Dear Nightwalkers: You know who you are and know RLS is no joke. We are not
alone - it is estimated that l2 million Americans suffer with this condition
and it is often shrugged off by doctors. More and more neurologists are
taking RLS very seriously - especially if they have it. A recent item about
the condition in the Harvard Health Letter brought a ton of mail.
It is hard to put the symptoms into words - one lady I know says it
feels like someone is wringing all the fluid from her leg muscles - some say
it feels like worms or bugs crawling inside the legs - legs have a life of
their own - shock like feeling (that describes mine) - pins and needles -
convulsions in leg muscles (also mine).
Getting up and walking or exercising relieves RLS but often it comes
right back when you go back to bed. Sleep is doomed. There is no known
cure. The commonly prescribed drugs have little effect - the usual pain
killers, sleeping pills, tranquilizers, muscle rrelaxants, antidepressants,
vitamins and minerals, quinine and allergy drugs, alcohol, massage, hot tubs,
acupuncture - don't work.
You can have Parkinson's Disease and never have Restless Leg Syndrome and
vice versa - or, like lucky me, you can have both unrelated conditions.
The treatment of choice for severe RLS is Sinemet CR(long acting levadopa
and carbidopa), normally used to treat PD. This does not imply any
relationship but RLS often responds to drugs that replace the
neurotransmitter dopamine. The agonists pergolide (Permax) or bromocriptine
(Parlodel) are sometimes combined with Sinemet. Over this past year more
doctors have begun prescribing Permax alone. I don't know if this is just a
bedtime dose, nor do I know what dosage is used. (If anyone can clue us in
it would be appreciated)
Did you know that there is a journal SLEEP and they have articles about
research and studies of RLS?
Did you know that there are 258 sleep-disorders center accredited by the
American Sleep Disorders Association?
Did you know there is a national support group called the NIGHT WALKERS -
known officially as the RLS foundation - started by Picktt M. Guthrie of
Raleigh NC in l992 - a nonprofit foundation with a medical board of ll
physicians distinguished in the field of sleep disorders and chaired by
neurologist Arthur S. Walters, MD of Robert Wood Johnson Medical School -
NJ.?
So we are no longer suffering this alone, and there is help for us at
long last. For more information send a self-addressed stamped business size
envelope to RLS Foundation-MM, Box 314, 514 Daniels St., Raleigh, NC 27605
Barbara Yacos, RN
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