Out on a limb

Restless Legs Syndrome sounds like a charter for whingers - unless you happen to suffer from it yourself. We can all get twitchy legs occasionally, especially in bed at night. But the full-blown syndrome can ruin your sleep and drive you to distraction.

Up to 10% of us are bothered by an irresistible urge to move our legs, pins and needles and a restlessness which gets better after exercise and worse after sitting or lying still. Like most symptoms, it's worse at night and can seriously disturb your sleep, not to mention your partner's. Like most conditions, it becomes more common as you get older.

Children can have RLS too but they probably don't get taken seriously very often unless they have particularly attentive parents. According to Dr John Shneerson, director of Papworth Hospital Sleep Centre in Cambridge, children with restless legs may be misdiagnosed as having growing pains or even attention deficit disorder.

Restless legs sufferers sometimes describe their symptoms in very graphic terms. "Like bugs crawling under the skin", or "creeping, indescribable, electric current-like". It can make them get up and pace around for hours or toss and turn violently to try to alleviate the unpleasant sensations. Anything that messes up your sleep can mess up your life so it's not surprising to find reports of RLS ruining careers and relationships.

RLS was first described nearly 70 years ago but is now gaining greater medical attention with Britain's first medical conference on the affliction taking place in London next month. But despite the medical, and pharmaceutical interest, it can be hard to be taken seriously by your GP and few sufferers are referred to a neurologist in this country.

It's quite possible that many GPs dismiss restless legs as a cry for attention; a hallmark of depression or anxiety. But it is a recognised neurological disorder, thought to be due to some malfunction in the part of the brain responsible for movement. It tends to run in families, suggesting that there's a gene responsible. Rarely, there's some underlying cause such as iron deficiency, pregnancy, diabetes, a slipped disc or kidney failure. Occasionally, restless legs are a side effect of drug treatment with an antidepressant.

Rather than dismissing you, a GP should examine you thoroughly and carry out blood tests to check iron levels, kidney function and for diabetes. Correcting underlying problems like low iron stores, can help the restless legs but sadly, in most cases, the tests will come back as normal and your doctor will be at a loss.

Shneerson advises cutting down on caffeine, which often makes symptoms worse. "Ask yourself if you've started any new drugs which might be responsible. Antihistamines as well as antidepressants can make it worse." Other useful advice is to keep your feet cool in the evenings by going barefoot or putting a fan on your feet in bed. Stretching, massaging and exercising your legs helps the restlessness but the symptoms often come back. Typically, the sensations and movements start in the evening and continue into the night but are better by the morning.

Because it is a movement disorder, drugs used in Parkinson's disease can be helpful. The drugs carbidopa-levodopa boosts dopamine levels in the brain which helps transmit messages between nerves responsible for movement. The drug helps many though it may ironically disturb your sleep and cause tummy upsets.

The best drug around, according to John Shneerson, is probably ropinirole though it isn't yet licensed for use in restless legs. Pergolide is another drug which boosts dopamine and can be prescribed by neurologists in severe cases. It tends to make you sleepy so is usually only prescribed at night. Codeine-based drugs can help but are potentially addictive and cause constipation and tiredness. Benzodiazepines like Valium often help but are definitely addictive and makes you dopey the next day. Drugs, such as gabapentin, which are used to treat epilepsy, are sometimes advised.

For those who want to avoid heavy duty drugs, Vitamin E, folic acid and magnesium supplements from a health food shop are harmless if you don't exceed the recommended dose.

'I'm a victim and deserve sympathy'

Paul MacInnes says his wife gets the worst of it.

When a young Michael Jackson found he just couldn't, he just couldn't control his feet, he blamed it on the boogie. A generation later, he would surely have known better: he, like me, would realise that he suffered from Restless Legs Syndrome, or RLS. His roving feet were not representative of a state of mind, but a genuine medical condition.

Click on the link marked "I have restless legs!" on the website of the Restless Legs Syndrome Foundation (based in Rochester, Minnesota) and the facts are laid out simply. RLS is an "overwhelming urge to move the legs, usually caused by uncomfortable or unpleasant sensations in the legs".

This unpleasantness is more acute at the end of the day and is known to disrupt sleep. As many as 6 million people are believed to suffer from the condition in the UK, which makes you wonder why we've never heard of it before.

Perhaps it's something to do with the privacy of what goes on behind the bedroom door - even if it is simply the gentle rubbing of aching calf muscles against linen. I have had RLS for as long as I can remember (or "the leg thing" as it's known around our way), but have never sought medical advice, joined a support group or, even, chucked it into conversation at a dinner party.

This may be because, as I see it, my RLS is something of an indulgence. The way my legs will inveterately rub up and down as if working out very slowly on a soft, horizontal exercise bike is the perfect way to send myself to sleep. Sure, I only perform the actions because my muscles are aching, but I find fatigue a reassuring sensation at the end of a day - almost as if I'd done something more taxing than sitting plonk in front of a desk.

Gradually, as the rhythm slowly builds (this isn't meant to sound sensual, by the way, but most people will, at some point, have experienced the pleasurable effects of self-massage), each motion provides a short wave of comfort and relief from a dull pain of about the size that would occasion a headache in a hedgehog. Soon after, I am off.

To be honest, my natural inclination would be to assume that RLS is a makey-uppy ailment; a physical condition, for sure, but one that has probably existed long before it was discovered, without causing millions of people to wonder why they can't stop shuffling in bed.

Thinking about it a little longer though, reading that some cases can require serious treatment, I also remember the rare moments when, while in the throes of the leg thing, my limbs seem suddenly to leap into a state of nervous tension, as if my skin is standing on end.

No doubt the UK's first conference on RLS, to be held next month, will go further to establishing how much of an affliction it really is. Until then, however, there are real victims who should not be forgotten; those who have to lie in bed with the wriggling millions.

My wife it was who first identified my behaviour as something other than normal and it is she, while I am quietly miming the Tour de France, who lies there wishing I would stop. She likens the leg thing to a dodgy car alarm: repetitive, persistent and the kind of irritation you are certain could be avoided if only the culprit had the will to fix it.

For a while I could see her point, but thought I lacked the will to change. Now I know better: I am a victim and deserve some sympathy. Either that, or some cushioned leg-irons.
Paul MacInnes

· RLS conference is at the Royal Society of Medicine, 1 Wimpole St, London W1G on October 1.
Details: 020-8333 3030;
Email: suzanne.tulk@uhl.nhs.uk

Thanks to guardian.co.uk who have provided this article. View the original here.