During the day Florence Mews leads a normal life, but when it's time to wind down at night, her legs just keep going.
The Baltimore woman is among the estimated 12 million Americans who suffer from restless legs syndrome, or RLS. It is a neurological disorder characterized by unusual sensations in the legs and an uncontrollable urge to move them in order to relieve these feelings.
The disorder's unusual sensations can strike at any time. Some patients with restless legs say it is like having caffeine shooting through their veins. Others say it feels like a surge of electricity.
"It keeps building — it's not just one shock," said Mews, 74. "It builds in momentum until the leg jerks. It can be either leg, any time of the day or night."
For now, most patients are treated with dopamine drugs, including Requip, Mirapex and Permax, which are commonly prescribed for Parkinson's patients. Ropinerole, the newest in a long line of treatments, is currently being reviewed by the Food and Drug Administration. If approved, it will be the first drug to specifically treat the condition.
‘You Can’t Make It Go Away’
Mews says the hardest part about the disorder is that she can't make it stop.
"Like a jack-in-the-box, it keeps winding and winding and it's there, you can't make it go away," Mews said. "And all of a sudden it springs."
The disorder has caused some patients to go to extremes, said Dr. Richard Allen, a neurologist at Johns Hopkins Bayview Medical Center in Baltimore.
"One patient we had actually took a baseball bat out and hit his legs with a baseball bat in sleep to reduce the sensory phenomenon," Allen said.
The ratio of women to men who have RLS is 2 to 1. Researchers haven't pinpointed exactly what causes the syndrome, but believe that in a number of cases, certain conditions may bring it on.
"It will commonly, for women, come on their last trimester of pregnancy," Allen said. "A quarter of women will experience some of this."
Promising New Treatments
New studies also suggest that iron deficiency may play a part. Because iron helps produce dopamine, a naturally occurring chemical in the brain, a deficit of iron may be linked to RLS. This preliminary finding could pave the way for future treatments.
"It's not clear to me that IV iron therapy is going to be applicable to everyone with restless leg syndrome," said Dr. Christopher Earley, another neurologist at Johns Hopkins. "I suspect it will be 50 percent to 60 percent."
The disorder occurs during periods of inactivity, but becomes more severe in the evening and at night, making it hard for people to fall asleep or stay asleep. It may cause some people to involuntarily jerk their limbs during sleep, and sometimes while they are awake.
If Ropinerole is approved, the release of the drug on the market will help those who have restless legs syndrome realize what it is so that they can get help.
"It would increase awareness," Allen said. "At this point, this is a large unmet medical need in our community. And we would benefit for having an approved medicine for it."
Mews said the medication, which she was given as part of a study, has helped her to an extent.
"You still feel it with the medication, you still feel it, but it's not as intense as it was," she said. "And you now it's only going to last a short time. It will calm down, it will relax you."
If you think you may have restless leg syndrome, going to a sleep clinic can help. Some leg movement is very dramatic, but others are very subtle, so the clinic can help determine whether movement levels are unusual.