Hi Verity,
> It also more commonly occurs after a heavy night. I would
> appreciate any suggestions,
From Modern Maturity
September-October 1994
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.
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 {*filter*}ia 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.
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.
(to be continued in next message)
Linda