‘I feel like ants are crawling under my skin’

Restless legs syndrome is much worse than just dealing with a few pesky pins and needles, says sufferer Karalyn Patrick.

Karalyn Patrick has had restless legs since she was a teenager.

Restless legs syndrome, or RLS, can leave sufferers clawing at their skin and struggling to sleep.

Karalyn, 60, has been battling the debilitating disorder since she was in her teens:

“I was about 14 when I’d get a tingling sensation in my legs in bed, like electric shocks or ants crawling under my skin.

It was uncomfortable, but if I wiggled my legs, I’d eventually get to sleep. The problem came and went, and I didn’t worry too much.

Mum had it and she’d walk to ease the feeling.

When I became pregnant, it became much worse.

It was wintertime and in the early hours I’d be pacing the floor or put my feet in a bucket of ice water to stop them burning and the crawling ant sensation spread to my calves.

After my baby was born it went away, but it returned with a vengeance 15 years ago.

This time it felt like an army of bull ants under my skin.

I’d get up at night and do my ironing because as soon as I laid down it would start again. I couldn’t sleep.

My GP referred me to a sleep specialist and a sleep study confirmed restless legs syndrome.

I was put on medication – the first lot made me nauseous and gave me headaches.

Then I tried a dopamine agonist, which is usually used to treat Parkinson’s symptoms but is now a first line treatment for RLS.

That worked, which was such a relief, but gradually my body built up a tolerance to it and it exacerbated my symptoms. Now I am on a combination of the dopamine agonist and opioids.

If I take the tablets at the right time, I have no symptoms, but if I miss my tablets I won’t sleep at all because the crawling ant sensation returns.

People have no idea what restless legs syndrome is like. They think it’s pins and needles – it’s nothing like that. It’s hard to describe how excruciating and exhausting it can be.”

What to know about Restless Legs Syndrome (RLS)

The Sleep Health Foundation says 2 to 5 per cent of people get RLS, and the risk increases with age.

It can occur in pregnancy, but usually goes away after birth.

If your parents have RLS, you have a 30 to 50 per cent higher risk of getting it.

Diabetes, nerve damage, kidney problems and arthritis can also lead to RLS.

“There’s no specific test to diagnose RLS – it’s a collection of symptoms,” says Dr David Cunnington, of the Sleep Health Foundation.

A diagnosis is based on having a strong urge to move your legs that becomes worse in bed or when you sit still for long periods.

A crawling, tingling, itching or prickling feeling in legs and arms is also a symptom.

“People have described it as ‘like toothache in my leg’, ‘like Pepsi in my veins’, ‘like rats clawing at my legs at night’,” says Dr Cunnington.

Treatments for restless legs syndrome

Walking, massage, a hot bath and a heat or ice pack can help milder symptoms.

Maintaining healthy iron levels and reducing caffeine and alcohol may help.

In more severe cases, prescription medication is needed.

Written by Sarah Marinos