RLS specialists share advice they give to patients about avoiding behavioral triggers.
Patients who are kept awake at night with restless legs syndrome (RLS) are always on the lookout for ways to ease and prevent the worsening of their symptoms. Luckily, there are a number of tips and behavioral changes that providers can suggest to empower patients to manage their RLS symptoms at home.
1. Carry a List of Pharmacological Triggers.
The Restless Legs Syndrome Foundation has free resources on its website, including access to educational webinars, support group listings, and more. If a patient becomes a member ($35 annually in the United States or Canada), the foundation, among other benefits, provides a printed card that includes a comprehensive list of pharmaceutical triggers for RLS.
“So many doctors, like anesthesiologists [and] emergency room doctors, who are treating these patients love to use all these drugs, having no idea they are making the patient worse,” says Mark J. Buchfuhrer, MD, who runs the Restless Legs Syndrome Clinic at the Stanford Center for Sleep Sciences and Medicine.
“Especially when a patient comes in with depression, so the doctor…puts them on an antidepressant, it makes the restless legs worse; they get more anxious and more depressed.”
2. Get Screened for Sleep Apnea.
Not getting enough sleep is also a major RLS trigger. In some cases, obstructive sleep apnea (OSA) is comorbid in RLS patients and can go undetected. Patients with untreated sleep apnea or people with sleep apnea who decide not to use their CPAP machines will have worsened RLS symptoms, says Buchfuhrer.
3. Exercise, But Not Too Much.
Mild to moderate exercise can prevent the appearance of RLS symptoms, but strenuous activity can make the situation worse. Each patient should explore what level of activity works best for managing their symptoms, explains Brian Koo, MD, director of the Yale Center for Restless Legs Syndrome in New Haven, Conn.
“If people are not exercising at all, I would tell them, you know, maybe some light exercise would help,” says Koo. ”If you had some crazy exercise regimen in which you were running 10 miles a day, every day, I would tell them that maybe that is too vigorous.”
A professor of psychiatry at Harvard Medical School, John Winkelman, MD, PhD, tells his patients to avoid a sedentary lifestyle. “I think the most important behavioral issue is immobility,” he says. “I encourage people to try to stay somewhat active during times that they can.”
Stretching before bed may also be helpful for some patients, says Winkelman.
4. Occupy Your Mind.
Since RLS is a condition that occurs when someone is both physically and mentally at rest, patients can ease their symptoms by intellectually challenging themselves.
Anything that forces the patient to think will help. This may mean picking up a crossword puzzle, having a conversation with a friend, or playing chess, solitaire, or another strategy game on a smartphone. “If you are going on a one-hour flight, that’s probably all you would need; you wouldn’t need medication,” says Buchfuhrer.
5. Avoid Emotional Distress.
Stress and anxiety can trigger symptoms. Situations that might cause anxiety and constrain movement, like flying in an airplane, might make these patients feel worse. “If you put someone in a seat with lots of room to move, like in a movie and they are in the back and they can get up, they won’t have much issue. You put someone in an airplane seat, the ‘fasten your seatbelt’ sign goes on and they are sitting in a window seat, they will start to go nuts in about a tenth of the time,” says Buchfuhrer. “It’s caused by being confined in a place where you can’t move and it is amplified by the anxiety of knowing you can’t move.”
6. Take a Hot Bath or Shower.
Hot baths or showers can dispel symptoms before getting into bed. “Obviously, you can’t sleep in the bath or in the shower, so these behavioral approaches have their limitations,” says Winkelman. “For some reason hot water seems particularly helpful.”
7. Regulate Your Diet.
When he first meets with patients, Koo takes an inventory of potential RLS triggers, including a patient’s diet. His patients have noticed that simple sugars and carbohydrates tend to make their symptoms worse.
Vegetarianism is also not advisable for this patient population. Since vegetarians tend to consume lower amounts of iron, and low iron can sometimes contribute to the manifestation of RLS, patients should think carefully before they decide to stop eating meat. Contrary to popular opinion, leafy green vegetables like spinach don’t have enough iron for everyone. “Going on a purely vegetarian diet is probably pushing your luck if you are an RLS patient,” says Buchfuhrer.
8. Stay Away from Alcohol.
Patients should watch their alcohol intake. Drinking alcohol is one of the most common triggers that Koo sees. He advises that patients should keep a mental tab on how much they have consumed and feel out how much they can tolerate without aggravating their RLS. Some patients choose to completely avoid alcohol, but Koo typically does not recommend this.
“You don’t want to tell someone that they can’t have any alcohol because, of course, if there is a family function you want to be able to enjoy. I think the best thing you can do is educate,” says Koo.
9. Think Twice About Donating Blood.
RLS patients should not donate blood because any blood loss could also contribute to lower iron levels and lead to symptom flares. Buchfuhrer says he has seen this happen many times in his RLS patients.
“They’ll donate blood, the next thing you know, in a week or two, they are in big trouble,” he says. “Leave it to the other people who don’t have restless legs. Donate money; don’t donate blood.”
10. Avoid Sedating Antihistamines.
It’s not uncommon for RLS patients who struggle to fall asleep to turn to over-the-counter sedating antihistamines for relief. It’s important for patients to know these medications will likely make their symptoms worse, says Koo.
11. Seek Education Through Peer Support.
Through the Restless Legs Syndrome Foundation, patients can connect with local support groups, where they get to learn about the condition from peers who might have more experience managing life with RLS. “There are a lot of people who have been dealing with this as patients for a long time, who have a lot of knowledge,” says Koo.
Lisa Spear is associate editor of Sleep Review.