Here's a short article I recently wrote on Restless Legs Syndrome. I've 
missed most of the RLS conversation so far, so I hope that this isn't 
covering old ground and that it helps answer a few questions.

On the Trail of an Elusive Syndrome
A low-profile disorder begins to attract the attention of the medical 
community
By Mike Le Postollec
Elizabeth Tunison, a member of the Restless Legs Syndrome Foundation Inc., 
Rochester, MN, board of directors and founder of the Southern California 
RLS Support Group, recalled experiencing the symptoms nearly since birth-a 
"frantic" feeling in the legs that compelled her to move, particularly 
during periods of relaxation or at night. "I couldn't sit still at all," 
she said. "It wasn't painful, but there was an indescribable, unbearable 
sensation in my legs, and I felt like my head would explode if I didn't 
move around." Like many others who have experienced similar symptoms, 
Tunison said that medical professionals were baffled by her condition, and 
it took years of searching for assistance before the medical staff at the 
UCLA sleep center in 1984 put a name to her condition-restless legs 
syndrome (RLS).
It wasn't until 1996 that she found Dr. Mark Buehfuhrer at the Gallatin 
Medical Foundation in Downey, CA. He listened to her and understood her 
condition, and is now the medical advisor for the Southern California RLS 
Support Group.
Today, Tunison operates that support group, which is one of approximately 
70, and she estimates that more than 100 people gather at each meeting, 
with new members joining all the time. The RLS Foundation, a nonprofit 
agency dedicated to providing information on the disorder and support for 
people with RLS, held its first scientific conference to discuss the 
disorder last year, and they continue to publish the Night Walkers 
newsletter, which features the latest in research, and letters from people 
across the country who've experienced the same leg irritations, 
debilitating fatigue and at one time or another, lack of proper medical 
assistance.
And despite all of this, RLS is still a condition with no clear diagnosis, 
no specific, identified nervous-system abnormality, very little exposure 
and no long-term cure.
About RLS
According to the RLS Foundation, restless legs syndrome is a neurologic 
disorder with the symptoms of bothersome (but usually not painful) 
sensations in the legs that produce an irresistible urge to move, most 
often at night or during periods of restfulness. Because RLS symptoms tend 
to worsen during the evening hours, the sensations and need to move the 
affected limbs frequently cause difficulty falling asleep. Approximately 80 
percent of people with RLS also have periodic limb movements (PMLS) during 
sleep, which can further interrupt sleeping patterns and cause debilitating 
fatigue during waking hours.
What causes RLS is a matter of speculation, but most researchers suggest 
that the syndrome appears in both a genetic form and a secondary, transient 
version. The transmission of the genetic RLS has not been determined, but 
the RLS Foundation estimates that parents with the syndrome have a 50 
percent chance of passing it to their children, and the syndrome seems to 
occur with equal frequency in males and females.
The secondary, transient version of RLS can either be caused or exacerbated 
by a number of factors. Some people who drink caffeine-containing beverages 
such as coffee or soda experience symptoms similar to RLS, which generally 
decrease in frequency or disappear altogether when the person eliminates 
caffeine from the diet. Some women experience RLS symptoms during the 
latter months of pregnancy, which usually disappear after delivery, and 
anemia and low levels of iron in the blood are sometimes concomitant with 
RLS symptoms, which also tend to decrease in intensity when these 
deficiencies are treated. In addition, the secondary form of RLS can be 
exacerbated by a range of chronic conditions such as diabetes, peripheral 
neuropathy, Parkinson's disease, kidney failure, alcoholism and rheumatoid 
arthritis.
Diagnosis and Treatments
Despite increased awareness of RLS in recent years, there are still no 
laboratory tests to confirm its diagnosis, and the disorder is most often 
recognized through patient interviews and medical history. No specific 
nervous-system abnormality has been associated with the syndrome, and 
between bouts of RLS the patient has normal findings on physical 
examination. Moreover, patients are generally free of RLS symptoms during 
the day, the time when they are most likely to see a physician. As Tunison 
said, "The only way a physician can diagnose RLS is by talking to patients 
and finding out how they are feeling, how it has interrupted their sleep 
and what gives them relief."
Nonetheless, a combination of medications and nonpharmacologic treatments 
have been shown to help alleviate RLS symptoms. Pharmacological treatments 
of RLS often include dopaminergic agents, benzodiazepines, anticonvulsants, 
and for most severe symptoms, opioids. Because no manufacturers have 
received U.S. Food and Drug Administration approval for the use of drugs in 
the treatment of RLS, pharmacologic recommendations for RLS treatments are 
based upon the results of only a few clinical studies, and other therapies 
are often recommended first.
According to the RLS Foundation, the best nonpharmacologic treatments 
probably are those activities that the patient has discovered to help 
reduce the symptoms of RLS on their own. These activities might include 
exercise, particularly involving the limbs, very hot or cold baths or any 
mental activity that is very engrossing for the patient. Other treatments 
might include electrical stimulation, conditioning therapy and hot or cold 
modalities. Tunison said that many patients experience greater relief with 
the use of cold modalities rather than hot, and that while a moderate 
amount of exercise can help the patient with RLS, either extreme (either 
very little or a great deal) of exercise can cause a worsening of symptoms. 
Since all current treatments of RLS are symptomatic and none provide a 
long-term cure, Tunison said that peer support and public education might 
play the largest role in helping patients with RLS at this time.
"At our support group meetings, new members are always shocked to find that 
so many people have this mysterious malady. These patients were always too 
embarrassed to tell anyone about it, and they thought that they were the 
only ones with RLS because doctors never understood," she said. "Now that 
the word is spreading throughout the medical field, more people with RLS 
are coming forward. And hopefully these people will come away from our 
meetings with more education, a lot of help and a lot of support."
Increased Education
Awareness of the condition is still in its infancy, but organizations like 
the RLS Foundation point toward better education for both patients and 
health professionals. Last year the National Institutes of Health began its 
first study of RLS and PMLS, and the National Sleep Foundation's 1998 
Omnibus Sleep in America Poll reported that a significant percentage of the 
population-nearly 25 percent-experience at least mild symptoms resembling 
RLS (National Sleep Foundation, (8)9: 41-43). At this point, very little is 
known about restless legs syndrome, but such startling numbers warrant 
further research and the attention of the medical community.
. For more information or to receive a copy of the RLS Foundation's 1998 
medical bulletin or free patient education books, contact RLS Foundation 
Inc., 4410 19th St. NW, Ste. 201, Rochester, MN, 55901-6624; Web site at 
www.rls.org; or contact the Southern California RLS Support Group 
http://come.to/rls







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