Restless Leg Syndrome
Note from Anne:
This is something the majority of you have never heard of. It is something I have had since I was a child. It took 40 years for the medical profession to 'figure out' what it was and how to treat it. It is something that is best treated by a Neurologist. The most effective drugs for treatment are the ones used to treat Parkinson's Disease. My father and his mother both suffered with this and didn't know what they had.
I can not fly on an airplane, ride in a car on a trip in the afternoons, sit and read a book, go to a movie, sit anywhere for any length of time or EVER get a decent nights sleep. Some night's I am 'up walking' 8-10 times. There is no such thing as 'quality, deep sleep'. APN
Check out the web sites below for some excellent information on Restless Legs Syndrome:
(See Dr. Gott's Column and the article from InteliHealth below.)
The BEST Web Sites:
Southern California RLS Support Group.
This site is WONDERFUL! There is a complete list of drugs that treat RLS and drugs that make it worse. Look for the I.D. Card you can print. It has all these drugs listed plus other helpful things. Also letters from folks that suffer (and I mean suffer) with this ailment.
Restless Legs Syndrome Foundation
Support Page - This is the RLS Foundation's support page. Locate a support group in your area or get brochures, newsletters and other information on RLS.
They will even SEND a 'packet' to your personal physician to 'help' him understand.
What is it?
Restless legs syndrome (RLS) is a movement disorder that causes uncomfortable sensations in the legs. These sensations are typically worse during periods of rest, especially just before sleeping at night, but they may happen during daytime periods of inactivity, such as watching a movie, attending a long business meeting, or flying in a plane. Whenever the discomfort of RLS occurs, it is usually accompanied by an overwhelming urge to move the legs, and this movement may temporarily relieve leg discomfort. At night, persons with RLS often find that their leg symptoms make it difficult to fall asleep. Because of this, insomnia is common, together with extreme drowsiness and fatigue during the daytime.
The cause of most cases of RLS remains unknown. However, evidence suggests that there is dysfunction in dopamine pathways in the brain. Since RLS tends to occur in several generations of an affected family, scientists suspect that there is some genetic (inherited) risk for the problem. In some persons with RLS, anemia or vitamin deficiency may be a contributing factor, while in others RLS has been linked to pregnancy, diabetes, rheumatoid arthritis, kidney failure, or peripheral neuropathy (nerve damage in the hands and feet). High caffeine intake (coffee, tea, cola beverages, chocolate) may also be related to RLS.
Although RLS tends to be more common and more severe in persons over age 50, it can occur in men and women of any age group, even in young persons who may be misdiagnosed as “hyperactive.” Currently, tens of thousands of Americans have RLS that is severe enough to disrupt normal daily life. However, researchers estimate that even more people - possibly up to 3% to 8% of the U.S. population - may have occasional milder symptoms of RLS.
Symptoms RLS causes a wide range of uncomfortable leg sensations, which may be described as any of the following: tingling, prickly, wormy, boring, crawling, pulling, drawing, and (sometimes) pain. Although the muscles of the lower legs are affected most often, RLS may occasionally cause symptoms in the ankles and arms as well. The discomfort of RLS is almost always accompanied by an irresistible need to move the legs, and leg movement (walking, stretching, deep knee bends) does seem to temporarily bring relief. A leg massage or a warm bath may also help.
In addition to leg discomfort, RLS may also cause periodic jerking leg movements during sleep. These involuntary leg movements often disturb both the patient and the patient's bed partner. Also, because symptoms of RLS tend to be worse at bedtime, persons with RLS may find it hard to fall asleep and to stay asleep. This can cause chronic insomnia and severe daytime drowsiness, that may significantly interfere with work, school and social life.
From Dr. Gott's Column June 14, 2000
DEAR DR. GOTT: I have recently been diagnosed with restless legs syndrome.
What is this? Is there any treatment?
DEAR READER: Restless legs (Ekbom's) syndrome is a common yet strangely under-diagnosed neurological affliction that affects millions of people. It is marked by an irresistible urge to move the legs, usually at night, that can disrupt sleep, affect quality of life, provide unwanted stress, lead to extreme fatigue and frustration, interfere with one's job and social activities, and -- in some tragic cases -- be the cause of suicide.
RLS may be inherited; it occurs in children and young adults as well as in the elderly, in pregnant women, and in patients with kidney failure or diabetes. It may be induced by certain drugs, such as caffeine, antidepressants and lithium.
Although RLS usually affects only the lower extremities, the disorder can also cause symptoms in the arms. Regardless of site, the key factor in diagnosis is a repetitive and compelling urge to move the extremities, leading to pacing, stretching, rubbing of the affected area, and an uncontrollable feeling of unrest.
There are, as yet, no tests to diagnose RLS.
However, many sufferers appear to have an iron deficiency, without anemia. That is, the body's iron stores are depleted but the bone marrow has yet to be affected. (Because this is not a constant feature, patients with RLS should consult their physicians before taking any over-the-counter iron supplements.
Unnecessary supplemental iron could lead to liver damage.)
RLS may be related to other neurological diseases, including periodic limb movements, end-stage renal disease, neuropathy, dystonia and -- perhaps -- Parkinson's disease.
Presently, several studies of RLS are being undertaken, under the auspices of the National Institutes of Health.
One of the most disheartening features of RLS is that it is so uniformly misdiagnosed as "growing pains" (in children), leg cramps (which it is not) and anxiety (more commonly a consequence, not a cause). Most physicians are not familiar with the syndrome, which is a shame because it can be readily diagnosed, basically on the history alone, without expensive and painful testing, such as nerve-conduction studies. Treatment is complicated. Drugs called dopaminergic agents are effective. However, recent reports have indicted one such drug, Sinemet, as a cause of permanent neurological damage. Other medicines -- such as Pergolide, Pramipexole or Ropinrole -- appear to be safe; however, tolerance to these drugs can (and does) develop. Note should be made that none of these agents has been federally approved for RLS therapy. Other therapeutic possibilities include narcotics, tranquilizers, iron and anticonvulsants (which are also used to treat chronic-pain syndromes).
In summary, restless legs syndrome is a real disease, a serious disorder and an affliction that affects millions of patients of all ages. It is under-diagnosed, and for their part, practicing physicians need to learn more about it.
Fortunately, there are resources. The best is the Restless Legs Syndrome Foundation; web site address www.rls.org , and the toll-free phone number is 1-800-757-7563.