NIGHTWALKERS In search of a good night’s sleep

Winter 2015

Stanford Certified
as WED/RLS
Quality Care Center
Page 3
Foundation
Headquarters
Move to
Austin, Texas
page 5

Medical
Marijuana and
WED/RLS
page 8

Massage
Therapy:
An Update
page 11

Pain and
WED/RLS
page 15
formerly known as the RLS Foundation
 From the Director
NightWalkers is the official
Exploring Diverse Topics to
publication of the Willis-Ekbom Serve Our Community
Disease (WED) Foundation

Board of Directors In this time of technological advances in communication,

Jacquelyn Bainbridge, PharmD, Chair NightWalkers newsletter remains a constant for the Foundation to
Lewis Phelps, Vice Chair and Treasurer
Linda Secretan, Secretary
share information with our members on topics that are of interest to
Michael Brownstein, MD, PhD the WED/RLS community. This issue is no exception.
John McDevitt, PhD
James Schaeffer, PhD
Robert (Bob) H. Waterman, Jr. Readers will notice that we have included two articles on a subject that
Michael Zigmond, PhD some readers may consider controversial: medical marijuana. As you
might expect, we have received many requests from our members and
Medical Advisory Board
Birgit Högl, MD, Chair others concerning this subject, and our coverage is intended to
Daniel Picchietti, MD, Vice Chair illuminate some of the issues surrounding medical marijuana.
Diego Garcia-Borreguero, MD, PhD
Jennifer G. Hensley, EdD, CNM, WHNP
Suresh Kotagal, MD Be assured that the WED Foundation and its advisory boards take no Karla M. Dzienkowski, RN, BSN
Clete Kushida, MD, PhD, RPSGT position, for or against, the use of medical marijuana for WED/RLS. Executive Director
Mauro Manconi, MD, PhD
William Ondo, MD
As always, decisions on any treatment plan should be the result of individual discussions between those
Abdul Qayyum Rana, MD, FRCPC living with the disease, their doctors, and others whose opinions they trust.
Michael H. Silber, MB, ChB
Lynn Marie Trotti, MD, MSc
Arthur S. Walters, MD In this issue of NightWalkers, we are also very excited to announce the relocation of our offices to Austin,
John Winkelman, MD, PhD Texas. Austin is a vibrant, growing city with an expanding medical community. We look forward to
Scientific Advisory Board
leveraging our connections locally – as well as nationally and internationally – to build a better future for
James R. Connor, PhD, Chair people who have WED/RLS.
Michael Aschner, PhD
Marie-Francoise Chesselet, MD, PhD
Christopher J. Earley, MB, BCh, PhD, FRCPI
We have pulled together a great team in Austin: Faith, Mary, Zibby and I look forward to serving you,
Emmanuel J. Mignot, MD, PhD our members.
Claudia Trenkwalder, MD
George Uhl, MD, PhD
You are not alone,
Executive Director
Karla M. Dzienkowski, RN, BSN

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: Karla M. Dzienkowski, RN, BSN
NightWalkers, WED Foundation Executive Director
3300 Bee Caves Road Willis-Ekbom Disease Foundation
Suite 650, #1306
Austin, TX 78746

The WED Foundation does not endorse or

sponsor any products or services.

©2015 Willis-Ekbom Disease Foundation

Editors: Karla M. Dzienkowski , Kris Schanilec
Medical Editor: Mark Buchfuhrer, MD,
FRCP(C), FCCP

Warning and Disclaimer

Persons suspecting that they may have
WED/RLS should consult a qualified
healthcare provider. Literature that is
distributed by the Willis-Ekbom Disease
Foundation, including this newsletter, is
offered for information purposes only and
should not be considered a substitute for
the advice of a healthcare provider.

2 I NIGHTWALKERS www.willis-ekbom.org
 Quality Care Centers
Stanford Certified as WED/RLS
Quality Care Center
The WED Foundation has certified the Stanford Center for Sleep The Johns Hopkins Center for Restless Legs Syndrome
Sciences and Medicine as a WED/RLS Quality Care Center. 5501 Hopkins Bayview Circle • Baltimore, MD 21224
Stanford is the fifth institution to join the WED Foundation 410-550-0574
program. Contact: Robin Fishel
rfishel2@jhmi.edu
The Stanford Center for Sleep Sciences and Medicine is a renowned Certified healthcare providers:
sleep center recognized for outstanding patient care and innovative Christopher J. Earley, MB, BCh, PhD, FRCPI
research. Juliane Winkelmann, MD, is a member of the Center. “As Richard P. Allen, PhD
the birthplace of sleep medicine, Stanford has driven considerable
growth in sleep research and treatment. Our partnership with the Mayo Clinic Center for Sleep Medicine
WED Foundation will help improve the quality of life for 200 1st Street SW • Rochester, MN 55905
individuals living with Willis-Ekbom disease by guaranteeing the 507-538-3270 (central appointment office)
highest standard of care,” says Dr. Winkelmann. www.mayoclinic.org/sleep-center-rsrt/appointments.html
Certified healthcare providers:
The WED Foundation is establishing a network of certified Bradley F. Boeve, MD
WED/RLS Quality Care Centers to improve diagnosis and Suresh Kotagal, MD
treatment of the disease worldwide. Provider certification requires a Mithri Junna, MD
high level of expertise and experience treating WED/RLS patients. Melissa C. Lipford, MD
The program benefits patients and families through: Michael H. Silber, MBChB
Erik K. St. Louis, MD
• Recognition of clinics as leaders in the field and as specialty centers Maja Tippmann-Peikert, MD
for patients who are traveling or in search of knowledgeable
healthcare providers The University of Texas Health Science
• Availability of clinic staff as information resources for referring Center at Houston (UTHealth)
primary care providers 6410 Fannin Suite 1014 • Houston, TX 77030
• Patient educational offerings, print materials and connections with 832-325-7080 (Department of Neurology)
WED Foundation local support groups Certified healthcare provider:
William G. Ondo, MD 
“Access to a higher quality of care is vital,” says WED Foundation
executive director Karla Dzienkowski. “We are pleased to welcome Innsbruck Medical University
such a distinguished group of physicians and researchers to our Department of Neurology, Sleep Lab and Sleep Disorders
Quality Care Center program.” Outpatient Clinic
Anichstr. 35, 6020 • Innsbruck, Austria
To learn more about the WED/RLS Quality Care Center + 43 512 504-23890
Program, visit willis-ekbom.org/quality-care-program. Contacts: Maria Kuscher, Cesarie Ndayisaba,
Manuela Oberlechner
WED/RLS Quality Care Centers schlaf-neurologie@i-med.ac.at
Certified healthcare providers:
Stanford Center for Sleep Sciences and Medicine Birgit Högl, MD
450 Broadway Street Birgit Frauscher, MD
Pavilion B, 2nd Floor, MC 5730 • Redwood City, CA 94063 Elisabeth Brandauer, MD
650-723-6601 (central appointment office) Thomas Mitterling, MD
Certified healthcare providers:
Clete Kushida, MD, PhD, RST, RPSGT
Christian Guilleminault, MD How You Can Help Improve WED/RLS Treatment
Chad Ruoff, MD You can help support improved diagnosis and treatment of
Mark Buchfuhrer, MD, FAASM WED/RLS my making a designated gift to our Quality Care
Kathleen Poston, MD, MS (Neurology) Center program. To learn more, visit www.willis-ekbom.org
or call 512-366-9109.

www.willis-ekbom.org NIGHTWALKERS I 3
WED Foundation News
Remembering
Juanita Therrell
Juanita W. errell passed away on “Juanita was a pioneer in bringing awareness to the condition
December 9, 2014. Juanita was a restless legs syndrome. As the first support group leader, she
founding member of the WED provided a forum for individuals living with WED/RLS to
Foundation (then the RLS Foundation), share their experiences. e Foundation is thankful for Juanita’s
served on the board of directors and service to our organization and the WED/RLS community.”
started the first WED/RLS support Karla M. Dzienkowski, RN, BSN
group, named Sleepless in Seattle. In
addition to teaching school and raising a “She was a dynamic, talented, enormously hardworking
family, Juanita started the library at woman on the board of directors and with support group
Juanita W. errell Newport Covenant Church in Newport, leaders. I know she suffered greatly with RLS. I remember
Washington, which she ran for 19 years. Juanita with great respect and admiration.”
She greatly enjoyed landscaping with both native plantings and Sheila Connolly
ornamentals, including the propagation of thousands of
trilliums. “Juanita was one of the few whose name was mentioned with
Virginia, Pickett, Art and Richard. She was clearly one of a
An avid supporter of the Foundation and others affected by few pillars and will be truly missed.”
WED/RLS, Juanita touched the lives of countless people in Robert Balkam
the WED/RLS community. She will be greatly missed.
“I was very sorry at the passing of Juanita errell. I communicated
with her many times by email and had the pleasure of getting to
know her personally at national meetings. She was always friendly
Give to the Max and encouraging to our own personal work on restless legs
syndrome… She stands as one of the original RLS pioneers…
Raises $21K She was active in advocating for the WED/RLS community.
She will be missed.”
We are so pleased with the response to this year’s “Give Arthur S. Walters, MD
to the Max” challenge on November 13. anks to the
generosity of our friends who provided matching funds
and to over 50 individuals who made donations through
givemn.org and our website, we exceeded our goal and
raised $21,641.10 in just one day!
Honor Roll
is support will help us continue serving your kids,
The Willis-Ekbom Disease (WED) Foundation is sincerely grateful for the
families, neighbors and friends who have WED/RLS, donations we have received in memory and in honor of the following
and shows just how strong we are when we band together. individuals from October 29, 2014, to January 9, 2015:
To everyone who participated, thank you!
In Honor of: In Memory of: Earl G. Wogoman
Liv & Einar Asbo Jane L. Bourn Joyce L. Zuhlke
Randi Borofsky Jim Briggs
Lauren Canning Judy Burke
Lisa S. Cressman Bud Dillihunt
Joseph Dill Evelyn Dunn
Karla Dzienkowski Luise “Liesel” Engelbert
Joan Elder Beverly W. French
Cindy Harris Phyllis Hunn
Gordon Haughey J. Maurice Nevins
Robert Krausz Mrs. Stanley Pearce
Trevor Payne Brenda T. Stotts
Ezra Pound Alberta Terlouw
Jerry Vulstek Juanita Therrell
Elizabeth L. Tunison

4 I NIGHTWALKERS www.willis-ekbom.org
 WED Foundation News
Foundation Moves Headquarters to Austin, Texas
By Lew Phelps
Vice Chair and Treasurer, WED Foundation Board of Director

The Willis-Ekbom Disease Foundation has moved its

headquarters to Austin, Texas.

Over the past year, I have led a task force on the Board of
Directors to evaluate the best location for the headquarters of
the Foundation. We considered many alternatives, including
staying in Rochester, moving to the area around our nation's
capitol, moving to an area with a large-scale medical research
community (that is, Boston or San Francisco) and moving to
Austin, Texas.

Ultimately, the board decided that Austin has the most to offer
our Foundation – not only because it is the home of our current
executive director, Karla Dzienkowski, but also because it is a
major center for medical research, a location with a highly
educated and committed workforce, and a community with a
very strong support system for nonprofit organizations like ours.
The Foundation has historically established its headquarters
based on the residence of its executive director. We were
originally headquartered in North Carolina, because that is
where the executive director, Carolyn Hiller, lived. When she
moved to Rochester, Minnesota, we moved the organization
with her. Following that pattern, and in light of recent staff
changes, Austin made the most sense.
The Foundation has benefitted greatly from a long-standing
relationship between Karla and National Charity League, Inc.
(NCL). If you’re not familiar with the NCL, I urge you to visit
www.nationalcharityleague.org to learn more about this
remarkable philanthropic organization. They foster mother-
daughter relationships and are committed to community
service, leadership development and cultural awareness.
Through her past work as president of the Texas chapter of
NCL, Karla has built a solid network of local relationships and
resources that will, coupled with those already established
nationally and internationally, provide a large pool of support to
the Foundation going forward.
Moving an organization halfway across the country can present
challenges, but so far we’re meeting those challenges head on.
We have purchased used furniture from another nonprofit
organization, saving thousands of dollars. We are transitioning
our entire computer data storage and services system from the
old (and failing) hardware-based system in Rochester to an
Internet-based system (in “the cloud”) for a more reliable and
secure IT solution. We were able to engage a nonprofit
organization in Atlanta to manage the data transfer project at a
much lower cost than any commercial service providers that
provided bids.
The final move from Rochester to Austin took place in January,
when paper records, some office equipment, and other useful
resources were transferred to our new location. A big thank you
to John and Karla Dzienkowski for their countless hours
devoted to making this move successful, not to mention the
cross-country trek!
Our new phone number is 512-366-9109. Phone calls to our
Rochester number will be transferred automatically to our new
offices in Texas for several months.

Our new offices are in an office suite in a desirable Austin The Foundation’s new mailing address is:
location. We are leasing 640 square feet of space and have 3300 Bee Caves Road
unlimited access to conference room, kitchen, reception and Suite 650, #1306
other areas that are shared by tenants in the office complex. Austin, TX 78746
This new space will meet our organizational needs at a lower Tel: 512-366-9109
cost than our Rochester lease.

www.willis-ekbom.org NIGHTWALKERS I 5
Quality Care Centers
Quality Care Centers: How We Are Listening
By Bob Waterman
Chair Emeritus, WED Foundation Board of Directors
When Tom Peters and I were doing the research for, and writing,
In Search of Excellence, we were struck by how badly some
American companies were battered by Japanese and European
competition. To oversimplify a bit, but not by much, American
managements were not listening. Not listening to their customers.
Not listening to American quality gurus like W. Edwards Deming
and Joseph M. Juran. e Japanese and many Europeans were
listening. We weren’t. As a result, especially in the auto and
consumer electronics industries, we produced a lot of junk.
When American companies, large and small, got their acts together
with such programs as “total quality” and “six sigma,” their
customers responded, market share went up, costs went down
(less mistakes and rework), and profits improved. Of signal
importance, American companies stopped losing business to
foreign competition.
Years ago I gave a speech to a big convention of doctors. My central
point was that doctors might not be listening to their patients. A
huge opportunity, I opined, might be waiting for those doctors
who listened, then followed the same approaches to quality that
American industry had found useful. e first remark from the
audience was this: “e only thing you’ve said that I agree with is
that you ‘don’t understand medicine.’” Fortunately (for me), other
members of the audience came to my defense.
But many must have agreed with that first statement. Just a few
days ago the New York Times tells me that “physicians wait just 18
seconds before interrupting patients’ narratives of their symptoms.”
And the researchers who produced that quote discovered that over
60 percent of patients misunderstand directions after a doctor’s
visit. Evidently there is room for improvement in the conversation
between patients and doctors.
One glowing exception to this assertion seems to be our nation’s
network of stroke centers. Not long ago a close friend had
symptoms of what might have been a stroke. (It wasn’t, thank
goodness.) We rushed her to a nearby certified Primary Stroke
Center, where she was admitted to the hospital immediately and
asked a battery of questions to help sort out whether a stroke was
imminent or in progress, then rushed past the usual admitting
procedures so that the suspected stroke could be further diagnosed
and, if needed, immediately treated.
Such a streamlined process for listening had not always been the
case. In 2003, the American Stroke Association, concerned with the
quality and speed of stroke management, launched a program
under which more than 1,000 stroke centers nationwide now have
6 I NIGHTWALKERS
been certified. To receive certification, a center must follow
guidelines that ensure adherence to best practices for stroke
diagnosis and care. ey must show that they can tailor treatment
to individual needs, and they must show that they can be part of a
network that promotes the flow of information across settings and
providers. is sounds exactly like the kind of action that industry
has taken to promote total quality.
One of the questions our Foundation gets asked most frequently is
“Where do I go for good diagnosis and treatment of my suspected
case of WED/RLS?” It’s been a difficult one for us. We don’t want
to be in the business of recommending individual doctors; we can’t
keep track of them all, and we don’t want to be in the business of
playing favorites.
But, we reasoned, we can parallel what the stroke community and
some others like it are doing for quality in their own disciplines.
With that in mind, we have launched what we call our “Quality
Care Centers.” To be a WED/RLS Quality Care Center, a medical
facility must be able to demonstrate:
• Deep experience in treating cases of WED/RLS
• Experience in managing WED/RLS patients with a wide range of
complexity and comorbidities using approved and off-label
medications
• Experience in treating cases of augmentation caused by
dopaminergic treatments
• Availability of equipment for measuring iron levels, particularly
serum ferritin levels
• Ready access to other doctors in related fields such as psychiatry,
neurology, pulmonology, hematology and sleep apnea
So far, we have designated five WED/RLS Quality Care Centers –
four domestic and one in Europe: Johns Hopkins, Mayo Clinic,
Stanford, the University of Texas Health Sciences Center at
Houston, and Innsbruck Medical University in Austria. We look
forward to many more.
And as with the rest of our big goals on awareness, treatment and
finding that magic cure, we have miles to go before we sleep. One
area in particular, one that started this article, and one where you
can help, is patient feedback. If our Quality Care Centers are to
mean anything, we need to know that they are working well. And
“working well” means listening to and serving your needs.
I regularly read reviews on, say, books at Amazon and movies at
Rotten Tomatoes. In the same way, we need letters from you that rate
how well you are being served by your own doctors, whether or not
Continued on page 6
www.willis-ekbom.org

Continued from page 5
they are part of our Quality Care Center network. If they are part of
the network and doing well, or not so well, we need to know that.
Just as our nation has surged forward in the quality of
manufactured goods through the total quality movement, and
as we have saved thousands of lives through an effective stroke
network, I’m hoping all our kids and grandkids will sleep better
at night because the quality of our WED/RLS care has vastly
improved. at will happen when we can demonstrate that we
are listening to, and helping, you.
__________________________________________________
1
“Doctor, Shut Up and Listen,” Nirmal Joshi, New York Times, Jan. 4, 2015.
Share Your Feedback
Have you visited a WED/RLS Quality Care Center?
Share your experience with us by sending an email to
info@willis-ekbom.org.
Learn More
Visit www.willis-ekbom.org for complete information on
WED/RLS Quality Care Center certification requirements.
www.willis-ekbom.org
Quality Care Centers
How High is the Bar?
In addition to meeting high standards as a medical facility (see page
5), certified WED/RLS Quality Care Centers must also show that
medical staff members have a deep level of experience and expertise.
Clinicians must:
• Hold an MD or PhD (or PhD equivalent) degree
• As a team, have seen a total of at least 200 unique WED/RLS
patients, with each individual physician member having seen at
least 50 unique WED/RLS patients
• Have a high level of experience managing WED/RLS patients
with a wide range of complexity and comorbidities
• Have board certification or its equivalent in sleep medicine, or in
neurology with a specialization in movement disorders
• Have completed at least 25 hours of continuing medical
education in sleep medicine or movement disorders neurology
(with at least six hours dedicated to education in WED/RLS) in
the prior three years
NIGHTWALKERS I 7
Treatment
Medical Marijuana and WED/RLS
By Jacquelyn Bainbridge, PharmD, and Mark Buchfuhrer, MD, FRCP(C), FCCP, FAASM
e medical and recreational use of marijuana is increasing in the
U.S. e drug remains illegal under federal law (even though it is
legal in 23 states and the District of Columbia), but a federal
spending bill passed in December 2014 prohibits the Justice
Department from using federal funds to enforce this ban in states
with medical marijuana laws.
Medical marijuana is recognized as a legitimate medical application
for many disease states. Willis-Ekbom disease (also known as restless
legs syndrome, or WED/RLS) is one disease for which patients are
looking to experiment with medical marijuana to relieve symptoms
when more conventional treatments are unsuccessful, too expensive
or cause unwanted side effects.
Current treatment for WED/RLS
Current treatment for WED/RLS includes dopaminergic agents, an
alpha-2-delta ligand subunit drug, and other medications that are not
approved by the U.S. Food and Drug Administration (FDA) for
treating WED/RLS. e FDA-approved drugs demonstrate
effectiveness by enhancing dopamine activity in the brain (Requip,
Mirapex, Neupro Patch) or by modifying calcium channels on nerves
(Horizant), which changes the excitability of nerves that carry
WED/RLS sensations or pain.
Medical marijuana in WED/RLS
ere are no current studies or clinical trials on the use of medical
marijuana in WED/RLS. ough marijuana is not FDA approved
for medical indications in the disease, anecdotal evidence from some
patients’ experiences with the drug have shown improvement in
some of the symptoms commonly associated with WED/RLS.
Marijuana works mainly by acting on multiple cannabinoid receptors
in the brain to provide variable psychoactive effects (that is, affecting
mental processes) on areas including motor activity, coordination and
pain relief by inhibiting prostaglandin biosynthesis and thus blocking
pain receptor pathways.
Although there are no studies examining the use of marijuana for
treating WED/RLS, there is some clinical experience available based
on its anecdotal use by many patients. Typically, ingested marijuana
(through brownies or cookies, for example) does not seem to benefit
WED/RLS very much, while inhaled marijuana (through a
marijuana cigarette or vaporizer) works very quickly and effectively.
Most WED/RLS sufferers report that after only a few puffs of a
marijuana cigarette or a few inhalations of vaporized medical
marijuana, even very severe symptoms are relieved within minutes.
e relief does not last very long, wearing off after one or two hours.
erefore, inhaled marijuana works best for WED/RLS symptoms
that occur mainly at bedtime. Patients have reported that a one-
8 I NIGHTWALKERS
month supply of medical marijuana may last three to four months
when used to treat bedtime WED/RLS symptoms.
Marijuana is a structurally diverse chemical. Very little is known
about the 489 constituents of the marijuana plant, Cannabis sativa.
It is known that 70 of these constituents are cannabinoids, and the
remainder are potentially unwanted neuroactive substances that cross
the blood-brain barrier. An important distinction regarding cannabis
products is that tetrahydrocannabinol (THC) is the major
psychoactive ingredient (that is, it affects mental processes), and
cannabidiol (CBD) is the major non-psychoactive component. It is
believed that products that are high in CBD and low in THC will
produce wanted effects in the brain with little or no side effects on
mental processes.
Some of the cannabinoids widely consumed are:
• Cannabinoid-rich preparations of cannabis in the herb (marijuana)
or resin form
• Cannabinoid-containing pharmaceutical products containing
natural cannabis extracts (Sativex, a GW Pharmaceuticals drug in
clinical trials in the U.S. and approved for use in Canada and
other countries)
• Synthetic cannabinoid (dronabinol (Marinal)),
tetrahydrocannabinol (THC) or nabilone (Cesamet)
Studies on medical marijuana for treating pain and muscle spasticity
have shown a significant reduction in symptoms compared to
placebo. In addition, these studies found no significant adverse
effects, and patient tolerability to marijuana was good. e most
common side effects of marijuana reported included dizziness,
fatigue, dry mouth and nausea.
Many factors limit the use of medical marijuana in WED/RLS. First,
no clinical trials have documented its benefits for treating
WED/RLS. Second, studies of medical marijuana in pain and
muscle spasticity involved small study populations over a short period
of time, and therefore do not provide information on how a patient
would respond to long-term use. We also do not know the side
effects or complications of using medical marijuana over the long
term. Finally, the use of marijuana is very limited in the U.S. as it is
still considered illegal under federal law.
In summary, in addition to federal acceptance of the legality of
marijuana, more clinical trials are needed to validate whether the
use of medical marijuana would be beneficial in patients with
WED/RLS.
www.willis-ekbom.org
 Treatment
My Experience with Medical Marijuana
By Janice Hoffmann
Please note: e following essay is the opinion of the author only. stopping all medications cold turkey, then adding them back, one by
Publication in NightWalkers does not imply endorsement by the WED one, as needed. I looked at my husband, the blood drained from my
Foundation, its employees, its Board of Directors or its Medical Advisory face, and I nearly ran from the examining room.
Board. No studies have documented the benefits of medical marijuana for
But then, a friend suggested I try medical marijuana. I was skeptical.
treating WED/RLS, and its use remains illegal under federal law.
I did not have much hope for any relief. I was embarrassed. I was
erapies and results described reflect the experience of the author and
afraid. Although legal in California, medical marijuana is a federal
cannot be generalized to everyone with WED/RLS. It is important to talk
offense. Not only did that disturb me as a law-abiding citizen, but
to your healthcare provider before making any changes to your treatment
also my profession requires multiple federal licenses, which I assumed
regimen, and to take into consideration the legal status of marijuana in
were in jeopardy.
your jurisdiction.
I have been a card-carrying medical cannabis user since January
WED/RLS is often trivialized, ridiculed and the butt of jokes. A
2013. In addition to making my WED/RLS manageable, medical
genetic, neurological disorder, it ranks with the worst diseases in
marijuana has largely done away with my narcolepsy, insomnia,
terms of playing havoc on the lives of the afflicted and of their
attention deficit hyperactivity disorder (ADHD) and chronic pain.
spouses and loved ones.
I usually sleep through the night and awaken refreshed. I no longer
People who suffer from this disease describe symptoms in different take the seven drugs I had been taking, but control my symptoms
ways; for me, it’s as if a thousand wriggling, angry worms were with only two medications: Neupro Patch and TetraLabs GoldCaps
trapped in my thighs. If it sounds like it would make you crazy, you (a pharmaceutical-grade marijuana softgel that is available in
are correct. One of the horrid things about WED/RLS is that one various strengths).
begins to doubt one’s sanity. And, when you voice a description of
For me, all of the negatives of medical marijuana, known and
the symptoms, describing them akin to angry worms, it does sound
unknown, don’t compare to the negatives of taking the seven
as if you are one step away from hearing voices.
medications that I was on for years. I’m more alert and less drowsy
Nightwalker’s syndrome is a nickname for WED/RLS. Linked to with judicious use of medical marijuana than I was with the FDA-
circadian rhythms, the symptoms get much worse at night. Sleep stated side effects of the other drugs.
deprivation accrues to a debilitating extent, eventually impairing
Laws on medical marijuana use vary by state. In California, where I
cognitive skills and judgment. At one point, my WED/RLS specialist
live, you must obtain a recommendation from a physician and pick
told me he was amazed I had achieved all that I have. How did I ever
up the medication from special dispensaries. I recommend
have the attention span to finish my doctorate? How have I gotten
Americans for Safe Access (www.safeaccessnow.org) as a national
on plane after plane to go to over 60 countries? How have I pursued
resource for how to be legal with medical marijuana.
my passion for dance, theater and music? e answer is, with great
difficulty and determination. Medical marijuana gave me my life back. Before I started taking it, I
was in the top five worst cases I’d ever heard about. I was a crazed,
WED/RLS often has a comorbidity factor, partnering with sleep
sleep-deprived wreck. Now, I usually manage to get enough sleep to
apnea or another sleep disorder. Mine partnered with narcolepsy.
feel “normal” during the day. My blood pressure, weight and
is was discovered after I went to sleep one afternoon while driving
cholesterol are down. I get more exercise. Friends make comments
home on the freeway. Fortunately, no tragedy occurred. Until I got
like “you look fabulous,” “what have you done?” and “you were really
that part of the disorder under control, I had to hire someone to
bad.” I had no idea how bad I was, until I got better.
drive me around for a few months. If I had a nine-to-five job, I
would have had to declare disability long ago, but luckily I work in a Janice Hoffmann is senior vice president of investments with Morgan
profession that allows for flexible hours and freedom of movement. Stanley and a past chair of the WED Foundation Board of Directors. A
former music professor, she enjoys performing jazz and musical theater,
Like many WED/RLS sufferers, I found relief through a cocktail of
playing tennis, traveling, and spending time with her husband, Larry,
drugs. For many years, I took a combination of seven strong,
and her Maltese dog, Carina.
expensive drugs, each laden with side effects, and thus was able to
lead a semblance of a normal life.
Each January I would consult my physicians. Which of these drugs
could I stop taking? What were the long-term effects? Were there any
other choices? In 2013 when I asked my annual question, I was given
an option of going into a medical facility for a few weeks and

www.willis-ekbom.org NIGHTWALKERS I 9
Pharmacy Update
Disposing of Unused Medications: An Update
By Jacquelyn Bainbridge, PharmD; and Caitlin Butler, PharmD candidate
Medicines play an important role in our health. When they are no
longer needed, however, it is important to discard them appropriately
to avoid harm to others. Unused medications create a public health
and safety concern because they are highly susceptible to accidental
ingestion, theft, abuse and misuse. Also, improper disposal has the
potential of adversely affecting the environment and human health.
In the U.S., new collection methods have recently become available.
Keep reading to learn about different drug disposal options for
expired, unwanted or unused medicines.
Don’t share. Follow instructions. Use take-back programs.
First and foremost, do not give your medicine to others.
Doctors prescribe medicines based on a person’s specific
symptoms and medical history. A medicine that works for you
could be dangerous for someone else. When in doubt about
proper disposal, talk to your pharmacist.
The U.S. Food and Drug Administration (FDA) advises to first
follow any specific disposal instructions on the drug label or patient
information that accompanies the medication. Do not flush
prescription drugs down the toilet unless this information specifically
instructs you to do so.
Another option is to take advantage of community drug
take-back programs that allow the public to bring unused drugs to
a central location for proper disposal. Call your city or county
government’s household trash and recycling service to see if a
take-back program is available in your community. The U.S. Drug
Enforcement Administration (DEA), working with state and local
law enforcement agencies, periodically sponsors a National
Prescription Drug Take-Back Day, when certain locations hold
household hazardous waste collection events for prescription
and over-the-counter drugs.
New in 2014: Mail-back programs and collection receptacles
The DEA released a final regulation on September 9, 2014, to
execute the Secure and Responsible Drug Disposal Act of 2010 in
accordance with the Controlled Substance Act by expanding options
to collect controlled substances from individuals for secure
destruction. Previously, the Controlled Substances Act made no legal
specifications for patients to dispose of unwanted drugs except to give
them to law enforcement; this meant that pharmacies, doctors’ offices
and hospitals were banned from accepting them. Most people ended
up flushing their unused drugs down the toilet, throwing them in the
trash or keeping them in the household medicine cabinet.
10 I NIGHTWALKERS
The final rule allows community pharmacies to conduct take-back
programs and gives people the option of mailing back their unused,
unwanted or expired prescription medications or placing them in a
pharmacy-maintained collection receptacle. Collection methods
include:
1. Take-back events conducted by law enforcement or community
pharmacies (please note: the DEA is not providing take-back
programs at the time of this publication but may do so in the
future)
2. Mail-back programs administered by authorized manufacturers,
distributors, reverse distributors, retail pharmacies, narcotic
treatment centers, law enforcement agencies, and hospitals and
clinics with on-site pharmacies
3. Collection receptacles (permanent drop-off boxes) operated by any
of these same entities. Authorized retail pharmacies and hospitals
or clinics with on-site pharmacies may also operate collection
receptacles at long-term care facilities
To find authorized collectors in your community, call the DEA
Office of Diversion Control’s Registration Call Center at
1-800-882-9539. For more information about the final rule, visit
www.deadiversion.usdoj.gov/drug_disposal.
More information
Regardless of where you live, it is very important that you dispose
of your medications properly to avoid harm to others or to animals.
For guidance, talk with your pharmacist, or visit
www.healthycanadians.gc.ca (Canada) or www.fda.gov (U.S.).
Is it okay to toss medications?
If you are unable to dispose of a medication through a collection
venue, and you do not have special disposal instructions, then you
can safely dispose of most drugs in the household trash. Both the
FDA and the Government of Canada advise taking these steps for
safe disposal:
1. Remove the medication from the original container and mix it
with an undesirable substance, such as used coffee grounds or
kitty litter. This makes the drug less appealing to children and
pets, and unrecognizable to people who may intentionally go
through the trash seeking drugs.
2. Place the mixture in a sealable bag, empty can or other container
to prevent the drug from leaking or breaking out of a garbage bag.
3. Before throwing out a medicine container, scratch out all
identifying information on the prescription label to make it
unreadable. This will help protect your identity and the privacy of
your personal health information.
www.willis-ekbom.org

Massage Therapy and WED/RLS
By Norma G. Cuellar, PhD, RN, FAAN
Massage therapy includes a variety of techniques that may help with
symptoms of WED/RLS. According to the National Center of
Complementary and Alternative Medicine, there is documentation
of massage in ancient writings from China, Japan, India and Egypt.
The research on massage is inconsistent, and very few research
studies examine its benefits with WED/RLS. What is known is that,
as with any medication or treatment, the treatment must be
consistent to get long-term benefits. Massage can be beneficial in
reducing anxiety and stress, which both may exacerbate the
symptoms of WED/RLS.
Massage therapy has few risks involved and is usually performed by
a trained therapist. In the United States, 44 states and the District of
Columbia regulate massage therapists. However, standards of
training differ among states.
It is not uncommon to hear from persons with WED/RLS that self-
massage to the legs is helpful to relieve symptoms. While many
patients report that massage therapy is helpful, there is little evidence
to support this. Massage may be effective in treating WED/RLS
because of the natural release of dopamine following massage
therapy (Field et al., 2005). In one study, urine dopamine levels
increased by 28 percent after massage (Field, 1998). Another
possible benefit is counterstimulation to the cerebral cortex, which
may help diminish WED/RLS symptoms while the patient is
undergoing massage therapy. Other theories of massage therapists
include the possibility that the tactile stimulation during massage
may lessen neural activity in the brain and therefore symptoms.
Lastly, massage improves circulation, which may also relieve the
symptoms of WED/RLS.
Based on the experience of massage experts, it is thought that some
of the uncomfortable sensations in the leg associated with
WED/RLS may be the result of excessive tension of the piriformis
muscle in the lateral rotator group, which consists of six small
muscles that all externally rotate the femur in the hip joint.
Therefore, the massage therapist may focus the massage around the
piriformis muscle to help with WED/RLS symptoms. As in other
complementary and alternative medicine evidence, there is a lack of
research to support this in the literature.
Deep tissue massage applies a deep pressure that is beneficial in
releasing chronic muscle tension, with focus on the deepest layers of
muscle tissue, tendons and fascia (the protective layer surrounding
muscles, bones and joints). The movement is slow and the pressure
deep, concentrating on areas of tension. This massage increases
blood flow through the body and helps reduce inflammation. Deep
tissue massage to the hamstrings, quadriceps and lower extremities
has been shown to be beneficial to relieving the symptoms of
www.willis-ekbom.org
Complementary Corner
WED/RLS (Russell, 2007). Some
people may report that this type of
massage is painful. Be sure and let
the massage therapist know if the
massage is too deep and hurting
you. He or she will adjust to your
comfort.
Finding the right massage
therapist for you
Professional organizations that can Norma G. Cuellar, PhD, RN, FAAN
help you with the selection of a Professor, Capstone College of Nursing,
massage therapist include the University of Alabama
American Massage Therapy
Organization, the National Association of Massage Therapists, and
Associated Bodywork & Massage Professionals. It is important to
find a massage therapist that is credible and reliable. The following
questions may help you in your search.
1. Is the therapist certified in your state?
2. Does the therapist carry professional malpractice insurance?
3. Does the therapist keep medical records or take Subjective,
Objective, Assessment and Plan (SOAP) notes on your sessions?
4. Is the therapist certified in any other therapies in addition to
massage?
Massage therapy is a valid and reliable form of alternative or
complementary treatment for WED/RLS. If you are currently using
massage therapy and it works for you, then you should continue to
use it. If you think you would like to try it, contact the professional
organizations listed above to learn more about massage and the best
way to choose a healthcare provider who is a massage therapist. And
last but not least, be sure to tell your regular healthcare provider that
you are choosing massage as an intervention for your WED/RLS.
References
American Massage Therapy Organization, www.amtamassage.org.
Ruthann Johnson, “How To Find a Massage Therapist,” Associated Bodywork &
Massage Professionals, accessed January 15, 2015, http://www.massagether
apy.com/articles/index.php/article_id/125/How-To-Find-a-Massage-Therapist-.
Field, T. 1998. “Massage therapy effects.” American Psychologist 52: 1270–81.
Field, T., Hernandez-Reif, M., Diego, M., Schanberg, S., & Kuhn, C. 2005.
“Cortisol decreases and serotonin and dopamine increase following massage
therapy.” International Journal of Neuroscience 115 (10): 1397–1413.
Mitchell, U. 2011. “Nondrug-related aspect of treating Ekbom disease, formerly
known as restless legs syndrome.” Neuropsychiatric Disease and Treatment 7: 251–7.
National Association of Massage Therapists, http://namtonline.com.
Russell, M. 2007. “Massage therapy and restless legs syndrome.” Journal of
Bodywork and Movement Therapies 11: 146–50.
NIGHTWALKERS I 11
In the News
By Lynn Marie Trotti, MD, MSc
Migraine and WED/RLS
Midlife Migraine and Late-life Parkinsonism.
AI Scher et al. Neurology. September 2014.
Background:
Migraine headaches are one of the most common neurological
disorders in adults. Prior studies have suggested that patients with
migraines are more likely to have WED/RLS, and vice versa.
Research:
e researchers used data from a study that has been ongoing since
1967 called the AGES-Reykjavik Study. is study was initially
started to evaluate heart disease in Iceland and has collected extensive
information about participants at different points in time. Based on
earlier studies showing a link connecting WED/RLS and other
movement disorders with migraine, the researchers evaluated whether
having migraine in middle age predicted either WED/RLS or
Parkinson’s disease in later life.
When participants were roughly middle-aged (at an average age of
51, ranging from age 33 to 65), they were surveyed about headache
frequency and characteristics. Years later (at an average age of 77,
ranging from age 66 to 96), they were asked the four International
RLS Study Group (IRLSSG) questions about WED/RLS symptoms,
as well as questions about Parkinson’s disease. In their overall group of
5,620 subjects, 23 percent answered yes to all four IRLSSG questions
and were considered to have WED/RLS. Subjects with migraine
headaches with aura and subjects with headaches other than
migraines were more likely to have WED/RLS than subjects without
headaches. Subjects with migraine headaches with aura were also
more likely to report having a diagnosis of Parkinson’s disease.
Bottom Line:
People with headaches have higher rates of WED/RLS than people
without headaches.
New Questions:
e study authors speculated on how headaches and WED/RLS
could be related, including a problem with brain dopamine (which
appears to be involved in both disorders). However, the cause of the
association between these two disorders remains to be determined.
12 I NIGHTWALKERS
WED/RLS in Rural Ecuador
Prevalence of Willis-Ekbom Disease in Rural Coastal Ecuador.
A Two-phase, Door-to-door, Population-based Survey.
OH Del Brutto et al. Journal of the Neurological Sciences.
September 2014.
Background:
A few past studies have tried to determine the prevalence of
WED/RLS in tropical regions. ese studies have generally suggested
that WED/RLS is rare in these areas.
Research:
The study authors sought to evaluate how commonly WED/RLS
occurred in a rural, coastal region of Ecuador. Because prior studies
evaluating WED/RLS in tropical regions have been small or used
diagnostic methods that may not have been fully accurate, the
authors performed a large study (665 people) with a two-step
diagnostic evaluation for the disease. In the first step, all 665 people
were given a Spanish-translated version of the four IRLSSG
diagnostic questions for WED/RLS. In the second step, everyone
who was considered to have suspected WED/RLS based on the
questionnaire (94 people) and an additional 188 people who were
not suspected to have WED/RLS based on the questionnaire (but
were the same age and gender as the people suspected to have
WED/RLS) were evaluated by a neurologist or sleep specialist with
an interview and neurological exam to determine if they had the
disease. Six percent of the 665 people were diagnosed with
WED/RLS using this approach. Using only the questionnaire (not
the detailed evaluation by the neurologist or sleep specialist) would
have resulted in misdiagnosing as WED/RLS a number of other
conditions (such as knee arthritis).
Bottom Line:
WED/RLS occurs in six percent of people in rural Ecuador, which
is more commonly than previously thought.
New Questions:
The IRLSSG questionnaire did not perform as well as an expert
evaluation, but an expert evaluation is not always possible in large
studies of hundreds of people; are there more accurate ways to
diagnose WED/RLS when expert evaluation is not possible?
www.willis-ekbom.org

Impulse Control Disorders and Dopamine Agonist
Medications
Reports of Pathological Gambling, Hypersexuality, and Compulsive
Shopping Associated with Dopamine Receptor Agonist Drugs.
TJ Moore et al. JAMA Internal Medicine. October 2014.
Background:
Relatively small studies have suggested that dopamine agonist
medications may result in compulsive behaviors (for example,
gambling, inappropriate sexual behavior or excessive shopping) in
patients treated for WED/RLS or Parkinson’s disease.
Research:
The U.S. Food and Drug Administration (FDA) takes reports
from patients and health professionals about suspected side
effects from medications. Individuals can decide whether or not
to report a side effect to the FDA, and it is estimated that less
than 10 percent of side effects (perhaps as few as one percent)
are reported. The authors of this study used the FDA database
of all reported serious side effects over 10 years (from 2003 to
2012) to identify all cases of impulse control adverse events.
These included a total of 1,580 events, of which the three most
common impulse control disorders were pathologic gambling,
hypersexuality and compulsive shopping.
In 45 percent of these reports, the patient was taking a dopamine
agonist medication for Parkinson’s disease or WED/RLS (or rarely,
for other disorders). The increase in impulsive behaviors was seen
for all dopamine agonists studied by the authors, but the effect was
most pronounced for pramipexole and ropinirole.
This study was limited by the fact that it relied on voluntary
reporting of medication side effects, and there may be reasons why
side effects are reported more commonly with some medications
than others. For example, if doctors already suspect dopamine
agonists cause gambling, they may be more likely to report
gambling when it occurs in a patient taking a dopamine agonist.
The authors concluded that patients, families and caregivers should
be warned about the possibility of impulse control problems in
patients taking dopamine agonists.
Bottom Line:
Impulse control problems are more likely to be reported with using
dopamine agonist medications than with other medications, in
patients treated for Parkinson’s disease or WED/RLS.
New Questions:
Are some dopamine agonist medications less likely than others
to trigger impulse control problems in patients with
WED/RLS? If a WED/RLS patient develops an impulse control
problem on one dopamine agonist, what are the risks of trying a
different dopamine agonist?
www.willis-ekbom.org
In the News
WED/RLS and Type of Dialysis in Patients with
Kidney Failure
Sleep Disorders in Patients with End-stage Renal Disease
Undergoing Dialysis: Comparison Between Hemodialysis,
Continuous Ambulatory Peritoneal Dialysis and Automated
Peritoneal Dialysis.
RLM Losso et al. International Urology and Nephrology.
October 2014.
Background:
WED/RLS is very common in patients who have kidney failure
and require dialysis. Several different types of dialysis are available,
but it is not known if one is superior for patients with WED/RLS.
Research:
In this study, the authors sought to compare sleep symptoms in
patients receiving one of three different types of dialysis:
hemodialysis (performed three times per week in a clinic or
hospital setting), continuous ambulatory peritoneal dialysis
(CAPD, performed several times throughout the day in the
home setting) or automated peritoneal dialysis (APD,
performed every night in the home setting). WED/RLS was
assessed using the four IRLSSG questions, and patients were
considered to have WED/RLS when they answered yes to all
four. WED/RLS was significantly more common in patients
doing nighttime APD, present in 50 percent of these patients
compared to 23 percent receiving hemodialysis and 33 percent
receiving daytime CAPD.
Bottom Line:
WED/RLS occurs commonly in patients undergoing dialysis for
kidney failure, and the likelihood of having WED/RLS may vary
by type of dialysis.
New Questions:
Should a diagnosis of WED/RLS be part of the decision-
making for which type of dialysis is to be performed in patients
with kidney failure? If a patient develops severe WED/RLS
while undergoing peritoneal dialysis, does changing to a
different kind of dialysis (hemodialysis) help?
NIGHTWALKERS I 13
Living with WED/RLS
What We Can Learn from Books on Death and Dying
By Grant P. Thompson
Having come of age in the 1950s, I can vividly recall the time
when my mother and her friends would cover their mouths and
say in a low whisper, “She has ‘C’, you know!” Like Victorian
women talking about venereal disease, even to say out loud that
a friend had cancer was to inflict shame on the person and their
family. I was never sure why a disease that appeared to strike
people of all stations of life, wealthy and wicked alike, should be
so shameful, but I learned that cancer was not to be talked
about in polite company. What a relief it is now to be open and
honest, allowing us to share information, comfort and support
on what is, after all, simply one of many misfortunes that afflict
human lives.
I’ve been remembering those days as I notice the flood of books
on death and dying. One can hardly open a book review,
browse on amazon.com, or visit a bookstore without finding a
large section of books advising us on how to think about death,
how to stave it off a few years, how to grieve, and how to
prepare for it. I found myself reading these books following my
only brother’s death from Parkinson’s disease. But I have been
surprised that much of what I read to help me deal with my
grief had a great deal to tell me about how I should be living my
life now.
These books on death urge us to consider planning,
demystifying and otherwise bringing out from the darkness the
issues surrounding the end of life. Yet aren’t these issues nearly
the same as those faced by individuals living with a condition
that can be debilitating and painful, yet not easy for outsiders to
see or understand? Willis-Ekbom disease (restless legs syndrome,
or WED/RLS) as I hardly need say to readers of NightWalkers,
can leave one tired, cranky and occasionally unpleasant to be
around. (Full disclosure: Although I don’t suffer from
WED/RLS, I have lived with chronic pelvic pain, often at a
debilitating intensity, since 1995.) Reading about dying and the
days and months near the end of life has opened up my mind to
ways in which openness, preparation and sharing with others
can help make our lives easier and gain us allies in what
otherwise can be a lonely journey.
I’ll start by recommending a deeply funny, painfully honest
account by New Yorker cartoonist Roz Chast of the final years of
her parents’ lives. In Can’t We Talk About Something More
Pleasant?, Chast tells in cartoon form about the pressures and
even humor of taking care of her complaining, obstinate, daffy
mother and father. Deeply loving and honest – painfully so at
times – Chast reminds us of how those of us suffering can make
things harder or easier for ourselves and those we love.
14 I NIGHTWALKERS
Another New Yorker author, Atul Gawande, a physician and
Harvard Medical School professor, has written a wise,
compassionate book on the end of life: Being Mortal: Medicine
and What Matters in the End. The son of two physicians,
Gawande tells the story of how his father had carefully planned
for his own care at the end of life, providing family and doctors
with explicit written instructions. Yet his wife, Gawande’s
mother, panicked, nearly hijacking his father’s wishes until the
family persuaded her to agree to stop treatment. The message of
this book is aimed at doctors as much as patients. “Ask your
patient what is important to them in life and when that is no
longer within their ability to achieve, don’t fight a war simply to
win time in misery.” Gawande’s counsel, it seems to me, is
something that those of us whose lives are diminished in some
way by hardship should ask ourselves: What do we want out of
our lives? Can we accomplish it in spite of the obstacles set in
front of us? Can we be as happy shifting our desires, seeing that
giving up one set of goals frees us to flourish in ways we had
not expected?
Other books vie for a place on our reading list. Bronnie Ware’s
The Top Five Regrets of the Dying reminds us of how to live our
lives now, so we won’t have to share the regrets of wishing we
hadn’t worked so hard, had let ourselves be happier, had stayed
in touch with our friends, had had the courage to express our
feelings and the wisdom to live our lives true to ourselves and
not to the expectations of others. Based on her years working in
palliative care, Ware provides useful guides for action we can
take now, even as we face pain, exhaustion and discouragement.
These are only three of many books on the subject. I urge those
of us who live in pain or discomfort to pick up one or more of
these books, reading them not only as a primer on the end of
life, but in addition looking for tips on how to lead our own
lives now as fully and filled with joy as we permit them to be.
www.willis-ekbom.org
 Pain and Willis-Ekbom Disease/Restless Legs
Syndrome
A Guide to Help You Control and Manage Your WED/RLS
The following was written by William G. Ondo, MD, a professor of
neurology at The University of Health Science Center at Houston, and
director of the WED/RLS Quality Care Center in Houston. Dr. Ondo
has authored more than 200 original articles, review articles, and book
chapters, and has edited two textbooks on movement disorders. His
current research interests include Parkinson’s disease, Willis-Ekbom
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 Willis-Ekbom disease
(restless legs syndrome, or WED/RLS) meet the 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 percent of WED/RLS patients, although
80 percent may report some pain.1,2 This mostly depends on
semantics and how pain is defined. The commonly used McGill Pain
Questionnaire correlates with questionnaires about WED/RLS in
general, but the adjectives most commonly endorsed in the McGill
Pain Questionnaire (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 10 – do not correlate
with WED/RLS scales in studies.
When is WED/RLS painful?
There are several different scenarios where patients may have
traditional pain with WED/RLS. First, pain may be seen specifically
as part of the urge-to-move sensory component. This is part of the
primary WED/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 WED/RLS, but they may also have
a burning, superficial pain in their feet (neuropathic pain). In my
experience, people usually will not distinguish between 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.
Finally, painful symptoms may be caused by chronic long-term
treatment with dopaminergics (that is, Mirapex or 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 WED/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 WED/RLS
www.willis-ekbom.org
Scientific studies have shown some similarities between WED/RLS
and pain. It should be noted that neither condition is entirely
understood. Tests of pinprick to the feet pain ratings (static
hyperalgesia) in WED/RLS patients were significantly elevated in
the lower limb, whereas sensation to light touch (allodynia) were
normal.4 In patients with chronic pain, both were abnormal. In the
subset of subjects whose WED/RLS was successfully treated with
dopaminergics (which do not treat pain), the pinprick hyperalgesia
testing normalized. There is little data to suggest dopaminergics
treat pain in general. However, descending dopaminergic tracts in
the spinal cord are suggested to be involved in WED/RLS5 and
may also be involved with suppression of pain in general.6
In general, large treatment studies of WED/RLS with
dopaminergics have not formally assessed pain. In my experience,
dopaminergic medications dramatically improve the urge to move
in WED/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 is approved by the U.S. Food
and Drug Administration (FDA) for WED/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), probably has a similar
effect. Opioids (narcotics) are also used to treat both WED/RLS
and pain. There are no formal trials to evaluate these drugs in
painful WED/RLS, but they probably help. Improved sleep may
also help pain.
In my experience, people usually will not distinguish
between these two symptoms – pain in the feet versus
the urge to move the legs – unless very carefully
questioned.
Summary
In my opinion, pain specialists often incorrectly treat
WED/RLS. In most cases, there are major differences between
WED/RLS management and pain management, and some
medications used to facilitate pain management can actually
worsen WED/RLS. Local numbing injections and steroid
shots are also ineffective for true WED/RLS. That said, if
a therapy is effective and felt to be safe for any individual
patient, there is no reason to change.
NIGHTWALKERS I 15
William G. Ondo, MD
Professor of Neurology
The University of Texas Health Science Center at Houston

Director, WED/RLS Quality Care Center

6410 Fannin Ste 1014
Houston, TX 77030
832-325-7080

References
1
Ondo W, Jankovic J. 1996. “Restless legs syndrome: clinicoetiologic correlates.”
Neurology 47 (6): 1435–41.

2
Winkelmann J, Wetter TC, Collado-Seidel V, et al. 2000. “Clinical characteristics
and frequency of the hereditary restless legs syndrome in a population of 300
patients.” Sleep 23 (5): 597–602.

3
Bentley AJ, Rosman KD, Mitchell D. 2007. “Can the sensory symptoms of
restless legs syndrome be assessed using a qualitative pain questionnaire?” Clin J
Pain 23 (1): 62–66.

4
Stiasny-Kolster K, Magerl W, Oertel WH, Moller JC, Treede RD. 2004. “Static
mechanical hyperalgesia without dynamic tactile allodynia in patients with restless
legs syndrome.” Brain 127 (Pt 4): 773–82.

5
Qu S, Le W, Zhang X, Xie W, Zhang A, Ondo WG. 2007. “Locomotion is
increased in a11-lesioned mice with iron deprivation: a possible animal model for
restless legs syndrome.” J Neuropathol Exp Neurol 66 (5): 383–88.

6
Fleetwood-Walker SM, Hope PJ, Mitchell R. 1988. “Antinociceptive actions of
descending dopaminergic tracts on cat and rat dorsal horn somatosensory
neurones.” J Physiol 399: 335–48.

The Willis-Ekbom Disease Foundation, formerly the RLS Foundation,

is dedicated to improving the lives of the men, women and children
who live with this often devastating disease. Our mission is to increase
awareness, improve treatments and through research, find a cure for
Willis-Ekbom disease.
© 2015 Willis-Ekbom Disease Foundation. All rights reserved.

info@willis-ekbom.org | www.willis-ekbom.org | facebook.com/WillisEkbomDiseaseFoundation | twitter@WEDFoundation

16 I NIGHTWALKERS www.willis-ekbom.org
 Living with WED/RLS
Become a Support Group Leader
Want to attend a support group meeting, but can’t find a How do I get started?
support group in your area? Interested in starting a support To get started, contact the Foundation to complete an application
group, but not sure how? and provide personal references. Before approving your application,
we will send a short questionnaire to these references and contact
We have an opportunity for you! rough the WED you to set up a phone interview.
Foundation, you can volunteer to establish and lead a support
group for people in your community. To learn more or request an application, please call the Foundation
at 512-366-9109 or contact Mary at mhopkins@willis-ekbom.org.
e role of a support group leader is to support the
Foundation’s goals to increase awareness, improve treatments
and, through research, find a cure for WED/RLS. Support
group leaders develop meetings and facilitate discussions to
share experiences among people who have WED/RLS, are
affected by WED/RLS, or otherwise have an interest in the
disease. Support group leaders work with the Foundation to
provide information about treatment, coping strategies, and
ways to communicate with healthcare providers.

If you want to help people but not lead a support group,

consider volunteering as a “contact” for the Foundation.
Contacts have a similar role as support group leaders in that
they provide support, increase awareness of WED/RLS in their
communities and serve as resources for information. e
difference is that contacts are not required to hold meetings, but
help others one-to-one, whether in person, by phone or by
email.

When you volunteer as a support group leader or contact, the

WED Foundation will provide you with:

• An introductory training session

• A designated WED Foundation email address that will
forward messages to your personal email account
• Complimentary WED Foundation membership as long as you
remain active as a leader
• Assistance and support from Foundation staff when you have
questions, concerns or comments
• Publicity for support group meetings through the WED
Foundation website and email blasts, and an annual mailing in
your geographic area
• Materials to use during WED/RLS Awareness Day every
September
• A support group manual covering topics like how to get
started and hold your first meeting, how to find a medical
advisor, and how to order literature from the Foundation
• Limited reimbursement of expenses such as postage, room
rental, supplies and speaker fees (please inquire before
incurring expenses, as funding is limited)

www.willis-ekbom.org NIGHTWALKERS I 17
WED/RLS Support Group Network
Across the United States and Canada, support groups bring people together to share their feelings about living with WED/RLS, discuss
ways to communicate with their families, friends and healthcare providers, and learn about the latest treatments. The WED Foundation
also maintains a network of contacts. Contacts are individuals who have volunteered to offer support by phone or email to people in
their area who are looking for WED/RLS information, resources and support. They do not hold meetings, but they can assist you in
finding help where you live.
The most up-to-date support group information is available on www.willis-ekbom.org. If you are unable to reach a contact or support
group leader in your area, please contact the WED Foundation at info@willis-ekbom.org.

United States
ARIZONA Susan Schlichting Ed Murfin - Contact IOWA MASSACHUSETTS
Jane Anderson Redondo Beach, CA Jacksonville, FL Thelma Bradt - Contact Sheila Connolly - Contact
Tucson, AZ 310-792-2952 904-573-8686 West Des Moines, IA Hyannis, MA
Tucson@rlsgroups.org Susan@rlsgroups.org jacksonville@rlsgroups.org 515-978-2907 508-790-7640
Thelma@rlsgroups.org sheila@rlsgroups.org
Charlene Travelstead William Schramm Louis Siegel - Contact
Lake Havasu City, AZ Salinas, CA Lakewood Ranch, FL Delila Roberts - Contact MISSOURI
928-453-9019 831-484-9058 941-536-0475 Huxley, IA Roseanna Leach
LakeHavasu@rlsgroups.org MontereyBay@rlsgroups.org louis@rlsgroups.org 515-597-2782 Oronogo, MO
CentralIowa@rlsgroups.org 417-434-5331
ARKANSAS Kristen Weeks-Norton Margaret Walters Southwestmo@rlsgroups.org
John Graves - Contact Davis, CA Sarasota, FL Elaine Tucker - Contact
Little Rock, AR Kristen@rlsgroups.org 941-921-4200 Story City, IA Kathy Page
501-565-0341 gulfcoast@rlsgroups.org 515-733-2299 Smithton, MO
john@rlsgroups.org Daria Wheeler CentralIowa1@rlsgroups.org 660-368-2382
Santa Cruz, CA Richard Wilson CentralMissouri@rlsgroups.org
Carol Mallard - Contact 831-465-0586 Tallahassee, FL KANSAS
Midway, AR daria@rlsgroups.org 850-443-5414 John LaFever NEBRASKA
870-481-5640 tallahassee@rlsgroups.org Wichita, KS Linda Sieh - Contact
carol@rlsgroups.org COLORADO 316-773-5195 Naper, NE
Rhondda Grant GEORGIA CentralKansas@rlsgroups.org 402-832-5177
CALIFORNIA Denver, CO Lorne Ebel Omaha@rlsgroups.org
Sanjana Black 720-319-1458 Newnan, GA Nora Walter - Contact
Fremont, CA rhondda@rlsgroups.org 770-480-9663 Lenexa, KS NEVADA
510-744-6726 newnan@rlsgroups.org 913-268-8879 Flora Woratschek
bayarea@rlsgroups.org Kay Hall KansasCity@rlsgroups.org Henderson, NV
Highlands Ranch, CO IDAHO 702-450-5188
Wesley Doak 303-741-6190 Linda Secretan* KENTUCKY flora@rlsgroups.org
Sacramento, CA Denver1@rlsgroups.org Eagle, ID Ken McKenney
916-612-3232 661-341-0530 Bowling Green, KY NEW HAMPSHIRE
Sacramento@rlsgroups.org Llyn Lankford linda@rlsgroups.org 270-996-7610 Roberta Kittredge
Boulder, CO SoKentucky@rlsgroups.org Hampton, NH
Carol Galloway - Contact 720-562-8148 ILLINOIS 603-926-9328
San Rafael, CA Llyn@rlsgroups.org Gail Sesock - Contact John White - Contact Seacoast@rlsgroups.org
415-459-1609 Herrin, IL Lebanon Junction, KY
marincounty@rlsgroups.org DELAWARE 618-942-7143 502-640-8871 Gail Richens - Contact
Betsy Lacinski - Contact Gail@rlsgroups.org LebanonJunction@rlsgroups.org Hanover, NH
Caroline Chamales Newark, DE 603-643-2624
San Diego, CA 302-292-2687 INDIANA MAINE UpperValley@rlsgroups.org
917-526-1339 Betsy@rlsgroups.org Linda Klug Sally Breen - Contact
caroline@rlsgroups.org Bloomington, IN Windham, ME NEW JERSEY
FLORIDA 812-824-6161 207-892-8391 Elda Costigan
Charmaigne Menn Rae Lapides southernindiana@rlsgroups.org SoMaine@rlsgroups.org Edison, NJ
Rancho Mirage, CA Gainesville, FL 732-310-6895
760-408-2123 352-240-6217 Diane Weissenberger Régis Langelier elda@rlsgroups.org
CoachellaValley@rlsgroups.org rae@rlsgroups.org Indianapolis, IN Ocean Park, ME
317-842-0764 207-351-5352 Dot Quill
Lola Scavo - Contact Mary Lou Mennona Indianapolis@rlsgroups.org seacoastmaine@rlsgroups.org Cape May Court House, NJ
Fullerton, CA Hobe Sound, FL 609-465-2879
714-256-5722 772-546-0750 SoJersey@rlsgroups.org
Morningside@rlsgroups.org treasurecoast@rlsgroups.org

* Member of WED Foundation Board of Directors

18 I NIGHTWALKERS www.willis-ekbom.org
 WED/RLS Support Group Network
NEW YORK Ethel Rebar - Contact Pamela Hamilton-Stubbs Roger Backes Randy Thompson
Michael Haltman - Contact Madison Township, PA Henrico, VA Fitchburg, WI Barrie, ON
Woodbury, NY 570-842-3443 804-273-9900 608-276-4002 705-503-3647
516-338-7500 MoscowHopefuls@rlsgroups.org CentralVirginia@rlsgroups.org Madison@rlsgroups.org wedbarrie@rlsgroups.org
newyorkmetro@rlsgroups.org
Dennis Moore Annette Price - Contact Canada Cyberspace
OHIO York, PA Newport, VA Carol Abboud Online Discussion Board
Jan Schneider 717-881-4552 540-544-7454 Connolly - Contact Moderators
Beavercreek, OH dennis@rlsgroups.org SWVirginia@rlsgroups.org Masham, QC
937-429-0620 819-459-2655 Ann Battenfield
SWOhio@rlsgroups.org RHODE ISLAND Carol Seely - Contact ottawa@rlsgroups.org rlsfmods@aim.com
Brenda Castiglioni Haymarket, VA
OREGON West Greenwich, RI 703-754-2189 Karen Conway Tracy Carolan
Valerie Boggs - Contact 401-385-3029 seely@rlsgroups.org Chilliwack, BC rlsfmods@aim.com
Roseburg, OR brenda@rlsgroups.org 604-792-8729
541-817-4511 WASHINGTON lowermainland@rlsgroups.org Beth Fischer
Umpqua2@rlsgroups.org SOUTH CAROLINA Teresa Kincaid rlsfmods@aim.com
Ida Brassard Spokane, WA Beth Fischer
M. Lynn McCracken - Contact Myrtle Beach, SC 509-999-8234 Yellowknife, NT Betty Rankin
Roseburg, OR 843-234-3140 Spokane@rlsgroups.org 867-765-8062 rlsfmods@aim.com
541-672-3078 ida@rlsgroups.org beth@rlsgroups.org
Umpqua@rlsgroups.org Allyn K. Ruff - Contact Stephen Smith
TEXAS Puyallup, WA Armand Gilks rlsfmods@aim.com
Yvaughn Tompkins Donnie Kee 253-222-5232 Toronto, ON
Eugene, OR Lufkin, TX Tacoma1@rlsgroups.org 416-561-2710
541-682-6315 936-635-4416 Toronto@rlsgroups.org
Lanecounty@rlsgroups.org Donnie@rlsgroups.org Charlotte Spada
Anacortes, WA Gwen Howlett - Contact
PENNSYLVANIA UTAH 360-293-7328 Brantford, ON
Karen Walborn Spencer and Morgan SkagitCounty@rlsgroups.org 519-753-1028
Carlisle, PA Christensen - Contacts gwen@rlsgroups.org
717-486-3788 Provo, UT Roger Winters - Contact
karen@rlsgroups.org 916-218-9591 Seattle, WA Heather McMichael
spencer@rlsgroups.org 206-755-2526 London, ON
Alice Maxin - Contact morgan@rlsgroups.org roger@rlsgroups.org 519-671-9376
Leechburg, PA LondonOntario@rlsgroups.org
724-295-4117 VIRGINIA WISCONSIN
PittsburghNorth@rlsgroups.org Patricia Arthur - Contact James Alf - Contact Pamela Oake
Lynchburg, VA Eau Claire, WI St. John’s, NL
Kim Jedlowski - Contact 434-386-3804 715-514-1840 709-351-4343
Lower Burrell, PA Lynchburg@rlsgroups.org EauClaire@rlsgroups.org pamela@rlsgroups.org
724-335-0501
kim@rlsgroups.og

International DENMARK ITALY SPAIN

The following independent groups Restless Legs Portalen ferrinistrambi.luigi@hsr.it Aespi, Asociacion Espanola de sin-
work in cooperation with the WED Restless Legs -Patientforeningen drome de piernas inquietas Madrid
JAPAN
Foundation. www.aespi.net
FINLAND Osaka Sleep Health Network
Levottomat jalat RLSry (Finland) www.oshnet-jp.org SWEDEN
AUSTRALIA www.uniliitto.fi WED-Förbundet
Restless Legs Syndrome Australia THE NETHERLANDS
www.rlsforbundet.se
www.rls.org.au FRANCE Stichting Restless Legs Nederland
A.F.S.J.R, Association Française des www.stichting-restlesss-legs.org SWITZERLAND
AUSTRIA Personnes Affectées par le Syndrome Restless Legs Schweiz
Dachverband der österreichischen NEW ZEALAND
de Jambes sans Repos www.restless-legs.ch
Selbsthilfegruppen Brain Research
www.afsjr.fr
www.restless-legs.at www.neurological.org.nz UNITED KINGDOM
GERMANY Restless Legs Syndrome UK
BELGIUM NORWAY
Deutsche Restless Legs Vereinigung www.rlsuk-esa.org.uk
Association Belge du Syndrome Foreningen rastlöse bein
www.restless-legs.org
des Jambes sans Repos (Absjr) www.rastlos.org
www.absjr.be

www.willis-ekbom.org NIGHTWALKERS I 19
Ask the Doctor
The WED Foundation is unable to respond to individual medical
or treatment-based questions due to liability issues. Your personal
healthcare provider knows you best, so please contact him/her with
specific questions related to the ongoing management of your WED/RLS.
We welcome your general-interest medical questions. Select
questions on areas of common interest will be published in a future
issue of NightWalkers. The Foundation will edit questions as
needed and keep them anonymous in the newsletter.
Q: I have just returned home following a massive debulking
operation for peritoneal/ovarian cancer. At the time of my
diagnosis with cancer, my ferritin was 153 micrograms /L.
When I first determined that I had WED/RLS, my ferritin
was eight and had never gone higher than 50. My doctor does
not agree that it should be higher. I am told that ferritin can
rise if related to inflammation from cancer.
I had my WED/RLS under control with two 5/325 milligram
tablets of hydrocodone, but now that is not working. My
WED/RLS is significantly worse to the point of being
unbearable. It also starts earlier in the afternoon and prevents
me from resting if I lie down. I do not want to go on
dopamine agonists because my mother suffered greatly from
augmentation and other side effects. I am holding off
sleeping during the day with the hope that my sleep-wake
cycle will regulate again. I am also not treating the pain
during the day so that I can increase my dose during the
night. Do you have any recommendations for how to deal
with the markedly increased WED/RLS?
A: In the setting of inflammation, the serum ferritin level can indeed
rise, and therefore an apparently normal serum ferritin level may
not be an accurate marker of iron stores in the body. In this
setting it is important to also measure the serum iron
concentration and the percentage saturation, as these measures
are more likely to indicate iron deficiency if it is present. If iron
stores are low after surgery in someone whose WED/RLS
symptoms have dramatically worsened and become intolerable,
some physicians would consider an intravenous iron infusion to
rapidly correct iron deficiency.
Michael H. Silber, MB, ChB
A: It is not uncommon to have exacerbation of WED/RLS in such
situations. You can try other medications such as gabapentin
enacarbil (Horizant), pregabalin (Lyrica) or gabapentin.
Some of the recent reports have shown very good results with
pregabalin. It may also help pain in addition to the feeling of
restlessness.
Abdul Qayyum Rana, MD, FRCPC
A: Your case is fairly complex, as your WED/RLS is worsening and
complicated by your problems with cancer. You may require
combination therapy, which may include an opioid, anti-seizure
drug (Horizant, Lyrica or gabapentin) and even a dopamine
agonist. (You might consider Neupro, which is a long-acting
dopamine agonist that has less of a tendency to cause
20 I NIGHTWALKERS
augmentation.) With the help of an experienced WED/RLS
physician, you should have a very good chance of relieving your
WED/RLS symptoms.
Mark J. Buchfuhrer, MD
Q: I have basic tremor, as the doctors call the cause of my poor
coordination, now worsening as I age. Is this related to my
WED/RLS, and where can I find more information?
A: It is not uncommon to have exacerbation of WED/RLS in such
situations. You can try other medications such as pregabalin or
gabapentin. Some of the recent reports have shown very good
results with pregabalin. It may also help pain in addition to the
feeling of restlessness.
Abdul Qayyum Rana, MD, FRCPC
A: It is most likely that your tremor is not related to your
WED/RLS and that it is just a coincidence that you have two
fairly common medical conditions. There are no studies on this
topic, so there are no further sources of information.
Mark J Buchfuhrer, MD
Q: I wonder if there is any correlation between attention deficit
hyperactivity disorder (ADHD) and WED/RLS. Have any
WED/RLS patients gotten better after taking Ritalin?
A: There have been several reports of association of ADHD and
WED/RLS in various forms. Some reports have suggested that
parents of children with ADHD may have increased prevalence of
WED/RLS. There is currently no consensus about the use of
Ritalin in WED/RLS.
Abdul Qayyum Rana, MD, FRCPC
A: For both children and adults, ADD/ADHD is more commonly
found with WED/RLS than in the general population. It is not
clearly understood why these occur together frequently. Yes,
WED/RLS symptoms are typically better with stimulant
medication such as methylphenidate (Ritalin). While this may help
during the day or early evening, stimulant medication is ill suited for
beneficial effect in the late evening or overnight, due to the alerting
effect impacting sleep. Of course, while stimulant medications are
approved for ADD/ADHD and narcolepsy, they are controlled
substances and can be prescribed for someone with WED/RLS only
if one of those other conditions coexists.
Daniel Picchietti, MD
Q: Is it possible that WED/RLS patients with normal ferritin
levels would benefit from iron supplements?
A: Blood ferritin levels are one of the more sensitive tests for
evaluating iron stores in the body, but they may not always reflect
how much iron is in the brain. Although normal ferritin levels are
defined by most laboratories as above 10 or 20 micrograms/L,
studies have demonstrated that WED/RLS patients may benefit
from increasing their ferritin levels over 50–75 micrograms/L by
taking oral iron. There appears to be an even greater benefit from
continued on page 21
www.willis-ekbom.org

Continued from page 20
intravenous iron therapy, but not everyone responds to this
therapy. It is still not clear as to what ferritin levels may respond
to intravenous iron therapy. Some patients with quite reasonable
ferritin levels (over 100 micrograms/L) have demonstrated a
response to intravenous iron therapy in anecdotal cases (in my
experience).
Mark J Buchfuhrer, MD
Q: I have sleep apnea. I have noticed during the day when I’m
tired that my restless leg kicks in. Is there a connection? Also,
when WED/RLS happens to me, if I start walking around, it
subsides faster than when I’m sitting down.
A: Yes, it has been noted by many patients, and corroborated by
research, that WED/RLS symptoms tend to worsen when one is
tired.
Birgit Högl, MD
A: It is typical for WED/RLS symptoms to act up when there is
physical and mental inactivity. Conversely, symptoms subside
when there is physical activity or mental stimulation. The more
intense the stimulation (e.g., walking, running or engaging in
vigorous discussion), the better the effect. Of course, this is why
WED/RLS symptoms are problematic when a person does quiet,
relaxing activities or tries to fall asleep. Of note, it is very
important to treat sleep apnea effectively when there is
WED/RLS. Untreated sleep apnea has an aggravating effect on
WED/RLS symptoms.
Daniel Picchietti, MD
Bedtime Stories
Bedtime Stories are the opinions of the authors only and not of the WED
Foundation, its employees or its Board of Directors. Publication in
NightWalkers does not imply endorsement by the WED Foundation.
Therapies and results described in Bedtime Stories reflect the experiences of
individuals and cannot be generalized to everyone with WED/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.
To submit your story for publication, please send an email to
info@willis-ekbom.org. Thank you,“W.” for sharing your story in
this issue!
www.willis-ekbom.org
Ask the Doctor
Q: I’ve had WED/RLS most of my life. It has become much
more severe in the past six months. I don’t take any
medications on a regular basis but have been able to control it
at night with a variety of sleep aids (Ambien, Advil PM,
Benadryl, Xanax). I’ve only taken them on an as-needed
basis, and usually just a few nights per week. That was until
recently. The Advil PM and Benadryl seem to make my
WED/RLS worse. And now, I feel the need to move my arms,
legs and shoulders. It happens any time of the day if I am
sitting or trying to relax.
Last night I had a particularly scary sensation. I was trying to
sleep without any drugs. However, it felt like my entire
insides were vibrating. I finally got up and took 5 mg of
Ambien. It took a long time to have an effect. My doctor
prescribed Requip, but I am reluctant to take it because of all
the listed side effects.
A: Advil PM and Benadryl both contain diphenhydramine, which is
known to worsen WED/RLS unless it puts you to sleep before you
can experience the increase in symptoms. Requip is a reasonable
drug but may cause augmentation when used long term. Another
choice of treatment (which is a different class of drug) to discuss
with your doctor is Horizant. I have heard a few patients complain
of a similar whole-body vibration sensation when their WED/RLS
symptoms are very severe and have spread to several body parts.
Mark J. Buchfuhrer, MD
My exercise program:
Swimming: 1 mile, 3x/week
Pilates: 3x/week
Walking: 2–3 miles, 3–4x/week
Stretching: 2–3x/week
Hope this helps!
– W.
NIGHTWALKERS I 21
Clinical Trials
A clinical trial is a research study that uses volunteers to investigate
specific health questions. The WED Foundation does not conduct
clinical trials; however, as a service to our members we list clinical trial
opportunities on our website and in NightWalkers. Below is a partial
list of WED/RLS clinical trials currently seeking volunteers. Please
contact the institution directly if you are interested in participating. All
studies listed have received Institutional Review Board (IRB) approval,
which allows us to ensure that they follow established protocols. Please
note: This is not a comprehensive list. To search for clinical trials in
your area, visit www.searchclinicaltrials.org or www.clinicaltrials.gov.
To learn more about clinical trials, download our Clinical Trials and
Research handout at www.willis-ekbom.org or request a paper copy
using the publication order sheet on page 23.
Have you been diagnosed with restless legs syndrome? Are you
currently taking medication to treat restless legs syndrome
(RLS)? Massachusetts General Hospital, Boston; and Spaulding
Rehabilitation Hospital, Cambridge; are seeking men and
women ages 20 to 65 to participate in a research study looking
at the effects of restless legs syndrome on blood pressure. To
participate, you cannot have diabetes, have high blood pressure or
smoke. Participation will consist of three study visits for a total of
up to seven hours. You will receive up to $300 for your participa-
tion. For more information and eligibility requirements, please call
Laura at 617-643-6026 or email lschoerning@partners.org.
•••••
Would your friend or family member (not a blood relative, if
you have WED/RLS) like to make a lasting contribution to
groundbreaking research? A Johns Hopkins team is recruiting
healthy adult volunteers for a study on the role of glutamate in
WED/RLS. In some cases, reimbursement may be available
for time and travel expenses. To learn more, contact Sherry
Nickerson at 410-550-1046 or snicker2@jhmi.edu.
NeuroTrials Research in Atlanta, Georgia, is conducting a local
study to examine the safety and efficacy of a new investigational
drug for Willis-Ekbom disease (restless legs syndrome). Study-
related care and study drug are provided at no cost. Qualified
participants will be compensated for time and travel. To qualify,
participants must be 18 to 70 years of age, have a diagnosis of
WED/RLS for over six months, experience symptoms of
WED/RLS for at least 15 nights per month, and otherwise be in
good general health. If you are interested in learning more about
this study, or to find out if you qualify, call 404-851-9934 or visit
www.neurotrials.com.
•••••
If you live in the New York City area, you may be eligible to
participate in a new research opportunity. We are conducting a
research study to determine whether there are changes in the
retinal structure of the eyes of individuals with Willis-Ekbom
disease (WED/RLS) compared to individuals with Parkinson’s
disease, individuals with multiple system atrophy, and healthy
controls. The study will take place at the New York University
Langone Medical Center and will require one visit, lasting
approximately one to two hours. The visit will include an initial
screening and an eye exam.
There is no direct benefit to you or expense reimbursement
available from your participation in the study. It is hoped that the
knowledge gained will be of benefit to others in the future. Studies
done for this research study are not a part of your regular medical
care and will not be included in your medical record. If interested,
please contact Dr. Jose Martinez at Jose.Martinez@nyumc.org.

For Sale – Timeshare Unit in Austria Ski Region

e WED Foundation has received a donation of a one-bedroom timeshare unit located in St. Johann, Pongau, Austria. e unit
is part of the Alpenland Sporthotel. Although the timeshare rights are good for any time of the year, this location is primarily
desirable as a skiing destination. e hotel has a four-star rating (out of five) on the tripadvisor.com website.
Similar units in this hotel have sold recently for about $5,000, but the price is highly negotiable for Foundation members. e
Foundation has no way to make use of this facility, and wishes to sell it. Funds received in the sale will support the ongoing work
of the Foundation.
If you have an interest in purchasing the timeshare or would like more information, please contact the WED Foundation at
dzienkowski@willis-ekbom.org.

22 I NIGHTWALKERS www.willis-ekbom.org
 Publications
Publication Order Sheet
Please note that most of our publications are available at www.willis-ekbom.org for viewing and downloading.
Quantity Patient Brochures
Causes, Diagnosis and Treatment for the Patient Living with Willis-Ekbom Disease/Restless Legs Syndrome.
Children and RLS: Restless Legs Syndrome and Periodic Limb Movement Disorder in Children and Adolescents:
A Guide for Healthcare Providers.
Depression and RLS: Special Considerations in Treating Depression when the Patient has Restless Legs Syndrome.
Surgery and WED/RLS: Patient Guide.
WED/RLS in Cognitively Impaired Older Adults.
Medical Bulletin. Contains the latest WED/RLS diagnosis and treatment information for healthcare providers.
Free to members; $10 to nonmembers.
“Revised Consensus Statement on the Management of Restless Legs Syndrome.” Article in September 2013 issue of Mayo
Clinic Proceedings. Provides a practical treatment approach for healthcare providers. Free to members; $5 to nonmembers.

Quantity Patient Handouts Quantity Patient Handouts

WED/RLS Triggers Activity and Exercise
Suggested Coping Methods Depression and WED/RLS
Understanding Augmentation Pain and WED/RLS
Elderly Population Clinical Trials and Research
Understanding Possible “Mimics” Your Child with WED/RLS
The Role of Iron in WED/RLS A Quick Guide to Living with WED/RLS
Medications for WED/RLS Understanding Drug Action
Drug Holidays and WED/RLS WED Foundation Research Grant Program
Symptom Diary for WED/RLS Complementary/Alternative Medicine and WED/RLS
Your First Doctor Visit for WED/RLS Hospitalization Checklist

MEMBERSHIP
Yes, I want to join the Willis-Ekbom Disease Foundation or renew my membership. ($35 U.S. or Canada • $45 International)
(Please make any changes to address on reverse side.)
DONATION
I would like to make an additional donation of $________ for research WED/RLS Quality Care Center program
education where it is needed most
I would like to make a recurring monthly gift of $________ for research WED/RLS Quality Care Center program
Start date: __________ End date: __________ education where it is needed most
I am setting up a monthly auto bill payment to the WED Foundation through my checking account. Please accept my
monthly/quarterly gift of $________ for research where it is needed most
PAYMENT METHOD
I have enclosed a check in the amount of $_______ in U.S. dollars, drawn on a U.S. bank, payable to the RLS Foundation or
the Willis-Ekbom Disease (WED) Foundation.
Please bill $______ to my American Express Discover MasterCard VISA
Card number________________________________________ Expiration date ___________________
CONTACT INFORMATION (We do not sell or share our mailing list.)

Name ________________________________________ Address ______________________________________________

City ____________________________________________ State ____________________ Zip ______________________

Email address _____________________________________________ Phone number _____________________________

www.willis-ekbom.org NIGHTWALKERS I 23
 Nonprofit Org.
U.S. Postage
PAID
Rochester, MN
Permit No. 289
Address Service Requested

formerly known as the RLS Foundation

3300 Bee Caves Road

Suite 650, #1306
Austin, TX 78746

Tel: 512-366-9109
info@willis-ekbom.org
www.willis-ekbom.org

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