what RLS is, how it affects people, and what we can do about it.

What is Restless Legs Syndrome?

Restless Legs Syndrome (RLS) is a condition that makes you feel like you absolutely must move your legs. It's not just being fidgety - it's an overwhelming urge that feels impossible to ignore.

Most people with RLS describe it as uncomfortable sensations deep inside their legs. Some say it feels like crawling, pulling, throbbing, or electric feelings. Others just know they need to move their legs to feel better, even if they can't describe exactly why.

The strange thing about RLS is that moving your legs does help - at least temporarily. Walking, stretching, or rubbing your legs can make the feelings go away. But when you stop moving and try to rest again, the sensations often come back.

How Do Doctors Define RLS?

Doctors look for four main signs to diagnose RLS. You need to have all four of these to be officially diagnosed:

1. Urge to Move

You feel like you absolutely must move your legs, usually because of uncomfortable feelings

2. Rest Makes it Worse

The feelings get worse when you're sitting still or lying down trying to rest

3. Movement Helps

Walking, stretching, or moving your legs makes the feelings better (at least while you're moving)

4. Worse at Night

The feelings are strongest in the evening or at night, especially when you're trying to sleep

Important: It must affect your life

For a diagnosis, RLS also needs to be bothering you enough that it affects your sleep, daily activities, or quality of life. Everyone's tolerance is different, but if it's causing you problems, it's worth talking to a doctor about.

How Do You Know if You Have RLS?

Many people with RLS go years without knowing what they have. They might think it's just "being restless" or that everyone feels this way sometimes. Here are some signs that what you're experiencing might be RLS:

Common Signs You Might Have RLS:

  • You can't sit through a movie without needing to move your legs
  • Long car rides or plane trips are torture because you can't keep your legs still
  • You have trouble falling asleep because your legs feel "weird" and need to move
  • You wake up tired because your legs kept you awake or woke you up
  • Your partner says you kick or move your legs a lot in your sleep
  • The feelings get worse when you're tired, stressed, or have had caffeine

What RLS Feels Like (in people's own words):

"Like bugs crawling under my skin"
"Electric feelings shooting through my legs"
"Like my legs want to jump out of my body"
"A deep ache that only moving helps"
"Like I need to stretch but stretching never feels like enough"
"Just an overwhelming need to move - can't explain it"

If several of these sound familiar, especially if they're affecting your sleep or daily life, it might be worth talking to a doctor. RLS is very real and very treatable.

Why is RLS So Difficult to Treat?

RLS can be frustrating to treat, and there are several reasons why finding the right solution can take time. Understanding these challenges can help set realistic expectations.

Everyone's RLS is Different

What works amazingly for one person might not help another person at all. Some people have mild RLS that only bothers them occasionally, while others have severe symptoms that affect them all day. The triggers, timing, and severity vary greatly between people.

We Don't Fully Understand the Cause

Scientists know RLS involves the brain, iron levels, and certain brain chemicals like dopamine, but we don't have the complete picture. Without knowing exactly what causes it, treatments often focus on managing symptoms rather than fixing the root problem.

Medications Can Make Things Worse

Some RLS medications can actually make symptoms worse over time (called "augmentation"). This means what helped at first might eventually make your RLS spread to other body parts or happen earlier in the day. It's like the medicine stops working and backfires.

Many Doctors Don't Know Much About It

RLS affects millions of people, but many doctors haven't learned much about it. Some might dismiss your symptoms or not know about newer treatment approaches. This can lead to delayed diagnosis or outdated treatments that don't work as well.

It Can Change Over Time

RLS isn't always the same. It can get better or worse with age, stress, health changes, or life circumstances. A treatment that worked perfectly for years might suddenly stop working, or symptoms that were manageable might become more severe.

The Good News:

While RLS can be challenging to treat, most people do find relief with the right approach. It often takes some trial and error, but there are many different treatment options available. The key is working with a knowledgeable doctor and being patient while finding what works for you.

Can RLS be Cured?

The honest answer is that we don't have a cure for most cases of RLS yet. However, this doesn't mean you're stuck with suffering. Many people find treatments that work so well that their RLS barely affects their lives anymore.

Sometimes RLS Can Be "Cured"

In some cases, RLS is caused by something fixable:

  • Iron deficiency: Taking iron can completely eliminate symptoms
  • Pregnancy: RLS often disappears after giving birth
  • Medications: Stopping certain drugs can cure RLS they caused
  • Health conditions: Treating kidney disease or diabetes sometimes helps

Most RLS Can Be Well-Managed

Even when we can't cure RLS, most people can find relief through:

  • Lifestyle changes: Exercise, sleep habits, avoiding triggers
  • Safe medications: Modern treatments with fewer side effects
  • Natural approaches: Magnesium, massage, hot/cold therapy
  • Combination treatments: Using multiple approaches together

What "Success" Looks Like for Most People

Good nights:

  • • Falling asleep without leg discomfort
  • • Sleeping through the night
  • • Waking up feeling rested

Good days:

  • • Sitting through movies or meetings
  • • Enjoying travel without leg discomfort
  • • Having energy for daily activities

The Bottom Line:

While we don't have a cure-all for RLS, we have many effective ways to manage it. Most people with RLS can live normal, comfortable lives with the right treatment approach. The goal isn't perfection - it's getting your life back to where RLS isn't controlling what you can and can't do.

Key Things to Remember About RLS

RLS is real - It's not "just in your head" or something you need to tough out. It's a recognised medical condition.

You're not alone - Millions of people have RLS. Many have found ways to manage it successfully.

Treatment takes patience - Finding the right approach might take time, but most people do find relief.

Start simple - Check iron levels, improve sleep habits, and try lifestyle changes first.

Get help - Don't suffer in silence. There are doctors who understand RLS and treatments that can help.

Follow us on Facebook.

Connect with others who understand RLS! Help us to grow a supportive Facebook community to share experiences, ask questions, and find encouragement from fellow members.

Follow us on Facebook!