I tried everything to cure my restless legs. My GP didn’t know how to help – then a top neurologist prescribed me a very unlikely but common drug

It was four in the morning and I had been walking in a tight circle around my bedroom for three hours.

It’s hard to describe the feeling I’m struggling with: an uncomfortable, chilling, almost electric pain that wracks my legs.

Not long ago I was walking up and down the stairs, which was very soothing for my calves. Before this, I was doing yoga poses. Even though my body is pushing me, I’m so tired I can barely open my eyes.

Once everything calms down, I go back to bed for a few seconds until the feeling starts again. And the only way to alleviate this is to move. I throw away the duvet, get out of bed, and start over.

I am pregnant and have restless legs syndrome (RLS), a common condition defined by the NHS as an irresistible desire to move your legs to stop an uncomfortable feeling.

That’s not the half of it. Affected people describe it as like fizzy water in their veins; insects crawling under the skin; burning, itching, tingling or internal tingling.

RLS, also known as Willis-Ekbom disease, specifically affects the feet, calves, and thighs; but it can also affect your arms and torso.

Up to 10 per cent of people in the UK will experience this. General physician and RLS-UK president Dr. Julian Spinks suggests that it’s common, but many haven’t heard of it.

Symptoms tend to be worse at night and are linked to fatigue, but can interfere with sleep, leading to a vicious cycle. Therefore, RLS is considered a sleep disorder and can cause insomnia and trigger anxiety and depression.

According to Dr Spinks, it is difficult to say exactly what causes this because it has been ‘very little researched’.

‘We used to think this was mostly due to low levels of dopamine, the neurotransmitter chemical that sends signals between brain cells and is associated with muscle movement; “The most effective drugs in treating RLS were dopamine agonists, which effectively mimic dopamine,” he explains. ‘We now know that’s not the whole picture.’

In fact, taking these medications for too long (sometimes after three years, but usually after five years) can make symptoms worse, he says.

The most likely cause of RLS is now thought to be iron deficiency in some parts of the brain. ‘This affects brain functions, including dopamine pathways, and causes RLS sensations via the central nervous system, but how, why and the mechanism of action still remain a mystery,’ says Dr Spinks.

There may be a genetic predisposition to this. It may also accompany other conditions such as kidney disease, magnesium and calcium deficiencies, arthritis, Parkinson’s disease and hormonal changes.

The fact that it’s worse at night may be a clue as to why this is happening. “We have a sleep-wake brain cycle,” says Dr Spinks. ‘So changes in the brain when you fall asleep may start to cause this.’

Similarly, certain medications can trigger symptoms, including some antidepressants, antihistamines (commonly taken for hay fever and allergies), as well as blood pressure medications such as calcium channel blockers and lithium.

‘Many of these have effects on the brain and make you feel sleepy; “many believe this can cause symptoms,” he adds. Women are twice as likely as men to develop RLS due to hormonal fluctuations, especially during pregnancy or menopause, but also due to reduced iron reserves due to blood loss through menstruation. It usually develops in middle age (between 40 and 45 years of age).

RLS is a bare-faced mystery. As a result, the internet is full of theories about how this can be treated.

Two of the weirder ones I tried involved wearing a rubber band in the middle of each foot (the pressure is said to disrupt disturbing internal signals) and drinking tonic water (containing quinine, a compound formerly used to treat leg cramps). Neither worked.

RLS is a common disorder defined by the NHS as an irresistible desire to move your legs to stop an uncomfortable feeling.

Having never experienced RLS before, including my previous pregnancy (my first child is now six), it hit like a freight train at age 37. When it started around the eighth week of pregnancy, every time I tried to sleep or take a nap, I dismissed it as just another weird symptom of growing a little human.

But soon, even lying in a dark room reading a book to my six-year-old started to feel like torture, so I read The Magic Far Tree with my legs in the air, my ankles twisting and bending and stretching, my daughter laughing and telling me I was crazy. I felt crazy.

It became official five years ago when I was diagnosed with chronic insomnia and generalized anxiety disorder (GAD) and I was in recovery, but the return of anxiety and insomnia was something I wanted to avoid, no matter how short-lived.

As my pregnancy progressed, this feeling became more intense and would occur perhaps 50 or more times a day. I’ve tried everything: yoga, Epsom salt baths (magnesium sulfate is thought to help relax muscles), massage (a battery-powered massage gun was pretty effective), rubbing Vicks on my legs (not sure why but I wanted to try it), and cutting out sugar (there’s anecdotal evidence that this can fuel some of their symptoms), caffeine, and alcohol (ditto).

I went to the GP, discussed it with five midwives, two consultants, a psychiatrist and a neurologist, but no one knew what to recommend other than taking a hot bath and waiting in the hope that it would ease after having my baby.

Commonly prescribed medications (dopamine receptor agonists such as pramipexole or ropinirole, or alpha-2-delta ligands such as pregabalin or gabapentin) are not considered safe to take during pregnancy. A neurologist told me I could try clonazepam, a sedative for sleep, but this should be a last resort as there are risks such as reduced fetal growth and premature birth.

My options then were a warm bath or benzodiazepines. 100 days before the end of my pregnancy, I was starting to be afraid of the night and was feeling dizzy during the day because I was awake all night.

Thank God for your early Google search – I found an article for the BMJ by Professor Guy Leschziner about RLS.

Professor Leschziner is a neurologist who specializes in sleep disorders and someone I interviewed for a book I’m writing about anxiety.

I emailed him and he immediately came back with a few sentences that changed everything; But it could be boiled down to one word: codeine.

Codeine is a pain-relieving opioid thought to be safe during pregnancy, but it is not recommended in the long term as it can cause addiction. It works on the central nervous system and brain, blocking pain signals and RLS sensations.

‘I wouldn’t recommend this widely, but it may be useful for some people,’ says Professor Leschziner. ‘I prescribe it for people with very intermittent RLS or in situations where a condition would be difficult to manage for them, such as pregnancy or a long-haul flight or car journey.’

I went back to my GP and asked for this: Codeine is listed as a recommended RLS treatment in the National Institute for Health and Care Excellence (NICE) guidelines. I started taking 15mg.

I slept better that first night; The feeling was still there, but it had diminished significantly. The next day my head belonged to me again and I could see a way out. As the days went by, this feeling diminished even more as my sleep banks rebuilt.

I wish someone had suggested this before but Dr. ‘It’s a bit of luck that your GP knows a lot about RLS,’ says Spinks, because it’s not included in their training curriculum.

Professor Leschziner says 10 to 15 per cent of RLS patients need medication, but the majority manage the condition by testing for low iron and taking supplements or having an iron infusion, removing medications that aggravate symptoms and using exercise and massage for flare-ups.

Why massage and exercise can help ‘It is possible that by receiving sensory input other than running or rubbing your legs, you are creating other sensory nerve signals that disrupt the transmission of RLS discomfort or pain.’

As the symptoms progressed as my due date approached, I increased the codeine to 30 mg, but I continued to sleep and remained sane. After my baby – a very happy boy – was born in June, I stopped codeine and three weeks later the RLS disappeared.

If I encounter it again in life (the risk of experiencing this during pregnancy, research shows) I will be much better equipped, there will be no need for a rubber band.

Do I really need it?

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