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Karla Dzienkowski’s daughter was 11 years old when she began to come to her mother’s room, saying that she couldn’t fall asleep due to a stab wound in her leg. She had to walk to stop it.
The preteen was gross and tired. Her grades began to slip and during her family trip she fell asleep on the bench, Dienkowski said.
It took three years, but Dzienkowski’s family finally explained to her girl’s condition, restless leg syndrome.
One study estimates that between 4% and 29% of adults in the western developed world have restless leg syndrome. That is the condition that there are too few people who can recognize themselves, and many doctors don’t know how to properly manage them, said Dzienkowski, executive director of the Restless Legh Syndrome Foundation.
This is something experts want you to know about restless foot syndrome.
“Restless leg syndrome is a neuropathy characterized by the need for movements that are often associated with discomfort,” said Dr. John Winkelman, PhD, who is the chief of the clinical research program at Massachusetts General Hospital and a professor of psychiatry at Harvard Medical University.
Unpleasant emotions are described as raw, painful, tingling, or throbbing, but often in the legs and sometimes in the arms, he added.
Restlessness often occurs when people with a state are sitting or lying down, which is reassuring in movement, Winkelman said.
Symptoms are most likely to occur at night when a person is resting, and it is classified as a sleep disorder because the syndrome interferes with sleep, Winkelman said.
In moderate to severe cases, people experience restless leg syndrome several times a week, and in the most extreme cases, symptoms can slow down sleep for several hours, said Dr. Brian Coo, an associate professor of neurology at Yale School of Medicine and director of Yale Center for The Restless Legs syndrome.
Two powerful ingredients play the role of who suffers from restless leg syndrome. It’s at the level of genetics and iron.
Restless leg syndrome often runs in families, and genetic markers account for about 20% of predictions of who will get it, Winkelmann said.
People with iron deficiency are more likely to develop restless leg syndrome, such as those who are pregnant, dialysis, menstruation, anemia, or vegetarian, Winkelman said.
Patients using selective serotonin reuptake inhibitor antidepressants may also be vulnerable to restless leg syndrome, he added.
This condition is twice as common in men and is much more common as people age, Winkelman said.
However, as Dzienkowski has learned, children can also have restless foot syndrome.
A good first step to treat restless foot syndrome is to see what worsens the condition, Winkelmann said.
Alcohol, other drugs, and simple sugars can contribute to symptoms, Koo said.
Oral iron supplements and intravenous iron infusions can be useful if iron is low or the boundary line is low, Winkelmann added.
Dzienkowski also recommends having a “sack of tricks” to manage symptoms such as hot or cold packs, massages, walks, or mind-stimulating activities.
“If for some reason… you’re engaging your heart, it helps keep your symptoms at bay,” she said.
There are some medications that can be useful when your lifestyle changes and iron supplementation does not work.
Many doctors start with a class of drugs called Alpha2-Delta ligands, such as gabapentin and pregabalin, Koo said.
For a long time, dopamine agonists have been the first strain of drugs. But Winkelmann added that they are now rarely prescribed because they can worsen restless foot syndrome over time.
The drug in the most severe cases is a low-dose, long-acting opioid drug, Koo said.
If you feel uncomfortable, motivate your legs to move at rest – especially if you do so, talk to your doctor, Dzienkowski said.
Not all medical professionals are familiar with restless leg syndrome, so seeking a referral to a sleep expert might be helpful, she said. You will also need to do lab work, especially iron panels with ferritin, blood tests to see how much iron is available for your body and how much it is available for use, Dzienkowski said.
“The more you do it, the more you delay your diagnosis and treatment, so it can be harmful to your life,” she said. “You don’t realize you’re at work or feel bad, you don’t want to leave or do things you don’t want to do.