For the people it affects (and anyone who shares a bed with them) restless legs syndrome (RLS) is a torturous condition.
Known medically as Willis-Ekbom disease, RLS is described by the NHS as an overwhelming urge to move your legs that is usually worse in the evening, nighttime or when you’re relaxed – it only stops when you move.
Those who experience it – and I am one of the 10 per cent of the UK population who do – describe the sensation as like fizzy water coursing through veins, crawling insects or ‘internal pins and needles’.
‘RLS is, essentially, a dysfunction in the feedback loop between your brain and nerve endings in your limbs,’ explains Dr Julian Spinks, a GP and chairman of RLS-UK.
Yet despite being so common, little is known about the mechanisms behind RLS.
It’s thought low dopamine, a chemical that sends signals between brain cells and is related to muscle movement, is implicated, as are low iron stores in some brain parts (which affects dopamine pathways).
But hormonal changes (frequently, in pregnancy), kidney disease, arthritis and possibly Parkinson’s disease are also associated with RLS.
After writing about RLS for the Mail a few weeks ago, including how mine kept me awake for nights on end during pregnancy, I was inundated with messages from readers.
Restless leg syndrome can feel like ‘internal pins and needles’, according to sufferers
Many had endured similar issues and kindly offered hard-won advice due to a frustrating lack of clarity on treatment. The NHS advises lifestyle changes for mild symptoms – avoiding stimulants such as caffeine and alcohol, exercise and massage, and medication if symptoms are more severe.
And some drug treatments have alarming side-effects, including hypersexuality and gambling.
Options readers tried ranged from benzodiazepines to hot baths and old wives’ tales.
‘Without much research or one standout effective treatment, people tend to pile in,’ says Dr Spinks. ‘Success stories expand on the internet and grow wings, especially as different things work for different people.’
I finally found relief using codeine, prescribed by a neurologist (it’s recommended, in some cases, in the National Institute for Health and Care Excellence guidelines). It works by blocking pain signals as well as RLS sensations.
I also waited for my hormones to balance out postnatally, which they mostly have.
But what about the other options readers have tried? Here, with help from leading RLS experts, we sort fact from what you might have heard on the grapevine.
TAKE IRON SUPPLEMENTS
One of the most common causes of RLS is iron deficiency in parts of the brain.
‘If people are suddenly iron deficient then they will develop RLS and if we give them iron it can ameliorate the effect, although the precise mechanism by which that works is not clear,’ says Professor Guy Leschziner, a leading neurologist specialising in sleep disorders at Guy’s and St Thomas’ Hospitals in London.
‘We know iron is necessary for dopamine production and regulation within the brain and spinal cord. If people have lower than normal brain iron stores then how dopamine is regulated changes.’
He suggests asking your GP for a blood test to check your serum ferritin level (a protein involved in iron storage) and if below 75mcg/L you’ll need supplementation (200mg ferrous sulphate up to three times a day for a few weeks to see if symptoms reduce – this is significantly higher than in most supermarket iron supplements and will need to be prescribed or can be bought at a pharmacy).
VIBRATING LEG WRAPS & MASSAGE GUNS
‘Massage can help RLS by producing a heavy stimulus which feeds back through the central nervous system and turns the RLS-element of the brain off for a bit,’ says Dr Spinks.
It’s effectively a distraction for your brain. As for the many self-massage products available, ‘you’re unlikely to do harm’.
I tried a vibrating leg wrap, which did little.
A high-powered massage gun was far more effective when pressed hard into my calves and feet.
Tonic motor activation – a similar technique that uses a ‘TOMAC’ device attached to calves to deliver low-level electrical stimulation – has recently received authorisation from the US Food and Drug Administration (FDA) for RLS and has a number of studies recommending it, including one published by the journal Sleep Medicine last year that found it significantly improved RLS symptoms.
TAKE MAGNESIUM SUPPLEMENTS – OR PUT MAGNESIUM SOAP IN YOUR BED
A wealth of anecdotal evidence exists for magnesium supplements, magnesium creams – or soaking in a bath with Epsom salts (magnesium sulphate).
‘Yet we just don’t have strong enough evidence for magnesium as a treatment for RLS,’ says Dr Spinks.
‘If you are deficient in magnesium it can cause nerve problems, cramps and pain. Much of the time people mistake leg cramps for RLS, which produce intense muscle spasms that RLS does not – and that’s why magnesium works for them. By all means try it, though.’
Some people who suffer from RLS recommend taking magnesium supplements, although doctors say there is no strong evidence yet of their effectiveness
He advises sticking to the recommended daily amount (RDA) for magnesium, approximately 350mg, as too much can cause side-effects such as low blood pressure and an irregular heartbeat.
One of the internet’s favourite suggestions is to put a bar of soap (which contains magnesium) under your sheets by your legs but, says Dr Spinks, that is never going to be effective.
RUB VICKS ON LEGS
I found this suggestion on Mumsnet and various health forums.
‘If this does anything,’ says Professor Leschziner, ‘it could be because you are providing new sensory stimuli to an area of the body that momentarily disrupts the RLS signals – not dissimilar to when you hurt your leg as a child and a parent would “rub it better” to reduce feelings of pain’.
I tried it, but it just made a (lovely-smelling) mess.
DRINK TONIC WATER
Tonic water typically contains quinine, a bitter compound from the bark of a cinchona tree.
‘Quinine does not work for RLS,’ says Dr Spinks. ‘It was used for cramps until it was found to bring on cardiac rhythm abnormalities, permanent sight loss or hearing issues in some – so even the guidance for cramps is not to prescribe it any more, which your GP should know.’
Even if quinine did help, you would need to drink six litres of tonic water to get the same amount (500mg) as contained in a standard quinine tablet previously used for leg cramps.
TRY TO SLEEP BETTER
RLS is a sleep disorder and can cause insomnia and trigger anxiety and depression.
Symptoms are also linked to tiredness, meaning a vicious cycle, where tiredness is both the result of restless legs as well as being an exacerbating factor.
‘We don’t know why,’ says Professor Leschziner, ‘although there’s good evidence that if you’re sleep deprived then your nervous system processes pain and sensory signals in different ways: you’ll find sensory stimuli painful at a much lower intensity.
‘So when you’re sleep deprived it’s likely your brain is processing RLS signals more effectively and filtering them out less well.’
He recommends ensuring you give yourself enough time physically in bed, treat insomnia (if that’s an issue) and improve sleep hygiene (no screens before bed, etc).
TAKE VITAMIN B12
In rare instances, low levels of vitamin B12 may contribute to RLS.
‘People with low B12 can develop neuropathy – damage to their peripheral nerves – which can result in tingling, numbness and pain in their legs or feet,’ says Professor Leschziner.
‘Vitamin B12 is essential for the growth, survival and maintenance of cells within the brain and nerves. If a person’s RLS is associated with a peripheral nerve problem, caused by low B12, we would give them B12 injections – but it’s not a treatment for the vast majority.’
TRY YOGA AND STRETCHING, AND AVOID HIGH INTENSITY SPORTS BEFORE BED
Walking and stretching can reduce RLS symptoms in-the-moment and activities such as running and swimming can help you sleep better come night.
Milder exercise, such as yoga, has been shown in studies to be the most beneficial, with research finding that engaging in high-intensity sports before bed can exacerbate symptoms.
‘With yoga, you’ve got the combination of stretching and movement with the element of relaxation and meditation that helps individuals cope with the stress and strain of RLS,’ says Dr Spinks.
HAVE A WARM BATH – OR WALK ON COLD TILES
Hot water bottles, baths or, conversely, cold compresses or walking on cold tiles are common home remedies – and studies show temperature therapy can mildly reduce symptoms.
‘It’s possible hot and cold sensory sensations trick the brain into thinking you are moving your limb, even if you’re not,’ says Dr Spinks.
‘Somehow, temperature sometimes provides a signal that satisfies the brain, albeit temporarily. One study, published in Alternative Therapies in Health and Medicine last year, found that applying either hot or cold water to a pregnant woman’s legs before bed reduced their RLS and improved sleep.
PUT RUBBER BANDS AROUND YOUR FEET
A US doctor, T. Lee Baumann writes about placing rubber bands around the instep of his feet and the ‘impressive’ results that followed in his self-published book on RLS.
I tried it and it didn’t work.
‘This could possibly reduce symptoms in a small number of people by providing a stimulus that answers the desire to move,’ says Dr Spinks. ‘But it’s certainly not a bona fide treatment.’
CUT DOWN ON YOUR VICES – SMOKING, CAFFEINE AND ALCOHOL
There is evidence that caffeine, alcohol and smoking worsen symptoms in some people.
When it comes to caffeine, ‘it can make you sleep lighter and wake more easily and it’s this knock-on effect which is likely to impact RLS’, says Professor Leschziner, author of Seven Deadly Sins: The Biology of Being Human.
Dr Julian Spinks, a GP and chairman of RLS-UK, suggests cutting out alcohol as it can affect restless leg syndrome
‘For some, alcohol seems to affect RLS,’ says Dr Spinks. ‘It’s one of those things I suggest cutting out and seeing if it changes things. Sometimes even a glass of wine can keep people up half the night.’ This could be because alcohol disturbs sleep.
There are more than 7,000 chemicals in cigarette smoke and it’s unknown which might affect RLS, but studies show RLS is associated with smokers.
DIY GARDEN NETTING ‘SOCKS’
One reader wrote to me about wrapping rough garden netting around their calves and using compression socks to hold it in place.
‘Scoff if you will, but for the last six months or so I have had blessed relief. This after 30 odd years,’ they said.
Garden netting, like Vicks or a massage gun, as bonkers as it sounds, may provide relief by disrupting or turning off the RLS sensory signals coming from other parts of the body temporarily.
‘This is new to me and one of the strangest I’ve heard,’ says Dr Spinks.
CHESTNUT GEL
GEL containing horse chestnut extract is believed to alleviate leg conditions such as varicose veins, cramps and tired, aching limbs by improving circulation. ‘There is no evidence for chestnut and RLS,’ says Dr Spinks. ‘It may be the act of massage, and therefore leg stimulation, that provides some relief.’
CUT BACK ON SUGAR AND CARBS
Some people with RLS claim that eating large plates of carbs or excess sugar – which raise blood glucose levels quickly – makes symptoms worse.
‘It remains such a mystery why people find this makes symptoms worse,’ says Dr Spinks. ‘There’s not yet good scientific proof that reducing sugar or carbs makes a difference.’
Professor Leschziner adds that being pre-diabetic or diabetic can cause peripheral nerve damage, which could mimic or exacerbate RLS symptoms and may explain why, in some instances, what people consume appears to have an effect. ‘A simple blood test will diagnose this,’ he says.
HOW YOUR PRESCRIPTION PILLS COULD WORSEN IT…
Some medications can exacerbate symptoms – others can treat them, but may carry the risk of unpleasant side-effects.
Antidepressants, antipsychotics, antihistamines, beta-blockers and some blood pressure or heart medications have been implicated in sometimes worsening RLS symptoms.
‘We know antidepressants and antipsychotics block dopamine transmission, and, as dopamine regulation is related to RLS, the mechanism by which they worsen symptoms is fairly clear,’ says Professor Leschziner.
Professor Guy Leschziner, a leading neurologist specialising in sleep disorders at Guy’s and St Thomas’ Hospitals in London, says that some medications can exacerbate RLS sysmptoms
‘With antihistamines: histamine is an important neurotransmitter within the brainstem and may impact circuits that are going awry in RLS. How the others impact RLS is less certain.
‘Talk to your GP,’ he says. ‘There may be a good reason you are on medication, and coming off would not be safe, but it may be worth asking whether you can pause, reduce or switch to something else for a while.’
AND THE PRESCRIPTION PILLS THAT COULD EASE IT
When it comes to treatment, the first-line recommended drug options for chronic RLS are so-called alpha-2-delta ligands (e.g. pregabalin or gabapentin), traditionally used for epilepsy and chronic pain, and dopamine receptor agonists (pramipexole or ropinirole), used to treat Parkinson’s.
Studies have shown them to be effective, says Dr Spinks, but not all patients respond to them.
Alpha-2-delta ligands cause a reduction in the neurotransmitter glutamate, a major messenger throughout the nervous system. ‘They make some patients dizzy and drowsy – and, like codeine, have potential for addiction.’
The best approach is to keep doses low and resist the temptation to increase them. An alternative is intermittent use when the RLS is particularly problematic.
‘Dopamine agonists can cause augmentation, when symptoms worsen, sometimes after three years, but typically following five,’ adds Professor Leschziner. ‘Or it may occur within months of treatment’.
They may also cause impulse control disorders such as hypersexuality, gambling or binge eating in up to 17 per cent of patients, according to NICE.
‘Having said that, there are individuals for which they are the right choice.’
Clonazepam, a benzodiazepine, is used occasionally but, says Professor Leschziner, should be approached with caution as it can be sedating, particularly in elderly patients, as well as habit-forming.
