Ask Dr James: What can I do about my restless legs?

In his regular column, Dr James Le Fanu answers your questions. This week: a reader who has been diagnosed with restless legs syndrome

Just over five years ago I was diagnosed with restless legs syndrome – my symptoms were apparently ‘typical’. The neurologist was confident they would be alleviated by a low dose of the anti-Parkinson’s drug ropinirole. These initially worked very well but with time have become less effective so now if anything my restless legs seem worse than ever. This is most disheartening. 
The restlessness of restless legs syndrome (RLS) is driven by a discomfiting sensation in the legs, mostly at rest and in bed at night, that can only be relieved by movement. First fully described by Swedish neurologist Dr Karl-Axel Ekbom in the 1960s, he noted sufferers’ evocatively graphic descriptions. “It’s as if ants are crawling up and down my bones”; “my legs seem to be teeming with small worms”;  “it’s a diabolical feeling”; “it’s impossible to stay still”.
The cause of this bizarre complaint remained unknown with no specific remedy until the accidental discovery that the “diabolical feeling” could be relieved by drugs such as levodopa that boost the levels of the neurotransmitter dopamine in the brain and widely used in the treatment of Parkinson’s. Their undoubted benefits however have since been tempered by the recognition that for a substantial minority they become less effective with prolonged use and – as in the reader’s query above – may be associated with a “rebound” effect where the symptoms become yet more intrusive.
While the underlying cause, it must be presumed, has ‘something to do with’ disturbed functioning of those chemical neurotransmitters in the sensory part of the brain, simple measures can certainly be of value.
Both heat (a hot shower before bed, hot water bottle etc) and cold can take the edge off the “diabolical feeling”. “I remove all the bedding from my legs and allow them to cool down,” writes a doctor from North London. “After half an hour, the sensation of restless legs subsides and I can cover up and go back to sleep”.
Inducing an attack of cramp may be similarly effective. “Having been driven up the wall with restless legs, in desperation I pulled my calf muscles so tightly as to cause a cramp. Letting go, I immediately noticed the infernal sensation had almost disappeared. I now do this routinely”.
The further peculiarity of RLS is that it can be reduced or exacerbated by insufficient iron stores in the body, ascertained by a routine blood test. This is readily correctable by a daily dose of iron supplements.
Most sufferers of RLS will nonetheless require some form of drug treatment. However, given the hazards of the rebound effect with prolonged use of those anti-Parkinson’s drugs, they need to be tailored to the severity of symptoms.
For those only mildly or intermittently troubled the current recommended options are to take, singly or in combination, a levodopa-type drug – but no more than three times a week; an opiate such as codeine before retiring to bed; or a sleeping pill (temazepam/zopiclone) to counter the likelihood of being woken during the night.
For those with severe RLS, the danger of the rebound effect has prompted a switch in favour of gabapentin (usually prescribed for neuropathic pain) as a “first-line treatment”. This can be combined with regular use of opiates at night, described as “highly effective” and unlikely to cause long-term dependency.
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