Restless leg syndrome (RLS) disrupts sleep for nearly 10 percent of Americans, which can turn bedtime into a struggle. At night, or when you’re trying to rest, RLS causes an almost uncontrollable urge to move your legs. There isn’t much evidence to show that people with pulmonary hypertension (PH) have a higher chance of RLS than the general population. Nonetheless, plenty of members of myPHteam have mentioned their challenges with RLS.

It’s possible that aspects of PH contribute to RLS or that the medications to treat PH make RLS more likely. But more research is needed before scientists can establish a clear connection. Here’s what you should know about RLS if you feel like you’re experiencing symptoms.

1. How Restless Leg Syndrome Is Diagnosed

To diagnose RLS, your doctor will ask about your symptoms and medical history. Additional testing, like a sleep study, blood test, or neurological exam, can help pinpoint the cause of RLS and guide treatment.

The first person in history to mention RLS was Sir Thomas Willis in 1672. He called the condition Willis-Ekbom disease. Over time, the clinical definition of RLS evolved, and in 1995, the International Restless Legs Syndrome Study Group (IRLSSG) updated the disease criteria.

The most recent diagnostic criteria according to the IRLSSG include:

• Having an irresistible urge to move the legs, usually but not always accompanied by uncomfortable and unpleasant sensations in the legs
• Having symptoms that begin or worsen during periods of rest or inactivity, such as lying down or sitting
• Having symptoms that are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues
• Having symptoms that occur only in the evening or night or worse at those times than they are during the day

This list was updated in 2014 and is the most widely used to make a diagnosis of RLS.

2. The Prevalence of Restless Leg Syndrome

Overall, RLS is a relatively common problem. Scientists estimate between 7 percent and 10 percent of adults in the U.S. and Europe have RLS. The prevalence (how common it is) of RLS appears to be lower in Asia and Africa, although data is limited. RLS is more common in women, according to Mount Sinai, and in adults over 40. Up to 23 percent of people may experience RLS as they age. Still, between 1 percent and 4 percent of children and teens have RLS.

3. The Causes of Restless Leg Syndrome

Sometimes, RLS happens on its own or occurs as a secondary symptom to another condition or cause, like pregnancy. Scientists believe the cause of RLS has to do with the nerves, particularly in the central nervous system (brain and spinal cord), and the chemical dopamine. There are also some genetic risk factors.

RLS doesn’t always have a clear cause, but two conditions are known to raise the risk — iron deficiency and chronic renal insufficiency (poor kidney function). Researchers also suspect possible links between RLS and other chronic conditions, like diabetes, heart disease, migraine, and Parkinson’s disease. But the current evidence is lacking or mixed.

Pregnancy and being female are two risk factors that PH and RLS have in common, potentially explaining some of the overlap between these two conditions. In addition, anemia and iron deficiency contribute to RLS and can increase the progression of PH, so addressing these symptoms is important for both conditions.

4. How Restless Leg Syndrome Affects Quality of Life

Fortunately, for most people, the symptoms of RLS are mild or moderate — just 1 percent to 3 percent of people with RLS report severe and frequent symptoms, according to the journal Neurotherapeutics. If RLS gets worse, it can progress to the arms and other body parts. Symptoms may come on faster, more frequently, and more intensely. This worsening of RLS is called augmentation.

Addressing RLS is important as it may negatively affect your sleep, causing other health problems. If you sleep with a partner, sudden leg movements can also keep them up at night. Issues like sleep apnea, difficulty breathing, and anxiety can make it difficult to get a good night’s sleep with PH. When untreated, RLS only makes matters worse.

Several members of myPHteam have described the impact of poor sleep. “Sleeping at night became a huge and frightening problem,” said one member. “I’d have no trouble falling asleep. But I would have terrible dreams that I was running, and I would be out of breath. I’d wake up with a bad headache and gasping for air. I thought I had sleep apnea. My doctor ordered an at-home sleep study. It showed that I was waking about every 30 minutes. During the hours I slept, my oxygen dropped almost 200 times. The problem wasn’t sleep apnea ... I never stopped breathing, but I was having hypoxia [low levels of oxygen] during sleep. I was started on oxygen at night, and immediately, the dreams stopped, and the headaches never came back.”

If RLS or other issues keep you up at night (including nightmares), it could be a sign of a sleep disorder that needs treatment. Follow up with your health care team about your sleep quality and request a sleep study if you’re not sleeping well.

5. Medications To Treat Restless Leg Syndrome

The U.S. Food and Drug Administration (FDA) has approved a couple of medications to treat RLS that work by boosting the brain’s level of dopamine. Called dopamine agonists, these drugs include rotigotine (Neupro) and pramipexole (Mirapex).

Doctors may also prescribe gabapentin (Neurontin, Gralise), gabapentin enacarbil (Horizant), or pregabalin (Lyrica), which affect the body’s calcium channels, improving RLS for some people.

Finally, muscle relaxants, sleep medicine, and opioids can help manage insomnia and discomfort from RLS. A doctor may consider these the condition is severe or if other treatments aren’t working.

It can take trial and error to figure out which medications are best for you. Sometimes, medication that helps at first needs to be adjusted over time to continue providing the same effects.

One member of myPHteam described their positive experience with cyclobenzaprine (Flexeril): “I have severe RLS. A sleep study showed over 900 movements in seven hours … . I take cyclobenzaprine at night, and it’s wonderful. I also take gabapentin at night, though it was originally for another issue. I was out of cyclobenzaprine due to a mail-order hang-up, and I couldn’t believe the difference,” they shared.

6. Other Therapies for Restless Leg Syndrome

Taking medication to treat RLS isn’t always an option, especially during pregnancy. Many people with RLS find that walking or stretching offers temporary relief. Also, if a blood test shows that you have low levels of iron, taking an iron supplement can fix the problem.

In addition to medical treatment, some home remedies can help with RLS, such as:

• Applying a warm or cold compress to the skin
• Avoiding potential triggers like alcohol, caffeine, nicotine, and sugar
• Being physically active during the day
• Doing some light exercise before bed
• Eating iron-rich foods
• Rubbing or massaging the legs
• Taking a hot bath or shower to improve circulation and promote better sleep
• Wearing compression stockings

The cause of RLS is often unknown, and it can occur by itself, be linked to another condition, or run in families. If you are experiencing symptoms of RLS, consult with your health care team, consider your family history, and be aware of potential triggers. Working with medical experts allows you to receive an appropriate diagnosis, management, and support tailored to your specific situation.

Talk With Others Who Understand

On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 50,000 members come together to ask questions, give advice, and share their stories with others who understand life with pulmonary hypertension.

Have you experienced sleep-related issues, movement disorders, or periodic leg movements at night with PH? And if you have RLS, do you feel it correlates with certain lifestyle habits? Post your suggestions in the comments below, or start a conversation on your Activities feed.