RLS frequently goes undiagnosed, and it can take numerous visits to a doctor to get to the treatment stage. This common problem, affecting some 12 million Americans, is often misdiagnosed and attributed to a number of other causes.
RLS is More Common Than You Think
“RLS is far more common than people are aware of,” says Dr. Michael Sellman, Chief of Neurology at Mercy Medical Center in Baltimore. “It may affect up to half of the elderly, and a large percentage of patients are totally unaware that they have it.”
According to the National Institute of Neurological Disorder and Stroke (NINDS), “Some people will not seek medical attention, believing that they won’t be taken seriously, that their symptoms are too mild, or that their condition is not treatable. Some physicians wrongly attribute the symptoms to nervousness, insomnia, stress, arthritis, muscle cramps, or aging.”
Proper diagnosis is crucial because RLS can seriously affect quality of life. There are effective treatments, particularly the dopamine agonists used to treat Parkinson’s disease.
The good news is that this annoying condition is not life-threatening and doesn’t require any invasive techniques to diagnose. The doctor may do blood tests or muscle and nerve studies to rule out other possible causes for your symptoms. Your ferritin level will be tested, as iron deficiency is one of the primary causes of RLS.
The Four Major Symptoms of RLS
There are four simple criteria that are used to diagnose RLS, according to an article by neurologist William G. Ondo, MD, of Baylor College of Medicine in Houston, Texas.
- An urge to move the limbs with or without sensations.
- Worsening at rest.
- Improvement with activity.
- Worsening in the evening or at night.
RLS sufferers almost always feel a large variety of sensations, but they’re subjective and vary from person to person. They are felt usually deep within the legs, and commonly between the knee and ankle. The most common terms used, according to Ondo, in descending order of frequency, include: “need to move, crawling, tingling, restless, cramping, creeping, pulling, painful, electric, tension, discomfort or itching.”
The NINDS website says, “The most distinctive or unusual aspect of the condition is that lying down and trying to relax activates the symptoms. Most people with RLS have difficulty falling asleep and staying asleep.”
Many RLS sufferers know other people in their family who also have it. “Family history is an important diagnostic criterion,” says neurologist Pamela Santamaria, MD, of Nebraska Medical Center in Omaha, Nebraska. “Sixty percent of RLS is hereditary.” Hereditary RLS is often called primary RLS.
Virginia Cantorella, 78, of Greenville, New York, who has been living with RLS for 20 years, has primary RLS. “My aunt suffered from it, my kids have it, and their father had it, but none of them have it as severely as I do.” Debi Goldben, 54, of Ocala, Florida, who has had RLS for six years, has close family members who also suffer from it. “My mother and grandma both had it, and my daughter also has it. My uncle on my mom’s side has it, too.”
How RLS and PLMS are Related
In addition to running in the family, there are other clinical indicators for RLS. The symptoms tend to gradually worsen with age, they show improvement with drugs that affect dopamine, and patients also often suffer from periodic limb movements of sleep (PLMS). These movements can result in frequent waking at night and sleepiness and fatigue during the day.
The relationship between RLS and PLMS can be confusing. They may or may not occur together. “Most RLS sufferers have PLMS, but not vice versa,” explains Dr. Sellman. The difference between the two disorders is that people with PLMS are unconscious while it’s happening. Unlike people with RLS, who can’t fall asleep due to the inability to remain still, people with PLMS can fall asleep, but have trouble staying asleep because their limbs move during the night. If you wake up in the morning with the sheets tossed around, you may have PLMS. If your bed partner complains of being kicked at night, PLMS is probably the reason.
PLMS is much more common than RLS in the general population. Like RLS, it’s more common with age. Up to 57 percent of elderly people are reported to have it. Both disorders may be genetically related.