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At 10:27 PM 7/9/96 -0400, you wrote:
>Hello,
>My mother has PD and she has some questions. Unfortunately she has no
>access to the Web. So, I will try to ask the questions for her. She is
>looking for information on "Restless Legs" the feeling that occurs after the
>drugs wear off. She is looking for ideas or suggestions on what to do to
>reduce that feeling.
>
>Michael Bryant
>[log in to unmask]
>
>
Michael, find attached, out of the archives, a series of messages that
discuss the 'Restless Leg Syndrome'.
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OR message contains SUBJECT: RESTLESS LEGS, PART
Date: Fri, 15 Sep 1995 23:15:00 -0820
Reply-To: Parkinson's Disease - Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Disease - Information Exchange Network
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From: Edwin Partridge <[log in to unmask]>
Organization: The Idea Link, Technol. For Humane Society (301) 949-5764
Subject: RESTLESS LEGS, PART 1
This message was from LINDA CUMMINGS to NOORDZIJ,
originally in conference FMEDICAL
and was forwarded to you by EDWIN PARTRIDGE.
-------------------------
NIGHT WALKERS
Do your legs seem to have a life of their own?
Your torment has a name
by Robert Yoakum
Those who have restless legs syndrome take it very seriously, but they
have an awful time putting their symptoms into words. That's
one reason the condition is so often shrugged off by doctors.
One cannot describe the sensation in conventional terms. Some
typical efforts: "It's a creepy-crawly sensation like a
thousand tiny worms working their way through my leg muscles";
"it feels like bugs crawling up and down my leg"; "it's like my
legs have a life of their own." Scientists call all such
sensations paresthesia. Symptoms of paresthesia also include
"numbness, tingling, or a 'pins and needles' feeling,"
according to The Mosby Medical Encyclopedia.
To relieve these symptoms RLS sufferers feel they must walk, no matter
how tired they are. Like the inhabitants of a nocturnal hell,
they are doomed to move while the rest of the world sleeps.
The most seriously afflicted may have to walk all night, so
when they say they haven't slept, they mean it - literally.
RLS affects nearly 5 percent of the population, according to the
Restless Legs Syndrome Foundation, and the majority of those
are middle-aged or older. Most of its victims have only mild
cases, but more than a million suffer from a severe form.
A recent short item about the condition in the Harvard Health Letter
brought what one editor called "a ton of mail." Sufferers were
relieved to learn they were not alone and that their torment had
a name. They were equally glad to find relief exists, although
there is no known cure for the condition at this time.
Astonishingly, many doctors and nurses have never heard of RLS or, if
they have, don't take it seriously. Every medical expert
interviewed for this article agrees with what Joseph F.
Lipinski, Jr., M.D., of the Medical University of South
Carolina, said: "This syndrome is unbelievably common and can
completely disrupt a patient's life. Yet it is virtually
unrecognized by general physicians. It isn't taught in medical
schools, and it can be mistaken for other disorders such as anxiety."
Confusion is compounded for the layperson because RLS, in nearly 90
percent of all cases, is accompanied by something called
periodic limb movements in sleep, also known as nocturnal myoclonus.
PLMS symptoms are leg twitches that occur every 20 to 40 seconds during
sleep (and sometimes during wakefulness). These regular
twitches, which can also keep sufferers awake, can occur
independently of RLS. Some people discover they have PLMS only
after their bed partner protests at being continually kicked.
PLMS should not be confused with full-body jolts, experienced by
many on the edge of sleep, which are called hypnic jerks. Nor
should RLS be confused with nighttime leg cramps.
A crawling sensation
How do you know if you have RLS? The odds are that you do if (a) you
have a disagreeable "crawling" sensation in the legs, (b) you
need to move your legs to relieve the sensation, (c) you are
usually afflicted in the evening or at night, and (d) you are
even more aware of the symptoms when you lie down.
Although symptoms begin shortly after a person retires for the night,
some also suffer during the day. These people are often unable
to nap or even sit still for more than a few minutes. When
symptoms occur around the clock, it can become impossible to
work, travel, or even sit down for an entire meal.
People use some ingenious tactics in an attempt to reduce the effect of
daytime RLS. One woman's husband went so far as to rig a
stationary bicycle in their van so while he drove she could
cycle. Another sufferer, unable to sit still in an airplane,
wrote to the airline president and obtained permission to stand
at the back of the plane during flight.
No matter when the symptoms occur, relief can only be obtained by
walking, massaging or stretching muscles, using hot or cold
compresses, doing deep knee bends, working the legs in a
bicycling motion, or when immense fatigue explodes into anger,
emulating a woman in Arlington, Texas, who "began to beat on my
legs with my fists."
This woman was told she had a calcium deficiency, a hormonal problem,
that she was on the go too much, that she was getting too much
- or not enough - exercise, that she was on her feet - or
sitting - too long.
* SLMR 2.1a * McLean Virginia USA Fri 09-15-95 10:57 pm
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OR message contains SUBJECT: RESTLESS LEGS, PART
Date: Fri, 15 Sep 1995 23:18:00 -0820
Reply-To: Parkinson's Disease - Information Exchange Network
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Sender: Parkinson's Disease - Information Exchange Network
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From: Edwin Partridge <[log in to unmask]>
Organization: The Idea Link, Technol. For Humane Society (301) 949-5764
Subject: RESTLESS LEGS, PART 2
This message was from LINDA CUMMINGS to NOORDZIJ,
originally in conference FMEDICAL
and was forwarded to you by EDWIN PARTRIDGE.
-------------------------
NIGHT WALKERS, continued
A long history
RLS, like PLMS, has been around a long time. It was described in the
17th century, but the first detailed study of the illness was
conducted in the mid-20th century by a Swedish neurologist,
Karl Ekbom, M.D. He was the first to use the term "restless
legs" in the medical literature. For a few years the
affliction was known as Ekbom's syndrome - which had the
advantage of sounding more important than today's more widely
used term restless legs syndrome.
So what causes RLS? There are abundant theories, but no neat answers.
Doctors who have studied it agree on one thing: The syndrome
is complicated. It's even possible that some cases are related
to metabolic, vascular or neurologic factors.
Specialists have reported that RLS can be triggered, but not caused, by
anemia, circulatory problems, diabetes, alcoholism, pregnancy,
antidepressants, or diseases of the kidneys, nerves or muscles.
Also mentioned, albeit less often, are caffeine, calcium
channel blockers, folic acid deficiency, and iron deficiency.
The condition tends to run in families, suggesting that susceptibility
to it is genetic. Some researchers, like J. Steven Poceta,
M.D., of the Scripps Clinic and Research Foundation in La
Jolla, California, believe that "familial RLS cases are the
worst. They tend to be more severe and less responsive to treatment."
Lucky patients may experience remissions. As reported in a 1992 issue
of the journal Sleep, "Sudden remissions, which may last for
months or even years, are as difficult to explain as relapses,
which also appear without any apparent reason."
Prescription: difficult
Prescribing treatment for RLS is usually a hit-or-miss proposition. A
dozen different doctors, hearing a patient describe symptoms,
might order a dozen different medications.
Unfortunately the most commonly prescribed drugs have little or not
effect: aspirin, ibuprofen and other pain-killers, sleeping
pills, tranquilizers, muscle relaxants, antidepressants (some
of which aggravate, or even cause symptoms), vitamin and
mineral supplements, quinine, and allergy drugs. People have
tried hypnosis, deep massage, acupuncture, thermal baths,
meditation, and an alarming array of drugs. In desperation some
turn to alcohol.
The prescription drug of choice for people with severe RLS is Sinemet
CR (a long-acting combination of L-dopa and carbidopa), normally
used to treat Parkinson's disease. This does not imply any
causal relationship between RLS and Parkinson's, but RLS often
responds to medications that replace or simulate the
neurotransmitter dopamine, the lack of which causes Parkinson's.
Some doctors combine Sinemet with other dopamine-like drugs like Permax
(pergolide) or Parlodel (bromocriptine) in an effort to avoid
the daytime rebound Sinemet sometimes causes. Over the past
year, more doctors have begun prescribing Permax alone.
For mild cases, however, a physician might initially prescribe
something in the benzodiazepine family, one of a group of
medicines known as central nervous system depressants. The most
favored benzodiazepine medication for RLS is Klonopin (clonazepam).
A third category of drugs used for treatment is a combination of
acetaminophen and narcotic analgesics, which include Tylenol
III (codeine), Percocet (oxycodone), and Darvocet (propoxyphene).
Some doctors hesitate to prescribe such drugs for fear patients will
become addicted. But a study of their use for RLS, conducted
by seven scientists for the journal Sleep, concluded as have
other studies that they "can be successfully used long-term
with little risk of addition." Some geriatricians, however,
feel that older people should not use propoxyphene and warn
that narcotics can cause side effects including constipation
and difficulty urinating.
Despite the myriad types of treatments, all the experts are in
agreement on one point: A physician should monitor any
medications taken for RLS. Every person reacts differently; a
drug that creates no side effects in one patient could knock
another for a loop. Further, older people tend to be more
sensitive to all these drugs' side effects.
Research continues
Fortunately, more and more is being discovered about RLS and thanks not
only to Guthrie and Wilson's work in the area but also to the
proliferation of sleep- disorder centers. At the end of 1978
there were only three such centers in the U.S. accredited by
the American Sleep Disorders Association. Ten years ago, at
the end of 1984, there were 34. Today there are a whopping 258.
* SLMR 2.1a * McLean Virginia USA Fri 09-15-95 10:58 pm
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* KMail 3.00y
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OR message contains SUBJECT: RESTLESS LEGS, PART
Date: Fri, 15 Sep 1995 23:23:00 -0820
Reply-To: Parkinson's Disease - Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Disease - Information Exchange Network
<[log in to unmask]>
From: Edwin Partridge <[log in to unmask]>
Organization: The Idea Link, Technol. For Humane Society (301) 949-5764
Subject: RESTLESS LEGS, PART 3
This message was from LINDA CUMMINGS to NOORDZIJ,
originally in conference FMEDICAL
and was forwarded to you by EDWIN PARTRIDGE.
-------------------------
She found out the name of her problem only after reading a newspaper
article about the Night Walkers, a national support group known
officially as the RLS Foundation. Thanks in large part to two
devoted women, Pickett M. Guthrie of Raleigh, North Carolina,
and Virginia N. Wilson of Orange Park, Florida, who launched
the nonprofit foundation with their own meager funds in 1992,
this debilitating condition is finally beginning to get the
attention it deserves.
A medical advisory board - 11 physicians distinguished in the field of
sleep disorders and chaired by neurologist Arthur S. Walters,
M.D., of the Robert Wood Johnson Medical School - determines
the accuracy of medical information provided by the Foundation.
* SLMR 2.1a * McLean Virginia USA Fri 09-15-95 10:59 pm
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OR message contains SUBJECT: RESTLESS LEGS, PART
Date: Fri, 15 Sep 1995 23:23:00 -0820
Reply-To: Parkinson's Disease - Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Disease - Information Exchange Network
<[log in to unmask]>
From: Edwin Partridge <[log in to unmask]>
Organization: The Idea Link, Technol. For Humane Society (301) 949-5764
Subject: RESTLESS LEGS, PART 4
This message was from LINDA CUMMINGS to NOORDZIJ,
originally in conference FMEDICAL
and was forwarded to you by EDWIN PARTRIDGE.
-------------------------
And this year, for the first time, the scientific community afforded
RLS major recognition when a two-hour symposium on the subject
was a major part of the annual meeting of the Association of
Professional Sleep Societies in Boston.
The hunt continues for better treatment. Studies are also under way to
determine whether or not circadian variability (biological
rhythms) causes individuals to suffer more at night.
Researchers are also delving into brain functions with PET (positron
emission tomography) scanners to find out more about the role
of neurotransmitters, dopamine in particular, on RLS. And
specialists are looking for a genetic cause. If the
responsible gene for familial RLS is found, it could lead to
new therapies.
RLS Foundation board member Lipinski best summed up the problem with
RLS in America today after he screened a colleague's patients
for the condition. The surprised Lipinski found several who
were affected. Later, in a note he wrote to the colleague
thanking him for the RLS information, he cited an old English
saying that "the eye does not see what the mind does not know."
For more information about RLS send a self-addressed stamped
business-size envelope to RLS Foundation-MM, P.O. Box 314, 514
Daniels St., Raleigh, NC 27605.
(end)
* SLMR 2.1a * McLean Virginia USA Fri 09-15-95 10:59 pm
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John Cottingham To search the Parkinsn archive, send search requests
to [log in to unmask] with Archive Search as the subject.
LibraryH Search of the Subject: line, From: line and Body are
possible. Look for "Current Topics...." message for
[log in to unmask] Articles and Studies available by e-mail.
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