Doctors Talk about RLS

"… in the vast majority of patients that I see with restless legs syndrome, the time from the initial presentation of symptoms until the diagnosis was established is usually several decades."

Alon Avidan, MD, MPH
Associate Director, Sleep Disorders Center
Director, UCLA Neurology Clinic
UCLA, Department of Neurology
Los Angeles, CA

1. RLS is misunderstood

AVIDAN: My name is Alon Avidan. I'm a neurologist, practicing in sleep medicine here at UCLA. I've been in practice now for the last 9 years. And under my care, I currently have about 25 patients with restless legs syndrome. Doctors often believe that the condition may be psychiatric or may have a psychogenic overlay and don't believe that the condition is truly a medical, reversible medical condition that can be treated with effective therapy. And, in fact, in the vast majority of patients that I see with restless legs syndrome, the time from the initial presentation of symptoms until the diagnosis was established is usually several decades.

2. RLS is a condition that can be difficult to diagnose

AVIDAN:  We like to use the phrase that "restless legs syndrome is the most common diagnosis that physicians have never heard of," meaning that the condition is there, it is real, but unfortunately, we're not doing as good a job diagnosing and treating it. And when we validate their symptoms and when we tell them that there is a name behind their symptoms, a common name that can identify the symptoms as a medical illness, they have a sense of relief and a sense that finally there is an answer.

"It's very satisfying to see patients who've had symptoms for years and gone undiagnosed. And when you actually make the diagnosis and be able to give them a treatment that makes a difference, everybody wins in that situation."

Stephen Brunton, MD
Clinical Professor
Department of Family Medicine
University of California, Irvine
University of Southern California, Los Angeles
Director, Faculty Development
Cabarrus/North-East Medical Center
Family Medicine Residency
Charlotte, NC

1. RLS can have a significant impact on quality of life

STEPHEN BRUNTON, MD:  I'm Stephen Brunton. I'm a family physician. I've been in practice about 34 years. I work in a family medicine training program, so I see patients directly as well as supervise the residents' patients. I think the problem with RLS is people assume that it's a trivial condition. But if you look at the impact that it has on patients' lives, it really is very disruptive. It impacts the way they feel the next day. It's a condition that they often haven't had diagnosed, and as such, there's a bit of a mystery about what's going on. They think it's normal to feel this way. And so when you make the diagnosis for the first time, there's a - a realization that, one, they have a real condition, and they can be treated. So not only does it have an effect on the person themselves, but it also has an effect on their friends, family, and all the interactions which they can have.

2. RLS is a real and serious medical condition

STEPHEN BRUNTON, MD:  Unfortunately, within the medical community, sometimes RLS isn't taken quite as seriously. Because there's no objective measure of it, and patients often won't complain of it 'cause they don't realize that it's something abnormal, then often we won't ask about it and we won't treat it, or often we misdiagnose it. Sometimes, if people have a problem explaining what's going on in their legs, I might suggest to them that they feel like they have this creepy-crawly, or a tingling, in their legs, and do they feel that they need to move their legs? That's often what will give the impression that maybe it is restless legs, that is, they need to move it to get some relief. This is a much more common condition than I think most people even realize, and I also don't think that people recognize how much of an impact it can have on certain patients' lives. And when we understand that, not only that it has an effect on their ability to sleep but all the impact that can have in terms of their daily functioning, and maybe increasing problems with depression and just ability to work, then we're more likely to ask the questions and more likely to intervene with those patients.

3. Treating RLS with MIRAPEX

STEPHEN BRUNTON, MD:  The dopamine agonists are really the mainstay of therapy, and that's what I will really go to if the patient is having symptoms that are impacting their way of living. MIRAPEX, as a dopamine agonist, is certainly one of the options we offer patients. Patients have found that, when their symptoms are controlled, they're able to get back into a normal way of life. It's very satisfying to see patients who've had symptoms for years and gone undiagnosed. And when you actually make the diagnosis and be able to give them a treatment that makes a difference, everybody wins in that situation. Patients win from that; their family wins. And I think us, as healthcare providers, we also win, because we feel that we've been effective and made a difference in a patient's life.

"My overall experience with MIRAPEX has been very positive. It's a medication that can be used with very low dose and works very, very well and both effectively and safe for most RLS patients."

Mark Buchfuhrer, MD
Pulmonologist and Sleep Medicine Specialist
Downey Regional Medical Center
Downey, CA
Medical Director
SomnoMedix Sleep Disorder Center
Lakewood, CA

1. Many doctors are not aware that RLS is a serious medical condition

BUCHFUHRER:  I'm Dr. Mark Buchfuhrer and I've been in practice for over 25 years.  I'm a general internist who also specialized in pulmonary disorders and sleep medicine.  In my practice I've seen over well over 500 restless leg patients, both in my practice personally and in consultation. When it's left untreated, restless legs, which tends to cause a lot of problems with insomnia, severe sleep deprivation, can lead to a lot of both mental and physical problems. ...most doctors really aren't that aware of it. Patients don't complain of restless legs. So they dont really see it. It's not on the radar. And they don't view it as a very serious condition. When they hear the term "restless legs," it just doesn't sound like a very serious, worrisome medical problem. But I think this is changing quite a lot. Now that there's been a lot more education and publicity about restless legs, many doctors are becoming aware that this really is a serious condition worth taking care of and worth diagnosing and treating.

2. Symptoms and diagnosis of RLS

BUCHFUHRER:  When patients come in to doctors, the typical symptoms they come complaining of are of fatigue, not functioning well, not sleeping well. Sometimes anxiety and depression, and sometimes pain in their legs. They don't really have a good word for it. So it's often hard for them to describe. Restless legs has 4 diagnostic criteria. It has an urge to move. This urge occurs at rest. It's relieved by movement. And it occurs in the evening or bedtime. But they don't present like that. They will usually present with, "I have pain in my legs for discomfort." "I'm not sleeping well." "I'm fatigued." RLS is often misdiagnosed because patients do have trouble communicating it. They don't have a good word to describe it often. And when they use the word "pain" and it occurs at nighttime in bed, most often it's misdiagnosed as leg cramps and patients are given medication that's more appropriate for leg cramps. Not for restless legs. There's an awful lot of words that patients use. Typically, patients will say they have the creepy crawlies. They have this urge to move their legs.

3. Treatment of RLS with MIRAPEX

BUCHFUHRER:  When I see a new patient with restless legs, the first drug that I usually write will be a dopamine agonist. They are the most effective drugs and tend to be among the safest drugs that we use for restless legs. MIRAPEX, which is one of the dopamine agonists, has been a very helpful drug. I've been using it for many years with great success. It has very low side effects and it's very effective. My overall experience with MIRAPEX has been very positive. It's a medication that can be used with very low dose and works very, very well and both effectively and safe for most RLS patients.

"Restless legs syndrome may be misdiagnosed because if a sleep disruption is what the patient is complaining about, often that's what is being treated."

Theresa Zesiewicz, MD
Associate Professor of Neurology
University of South Florida
Assistant Director, Parkinson's Disease and Movement Disorders Center
Tampa, FL

 

1. RLS is underdiagnosed and undertreated

THERESA ZESIEWICZ:  I'm Dr. Theresa Zesiewicz, and I'm an Associate Professor of Neurology at the University of South Florida in Tampa. I'm a movement disorder specialist. I see anywhere from 2,500 to 3,000 patients a year, and I've probably seen 25,000 movement disorder patients in my career. I have diagnosed about 1,000 restless legs syndrome patients in my lifetime. The fact is that restless legs syndrome is one of the most common movement disorders in the world and affects about 10% of individuals. Yet it is frequently underdiagnosed and undertreated. Only a small percentage of patients with restless legs syndrome are accurately diagnosed.

2. RLS is often misdiagnosed

THERESA ZESIEWICZ:  Restless legs syndrome may be misdiagnosed because if a sleep disruption is what the patient is complaining about, often that's what is being treated. Or, if the patient has thinking problems or mood problems or anxiety, often they're what's being treated with an anti-depressant or an anxiolytic, rather than the restless legs syndrome specifically being treated. It's very important for physicians particularly to ask those patients who have problems with sleep whether their legs are bothering them at night, and whether they have the urge to move their legs. Many times patients who have a sleep disorder are treated with sleeping medication when in fact it's the restless legs syndrome that's contributing to their sleep problems. Sometimes the sleep medications that are given to the patient actually worsen the restless legs syndrome. So it's very important for health care providers to ask specific questions about restless legs syndrome.

3. Diagnosing and treating RLS

THERESA ZESIEWICZ:  It's very important for physicians to be familiar with and use the essential criteria for restless legs syndrome, because it's actually a fairly easy diagnosis to make. The first is the urge to move the legs, the second is that this urge occurs most often at nighttime, the third is that this urge to move the legs happens when the patient is sedentary...The fourth criteria is that this urge to move is much improved when the patient gets up and moves around. There's almost immediate improvement when the patient moves his or her legs. I routinely prescribe MIRAPEX to treat my patients who have moderate to severe restless legs syndrome. I'd estimate that 70 percent of my restless legs syndrome patients are taking MIRAPEX for their symptoms. My patients have had excellent clinical benefit for RLS with the use of MIRAPEX. They take it in low dose, it is very tolerable, it's very easy to take with a very easy titration.