It’s four o’clock in the morning and I’ve been walking in a tight circle in my bedroom, on-and-off, for three hours.
The feeling I’m battling is hard to describe: an uncomfortable, shuddering, electric almost-pain that is shooting through my legs.
Not long ago I was going up and down the stairs, which proved most relieving for my calves. Before this I was doing yoga poses. Even though my body is driving me on, I’m so tired I can barely open my eyes.
When things calm down, I return to bed for a few seconds until the feeling starts again. And the only way to relieve it is to move. I throw off the duvet, step out of bed, and begin again.
I’m pregnant – and have restless legs syndrome (RLS), a common disorder described by the NHS as an overwhelming urge to move your legs to stop an uncomfortable sensation.
That’s not the half of it. People affected describe it as like fizzy water in their veins; insects crawling beneath the skin; a burning, itching, tingling, or internal pins and needles.
RLS, also known as Willis-Ekbom disease, affects feet, calves and thighs in particular – but can affect your arms and torso, too.
Up to 10 per cent of people in the UK will experience it. It is a common condition but many won’t have heard of it, suggests Dr Julian Spinks, a GP and chairman of RLS-UK.
India Sturgis developed Restless Leg Syndrome while pregnant. The disease affects feet, calves and thighs in particular
Symptoms tend to be worse at night and are linked to tiredness, yet it can prevent sleep, leading to a vicious cycle. As such, RLS is considered a sleep disorder and can cause insomnia and trigger anxiety and depression.
According to Dr Spinks, it’s hard to say exactly what causes it, as it’s ‘so under-researched’.
‘We used to think it was mostly due to low dopamine, the neurotransmitter chemical that sends signals between brain cells and is related to muscle movement, as the drugs that were most effective at treating RLS were dopamine agonists, which effectively mimic dopamine,’ he explains. ‘Now we know this isn’t the whole picture.’
In fact, he says, taking these drugs for too long – ‘sometimes from three years but commonly after five years’ – can make symptoms worse.
Now it’s 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 via the central nervous system, although how, why and the mechanism of action remains a mystery,’ says Dr Spinks.
There may be a genetic predisposition to it. It can also accompany other conditions, such as kidney disease, deficiencies in magnesium and calcium, arthritis, Parkinson’s disease and hormonal changes.
That it’s worse at night could be a clue as to why it happens. ‘We have got a sleep-wake brain cycle,’ says Dr Spinks. ‘So it may be that the changes that happen in the brain when you go to sleep start to bring this on.’
Likewise, some medication can trigger symptoms – including some antidepressants, antihistamines (often taken for hay fever and allergies), as well as blood pressure drugs such as calcium-channel blockers, and lithium.
‘A lot of these have brain effects and make you feel sleepy, which many believe might bring on symptoms,’ he adds. Women are twice as likely to develop RLS as men, possibly because of hormonal fluctuations – especially during pregnancy or the menopause – but also due to lower iron reserves from losing blood through menstruation. It usually develops in middle age (from 40 to 45).
RLS is a bare-faced mystery. As a result, the internet is awash with theories on how to cure it.
Two of the more bizarre ones, which I tried, included putting a rubber band around the middle of each foot (the pressure is said to disrupt the uncomfortable internal signals) and drinking tonic water (which contains quinine, a compound that used to be used to treat leg cramps). Neither worked.
RLS is a common disorder described by the NHS as an overwhelming urge to move your legs to stop an uncomfortable sensation
Having never experienced RLS before, including during a previous pregnancy (my first child is now six), it hit like a freight train, aged 37. When it began, at eight weeks pregnant, whenever I tried to sleep or nap, I dismissed it as yet another weird symptom of growing a small human.
But soon, even just lying in a darkened room reading to my six-year-old felt like torture, so I’d read The Magic Faraway Tree with my legs in the air, ankles circling, bending and flexing, my daughter laughing and telling me that I’m crazy. I felt crazy.
Five years ago this was made official when I was diagnosed with chronic insomnia and generalised anxiety disorder (GAD), which I recovered from, but a return of anxiety and insomnia, however fleeting, is something I was keen to avoid.
As my pregnancy progressed, the sensation became more intense – and was happening perhaps 50 or more times a day. I tried everything: yoga, baths with Epsom salts (magnesium sulphate is thought to help relax muscles), massage (a battery- powered massage gun was fairly effective), rubbing Vicks on to my legs (not sure why, but I was willing to try it), and cutting out sugar (there’s anecdotal evidence this might feed into symptoms for some), caffeine and alcohol (likewise).
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 hot bath and wait in the hope it would ease off once I had my baby.
The drugs usually prescribed – dopamine receptor agonists such as pramipexole or ropinirole, or alpha-2-delta ligands such as pregabalin or gabapentin – are not considered safe to take in pregnancy. I was told by a neurologist I could try clonazepam to sleep – a tranquilliser – but this should be a last resort as there are risks including reduced foetal growth and preterm birth.
My options were, then, a hot bath or a benzodiazepine. With 100 days left of pregnancy I was starting to dread night-time – and I was getting dizzy spells during the day due to being awake for whole nights.
Thank God for Googling in the early hours – I found an article by Professor Guy Leschziner for the BMJ about RLS.
Professor Leschziner is a neurologist specialising in sleep disorders and someone I’ve actually interviewed for a book I’m writing about anxiety.
I emailed him and he came straight back with a few sentences that changed everything – but could be boiled down to one word: codeine.
Codeine is a painkilling opioid that’s considered safe in pregnancy, but as it can cause dependency it is not recommended long-term. It works on the central nervous system and brain, blocking pain signals, as well as RLS sensations.
‘I wouldn’t recommend it widely, but it can be helpful for some people,’ says Professor Leschziner. ‘I prescribe it for individuals who have very intermittent RLS or when a situation would be unmanageable for them, such as during pregnancy or a long-haul flight or car journey.’
I returned to my GP and requested it: codeine is listed as a recommended RLS treatment in the National Institute for Health and Care Excellence (NICE) guidelines. I started taking 15mg.
That first night I slept better – the feeling was still there, but dramatically reduced. The next day my head felt my own again and I could see a way out. In days, as my sleep banks rebuilt, the feeling receded further.
I wish someone had suggested it earlier but, according to Dr Spinks, ‘it’s a degree of luck whether your GP knows much about RLS’, he says, as it’s not on their training curriculum.
Professor Leschziner says while 10 to 15 per cent of RLS patients require medication, the majority manage the condition by testing for low iron and taking supplements or having iron infusions, removing medication that exacerbates symptoms, and using exercise and massage for flare-ups.
Why might massage and exercise help? ‘It’s possible that by getting other sensory input from running or having your legs rubbed you’re creating other sensory neural signals that disrupt the transmission of RLS discomfort or pain.’
As my due date approached, I upped the codeine to 30mg as the symptoms progressed, but I kept sleeping and remained sane. After my baby – a very happy boy – was born in June, I came off the codeine and the RLS disappeared after three weeks.
If I meet it again in life – a risk once you experience it in pregnancy, studies show – I will now be far better equipped, no rubber bands required.
Do I really need…
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