I have 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’s four in the morning and I’ve been walking in a small circle in my bedroom for three hours, on and off.

The feeling I’m struggling with is hard to describe: an uncomfortable, shuddering, electric near-pain shooting through my legs.

Not long ago I was walking up and down the stairs, which turned out to be the most relieving thing for my calves. For this I did yoga postures. Even though my body drives me forward, I’m so tired I can barely open my eyes.

When everything calms down, I go back to bed for a few seconds until the feeling starts again. And the only way to relieve it is to exercise. I throw away the duvet, get out of bed and start again.

I’m pregnant – and have restless leg syndrome (RLS), a common condition described by the NHS as an overwhelming urge to move your legs to stop an uncomfortable feeling.

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

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

Up to 10 percent of people in Britain will be affected. It is a common condition, but many will never have heard of it, says Dr Julian Spinks, GP and chairman of RLS-UK.

The symptoms are usually worse at night and are related to fatigue. Yet it can hinder sleep, leading to a vicious cycle. As such, RLS is considered a sleep disorder and can cause insomnia and cause anxiety and depression.

According to Dr. Spinks, it is difficult to say exactly what the cause is, because ‘so little research has been done into it’.

‘We used to think this was mainly due to low levels of dopamine, the chemical neurotransmitter that sends signals between brain cells and is linked to muscle movement, as the drugs most effective in treating RLS were dopamine agonists, which effectively block dopamine. imitate,” he says. explains. “Now we know this is not the whole picture.”

He says taking these medications for too long – “sometimes from three years, but usually after five years” – can worsen symptoms.

It is now thought that the most likely cause of RLS is insufficient iron in some parts of the brain. ‘This affects brain function, including dopamine pathways, causing RLS sensations through the central nervous system, although the how, why and mechanism of action remains a mystery,’ says Dr Spinks.

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

That it is worse at night may be a clue as to why this is happening. “We have a sleep-wake-brain cycle,” says Dr. Spinks. ‘So it may be that the changes that take place in the brain when you go to sleep bring about this.’

Likewise, some medications can cause symptoms, including some antidepressants, antihistamines (commonly used 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, which many believe can cause symptoms,” he adds. Women are twice as likely to develop RLS as men, possibly due to hormonal fluctuations – especially during pregnancy or menopause – but also due to lower iron reserves due to blood loss during menstruation. It usually develops in middle age (from 40 to 45 years).

RLS is a bare-faced mystery. As a result, the internet is full of theories on how to cure it.

Two of the most bizarre ones I tried included placing a rubber band around the center of each foot (the pressure would disrupt the uncomfortable internal signals) and drinking tonic water (which contains quinine, a substance used to was used to treat leg cramps). Neither worked.

Having never experienced RLS before, including during a previous pregnancy (my first child is now 6), it hit me like a freight train, at age 37. When it started, when I was eight weeks pregnant, whenever I tried to sleep or take a nap, I would turn it down. as another strange symptom of growing a tiny human.

But soon reading to my six-year-old, even lying in a darkened room, felt like torture, so I read The Magic Faraway Tree with my legs in the air, my ankles circling, bending and flexing, while my daughter laughed and I told you I’m crazy. I felt crazy.

This was made official five years ago when I was diagnosed with chronic insomnia and generalized anxiety disorder (GAD), from which I recovered, but a return of anxiety and insomnia, however fleeting, was something I was keen to avoid.

As my pregnancy progressed, the feeling became more intense – happening 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 quite effective), rubbing Vicks on my legs (not sure why, but I was willing to try it), and cutting out sugar (there is anecdotal evidence that this can cause symptoms in some), caffeine and alcohol (as well).

I went to the GP, discussed it with five midwives, two consultants, a psychiatrist and a neurologist, but no one knew what to suggest other than a warm bath and waiting in the hope that it would go away on its own once I had given birth.

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

So my options were a warm bath or a benzodiazepine. With 100 days of pregnancy to go, I started to dread the night – and during the day I felt dizzy from being up all night.

Thank goodness for Googling in the early hours – I found an article by Professor Guy Leschziner for the BMJ 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 came right back with a few sentences that changed everything – but could be summed up in one word: codeine.

Codeine is a pain-relieving opioid that is considered safe during pregnancy, but because it can cause dependence, it is not recommended in the long term. It acts on the central nervous system and brain, blocking pain signals and RLS sensations.

“I wouldn’t recommend it generally, but it may be useful for some people,” says Professor Leschziner. ‘I prescribe it to people who have very intermittent RLS or when a situation would be uncontrollable for them, such as during pregnancy, a long flight or car journey.’

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

That first night I slept better – the feeling was still there, but dramatically reduced. The next day my head felt mine again and I saw a way out. Days later, when my sofa beds built up again, the feeling disappeared further.

I wish someone had suggested it sooner, but according to Dr. Spinks, “it’s a matter of luck whether your doctor knows a lot about RLS,” he says, since it’s not on their training program.

Professor Leschziner says that while 10 to 15 percent of RLS patients require medication, the majority manage the condition by testing for low iron levels and taking supplements or getting iron infusions, removing medications that worsen symptoms, and exercise and massage for flare-ups.

Why can massage and exercise help? “It’s possible that by getting different sensory input while running or having your legs rubbed, you’re creating different sensory neural signals that interfere with the transmission of RLS discomfort or pain.”

As my due date approached, I increased the codeine to 30 mg as symptoms progressed, but I continued to sleep and stay healthy. After my baby – a very happy little boy – was born in June, I came off codeine and after three weeks the RLS disappeared.

If I encounter it again in my life – a risk if you experience it during pregnancy, studies show – I will now be much better rested, no elastic bands required.

Do I really need…

This week: Smartbud, £29.99, thesmartbud.com

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