Restless legs syndrome is one of those health problems that isn’t always taken seriously. Mark Buchfuhrer has a collection of comic strips that make fun of the condition. But there is nothing amusing or trivial about it, says the Stanford University professor, who treats some of the worst affected patients at his clinics.
About 10% of people suffer from restless legs syndrome (RLS) and about a third have it so severely they need medical help. Many struggle to explain what they are experiencing.
“If you ask them to describe the sensations, they’ll say it feels like bugs crawling deep in their legs, or water moving in their legs, or electricity,” says Buchfuhrer. “Moving the legs gives some relief but if they don’t keep moving or rubbing them for long enough, it comes back.”
Since RLS follows a circadian rhythm, typically it will worsen as the day progresses and be most problematic at bedtime. Unable to fall sleep, sufferers have to get up and walk about, and the long-term impact on lives can be devastating.
Today, Buchfuhrer is on the Medical Advisory Board of the Restless Legs Syndrome Foundation. But in 1992, when he first got involved with the condition, not many doctors knew how to treat it or even recognised it as a real disease.
RLS is termed a sensory motor neurologic condition and for a long time the answer seemed to be to treat it with drugs that activate dopamine receptors in the brain. This had unintended consequences, however. At higher doses, these drugs can cause compulsive and risk-taking behaviour, says Buchfuhrer.
“I’ve had at least a dozen patients who gambled and lost over a million dollars. For some reason, with women, we see more compulsive shopping. One patient had bought 300 pairs of shoes and, after I got her off the medication, she told me she didn’t like the vast majority but the rush she got from buying them was incredible.”
The other serious issue with dopamine agonists is that over time many patients experience a worsening of symptoms, known as augmentation. This is caused by one receptor that is not targeted by the medication adapting to become super-sensitive to dopamine. For that reason, these drugs are no longer recommended as a first-line treatment.
There are other potential solutions. For instance, RLS sufferers tend to have lower than normal levels of iron in their brains and eating iron-rich foods or taking supplements is often suggested.
“But with oral iron, there is only a very small chance of getting enough to the brain,” says Buchfuhrer. “Whereas, with an infusion of a slow-release iron preparation, we see more than 60% of patients get a dramatic improvement in their restless legs.”
The drugs Gabapentin and Pregabalin, used to treat nerve pain, can be helpful for RLS, although Buchfuhrer finds them less effective for those patients who have been taking dopamine drugs. “The other problem is the majority of the people we’re dealing with are between 50 and 70 and these drugs tend to cause sedation. That may seem fine if you’re having trouble sleeping. But as we get older, we don’t metabolise drugs as effectively and you can get a next-day hangover of sedation, as well as balance and cognition problems.”
In some hard-to-treat cases he will use a low dose of an opioid called buprenorphine (Suboxone). “Most doctors don’t want to prescribe opioids and people don’t want to take them, which is understandable. But if people are desperate, they can’t sleep or work and their lives are a mess, then, used correctly, it can be safe and effective.”
Buchfuhrer is also interested in the potential for wearable devices to help sufferers reduce their need for medication. He has been involved with Nidra, a therapy using an electrode that stimulates the peroneal nerve. Currently, this is available only in limited parts of the US.
He remains wary of medicinal marijuana since, to get effective levels of the drug into the bloodstream, it needs to be inhaled, which is harmful to the lungs. But lifestyle does make a difference – alcohol is a potent trigger, moderate to mild exercise can help, and vigorous activity may make symptoms worse. “I see the worst of the worst,” says Buchfuhrer. “With the tools we have today, all but a very small percentage can get dramatic relief.”
