nightwalkers - Restless Legs Syndrome Foundation

A publication of the Restless Legs Syndrome Foundation
I n s e a r c h o f a g o o d n i g h t’ s s l e e p
NIGHTWALKERS
Understanding RLS and Pain: Special Issue
Many patients describe their symptoms as “painful.” This issue
addresses their concerns and/or questions. The following question
about RLS and Pain was posed to the RLS Foundation’s Medical
Advisory Board and has been answered by three board members.
Q: What do you do as a clinician when your patient
experiences RLS symptoms that are consistently characterized
as painful? What resources do you recommend to these
patients? Is painful RLS unique from other disorders that
have a pain component?
A: This is a complicated problem. There are various
possibilities that need careful history taken to clarify. Such
possibilities include:
• If it is true RLS with the symptoms actually being painful.
• Whereas gabapentin and pregabalin have been suggested as
• the most appropriate medications, there’s insufficient
• evidence to recommend the best treatment, and many
• patients will respond to dopamine agonists.
• Or if the patient has both RLS and another disorder
• causing leg pain. These need to be treated independently.
• If the patient doesn’t have RLS at all (wrongly diagnosed),
• and instead has a different painful leg condition that needs
• to be treated correctly.
Or lastly, if the patient has irregular RLS merging into a chronic
pain syndrome. In my practice, this is the most common
association of RLS and pain. Perhaps three-quarters of RLS
symptoms will be positive, and you can’t really be sure if it is or
isn’t RLS. Sometimes a trial of a dopamine agonist can be
helpful in deciding whether RLS is indeed present. Often these
patients do best with gabapentin or pregabalin, but an
individualized approach is needed and careful follow up is often
required. I also see patients who’ve seemed to have had true
RLS, but in time it’s evolved into a chronic pain syndrome. Pain
management techniques may be helpful in this group.
- Michael H. Silber, MB, ChB
A: My experience is that RLS is not commonly described
as “painful” per se. One paper supports that RLS symptoms can
be described with pain descriptors (i.e. “aching” or “annoying”),
but the word “pain” itself doesn’t correlate with the International
RLS (IRLS) severity index, and most people don’t use the word
to describe their RLS.
Often neuropathic pain can be distinguished from RLS by
the description of the symptom. But the two conditions
certainly co-exist, and a referral to a pain specialist can be made
at that point. However it seems that some peripheral nerve
specialists are more interested in doing diagnostic tests than
treating the symptoms.
continued on page 2
SUMMER 2011
Inside NightWalkers
Support Group Spotlight.........8
In the News.............................9
Support Groups.....................10
Bedtime Stories......................17
Ask the Doctor.......................18
Dealing with Chronic Pain
in the Workplace
Pain in Restless
Legs Syndrome
Healthcare Provider
Listing
page 14
page 15
page 20
www.rls.org
Understanding RLS
RLS and Pain continued from page 1
Empiric use, or use based on practical experience, of a
dopamine agonist can be useful to see which symptoms go
away. The alpha-2 delta agents, gabapentin and pregabalin,
can sometimes be helpful for both sets of symptoms.
- John W. Winkelman, MD, PhD
A: Relevant scientific publications have presented the
following conclusions:
severity calculated from MPQ indices correlates significantly
with a standard RLS severity measure. Thus the non-painful
sensations of RLS appear to be a subclinical form of pain.”
“Painful sensations may be more frequent in RLS than has
previously been appreciated, and their relief from symptoms
may be a facet of pramipexole’s benefit even in patients with
concurrent mood disturbance.”
- Daniel Picchietti, MD
“The quality and severity of the sensation of RLS can be
measured on the McGill Pain Questionnaire (MPQ), and
Diagnosing Basics
Currently, there are no lab tests available to confirm or deny the existence of restless legs syndrome symptoms in a patient.
How, then, is it diagnosed? By ensuring the five essential diagnostic criteria are present. Criteria 5 was newly added by the
International RLS Study Group (IRLSSG) to help correctly diagnose RLS.
Essential Diagnostic Criteria for RLS
These five features must be present for a diagnosis of restless legs syndrome (also known as Willis-Ekbom disease):
1. There is an urge to move the legs, usually accompanied by or caused by uncomfortable and unpleasant sensations
in the legs
2. The urge to move the legs and any accompanying unpleasant sensations begin or worsen during periods of rest
or inactivity such as lying or sitting
3. The urge to move the legs and any accompanying unpleasant sensations are partially or totally relieved by
movement, such as walking or stretching, at least as long as the activity continues
4. The urge to move the legs and any accompanying or unpleasant sensations are worse in the evening or night
than during the day or only occur in the evening or night
5. The urge to move the legs and any accompanying unpleasant sensations are not solely accounted for by another
condition, such as leg cramps, positional discomfort, leg swelling, or arthritis.
2 NightWalkers
www.rls.org
From the Director’s Desk
NightWalkers is the official
publication of the Restless Legs
Syndrome Foundation
Board of Directors
Jacquelyn Bainbridge, PharmD, Chair
Diana F. Bartlett
Carol Ciluffo
John Dzienkowski
Roberta Kittredge
Régis Langelier, PhD, Treasurer
Kathy Page
Matthew A. Picchietti
Virginia Roth
Robert (Bob) H. Waterman, Jr.
Medical Advisory Board
Michael H. Silber, MB, ChB, Chair
Phillip M. Becker, MD
Mark J. Buchfuhrer, MD, FRCP(c), FCCP
Jeffrey S. Durmer, MD, PhD
Christopher J. Earley, MD, PhD
Brigit Högl, MD
Daniel Picchietti, MD
Penny Tenzer, MD
Mary L. Wagner, MS, PharmD
Arthur S. Walters, MD
John W. Winkelman, MD, PhD
Scientific Advisory Board
James R. Connor, PhD, Chair
Michael Aschner, PhD
Michael Brownstein, MD, PhD
Marie-Francoise Chesselet, MD, PhD
Christopher J. Earley, MD, PhD
Emmanuel J. Mignot, MD, PhD
Pamela Pierce-Palmer, MD, PhD
Joseph S. Takahashi, PhD
George Uhl, MD, PhD
Executive Director
Georgianna Bell
NightWalkers is published in the winter,
spring, summer, and fall. “Ask the
Doctor” questions, “Bedtime Stories,”
address changes, contributions, and
membership inquiries should be sent to:
NightWalkers, RLS Foundation
1610 14th St NW Suite 300
Rochester, MN 55901
Fund the Cure for RLS
This month my update is a request to all children and youth struggling with
restless legs syndrome. The Foundation is committed to making your future
different than previous generations living with RLS by solving the big
questions. Questions like, “What causes RLS?”, “How we can find the best
treatments?”, and “How we can find a cure?” These are big goals, and we
need everyone’s help to make them realities. It is because of these goals we
Georgianna Bell
are creating a new program that you can participate in. You can be a part
Executive Director, RLS Foundation
of the cure.
There is a printer cartridge company in Chatsworth, California that is very environmentally
conscious—in fact, their name is Planet Green. This company produces remanufactured inkjet
cartridges, which is very good for our environment. They also reach out to nonprofits like ours
who need money to get things done.
My request — which will help your local environment and your RLS Foundation – is that
when you go back to school this fall, you ask your school (and maybe your parent’s workplace)
to save their used inkjet cartridges for you. When you get at least 20 collected, you can contact
the RLS Foundation. We will send you a mailing label for free shipping to Planet Green. The
Foundation will then receive up to $6.50 per cartridge! Once received and processed, we will
also send you a letter thanking you for the amount of your donation and we’ll print the names
of the top ten donors in the Summer 2012 issue of NightWalkers. Keep it up all school year
and watch your donation amount grow. If you like, you can specify that your gift is in honor
of your parent or grandparent living with RLS. That would be a great surprise for Mother’s
Day or Grandpa’s birthday!
Please remember you must collect a minimum of 20 items to mail them to Planet Green. You
can collect any old cell phones or inkjet cartridges. Do not collect lasers or toners.
Questions on how to participate? Visit www.rls.org/planetgreen or contact the RLS Foundation
at [email protected]. Together, we can make a difference and move toward a cure. I look
forward to a greener planet, one recycled cartridge at a time.
Until we find a cure,
The RLS Foundation does not endorse or
sponsor any products or services.
©2011 Restless Legs Syndrome Foundation
Editor: Gina Depuydt
Medical Editor: Mark Buchfuhrer, MD,
FRCP(C), FCCP
Georgianna Bell
Executive Director, RLS Foundation
Warning and Disclaimer
Persons suspecting that they may have RLS
should consult a qualified healthcare
provider. Literature that is distributed by
the Restless Legs Syndrome Foundation,
including this newsletter, is offered for
information purposes only and should
not be considered a substitute for the
advice of a healthcare provider.
www.rls.org
Summer 2011 3
Book Excerpt
Book Excerpt
Deadly Sleep: Is Your Sleep Killing You?
While this book is not specific to RLS, it is mentioned as a potential related disorder and may interest our readers with
new ways of looking at sleep apnea and its related issues. The Foundation does not endorse products, yet we always try
to share what is new in the field of sleep.
Mack Jones, MD
Dr. Mack D. Jones is a board-certified clinical neurologist;
a graduate of the Medical College of Georgia. He joined
clinical staff as an assistant professor in the Department of
Neurology at the Medical College of Georgia. After twentyseven years in private practice, Dr. Jones retired and wrote
this book.
The book, Deadly Sleep: Is Your Sleep Killing You? is
available at any online bookstore including amazon.com
and barnesandnoble.com.
“Introduction: Ten years ago, I made
the decision to take on sleep disorders
medicine as a subspecialty in my field of
neurology. Within two years, I discovered I
had sleep apnea (SA) myself and began my
search for a cure. After surviving the fouryear ordeal, I decided to put into writing
the discoveries I made, to answer questions
for patients who were struggling with signs
and symptoms of sleep apnea.
The focus is on sleep apnea,
specifically, obstructive sleep apnea (OSA),
which is the single-most common problem
seen by sleep specialists today. It is also very
poorly understood, not only by the general
public, but by many in the medical
community as well.
As a clinical neurologist with a
special interest in sleep disorders prior to
being diagnosed with SA, I have a unique
perspective that could be of value to anyone
with questions about the disorder.”
RLS Awareness Week 2011 is Sunday, September 18 through Saturday, September 24. Awareness Day is
Friday, September 23, the birthday of Swedish neurologist Karl Axel Ekbom, who began publishing numerous
scientific articles and then coined the name restless legs syndrome in 1945.
4 NightWalkers
www.rls.org
RLS Awareness Week
Celebrate Awareness Week this September
Restless Legs Syndrome/Willis-Ekbom Disease Awareness
Week is Sunday, September 18 through Saturday, September
24 – with Friday, September 23 being National RLS/WED
Awareness Day. Awareness Week is a great opportunity for
members of our community to spread awareness about the
Foundation’s work.
The donations raised during this week will help support the
RLS Foundation in our mission to increase awareness,
improve treatments, and through research, find a cure. The
money received will help in:
• Funding research grants to deserving scientists.
• Providing educational materials to the public and
healthcare providers.
• Funding for Support Groups to provide materials, grants,
education, information and RLS awareness.
How We’re Celebrating
We have a new and exciting chance for you to work together
with us through razoo.com. If you’re wondering what Razoo
is, it is best explained on their overview page:
“This is an innovative online resource that will change the
way we give and help create a stronger nonprofit community.
New tools and technologies are enabling exciting new ways
to give. This cutting edge of philanthropy is engaging
millions of people – both new and existing donors – who are
drawn by the ability to make new kinds of direct connections
with their favorite causes, the organizations that are
advancing those causes and the people directly affected.”
1
www.rls.org
How You Can Help
There are two ways you can participate.
1. Donate to our Razoo fundraising page. Simply visit
www.razoo.com/Restless-Legs-Syndrome-Foundation
and choose an amount and frequency of donation. In
November, we will participate in “Give to the Max Day”
through this page, where donations could result in
several thousands in matching and/or extra gifts. Look
for more details to come.
2. Fundraise for RLS with a team page. Simply create a
page and invite your friends and family to give together
as a team. Using your fundraising page, you are able to
make a greater impact in the dollars you give to the
Foundation’s mission by including your community in
ours. If you would like to create a fundraising page,
please go to www.razoo.com/p/teams and create an
account. Link your progress with the RLS Foundation
and show everyone how you’re celebrating Restless Legs
Syndrome/Willis-Ekbom Disease Awareness Week!
For further instruction, please contact us by email
([email protected]) or by phone (507-287-6465). We
will have awareness packets available for anyone interested as
well as a conference call to discuss Razoo and its use. Anyone
participating will receive a pack of RLS awareness greeting
cards to thank your donors. If you are not an internet user,
ask a friend or family member to help you set up and
monitor your RLS page.
Together we can continue to educate the community, healthcare
providers, and undiagnosed individuals about living with RLS.
2
Summer 2011 5
Complementary Corner
Question from a reader: I’ve heard that tonic water helps
with painful symptoms of RLS. Is this true?
Answer from Dr. Cuellar: Many people report that drinking
tonic water helps with symptoms of RLS. The reason it is
thought to help ease symptoms is because it contains a small
amount of quinine (20 mg/6 fluid oz).
For centuries, quinine has been used to treat malaria. It is
also an effective muscle relaxant and therefore may help with
“leg cramps,” which are often misdiagnosed as restless legs
syndrome. If quinine does help with RLS, it may be unlikely
an accurate diagnosis of RLS has been made.
Quinine used to be purchased over the counter. In 1994, it
was removed from the market due to health problems
resulting in 23 deaths. While quinine is only approved by the
FDA for treatment of malaria (at up to 1000 mg/day), it
requires a prescription from a healthcare provider and is
typically not covered by insurers when used off label for leg
cramps. Another medication used to treat arrhythmias,
quinidine, works in a similar fashion as quinine; however, it
is not the same medication and also requires a prescription
from a healthcare provider.
There are some over-the-counter medications that have trace
amount of quinine sulfate in them. Some of these
medications specifically for RLS are a combination of
vitamin E and the trace amounts of quinine sulfate. Though
RLS is neurological and not muscle-related, the theory
behind this combination is that perhaps vitamin E helps
promote oxygen flow to the muscles which helps relieve the
muscle cramps and ensures they do not continue to recur.
You should not take quinine if you have heart disease, heart
arrhythmia, low potassium levels, kidney or liver disease.
Please let your healthcare provider know you drink tonic
water in the event of illness.
Q: I was prescribed cough medicine with codeine in it.
While I was taking it, my symptoms went away. Can I
take codeine medication for my RLS? How does this help
ease my symptoms?
mechanism of opioids action on RLS
symptoms is unknown, it is thought that
through a metabolism process, this
binding of the opioids with the mu
receptor sites results in an increase in
dopamine, which thereby, improves
symptoms of RLS. Codeine is considered
a narcotic, and unfortunately, many
people who live with RLS are resistant to
being treated with this medication.
People are often fearful that they will get Dr. Norma Cuellar, RN
“addicted” to these drugs and do not want Assistant Professor, University of
Pennsylvania School of Nursing
to take the risk. However, there is little
evidence of persons with refractory RLS
becoming addicted to opioid medications.
The opioids can be used on a daily or intermittent basis for
RLS. Side effects may include constipation, urinary retention,
sleepiness or cognitive changes. Opioids should be kept in
secure locations. These medications, since they are narcotics,
are intended for only those to whom they are prescribed.
Restless Legs Syndrome Foundation
1610 14th St NW Suite 300
Rochester, MN 55901
Phone: 507-287-6465
Fax: 507-287-6312
Email: [email protected]
www.rls.org
CANADA
The Canadian RLS Foundation accepts donations and
sends tax receipts for Canadian citizens.
Please send to:
RLS Foundation, Inc.
1581-H Hillside Ave, Suite #409
Victoria, BC V8T 2C1
In Canada, our nonprofit tax identification
number is: 88018 7109 RR0001
A: Opioids are one treatment option for RLS. Patients with
refractory RLS (resistant to dopamine medications or the
benzodiazepines) may be switched to an opioid which could
include codeine, hydrocodone, oxycodone, or methadone.
You should know that you are not being given opioids
because of “pain” related to RLS. Opioids do much more
than control pain. The opioids bind at special sites in the
body, called the “mu receptor” sites. Although the exact
6 NightWalkers
www.rls.org
News from the Development Chair
A few years back I got down an old jigsaw puzzle. On the front was a pretty picture of an old barn with fall
foliage around it. I started sorting the pieces and trying to put it together. After awhile, I realized many of
the pieces were missing. Not only that, but there were pieces in the box that belonged to another puzzle.
How frustrating!
I feel like living with RLS is a lot like that puzzle. We have an overview of what it is, just like the picture on
the front of the puzzle box. But along the way we realize that many pieces are missing. What causes RLS?
How do we find a doctor? There are pieces that don’t fit. Why does one medication work for some and not
for others? How does stress fit in? Why do some people have constant RLS and others don’t? Why do some
Kathy Page
have it in different parts of the body?
2011 Development Committee Chair
Here’s another piece of the puzzle; until just a few years ago pain and RLS just didn’t fit together when
talking about symptoms. Many doctors denied that pain was associated with RLS. But just like the criteria
that the creepy-crawly, “gotta move” feeling is only in the legs, information is changing. Why? In my
opinion it is because people are more open about what they have, more willing to share with others about
what they live with every day. The Internet is being used to find information and other people to talk to.
Discussion boards, chat rooms, Facebook pages, and blogs all help us feel connected – we are not alone. A
tentative “Has anyone experienced this….?” can bring floods of others who thought they were the only one
with those experiences.
While it is comforting to know we are not alone, it really makes the work of doctors and researchers more
complicated. On one hand, everything researchers learn about RLS can help narrow their focus. But on
the other, it must frustrate doctors because my symptoms are not your symptoms and your medication
may not work for me. The pain factor is enormous and is just now gaining. There may or may not be an
effective pain medication that helps, but just knowing you have validation for the pain is a big step in the
right direction.
So we must continue talking to one another, setting the record straight, making our voices known. Educate
yourself; keep up with the latest news about RLS and research. Of course, the best place for that is through
www.rls.org. The Foundation is the premiere place for reliable,
quality information that we need to put the puzzle together.
Give them your support. Make a donation. They are there for
all of us. One day that puzzle will be finished – every piece in
its place – and picture perfect.
Honor Roll
The RLS Foundation is sincerely grateful for the donations we have
received in memory and in honor of the following individuals*:
Honoraria
Kathy Page
2011 Development Committee Chair
Gertrude Gorbsky
Dale Klinger
Robert Waterman, Jr.
Memorials
Are you on Facebook?
The Foundation’s page recently hit 3,400 “fans” on
Facebook. Become a part of the discussion.
Join us today.
Desiree Benoit
Richard Bowers
Phyllis Cabaniss
Ruth Citriano
Ebba Kaer
Steve Marsh
Wava Mills
Kathryn Segner
Lois Smith
Margot Smith
Robert Spayd
Elizabeth “Bill” Tunison
Pauline Vandenberg
* Begining April 26, 2011 – July 15, 2011
www.rls.org
Summer 2011 7
Support Group Spotlight
Awareness in Wisconsin:
A Word with Jim Alf
James (Jim) Alf lives in Wisconsin and leads the Eau Claire
RLS Support Group. His contact information can be found
on page 11.
Just over three years ago, Jim Alf held his first RLS Support
Group Meeting. When a retired school superintendent
named John Grafenauer joined forces with Jim, they were
soon planning quarterly meetings and scouting interesting
speakers.
“My motivation is bringing together people who suffer from
RLS so they can interact,” Jim explained of his role. “I’ve
noticed there is instant camaraderie among strangers because
they have this affliction in common.”
Planning the Process
When it comes to planning a meeting, Jim believes there is
no such thing as planning too far ahead. “We hold meetings
the second Tuesday of August, November, February, and
May,” Jim stated. “Always in the same location, at the same
time – That helps members remember. As soon as one
meeting is over, I start thinking about the next one. But it
wouldn’t be possible without the help of the Foundation and
my wife of 41 years. Karen is my finder and helps me
overcome my disorganization by locating things I need to
make it all work.”
About publicizing his events, Jim said, “A successful meeting
will be well publicized. I appear on TV and try to make sure
our daily paper gets us into the community calendar. The
hospital where we meet is always informed about our
speakers. The library also has us listed in the events section.”
Jim stays in touch with his meeting attendees. He keeps a
roster of those who have attended and makes a personal call
or sends an email to remind them of upcoming meetings. To
be sure the attendees want to join his meeting again, Jim
insists on having an interesting speaker. “Good speakers are
not always easy to find, so I’ve broadened the search,” Jim
described. “We are having a chiropractor in August who has
had success with RLS patients. There are many alternative
practices now that are interesting. One of our members has
talked to a reflexologist about speaking. Could an
aromatherapist have something to say? I try to think outside
the box.”
8 NightWalkers
Jim thinks getting more
people knowledgeable
about the Foundation
would mean more groups
being formed. “About half
of the people who have
attended our meetings had
never heard of the
Foundation or seen a
NightWalkers publication,”
Jim explained. “Besides
awareness, I believe
research, of course, has to Karen and Jim Alf
be the other big effort. I’m
hoping five years from now
the world will know we exist and that we can hand them
something to finally relieve this problem.”
In his spare time Jim enjoys woodworking and genealogy. He
is also a published author of a book of Eau Claire, WI area
historical interests. In closing Jim stated, “As a people person
and a born helper I enjoy being a Support Group Leader. It
allows me experiences without wearing me out. I am glad to
be a part of the RLS Foundation and all its good work.”
Tell Us Your Story and Win $50
Consider submitting a story and/or a picture showing
how you have spread awareness about RLS. Did
wearing your RLS sweatshirt at the airport strike up a
conversation with a stranger? Have you recently
attended an exhibit meeting and shared brochures on
RLS? Any way you have worked to spread our mission,
we would like to hear about it. Submissions will be
collected until RLS Awareness Day on September 23,
2011. The submission with the best story wins a $50
gift certificate to our store (www.rls.org/store) and a
free gift membership to the RLS Foundation for a
friend. Together we can make a difference!
www.rls.org
In the News
Migraines in RLS
Altered Pain Response in RLS
Evaluation of contributing factors to restless legs
syndrome in migraine patients. Suzuki S, Suzuki K,
Hirata K. Journal of Neurology. May 2011.
Alterations in pain responses in treated and untreated
patients with restless legs syndrome: Associations with
sleep disruption. Edwards R, Quartana P, Smith M. Sleep
Medicine. June 2011.
Background: There have been numerous studies that have
shown a positive association between RLS and migraines, but
there have been few attempts to determine the relationship
between these two conditions.
Research: The researchers in this study wanted to investigate
the clinical characteristics and factors associated with RLS in
migraine patients. This study included 262 patients with
migraines along with 163 headache-free control patients. All
patients were evaluated for RLS via the International RLS Study
Group (IRLSSG) criteria. All patients also completed the
Migraine Disability Assessment (MIDAS) questionnaire, the
Beck Depression Inventory (BDI)-II score questionnaire, the
Pittsburgh Sleep Quality Index (PSQI) questionnaire, and the
Epworth Sleepiness Scale (ESS) questionnaire. There were 210
patients in the migraine patient group who also underwent
laboratory testing to determine 35 parameters.
Based on the research, RLS frequency was greater in patients
with migraines (13.7%) than without migraines (1.8%).
Patients with RLS had migraines that were more disabling,
had worse symptoms of depression, and had more daytime
sleepiness than those migraine patients without RLS.
Migraine patients with RLS also had higher rates of smoking,
stronger RLS family history, and increased levels of
phosphorous and urea nitrogen in their blood. Of note, there
were no differences between these groups in blood levels of
iron and ferritin (a protein that stores iron). Finally, this
study showed that migraine patients with a strong family
history of RLS, high scores on a depression inventory scale,
high scores on the sleepiness scales, and higher levels of
phosphorus in the blood were all predictors for developing RLS.
The Bottom Line: The results of this study confirm the
association between RLS and migraines, and they suggest
that migraines are worse and cause more problems than
migraines in non-RLS individuals.
New Questions: What is it that makes migraines worse in
RLS? Does smoking trigger migraines or RLS symptoms, or
is this a coping mechanism? Will this information help in
understanding the cause of RLS?
www.rls.org www.rls.org
Background: Medicines that influence the dopamine system
have been effective in treating RLS. There has been some
research that suggests the opioid system plays a role in RLS as
well. These two systems are also involved in how our bodies
perceive pain. Recent research has also found overlap in
patients suffering from RLS, fibromyalgia, and migraines,
and it has been shown that these patients have higher levels
of pain.
Research: The researchers in this study wanted to evaluate if
patients suffering from RLS have an altered pain response.
Thirty-one patients with RLS were included in this study.
Fifteen of these patients were allowed to continue their
medications (11 were taking pramipexole, 3 were taking
roprinirole, and 1 was taking pergolide), and 16 were weaned
off their medications. Eighteen healthy individuals were
included as a control group. All of these patients underwent
psychophysical pain testing of different points on their bodies
which consisted of pressure pain threshold testing, heat pain
threshold testing, and cold pain testing.
Based on the research, patients with treated and untreated
RLS had lower pain thresholds (meaning they were more
sensitive to pain) than the patients that did not have RLS.
This suggests that the way in which individuals with RLS
process pain is amplified. Of interest, the researchers in this
study also evaluated sleep disruption through a questionnaire,
and there was a correlation between increased sleep disruption
and decreased pain threshold.
The Bottom Line: The results of this study show that
patients with RLS have an altered and amplified response to
pain whether they are treated or not, and poor sleep may be a
contributing factor.
New Questions: Why is pain worse in RLS patients?
How significant is lack of quality sleep in the perception
of pain?
continued on page 13
Summer 2011 9
RLS Support Group Network
United States
ALABAMA
Contact: Provides timely
email and/or phone support
Shoals Area
Coretha Downs
256-247-3171
San Luis Obispo
Nancy Hair
805-545-7998
[email protected]
Southern California
Janis Lopes
714-633-0123
[email protected]
ARIZONA
Lake Havasu
Charlene Travelstead
928-453-9019
[email protected]
Morningside
Lola Scavo
714-256-5722
[email protected]
Contact:
Payson
Beverly Davis
928-468-6626
[email protected]
Contact:
South Sacramento
Amy Jaynes
916-682-5209
[email protected]
Tucson Area
Jane Anderson
520-760-5039
[email protected]
Ventura Area
Dave Hennerman
805-766-2035
[email protected]
ARKANSAS
Contact:
Arkansas
John Graves
501-565-0341
[email protected]
COLORADO
Denver
Marge Fuhr
303-494-4913
[email protected]
Contact:
Ozark
Carol Mallard
870-481-5640
[email protected]
CALIFORNIA
Coachella Valley
Charmaigne Menn
760-285-2231
[email protected]
Marin County
Carol Galloway
415-459-1609
[email protected]
Monterey Bay
William Schramm
831-484-9058
[email protected]
Oakland
Ron Bishop
510-652-4667
[email protected]
Kay Hall
303-741-6190
[email protected]
CYBERSPACE
Affiliated Online Support Group
Jodi Judson
[email protected]
http://health.groups.yahoo.com/
group/rlssupport/
Donna McLellan
RLS_Insomnia_Support_
[email protected]
Online Discussion Board
Moderators
Ann Battenfield
[email protected]
Susan Burns
[email protected]
Betty Rankin
[email protected]
DELAWARE
Contact:
Sacramento Area RLS Support Group Greater New Castle/Kent
Betsy Lacinski
Wesley Doak
302-292-2687
[email protected]
[email protected]
877-895-8706
10 NightWalkers
FLORIDA
Greater Gainesville Area
Carol Massey
352-485-1975
[email protected]
Contact:
Southern Illinois
Gail Sesock
618-942-7143
[email protected]
MAINE
Southern Maine
Sally Breen
207-892-8391
[email protected]
Contact:
Gulf Coast
Louis Siegel, MD
941-536-0475
[email protected]
INDIANA
Indianapolis Area
Diane Weissenberger
317-842-0764
[email protected]
Seacoast/Southern Maine
Régis Langelier, PhD
207-351-5352
[email protected]
South Florida
Ira & Lillian Kaufman
561-883-5956
[email protected]
Southern Indiana
Linda Klug
812-824-6161
[email protected]
Spring Hill
Bill & Betty Kinahan
352-200-5440
[email protected]
IOWA
Central Iowa
Delila Roberts
515-597-2782
[email protected]
Tallahassee Area
Richard Wilson
850-443-5414
[email protected]
Elaine Tucker
515-733-2299
[email protected]
Treasure Coast
Mary Lou Mennona
772-546-0750
[email protected]
Contact:
Thelma Bradt
515-243-9553
[email protected]
Contact:
North Florida/South Georgia
Ed Murfin
904-573-8686
[email protected]
Southeast Iowa
Kay Day
319-313-9239
[email protected]
GEORGIA
Atlanta Area
Lorne Ebel
770-252-6776
[email protected]
HAWAII
Honolulu
Terry White
808-293-2955
[email protected]
ILLINOIS
Contact:
Central Illinois
Vernon Copeland
217-793-1703
[email protected]
Champaign-Urbana
Liz Jones
217-586-3851
[email protected]
Chicago Southland
Bonnie Linder
[email protected]
KANSAS
Kansas City
Nora Walter
913-268-8879
[email protected]
South Central Kansas
John LaFever
316-773-5195
[email protected]
KENtuCKY
Restless in Southern Kentucky
Ken McKenney
877-700-4070
[email protected]
LOuISIANA
Capitol Area
Bonnie Hymel
504-469-4938
[email protected]
New Orleans
Bonnie Hymel
504-469-4938
[email protected]
MARYLAND
Riderwood
Edie Range
301-586-0410
[email protected]
MASSACHuSEttS
Contact:
South Shore / Cape Cod and Islands
Sheila Connolly
508-790-7640
[email protected]
MICHIGAN
Metro Detroit
Michael Fiorillo
248-495-0141
[email protected]
Western Michigan
Neva Warsen
616-532-1698
[email protected]
MINNESOtA
Southern Minnesota
Norah Nainani
507-369-5308
[email protected]
MISSISSIPPI
Central Mississippi
Stan Phillips
601-267-0156
[email protected]
MISSOuRI
Central Missouri
Kathy Page
660-368-2382
[email protected]
NEBRASKA
Greater Omaha
Linda Sieh
402-832-5177
[email protected]
NEVADA
Contact:
Las Vegas
Annie Flader
702-396-2812
[email protected]
www.rls.org
RLS Support Group Network
NEW HAMPSHIRE
Contact:
Upper Valley Night Walkers
Gail Richens
603-643-2624
[email protected]
Seacoast
Roberta Kittredge
603-926-9328
[email protected]
NEW JERSEY
Central New Jersey
Elizabeth Rochette
973-715-3868
[email protected]
South Jersey
Dot Quill
609-522-9401
[email protected]
NEW MEXICO
Rio Ranchos/Central NM
Meg Lindsey
505-715-0325
[email protected]
NEW YORK
Moving in Manhattan &
Long Island
Michael Haltman
[email protected]
516-338-7500
Contact:
Western NY
Lee Fischer
716-741-1560
[email protected]
Umpqua Valley
Lynn McCracken
541-672-3078
[email protected]
Lynchburg Area
Patty Arthur
434-384-9013
[email protected]
Valerie Boggs
541-817-4511
[email protected]
Tidewater Area
Barbara Carlson
757-625-8391
[email protected]
Canada
Portland
Delores Butterworth
360-892-5907
[email protected]
PENNSYLVANIA
Pittsburgh North
Alice Maxin
724-295-4117
[email protected]
Moscow Hopefuls
Ethel Rebar
570-842-3443
[email protected]
RHODE ISLAND
Southern Rhode Island
Lisa Cugini
401-322-3017
[email protected]
SOutH CAROLINA
Contact:
Greater Charleston
Jack Kingston
843-388-8006
[email protected]
Midlands
June Metts
803-771-7809
[email protected]
WASHINGtON
Colfax Area
Linda Peterson
509-397-3834
[email protected]
Contact:
Seattle & Vicinity
Roger Winters
206-755-2526
[email protected]
Skagit County
Charlotte Spada
360-293-7328
[email protected]
Spokane
Teresa Kincaid
509-999-8234
[email protected]
Tacoma Area
Michelle O’Brien
[email protected]
WESt VIRGINIA
Contact:
Wetzel County
Janet Forni
304-455-2073
[email protected]
OHIO
Mid Ohio
Shirley Thomas
304-485-7665
[email protected]
tEXAS
Greater Dallas
Lynne Kaiser
972-422-0816
[email protected]
NE Ohio RLS Support Group
Mark Kaletta
[email protected]
216-337-6891
Katy
Cyndi Moore
832-466-1200
[email protected]
Southwestern Ohio
Jan Schneider
937-429-0620
[email protected]
VIRGINIA
Central Virginia
Pamela Hamilton-Stubbs, MD
804-273-9900
[email protected]
Eau Claire
James Alf
715-514-1840
[email protected]
Contact:
Southwest Virginia
Annette Price
540-544-7454
[email protected]
Sheboygan
Robert Pamenter
920-892-7373
[email protected]
West Bend
OREGON
Lane County
Yvaughn Tompkins
541-682-5318
[email protected]
www.rls.org
Karen Borresen
262-306-7373
[email protected]
WISCONSIN
Plover Area
Jenelle Splinter
715-342-1281
[email protected]
ALBERtA
Calgary
Karen Shillingford
403-532-2534
[email protected]
BRItISH COLuMBIA
North Vancouver
Karen Norvell
604-792-8729
[email protected]
ONtARIO
Contact:
Brantford
Gwen Howlett
519-753-1028
[email protected]
LOOKING FOR LEADERS
Whether you’ve recently
discovered that you have
RLS or have had RLS for
years, you can become a
Support Group Leader.
Many major cities, and
even entire states, lack a
Support Group to
provide advocacy,
education, and support
to the millions of people
who are living with RLS.
The RLS Foundation
provides assistance to you
in starting and
maintaining your group.
If you are considering
becoming a Leader, please
contact the RLS
Foundation by phone at
507-287-6465, by email
at [email protected],
or at www.rls.org.
Simcoe Muskoka RLS Support Group
Janet Westall
[email protected]
705-721-0569
Contact:
Hamilton
Wendy Lowden
905-387-5392
[email protected]
Show your support of the
RLS Foundation by
purchasing RLS
merchandise. Check out
www.rls.org/store today!
London
Heather McMichael
[email protected]
Ottawa
Carol Connolly
819-459-2655
[email protected]
Toronto RLS Support Group
Armand Gilks
416-322-8000
[email protected]
South Central Wisconsin
Roger Backes
608-276-4002
[email protected]
Summer 2011 11
International
Restless Legs Groups
The following independent groups,
located outside of the U.S., work in
cooperation with the RLS Foundation.
AuStRALIA
Warriewood - Sleep Disorders Australia
Beverly Yakich
02-9415-6300
[email protected]
AuStRIA
Austrian Support Group
Waltraud Moldaschl
0664/2633100
[email protected]
FINLAND
Helsinki - Levottomat jalat-RLSry
Markku Partinen, MD, PhD
[email protected]
www.uniliitto.fi
FRANCE
AFSJR
Guy Bourhis
02-38-34-32-80
[email protected]
www.afsjr.fr
GERMANY
Munich
Deutsche Restless Legs Vereinigung
Ilonka Eisensehr
[email protected]
www.restless-legs.org
NEtHERLANDS
Zaanstad - Stichting Restless Legs
c/o Ms. Joke Jaarsma
31-20-679-6234
[email protected]
www.stichting-restless-legs.org
NEW ZEALAND
Nelson - Convenor of Richmond
RLS Support Group
Tom Marston
0064-03-5486398
[email protected]
SPAIN
Montserrat Roca
[email protected]
www.aespi.net
34-93-202-38-39
Spanish Association of Syndrome of
Anxious Legs (AESPI)
President Esperanza Lopez Maquieira
C/O Alberto Alcocer
19 1 º D, 28036-Madrid (Spain)
Tel. 986712547/609373923
www.aespi.net
SWEDEN
Stockholm
Sören Hallberg
[email protected]
www.rlsforbundet.se
+46+240-281 25
Sten Sevborn
[email protected]
+46+411-52 57
SWItZERLAND
Zurich, Wil, Aarau Support
Group Switzerland
Dr. J. Mathis
[email protected]
www.restless-legs.ch
Anni Maurer
056-2825403
[email protected]
12 NightWalkers
Clinical Trials
• Dr. Lori Lange and a team of graduate researchers at the University of North Florida are
conducting a web survey study on the impact of ongoing physical symptoms in the lives of
patients. Specifically, we are recruiting patients who: are at least 18 years of age, have
experienced ongoing or intermittent somatic symptoms for more than three months, have an
illness with ongoing symptoms (e.g., arthritis, lyme disease, eczema, COPD) or suffer from a
chronic syndrome (e.g., fibromyalgia, IBS, CFS, MCS), or experience medically unexplained
persistent symptoms (e.g., pain, fatigue, fever). If you would like to participate or desire
further information, please go to: www.unf.edu/~llange/voice.
• If you are a licensed driver age 21 to 65 and have RLS, you may qualify for a study. Call today
for more information: 1-877-5-STUDY-9.
• Men and women over the age of 18 with RLS are needed to participate in an inpatient research study.
Participants will visit the Johns Hopkins campus in Baltimore, MD for at least two five-day stays and
will have continued involvement for up to one year: 410-550-2252, study #301.
• If you have been diagnosed with RLS and are over the age of 18, you may qualify for this
study. Participation would include a seven-day stay at the Johns Hopkins Bayview campus, and
you may continue to take your RLS medications during the study: 410-550-2252, study #203.
• Jerking. Twitching. Fidgeting. This research study is evaluating a medication for restless legs
syndrome. Qualified participants must be at least 18 years of age, experience RLS symptoms,
and have trouble sleeping due to RLS. Please call 404-851-9934 or visit www.neurotrials.com.
• Research study at University Hospitals Case Medical Center you qualify if you have RLS and
are at least 18 years of age. We are investigating the possible relationship between RLS and
mutations in a skin protein gene which commonly occurs in Caucasians. For this reason we are
studying only Caucasians with RLS. Contact Brian Koo, MD at (718) 813-9422. The medical
center is near Cleveland, Ohio.
• You may be eligible to participate in a research study of an investigational medication intended
to help control the urge to move your legs. As a qualified participant, you may receive:
investigational medication, study-related exams, as well as up to $200 in compensation for
your time and transportation. To participate, you must be 18 to 85 years of age, and
experience symptoms of RLS. Contact: Timothy Grant, MD or Howard Schwartz, MD for
more information. Contact 305-279-0015 Ext. 4238 or 141 Sunset Dr., Suite 301, Miami, FL.
• If your RLS symptoms occur at least three times a week, and you are over 18, please contact
Broward Research Group 954-322-1600 or [email protected].
• The use of valerian as a complementary treatment may benefit persons with RLS. If you are
interested in participating in the study, call 215-898-1935.
NightWalkers in Your Email Inbox
The RLS Foundation is joining the worldwide efforts to reduce the amount of paper we use.
One way we can do this, while we also drastically cut costs, is by offering our quarterly
newsletter to you in an electronic version. Please send your email address and a request for
paperless NightWalkers to [email protected] if interested. If you do not email or call in a
request, you will continue receiving your paper edition.
www.rls.org
In the News
In the News continued from page 9
RLS and IBS
Use of Buproprion in RLS
Restless legs syndrome is associated with irritable bowel
syndrome and small intestinal bacterial overgrowth.
Weinstock L, Walters A. Sleep Medicine. May 2011.
Bupropion and restless legs syndrome: A randomized
controlled trial. Bayard M, Bailey B, Tudiver F. Journal of the
American Board of Family Medicine. July-August 2011.
Background: Previous research has shown that RLS is linked to
gastrointestinal diseases like celiac disease and Crohn’s disease.
While these studies have indicated the conditions that cause
RLS also contribute or predispose a person to develop other
gastrointestinal diseases, there has not been any research looking
at a relationship between RLS and Irritable Bowel Syndrome
(IBS) or Small Intestinal Bacterial Overgrowth (SIBO).
Background: Depression is common in RLS. Unfortunately,
most antidepressants make RLS symptoms worse and can
increase frequency of periodic limb movements. There have
been a few studies that showed buproprion was useful for
treating depression in RLS patients as well as not worsening
RLS symptoms. In fact, a few studies have suggested
buproprion may even decrease RLS symptoms by itself.
IBS is a bowel disorder with abdominal pain, bloating, and either
diarrhea, constipation, or both. Small Intestinal (or Bowel)
Bacterial Overgrowth (SIBO or SBBO) is a bowel disorder where
there are excessive bacteria in the small bowel. The large bowel, or
colon, is normally rich with bacteria, but not the small bowel.
This leads to nausea, bloating, vomiting, and diarrhea.
Research: The researchers in this study wanted to examine
whether buproprion would, at best, improve the symptoms
of RLS and, at least, not exacerbate them. The researchers
designed a double-blind, randomized controlled trial. Sixty
RLS patients with moderate to severe RLS were included in
this study. The groups were randomly split into one group of
29 and a second group of 31. The first group received
buproprion 150 mg once daily, and the second group
received a placebo. The patients did not know if they were
taking buproprion or a placebo. The patients continued this
for 6 weeks with an evaluation initially and weekly thereafter.
Research: The researchers in this study wanted to determine the
prevalence of, or how common is, IBS and SIBO in RLS
patients. Thirty-two patients with RLS were selected for this
study by answering local newspaper and radio ads that were
“looking for patients with RLS between ages 18 and 85.”
Another 25 people without RLS were selected from general
population volunteers to act as one control group, and thirty
completely healthy individuals were also included as a second
control group. Patients were evaluated for RLS via the
International RLS Study Group Criteria, review of medical
records, and the ruling out of RLS mimics. Patients were
evaluated for IBS using the Rome II criteria, and patients were
evaluated for SIBO using the lactulose breath test.
Based on the research, the prevalence of IBS was 28% (9/32)
in the RLS group compared to 4% (1/25) of the general
public control group. Prevalence of SIBO was 69% (22/32)
in the RLS group compared to 28% (7/25) of the general
public control group and 10% (3/30) of the healthy control
group. There were 6/9 patients with RLS and IBS that also
had SIBO. And there were 5/22 patients with RLS and SIBO
that also had IBS.
The Bottom Line: The results of this study show that IBS
and SIBO are common in RLS.
New Questions: Since both IBS and SIBO are inflammatory
disorders, what role does RLS play in this? Does RLS lead to a
pro-inflammatory state, does a pro-inflammatory state lead to RLS,
or are these both the product of a third underlying condition?
Based on the research, RLS symptoms at 3 weeks improved
with buproprion when compared to placebo; however, at 6
weeks, there was no statistical difference in RLS symptoms
between the buproprion and placebo groups. RLS symptoms
were not worsened in either group.
The Bottom Line: The results of this study show that
buproprion does not exacerbate RLS symptoms and would
therefore be a reasonable choice for treating depression in
RLS patients. It does not appear that 150 mg of buproprion
is a good choice for treating RLS symptoms.
New Questions: Would higher doses of buproprion be useful
in treating RLS symptoms? Does long-term (at least longer
than 6 weeks) use of buproprion lead to improvement in RLS
symptoms, exacerbation of RLS symptoms, or have no effect?
Glossary
In the News
Rome II Criteria: At least 12 or more consecutive weeks in
12 months of abdominal discomfort/pain that has two of
the following features: 1) relieved by defecation, 2) onset
associated with a change in frequency of stool, 3) onset
associated with a change in form (appearance) of stool.
Lactulose Breath Test: A test used to identify abnormal
growth of bacteria in the intestine by breathing into a
breath collection device. Breath is collected and analyzed
for the presence of hydrogen.
www.rls.org
Summer 2011 13
Chronic Pain
Dealing with Chronic Pain in the Workplace
Jeffrey S. Durmer, MD, PhD is the Medical Director and Chief
Medical Officer at Fusion Sleep in Georgia. An active member of
the RLS Foundation’s Medical Advisory Board, Dr. Durmer has
compiled the following information on dealing with chronic pain
while at work.
As a neurologist and sleep medicine specialist, I have treated
patients with many different forms of chronic pain, RLS, and a
combination of the two. Since no two RLS sufferers or chronic
pain sufferers are the same, it is best to tailor therapies to the
individual according to the type of pain, the timing of pain, and
its relationship to other medical conditions. Patients in which I
routinely note both chronic pain and RLS include diabetic
neuropathy patients, spinal cord injury patients, and peripheral
nerve injury patients (sometimes with reflex sympathetic
dystrophy, also called complex regional pain syndrome).
Talking about chronic pain at work
Chronic pain has a significant impact on the individual with
chronic pain. It can dramatically reduce an individual’s
effectiveness at work. By educating your employer about your
condition you can help open the lines of communication in
both directions so they will not only understand when you are
in pain, but also help you to avoid potential work-related
situations that may exacerbate your condition. If a supervisor or
coworker hasn’t been told of your condition, they will not be in
a position to readily understand your pain or help you to
advance in your career dispite your condition.
It is difficult to predict an individual’s (or employer’s) response to
your news about a chronic pain condition or a potentially
debilitating treatment (eg., side effects of medications). However,
it is clear that every employer wants to maximize the health and
productivity of their workforce. It simply makes financial sense for
employers to want to reduce healthcare costs and lost productivity
due to absenteeism or illness-related productivity loss by
addressing avoidable aggravation of a chronic condition like pain.
One suggestion I have for those approaching their employer is to
not only educate them on your symptoms of chronic pain, but
also to explain your doctor’s plan for treatment and suggestions to
help avoid symptom exacerbation. It is also important to relay to
your employer that you are bringing this information to them in
order to maximize your efficiency and minimize the impact of this
condition on your productivity. By conveying that you want to be
a productive member of the workforce provides a good platform to
discuss creative solutions for issues related to chronic pain at work.
Effectively dealing with pain at the workplace
Dealing with pain on the job is unique for every individual so
general suggestions may not result in the types of changes that
can happen with specific recommendations from your physician.
14 NightWalkers
Every situation is unique, but one of the most
effective ways to deal with pain on the job is to
let others know what you are living with so they
might help.
In terms of taking control yourself, I suggest the
first order of business be to maintain a generally
healthy lifestyle. This may be a lot harder than it
sounds given the stresses of every day life, but in Jeffrey S. Durmer, MD, PhD
general the more well rested, hydrated, and fed you are, the
better your pain will be controlled. In addition, making good
choices such as not smoking, participating in some kind of
exercise, and having social connections in your community also
help people in dealing with chronic pain.
In many cases it is helpful to schedule short (five minute) work
breaks at least on an hourly basis to avoid pain exacerbation
related to prolonged postures, tension, and/or mental fatigue.
Simply getting up from your desk or away from your station and
walking around the workplace can really help reduce the
physical and mental symptoms associated with pain. If you use
pain medications that cause sleepiness or mental sluggishness or
note that your pain gets worse at certain times of the day, try to
schedule the use of your medications to reduce the impact on
your work or plan important activities at times when you may
not require as much medication. Depending on the type of pain
you experience, there may also be additional postural supports,
relaxation techniques, specific stretches, or other non-medical
therapies you can utilize during the workday to maximize your
productivity without medication side effects. Speak with your
physician, physical therapist, or other healthcare provider about
the use of alternative non-medical approaches to augment
medical pain relief.
Bettering quality of life when dealing with chronic pain
While chronic pain sufferers must deal with the physical burden
of pain, they also must shoulder the mental fatigue and
psychological effects that result from it. Just as medications reduce
physical pain, having a support system of friends, family, and
professionals to help cope with pain-imposed life limitations is
very helpful. Quality is not equal to quantity so it is sometimes
important for people with chronic pain to make choices about
participating in some activities while avoiding others.
Whether you are dealing with chronic pain or anything that
limits your ability to participate in life to the fullest extent, it is
imperative to stay in touch with the things that give your life joy
and meaning. It is the human ability to adjust to pain and to
adapt to life that allows us live with quality. As Elbert Hubbard
once said, “Pain is deeper than all thought; laughter is higher
than all pain.”
www.rls.org
Pain in Restless Legs Syndrome
A Guide to Help you Control and Manage Your RLS
The following was written by William G. Ondo, MD, a
Professor of Neurology at Baylor College of Medicine, as well as
associate director at the Parkinson’s Disease Center and
Movement Disorders Clinic in Houston, Texas. Dr. Ondo has
authored more than 200 original articles, review articles, and
book chapters, and has edited two text books on Movement
Disorders. His current research interests include Parkinson’s disease,
restless legs syndrome, tremor, and the use of botulinum toxins.
Pain is broadly defined as any unpleasant sensation with a
negative affective component. The symptoms of restless legs
syndrome (RLS) meet that criteria. However, the majority
of patients specifically state that the sensation is not
“painful,” though certainly unpleasant. Traditional pain
symptoms probably occur in about 20% of RLS patients,
although 80% may report some pain.1,2 This mostly
depends on semantics and how pain is defined. The McGill
pain survey, a commonly used questionnaire about pain,
generally correlates with questionnaires about RLS, but the
adjectives most commonly endorsed in the survey
(annoying, nagging, tingling, etc.) are not very specific for
pain.3 Furthermore, visual analogue pain scales—where
people draw a line on a scale between zero and ten—do not
correlate with RLS scales in studies.
When is RLS Painful?
There are several different scenarios where patients may
have traditional pain with RLS. First, pain may specifically
be seen as part of the urge-to-move sensory component.
This is part of the primary RLS description. Second,
patients may have pain and an urge to move that are two
separate features. This occurs most commonly with
concurrent neuropathy, which is any damage or impairment
of the nerves in the legs or feet. Patients with neuropathy
are probably at increased risk for RLS, but they may also
have a burning, superficial pain in their feet (neuropathic
pain). True RLS (urge to move) isolated to the feet is very
rare. In my experience people usually will not distinguish
these two symptoms—pain in the feet versus the urge to
move the legs—unless very carefully questioned. A third
cause of pain may be the consequences of learned
helplessness (knowing you are going to get the unpleasant
symptoms and anticipating them) and sleep deprivation,
which lowers pain threshold.
www.rls.org
Finally, painful symptoms may be caused by chronic longterm treatment with dopaminergics (i.e. Mirapex, Requip),
because a change in the quality of the symptoms to a more
painful sensation may be part of augmentation. This last
cause is controversial because it is unknown whether RLS
may gradually evolve into pain even without dopaminergic
treatment, or if pain is more noticed because the
dopaminergics effectively treat the urge to move.
Understanding Pain with RLS
Scientific studies have shown some similarities between
RLS and pain. It should be noted that neither condition is
entirely understood. Tests of pin-prick to the feet pain
ratings (static hyperalgesia) in RLS patients were
significantly elevated in the lower limb, whereas sensation
to light touch (allodynia) were normal.4 In patients with
chronic pain, both are abnormal. In the subset of subjects
whose RLS was successfully treated with dopaminergics
(which do not treat pain), the pin-prick hyperalgesia testing
normalized. There is little data to suggest dopaminergics
Summer 2011 15
True RLS (urge to move) isolated to the feet is very rare. In my experience people usually
will not distinguish these two symptoms—pain in the feet versus the urge to move the
legs—unless very carefully questioned.
treat pain in general. However, descending dopaminergic
tracts in the spinal cord are suggested to be involved in RLS5
and may also be involved with suppression of pain in
general.6
In general, large treatment studies of RLS with dopaminergics
have not formally assessed pain. In our experience,
dopaminergic medications dramatically improve the urge to
move in RLS, but do not consistently improve pain.
Gabapentin enacarbil* (Horizant®) is a novel drug that is
absorbed more effectively than its predecessor gabapentin
(Neurontin®). It works differently than dopaminergics and
was recently approved by the FDA for RLS. In trials, visual
analogue pain scales specifically improve, and as opposed to
dopaminergics, this drug probably helps chronic pain in
general. Another similar drug, pregabalin (Lyrica®), may have
the same effect. Opioids (narcotics) are also used to treat both
RLS and pain. There are no formal trials to evaluate these
drugs in painful RLS, but they probably help. Improved sleep
may also help pain.
Summary
In my opinion, pain specialists often incorrectly treat RLS. In
most cases, there are major differences between RLS
management and pain management, and some medications
used to facilitate pain management can actually worsen RLS.
Local numbing injections and steroid shots are also ineffective
for true RLS. That said, if a therapy is effective and felt to be
safe for any individual patient, there is no reason to change.
* Gabapentin enacarbil (Horizant®) was approved in April 2011
for the treatment of RLS. It is available by prescription.
1610 14th St NW Suite 300
Rochester MN 55901
Phone 507-287-6465
Fax 507-287-6312
[email protected] • www.rls.org
16 NightWalkers
References:
1. Ondo W, Jankovic J. “Restless legs syndrome: clinicoetiologic correlates.”
Neurology 1996;47(6):1435-1441.
2. Winkelmann J, Wetter TC, Collado-Seidel V, et al. “Clinical
characteristics and frequency of the hereditary restless legs syndrome in a
population of 300 patients.” Sleep 2000;23(5):597-602.
3. Bentley AJ, Rosman KD, Mitchell D. “Can the sensory symptoms of
restless legs syndrome be assessed using a qualitative pain questionnaire?”
Clin J Pain 2007;23(1):62-66.
4. Stiasny-Kolster K, Magerl W, Oertel WH, Moller JC, Treede RD. “Static
mechanical hyperalgesia without dynamic tactile allodynia in patients with
restless legs syndrome.” Brain 2004;127(Pt 4):773-782.
5. Qu S, Le W, Zhang X, Xie W, Zhang A, Ondo WG. “Locomotion is
increased in a11-lesioned mice with iron deprivation: a possible animal
model for restless legs syndrome.” J Neuropathol Exp Neurol
2007;66(5):383-388.
6. Fleetwood-Walker SM, Hope PJ, Mitchell R. “Antinociceptive actions of
descending dopaminergic tracts on cat and rat dorsal horn somatosensory
neurones.” J Physiol 1988;399:335-348.
William G. Ondo, MD
Professor of Neurology at Baylor College of Medicine
Associate Director, Parkinson’s Disease Center and Movement Disorders Clinic
The Restless Legs Syndrome Foundation is dedicated to
improving the lives of the men, women, and children who live
with this often devastating disease. The organization’s goals are
to increase awareness of restless legs syndrome (RLS), to
improve treatments, and, through research, to find a cure.
www.rls.org
Bedtime Stories
Bedtime Stories are the opinions of the authors only and not of the RLS Foundation, its employees, or its Board of Directors.
Publication in NightWalkers does not imply endorsement by the RLS Foundation. therapies and results described in Bedtime
Stories reflect the experiences of individuals and cannot be generalized to everyone with RLS. It is important to talk to your
healthcare provider and investigate concerns such as safety, efficacy, and cost before making any changes to your treatment
regimen. Stories may be altered for length or clarity.
M
y severe RLS started in 1990. I have repeatedly
augmented on Requip and, less often, on Mirapex.
Most recently, when I augmented on Mirapex, my
doctor prescribed Mirapex ER (Extended Release).
The more stable supply of the drug has worked well –
no augmentation yet. – John
L
et me describe the feelings when my medications don’t
work: As I relax toward sleep, a slight leg jerk starts, then
quickly increases to bed-shaking vigor every 10 to 20
seconds with an “electric” feeling in the muscles of the
thighs, like jolts from touching a live wire or constant bites
from miniature piranhas. This continues maddeningly for
hours. This is my RLS. – Shirley
I
have been a sufferer of RLS for ten years and have finally
found something that has helped. It is called the
“circulation booster” and it is geared towards the elderly
with poor blood circulation in the legs. I am UK based, but
I am sure this machine would be available in other
countries too. The machine sends electrical pulses up your
legs and on the higher settings is very aggressive but
fantastic. I finally am not scared to go to bed! – Andreas
I
am a 60-year-old male in excellent health, except for
having RLS for thirty years. I had tried everything I could
find, including taking extra vitamins and minerals (which
helped very slightly). Then someone recommended I read a
book by Dr. Blaylock called, “Excitotoxins, the Taste that
Kills.” I have been avoiding the problem additives for over
three weeks and am now sleeping quietly through the night.
It is not easy to avoid these additives, but my relief came
the second night of my attempt. – Mike
M
y father died ten years ago. He had RLS. We went to
doctors about his ‘severe panic attacks’ which started every
evening. I now know it was RLS. He suffered so horribly.
The doctors thought he was mentally ill. I have RLS now
and seek help. I want to thank the RLS Foundation for all
you do and for all the information we are able to receive. I
wish my dad had known and doctors had been more
informed in the past. – Malenda
www.rls.org
I
read with dismay that the USDA
approved Horizant (gabapentin
enacarbil) for the treatment of RLS. I
was originally prescribed gabapentin for my RLS, but the
adverse side effects became overwhelming. The most
immediate effect was considerable confusion together with
auditory and visual hallucinations. Finally, I gave up and
told the doctor I was going back to tramadol and Mirapex
though it didn’t work. – Charles
Medical Editor’s Note: Horizant is a pro-drug that gets
absorbed much better into the body and is formulated into
a slow release tablet. Therefore, its actions are very different
than the old gabapentin drugs. Furthermore, potential side
effects are usually only experienced by a minority of
patients.
I
have been diagnosed by multiple therapists/psychiatrists
with mild depression and anxiety disorder. After reading the
RLS Foundation’s information, I am now wondering if I
was misdiagnosed. It would seem that the lack of sleep and
antsy feelings may be RLS-related, not depression/anxiety. I
just turned 30 in April, and my symptoms seem to be
getting worse. I did not know until recently how
debilitating RLS can be. I do wake up several times a night
and can’t say that I have ever woken up feeling rested. I just
thought this was normal. – Victoria
Medical Editor’s Note: Many studies have demonstrated that
RLS patients suffer from depression at greater rates than the
general population. However, we cannot be sure if the
depression is caused by the RLS or linked to RLS for other
reasons (like the chemicals or genetics causing RLS may
also cause increased depression). Depression is very
common as is RLS so we should expect the two diseases to
overlap in many people, and it is easy to see how untreated
RLS would worsen depression. Having said the above, I
have seen several patients who have been able to stop all
their antidepressant drugs and have absolutely no problems
with depression after successful treatment of their RLS.
continued on page 22
Summer 2011 17
Ask the Doctor
Q: In a past trial and error period I tried gabapentin and
it did not work for me. Do you think the new
Horizant would work for me?
A: It depends in part upon what reason the gabapentin did
not work for you. If it was due to side effects such as
sedation or dizziness, then it is possible that you might
experience similar problem with Horizant. However, the
two drugs are not really equivalent in that Horizant
enters the body much more efficiently and predictably
than gabapentin (even though it is converted into
gabapentin in the body) and Horizant is a extended
release formulation that provides effective blood levels of
gabapentin for a much longer time than regular
gabapentin. For those reasons, Horizant may be effective
in patients who have not responded to regular
gabapentin.
Mark J. Buchfuhrer, MD
A: Horizant (gabapentin enacarbil) is a drug which is
converted to gabapentin in the body. It appears to have a
longer duration of action than gabapentin and is
generally used only once a day. We do not know whether
its effectiveness will be different from gabapentin. You
do not say how much gabapentin you have tried and at
what times you have taken it. Often too little is
prescribed to have an effect on RLS. The main study of
gabapentin suggested that daily doses of 1,200-2,400 mg
were needed, but some patients seem to manage on less.
While many patients do tolerate higher amounts, some
report sleepiness, dizziness, or unsteadiness. The FDA has
approved Horizant for a single daily dose of 600 mg. Your
doctor may wish to consider prescribing it if other drugs
have not helped you or have caused side effects.
Michael Silber, MD, ChB
Q: For several years I have been able to dampen my RLS
symptoms almost completely by medicating with
Requip and gabapentin. The side effect of drowsiness,
however, causes problems. What would be the efficacy
of using a small amount of caffeine after dinner?
Would it interfere with sleep or with the medication?
A: A small dose of caffeine in the evening may well help
your sleepiness. But you will have to experiment to see if
it prevents you falling asleep. Especially as we get older,
caffeine may stay in the body a long time. Caffeine
should not affect the drugs you are taking. Although it is
sometimes said that caffeine may worsen RLS, that has
not been my general experience and there are no
satisfactory studies of this. You may wish to discuss the
amount and timing of Requip and gabapentin you are
18 NightWalkers
taking in the evening with your doctor. Could you
manage on a little less? Could the timing of the doses be
adjusted so you are taking more before bed and less at
dinner time?
Michael Silber, MD, ChB
A: While the caffeine will not affect the action of either
medication, it can easily cause insomnia. Caffeine has a
fairly long half-life and for most people who do not
drink a lot of coffee (some who drink a lot of coffee
habitually can drink strong coffee before bedtime and get
to sleep immediately), drinking a caffeinated beverage in
the evening is not advisable.
Mark J. Buchfuhrer, MD
Q: I have just been told I possibly have RLS. I had a foot
surgery one year ago and it did not heal properly. I
have some major damage to the nerve that runs along
the side of my foot. Can nerve damage cause RLS
symptoms?
A: RLS is a disorder of the brain. However, local nerve
irritation in the legs can send nerve messages to the brain
which can induce or worsen restless legs in some
patients. So it is possible that your foot problems may be
playing a role here.
Michael Silber, MD, ChB
Q: I have a severe case of RLS and also celiac disease. I
heard from a friend that Crestor might exacerbate my
RLS movements. So I moved on to Omega 3 DHA
Multi. Is there evidence using Omega 3 can make RLS
symptoms worse?
A: Although Crestor can cause muscle pain, it does not
cause or worsen RLS. There is also no evidence that
Omega 3 products result in any RLS problems.
Mark J. Buchfuhrer, MD
A: There is not good evidence that either Crestor or
Omega-3 fatty acids exacerbate RLS. On the other hand,
celiac disease is associated with an increased prevalence
of RLS. We pointed out this association in 2009 and the
2010 article noted below looked at a much larger series
of patients with celiac disease and RLS. Since low iron is
very common in celiac disease (due to decreased iron
absorption) it is very important to be sure that low iron
stores, as defined by a serum ferritin value of less than
50-70, are not exacerbating the RLS. Less commonly,
vitamin B12 may be low in celiac disease, potentially
causing a neuropathy that can mimic RLS symptoms. In
continued on page 19
www.rls.org
Ask the Doctor
continued from page 18
addition, careful adherence to a gluten-free diet may be
of long-term benefit for RLS in the setting of celiac
disease by decreasing inflammation in the intestine and
improving iron absorption. For more information, see:
Weinstock LB, Walters AS, Mullin GE, Duntley SP. Celiac
disease is associated with restless legs syndrome. Dig Dis Sci
55(6), 1667-73, 2010.
Daniel Picchietti, MD
???
Keep Those Questions Coming!
Please submit your “Ask the Doctor” questions by
email to [email protected] or by mail to RLS
Foundation, 1610 14th St NW Suite 300,
Rochester, MN 55901. Questions are chosen
for print based on available space and
applicability to others.
New Exhibiting
Experience
Awareness week is important to the RLS Foundation. We
strive to continually educate individuals that there is a
community with knowledge and experience available for
them. With this drive forward, the Foundation is exhibiting
to a new audience: AARP.
Since 2001, AARP's National Event and Expo has been
holding an exhibit meeting in a rotating US city each year.
The meeting is called “Life@50+” and is a unique three-day
annual event, providing exhibitors exclusive access to the
50-plus audience. More than 25,000 members and guests
from every state and more than a dozen countries are
expected to attend the 2011 meeting at the Los Angeles
Convention Center in September.
The RLS Foundation will be in such company as
organizations like National Institute of Neurological
www.rls.org
Disorders and Stroke (NINDS), Alzheimer's Association,
National Institute on Aging, American Institute for Cancer
Research, and dozens of other health organizations.
We hope to spread the word about RLS to uninformed
individuals and network with attending exhibitors. If you will
be in the L.A. area and would like to attend, registration is
available through AARP’s website at www.aarp.org/events.
Summer 2011 19
Healthcare Provider Listing
Alabama
Dr. Norma Cuellar, RN, CCRN
University of Alabama
2108 Lavera Dr
Tuscaloosa, AL 35404-4853
Dr. Louis Siegel, MD
Gulf Coast RLS Support Group
13906 Siena Loop
Bradenton, FL 34202-2443
(941) 536-0475
Arizona
Dr. Rochelle Goldberg
REM Medical Specialists/SHC
9305 W Thomas Rd Ste 305
Phoenix, AZ 85037-3366
Idaho
Dr. James M. Herrold, MD
Les Bois Neurology, Inc
3875 E Overland Rd Ste 201
Meridian, ID 83642-9005
(208) 343-6200
Neurology
Dr. Janet E. Tatman, PhD, PA-C
Well Being Systems PLLC
2410 W Ray Rd Ste 4
Chandler, AZ 85224-3549
(480) 905-8755
Sleep Medicine, Psychiatry, Psychology
California
Dr. Mark J. Buchfuhrer, MD FRCP(C), FCCP
Downey Regional Medical Center
11480 Brookshire Ave
Downey, CA 90241
(562) 904-1101
Internal Medicine, Sleep Medicine, Pulmonary
Medicine
Dr. Karen Kirby, MD
PO Box 2860
Aptos, CA 95001-2860
Dr. George Rederich, MD
520 N Prospect Ave Ste 309
Redondo Beach, CA 90277-3043
(310) 376-9492
Neurology
Dr. Robert J. Werra, MD
2 Lookout Dr
Ukiah, CA 95482-4640
(707) 468-5051
Family Medicine
Colorado
Prof. Jennifer Hensley, CNM, Edl
1743 Verbena St
Denver, CO 80220-2136
Pregnancy
Connecticut
Dr. Dominic Roca, MD, PhD
Connecticut Center for Sleep Medicine
30 Shelburne Rd
Stamford, CT 06902-3628
(203) 353-2300
Sleep Medicine
Florida
Dr. William C. Kohler, MD
Florida Sleep Institute
4075 Mariner Blvd
Spring Hill, FL 34609-2467
(352) 683-7885
Sleep Medicine
20 NightWalkers
Illinois
Dr. Andrew D. Ruthberg, MD
1534 Elgin Ave
Forest Park, IL 60130-2618
Dr. Lisa Shives
Northshore Sleep Medicine
3451 Church St
Evanston, IL 60203-1621
Sleep Medicine
Kentucky
Dr. Robert N. Pope, MD, FCCP, ABSM
Owensboro Advanced Sleep Center
1126 Triplett St Ste 102
Owensboro, KY 42303
Sleep Disorders
Massachusetts
Dr. Zeyad Morcos, MD
Neurology-Sleep Medicine
277 Pleasant St Ste 305
Fall River, MA 02721-3005
(508) 675-6068
Neurology
Maryland
Dr. Christopher J. Earley, MD, PhD
Johns Hopkins Bayview Med Ctr
5501 Hopkins Bayview Cir
Baltimore, MD 21224-6821
(410) 550-1044
Neurology, Sleep Medicine
Maine
Dr. Regis P. Langelier, PhD
Seacoast Maine RLS Support Group
PO Box 7560
Ocean Park, ME 04063-7560
Psychology
Michigan
Prof. William H. Fenn, PhD, PA-C
Western Michigan University
2300 Ramblewood Dr
Kalamazoo, MI 49009-8914
Dr. John H. Morrison, DO
Garden City Hospital
35600 Central City Pkwy Ste 106
Westland, MI 48185-2046
(734) 458-3330
Sleep Medicine
Missouri
Dr. John H. Brabson, MD
Johns Health System
1235 E Cherokee St
Springfield, MO 65804-2203
(417) 820-5467
Dr. A. Cosmo Caruso, MD
Saint Joseph Medical Center
1004 Carondelet Dr Ste 410
Kansas City, MO 64114-4801
(816) 389-6100
Sleep Medicine
Dr. Stephen Duntley, MD
Washington University School of Medicine
212 N Kingshighway Blvd Ste 237
Saint Louis, MO 63108-1266
(314) 362-4342
Neurology, Sleep Medicine
Dr. Oscar A. Schwartz, MD
Sleep Medicine Barnes West County
969 N Mason Rd Ste 250
Creve Coeur, MO 63141-6370
(314) 996-8000
Sleep Medicine, Pulmonary Medicine
Dr. Helene A. Emsellem, MD
Center for Sleep and Wake Disorders
5454 Wisconsin Ave Ste 1725
Chevy Chase, MD 20815-6905
(301) 654-1575
Neurology, Sleep Medicine
Montana
Dr. Michael J. Silverglat, MD
Missoula Psychological Medicine
910 Brooks St Ste 202
Missoula, MT 59801-5784
(406) 721-6050
Dr. Peter L. Whitesell, MD
Regional Sleep Disorders
505 Dutchmans Ln # A
Easton, MD 21601-4302
(410) 822-8930
Sleep Medicine, Pulmonary Medicine
North Carolina
Dr. A. Thomas Perkins, MD
Raleigh Neurology Associates, PA
1540 Sunday Dr Ste 100
Raleigh, NC 27607-6000
(919) 782-3456
Neurology, Sleep Medicine
www.rls.org
Healthcare Provider Listing
Nebraska
Dr. Sabin Bista
985300 Nebraska Medical Center
Omaha, NE 68198-5300
Dr. Gilbert Rude, MD
Family Practice Associates
3907 6th Ave
Kearney, NE 68845-3392
(308) 865-2767
Family Medicine
New Hampshire
Dr. Leslie Suranyi, MD
Laconia Clinic
PO Box 637
Laconia, NH 03247-0637
(603) 524-5151
Neurology
New Jersey
Dr. Debra J. DeLuca, MD
Neurology/Sleep Medicine
2 Princess Rd 2F
Lawrenceville, NJ 08648
(609) 895-9000
Neurology, Sleep Medicine
Mangala Nadkarni, MD
Kazmir Sleep Disorder Ctr at St Barnabas
101 Old Short Hills Rd Ste 415
West Orange, NJ 07052-1023
(973) 322-9800
Neurology, Sleep Medicine
Dr. Kalpeshkumar Patel
Maruti Family & Sleep Medicine
495 Iron Bridge Rd Suite 14
Freehold, NJ 07728-5306
Family Medicine, Sleep Medicine
New York
Dr. Bruce L. Ehrenberg, MD
Tufts New England Medical Center
505 W 54th St Apt 722
New York, NY 10019-5059
Neurology
Dr. Marc Heller
PO Box 71
Cooperstown, NY 13326-0071
Dr. Stephen N. Price, MD
46 Old Brick Rd
Roslyn Heights, NY 11577-1817
(516) 293-0344
Psychiatry
Dr. Winona Tse
Movement Disorders, Neurology
5 E 98th St 1st Fl 1637
New York, NY 10029-6501
(212) 241-5607
Neurology
www.rls.org
Ohio
Dr. David V. Berkowitz, MD
Tri-State Sleep Disorders Center
1275 E Kemper Rd
Cincinnati, OH 45246-3901
(513) 671-3101
Sleep Medicine, Psychology
Oregon
Dr. Mark T. Gabr, MD, PC
180 Ramsgate Sq S Ste 150
Salem, OR 97302-5867
(503) 485-0672
Neurology, Sleep Disorders
Pennsylvania
Dr. Neil A. Busis, MD
UPMC Shayside-Aiken Medical Bldg
532 S Aiken Ave Ste 507
Pittsburgh, PA 15232-1521
(412) 681-2000
Neurology
Dr. June M. Fry, MD, PhD
Center for Sleep Medicine
443 Germantown Pike
Lafayette Hill, PA 19444-1813
(610) 828-4060
South Carolina
Dr. Harry Geisberg
2000 E Greenville St
Anderson, SC 29621
Tennessee
Dr. J Brevard Haynes, MD
Sleep Medicine of Middle TN
300 20th Ave N Ste G8
Nashville, TN 37203-2225
(615) 284-7533
Sleep Medicine
Dr. Arthur S. Walters, MD
Vanderbilt University School of Medicine
1161 21st Ave S
Nashville, TN 37232-0011
(615) 322-0283
Neurology, Sleep Medicine
Texas
Dr. Philip M. Becker, MD
Sleep Medicine Associates of Texas
5477 Glen Lakes Dr Ste 100
Dallas, TX 75231-4381
(214) 750-7776 Ext 0
Sleep Medicine
Dr. Clint A. Hayes, MD, FACS
Vein Center of North Texas
102 Memorial Dr Ste 101
Denison, TX 75020-2001
(903) 465-7070
Phlebology
Dr. Raj S. Kakar, MD, MPH
The Dallas Center for Sleep Disorders
6313 Preston Rd Ste 400
Plano, TX 75024-2716
(972) 473-7300
Sleep Medicine
Dr. David Ostransky, DO
North Texas Lung & Sleep Clinic, PA
2801 Hulen St Ste 600
Fort Worth, TX 76107-5459
(817) 731-0230
Sleep Medicine
Dr. Don Watenpaugh, PhD
1521 Cooper St
Fort Worth, TX 76104-2711
Sleep Disorders
Virginia
Dr. Linda S. Sigmund, MD
Neurology Center of Fairfax
3020 Hamaker Ct Ste 400
Fairfax, VA 22031-2220
(703) 876-0800
Neurology
Dr. Nathan Williams
2215 Landover Pl
Lynchburg, VA 24501-2115
(434) 947-3944
Wisconsin
Dr. Jitendra K. Baruah, MD
3201 S 16th St
Milwaukee, WI 53215-4537
(414) 384-5581
Neurology, Pain Management
Canada
Dr. John B. Carlile, MB, BCh
235 Brock St Ste 1
Kingstonk, ON K7L 1S3
(613) 547-9172
Psychiatry
Dr. Jon C. Gatten, DC
181 St. Andrew St East, Upper Level
Fergus, ON N1M 1P9
(519) 843-1490
The healthcare providers listed are active,
paid members of the RLS Foundation. As a
thank you for their membership, we list
them in one issue each year. Thus, this is
not a comprehensive list of those treating
RLS, but rather a list of unendorsed, fellow
members of the Foundation.
Summer 2011 21
Bedtime Stories
Bedtime Stories continued from page 17
I
am a lifelong sufferer of chronic RLS. I just hope people
realize how serious this is. I have gone several nights in a
row without sleep at times. I have tried the cream with no
luck. I have even experienced RLS in my upper extremities
and even neck. Sometimes I just need good RLS friends to
talk to... It can be so embarrassing sometimes being in
public with my legs flailing. We need a 24-hour RLS
hotline. – Robert
Medical Editor’s Note: Although a 24-hour RLS hotline is
an interesting idea, it might be better to find a good RLS
doctor. For some options, you can refer to the healthcare
provider listing on page 20.
T
he RLS Foundation Facebook page* is a great site to
vent on. Lots of supportive people who understand just
where you are. I know at times I feel like RLS is going to
drive me crazy. That’s when it is helpful to get onto this
site. Helps you not feel so alone. – Jan
*www.facebook.com/pages/RLS-Foundation/57399471555
W
I
have found that wrapping my calves in an ace bandage
every night really helps my RLS. I have tried vitamins,
magnesium, potassium, reducing sugar and caffeine,
drinking more water, etc. This is the only thing that helps!
Just don’t wrap you limbs so tight that you cut off your
circulation. I sleep well every night as long as I have my
wraps. – Kathy
I
found the following quote and wanted to share with
those who suffer from our common disease. It was written
by Michel de Montaigne who lived from 1533-1592.
“…People might have said of me from my childhood that I
was crazy in the feet, or had quicksilver in them, so fidgety
and restless are they, wherever I place them.”
RLS
Some call it night walkers and a walk does calm the creepy
crawlers and pain,
Nanny would be proud to know she helped through research to
find a cure for this disease
That’s so insane.
hen I get RLS I drink a glass of real 2% milk. Real
dairy. My symptoms are gone in ten minutes. – Anonymous
in Canada
RLS is due to lack of dopamine in the brain
So we take Mirapex, Requip, have a massage
Anything to relieve the strain
I
We laugh, we cry and wish
Instead of creepy crawlers we could stop this mess
have had RLS for forty years and MagniLife’s “Restless
Legs Cream” is the best thing I’ve found. I take my
medicine, rub some of this cream on and in thirty minutes
it is effective. It really works. – Ann
I
So with continuing support and research
We will find the cure
And that’s a promise – Not a guess.
– Cynthia
saw a post on Facebook for “natural remedies for
RLS.” The first thing I saw at the top of the page was
“CURE”. That is the big clue that this isn’t real. It is the
same old scheme. Anyone who uses the word “cure” is
not being honest with you, because there is no cure as
we all know. – Donna
I
am 16 and have had RLS and PLMD forever. I hate my
RLS, especially in school. My teacher is understandable
enough to let me go walk around the school when I need to
though. My doctor has me trying Lyrica. I now sleep much
better— well enough I missed work once. But I’m glad I’m
oversleeping and not under-sleeping. – Nathan
22 NightWalkers
www.rls.org
RLS Foundation Publications
Membership
Quantity
In addition to knowing that your membership contributions help support the research and education efforts
of the RLS Foundation, you will also receive NightWalkers (the Foundation’s quarterly newsletter), a Medical
Bulletin, medical information card, business cards, chart stickers, membership card, and free shipping and
handling on all publications.
US: $30 Canada: $30 Other international delivery: $40
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Causes, diagnosis and treatment for the patient living with Restless Legs Syndrome: This brochure
(formerly called Living with Restless Legs Syndrome) is written for those with RLS, family
members, and others in search of more information about RLS. The brochure highlights
symptoms and treatments and identifies secondary causes of RLS. (©2011) UPDATED
$ free
Medical Bulletin: This material is intended for medical professionals and contains the latest
diagnosis and treatment information. (©2010)
$ free
Children and RLS: Restless Legs Syndrome and Periodic Limb Movement Disorder
in Children and Adolescents: A Guide for Healthcare Providers. (©2007)
$ free
Depression and RLS: Special Considerations in Treating Depression when the
patient has Restless Legs Syndrome (RLS). (©2011) UPDATED
$ free
Pregnancy and RLS: Vital Considerations in Treating a Pregnant Patient who has Restless
Legs Syndrome (RLS). (©2006)
$ free
Understanding Augmentation and RLS (©2009)
$ free
Surgery and RLS: Special Considerations for the Surgical Team when the patient has Restless
Legs Syndrome (RLS). (©2010)
$ free
2010 Annual Report (©2010)
$ free
Triggers for Restless Legs Syndrome: A Guide to Help You Control and Manage Your RLS. (©2009)
$ free
Understanding Iron & RLS (©2010)
$ free
Medications for RLS (©2011) UPDATED
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Summer 2011 23
Nonprofit Org.
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PAID
Rochester, MN
Permit No. 287
Address Service Requested
1610 14th St NW Suite 300
Rochester MN 55901
Phone 507-287-6465
Fax 507-287-6312
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www.rls.org
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RLS Foundation to Attend
WASM 2011 Exhibit Meeting
In keeping with our mission to increase awareness of RLS, the
Foundation will be attending the annual World Association of Sleep
Medicine (WASM) exhibit meeting, which is a joint venture of the
Canadian Sleep Society (CSS) and International World Sleep Congress.
WASM 2011 will be held in September in Quebec City, Canada.
WASM and CSS will provide an educational forum aiming to advance
current thinking, improve health, and encourage prevention and
treatment of sleep disorders worldwide. It will bring together leading
experts to discuss clinical knowledge amongst sleep clinicians and
researches in the global advancement of sleep medicine.
The RLS Foundation will have exhibit space to reach out to an
international audience of neurologists, psychiatrists, pulmonologists,
internists, general practitioners, pediatricians, sleep disorders specialists,
dentists, psychologists, nurses, and technicians.