Restless Legs Syndrome Foundation Blog

RLS Discussion Board Moderator - Now Recruiting Volunteers!

Join the RLS Foundation volunteer network

The RLS Foundation is seeking volunteers to join our dedicated team of discussion board moderators! The RLS discussion board is a forum where individuals can post questions and discussion topics, connect with other individuals and provide virtual support: http://bb.rls.org/. If you enjoy online communication, offering encouraging and supportive messages to fellow community members and bringing awareness to RLS Foundation resources, this role might be a good fit for you! If you are interested in learning more about this volunteer position or the application process, please email elyse@rls.org.

Responsibilities of discussion board moderators:

• Function as part of a team of moderators with shared responsibilities (currently, we have a team of four discussion board moderators).
• Monitor and respond to new threads to maintain active engagement and ensure all new posts receive a welcoming and supportive reply.
• Provide thoughtful, empathetic and supportive responses without providing medical advice.
• Process new discussion board registrations.
• Handle emails from individuals who may require assistance creating an account, logging in or finding their username and password.
• Regularly monitor the email provided to you by the RLS Foundation. This email will be posted publicly in NightWalkers and on the website.
• Respect and maintain the confidentiality of all users by keeping any personal information shared strictly within the forum.
• Understand and uphold Foundation policies on acceptable forum participants and appropriate content.
• Always remind participants that it is best to consult a qualified medical provider before making any changes to their RLS treatment plan.
• Promote RLS Foundation membership, resources and events.

Relevant Skills:

• Strong written communication skills. Use concise and supportive language.
• A deep understanding of RLS, its impact and challenges faced by those living with RLS.
• Familiarity with RLS Foundation resources and membership.
• Experience with technology, troubleshooting basic tech issues and operating the computer programs administrative control system (training provided).

Time Commitment:

We are looking for a long-term volunteer dedicated to helping the RLS community. This role typically requires 2-3 hours per week.

Benefits:

• Complimentary RLS Foundation membership during your time as a volunteer.
• Joining a network of RLS Foundation support volunteers.
• Annual training provided by the RLS Foundation.

If you are interested in learning more about this role, please email elyse@rls.org.

The Night Sky Surrounds Me: My Journey with RLS

I watch the night sky. On clear nights, when Orion moves slowly from east to west, his archer belt pointing directly to Sirius, I feel myself moving with the Earth’s turning as I keep company with the moon, new to crescent to half to gibbous to full, cycling, ever cycling. Once in my nighttime wanderings, I saw an atmospheric river rushing directly over my head, exactly as if I were standing in a transparent bubble on a river bottom, looking upwards.

The night sky and keeping up with the weekly New Yorker were the best and the only good things about the four years I spent nightwalking during the COVID-19 pandemic. No matter how exhausted I was from lack of sleep, I had to keep moving.

Gabapentin, my RLS medication of 18 years, stopped working suddenly in December 2019. For two years, I saw three well-meaning but underinformed sleep physicians, who tried and failed to treat my refractory RLS. These doctors advertised themselves as experts in RLS; I believe they sincerely thought they were. They prescribed medications that had no effect, medications that worked for a few months and then augmented my symptoms beyond bearing, and medications that made me so sick I thought I was overdosing. My husband called 911 then – the result of one misguided prescription.

It's difficult to describe the despair that RLS evoked in me, because the disease robs me of both reason and creativity, of both hope and perspective. I was ashamed to tell even my close friends and family about my agony. When I tried, I saw the incomprehension in their eyes. After all, everyone knew someone with mild RLS symptoms. They could sleep. Why was it so hard on me? I didn’t know either.

I lived with this despair for the last two years of my RLS excursion to hell before I found the RLS Foundation in late 2023. I had no RLS medication during those terrible two years. I thought I was condemned, that nothing could help me. I was in a black hole, which swallowed up my ability to connect with my friends and family, scrubbed beauty out of every day, made my nights a torture chamber, and destroyed my ability to write.

I am a writer. Writing is my passion and my joy. When I retired in 2019 from the practice of law, I was free at last to devote myself full time to writing the plays and poetry that give my life expression and fully engage every part of my brain and body. Writing connects me with the world around me – the trees, the air, the soil, the Earth’s creatures. My life lost meaning a few months after I retired, in the years before I found the RLS Foundation. Does that sound overly dramatic? I assure you; it is not. The disease consumed me, body and mind and soul. My joy and my creativity died.

Scrolling for any information that could help, one day in August 2023, I found the RLS Foundation website. I called. Staffer Adrianna Colucci immediately sent me a packet of information – brochures, back issues of NightWalkers magazine, reports of RLS studies, and a list of RLS Quality Care Centers. The nearest expert was a thousand miles away, in southern California. I called Dr. Mark Buchfuhrer’s office at once and made an appointment to see him – a pulmonologist and sleep specialist with extensive RLS management experience and a leading RLS researcher – in September.

Then I had second thoughts. I couldn't bear the thought of sitting in a car on the way to an airport, getting through a security line, sitting for three hours on the plane, and sitting in a car to get to his office. I couldn’t sit still for more than an hour. And what if the visit was useless? So, I canceled the appointment. I made another appointment for November. I canceled that appointment, too. Finally, I made an appointment and kept it in March 2024.

March 2024 saw the worst flooding in a century in Los Angeles. The Los Angeles River raged far over its banks, fed by torrents of rain and whipped by wind. On the train platform at the airport, people dressed for spring wrapped their arms around themselves and cowered. At the hotel, there was no central heat; my husband and I huddled together over a space heater throughout our stay. We walked the half-mile to the doctor’s office the next morning along a street as wide and busy as a highway, as I castigated myself for coming to southern California and dragging my husband along.

When Dr. Buchfuhrer walked into the examination room, I was stiff with armor against inevitable disappointment. Why should this be different from my past experiences? Slowly, as he asked me about my long history with the disease, I saw that this time, this doctor would be different. It was the way he spent at least half an hour on my history, asking questions, that gave me new insight into my own journey. He wasn’t fidgety or bored. He seemed genuinely interested in me as a patient. It was when he said, “I know I can help you,” that I began to let my armor go. No other doctor had ever said that.

Dr. Buchfuhrer worked closely with me over the course of the year, tweaking the medication that has given me sleep again. Within three months of my first visit to his office, I slept three or four hours at a time. Within six months, I was sleeping through the night on most nights, with few daytime RLS episodes. In July 2024, Dr. Buchfuhrer enrolled me in an RLS research study for the new Nidra leg bands, a nonpharmacological device that uses tonic motor activation to alleviate RLS symptoms quickly, before they take over the body and mind. I didn’t need to use the bands until the beginning of this year, when, inexplicably, my symptoms began to recur every two to three hours during the night and sometimes during the day.

I didn’t want to increase the dosage of my medications, since I’m already somewhat drowsy and unsteady in the evenings under their influence. Now I use the bands most nights once and sometimes twice or three times a night. But instead of staying up for an hour, walking until the symptoms subside and I can sleep, I now get up, turn on the bands, and get back in bed within 10 minutes.

It's been expensive, tiring and time-consuming to travel to California for doctor visits and the Nidra band fitting, but what is it worth to have your life back? Dr. Buchfuhrer listens carefully to me and takes what I say seriously. I am the best source of information about my experience of the disease, and he honors that. He carefully calibrates my medication and dosing regimen and isn’t put out when it doesn’t work as well as he wants it to. I no longer blame myself for the disease.

RLS is a chronic condition. I know I’m not going to be cured, but now I am sleeping. I have my brain back. My doctor’s attention to and belief in me, the carefully calibrated medication, and the Nidra bands brought me back to life. I’m writing. I travel again. I connect with friends and family. I’m walking in the woods. I no longer blame myself. I am at peace.

Submit A Design for Our Spring Fundraiser!

Are you an artist, photographer, graphic designer or simply artistic? Submit your original artwork or photography to be considered for use in the RLS Foundation's Spring Fundraiser campaign!

As part of our RLS Awareness Day activities for September, we are asking RLS community members to submit a design to be used in our Spring Fundraiser campaign. Selected artwork will be featured on the greeting cards mailed to RLS Foundation members during our annual spring fundraiser. This design contest is an opportunity to showcase your skills and get involved in supporting a meaningful cause. All designs should be emailed to elyse@rls.org with the subject line: RLS Foundation Spring Fundraiser Artwork

Submission Details:
Deadline: October 10
File formats accepted: PDF, PNG, or JPEG
Card dimensions: 5” x 7”

Design Guidelines:
The RLS Foundation’s mission emphasizes hope as we push for continued research to improve treatments and a cure. Artwork should reflect this message, shining light on the progress that has been made while letting others know that they are not alone in their RLS journey. In the past, the spring fundraising cards have used images of sunsets, flowers or fields through various mediums (watercolor, photography etc).

• There are no required color schemes.
• Designs must be non-partisan and appropriate for all ages.
• Both artwork and photography are accepted, with a certification that the work is original and created wholly by the submitting artist, and that artificial intelligence was not used to create the artwork in whole or in part.
• The card featuring the design will also contain fundraising and other messages inside the card, but text will not be superimposed on the image.

Artist Acknowledgement:
A brief credit and biographical note about the artist is included on the back of the card. Selected artists will be asked to provide a short paragaph (30 words or fewer) about themselves and their artistry.

• The selected artist will receive a complimentary set of printed cards and envelopes featuring their design.
• Artist will be recognized on our website and in Foundation communications.

Rights and Usage:
By submitting, artists grant the RLS Foundation the right (not subject to royalty, licensing fees or other compensation) to reproduce, distribute and sell printed materials featuring the selected designs as part of our fundraising campaigns. Artists retain copyright and may use their work elsewhere. Artists will be asked to sign a model release agreeing to these terms.

Please email elyse@rls.org with any further questions.

August 15, 2025

RLS Foundation Certifies University of Southern California as a QCC

As an RLS Quality Care Center, the University of Southern California is certified to provide expert care to patients with restless legs syndrome, a chronic neurological sleep disorder.

AUSTIN, TEXAS, August 15, 2025 – The Restless Legs Syndrome (RLS) Foundation announces it has certified the University of Southern California (USC) as an RLS Quality Care Center.

An estimated 2%-3% of adults need daily clinical treatment for RLS, a chronic neurological disease that disrupts sleep and can have a devastating impact on overall quality of life. As an RLS Quality Care Center, USC will serve as a destination for RLS patients who need expert medical care.

“We are honored to receive designation as a Quality Care Center,” says Tammy Wong, MD, interim medical director of the Quality Care Center at USC. “As an RLS Quality Care Center, we aim to enhance our patients' quality of life by controlling RLS symptoms, improving sleep quality and providing RLS education to patients, families and the community,” says Dr. Denise Sharon, clinical assistant professor at USC and RLS Foundation Scientific and Medical Advisory Board member who has been caring for RLS patients for over 25 years.

USC joins a network of 14 other institutions in the US and Europe that are certified by the RLS Foundation as Quality Care Centers. Through this program, the Foundation aims to improve the diagnosis and treatment of the disease worldwide.

RLS Quality Care Centers:

• Provide expert care to RLS patients
• Serve as information and referral resources for healthcare providers who treat patients with RLS and regional support groups
• Support patients and families through educational offerings and literature
• Share information with other centers to improve clinical best practices
• Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

“We are pleased to welcome USC to the RLS Foundation Quality Care Center network,” says RLS Foundation Executive Director Karla Dzienkowski. “People with moderate to severe RLS face significant challenges in symptom management. Access to highly skilled and experienced healthcare providers is essential to effective treatment and improvement in quality of life.”

Dzienkowski adds, “The goal of the Quality Care Center network is to provide RLS patients access to healthcare providers with expertise in RLS management. We look forward to partnership with USC to advance the quality of care for RLS patients.”

The contact information for USC is listed on the RLS Foundation website. Other certified RLS Quality Care Centers are:

• Johns Hopkins Center for Restless Legs Syndrome
• Mayo Clinic Center for Sleep Medicine
• Houston Methodist Neurological Institute
• Stanford Sleep Medicine Center
• Emory Sleep Center
• Yale Center for Restless Legs Syndrome
• Vanderbilt University Medical Center
• Scripps Clinic Viterbi Family Sleep Center
• Neurocenter of Southern Switzerland
• Innsbruck Medical University
• Massachusetts General
• University of Pittsburgh
• University of Virginia at Charlottesville
• Barrow Neurological Institute

To learn more about the RLS Quality Care Center Program, visit www.rls.org/quality-care-centers.

About the RLS Foundation

The Restless Legs Syndrome Foundation is dedicated to improving the lives of all who live with restless legs syndrome (RLS). Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and advance research to find a cure. The Foundation serves healthcare providers, researchers, over 6,000 members, and an estimated 12 million individuals in the United States who have the disease. The Foundation’s Research Grant Program has awarded over $2 million in funding for medical research on RLS causes and treatments. For more information, visit www.rls.org.

CONTACT
Adrianna Colucci
Communications and Marketing Coordinator
adrianna@rls.org
512-366-9109

August 15, 2025

RLS Foundation Certifies Barrow Neurological Institute as a QCC

As an RLS Quality Care Center, Barrow Neurological Institute is certified to provide expert care to patients with restless legs syndrome, a chronic neurological sleep disorder.

AUSTIN, TEXAS, August 15, 2025 – The Restless Legs Syndrome (RLS) Foundation announces it has certified Barrow Neurological Institute as an RLS Quality Care Center.

An estimated 2%-3% of adults need daily clinical treatment for RLS, a chronic neurological disease that disrupts sleep and can have a devastating impact on overall quality of life. As an RLS Quality Care Center, Barrow will serve as a destination for RLS patients who need expert medical care.

“We are proud to be recognized with this esteemed designation,” says Nicki Niemann, MD, director of the Quality Care Center at Barrow. “We’re honored to be recognized as an RLS Quality Care Center and excited to bring national attention to the critical needs of this patient population. By uniting Barrow’s expertise in sleep medicine and movement disorders, we’re uniquely positioned to provide innovative, patient-centered care for even the most complex RLS cases. Through this partnership with the RLS Foundation, we hope to advance clinical standards, expand access to expert care in the Southwest and inspire a new level of understanding for a condition that is too often overlooked,” says Dr. Neimann.

Barrow joins a network of 14 other institutions in the US and Europe that are certified by the RLS Foundation as Quality Care Centers. Through this program, the Foundation aims to improve the diagnosis and treatment of the disease worldwide.

RLS Quality Care Centers:

• Provide expert care to RLS patients
• Serve as information and referral resources for healthcare providers who treat patients with RLS and regional support groups
• Support patients and families through educational offerings and literature
• Share information with other centers to improve clinical best practices
• Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

“We are delighted to welcome Barrow to the RLS Foundation Quality Care Center network,” says RLS Foundation Executive Director Karla Dzienkowski. “Individuals with RLS in the Southwestern part of the United States face significant challenges in finding healthcare providers who can manage moderate to severe forms of RLS. Barrow Neurological Institute provides access to knowledgeable and skilled healthcare providers who can provide personalized treatment plans to improve quality of life for those living with RLS.”

Dzienkowski adds, “The goal of the Quality Care Center network is to provide RLS patients access to healthcare providers proficient in RLS management. We look forward to our partnership with Barrow Neurological Institute to provide treatment access, management and quality of life improvement for RLS patients.”

Contact information for Barrow Neurological Institute is listed on the RLS Foundation website. Other certified RLS Quality Care Centers are:

• Johns Hopkins Center for Restless Legs Syndrome
• Mayo Clinic Center for Sleep Medicine
• Houston Methodist Neurological Institute
• Stanford Sleep Medicine Center
• Emory Sleep Center
• Yale Center for Restless Legs Syndrome
• Vanderbilt University Medical Center
• Scripps Clinic Viterbi Family Sleep Center
• Neurocenter of Southern Switzerland
• Innsbruck Medical University
• Massachusetts General
• University of Pittsburgh
• University of Virginia at Charlottesville
• University of Southern California

To learn more about the RLS Quality Care Center Program, visit www.rls.org/quality-care-centers.

About the RLS Foundation

The Restless Legs Syndrome Foundation is dedicated to improving the lives of all who live with restless legs syndrome (RLS). Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and advance research to find a cure. The Foundation serves healthcare providers, researchers, over 6,000 members, and an estimated 12 million individuals in the United States who have the disease. The Foundation’s Research Grant Program has awarded over $2 million in funding for medical research on RLS causes and treatments. For more information, visit www.rls.org.

CONTACT
Adrianna Colucci
Communications and Marketing Coordinator
adrianna@rls.org
512-366-9109

Clinical Insights Into Observational Studies

By Dr. William Ondo, Director of the RLS Quality Care Center at Houston Methodist Neurological Institute

Medical epidemiological studies, also called observational studies, assess information from existing data sources. These studies often make news headlines, reporting “associations” between some factor (e.g., medicine, food, activity) and some outcome (typically a feared medical condition). No epidemiology/observational study can ever deduce that one factor “caused” the other, a distinction that is often blurred by media sources. A classic example: there is an extremely high association between ice cream consumption and deaths by drowning. However, it is unlikely that ice cream consumption causes death by drowning and unlikely that death by drowning causes more ice cream consumption. It is much more likely that both occur more in summer, which explains the association. Although a useful, fast, and inexpensive mode of study has heralded many medical advances, in isolation, retrospective epidemiology studies are among the least scientific and potentially misleading forms of analysis.

One recent observational study correlated the use of gabapentin with developing dementia.¹ This study incorporated many of the statistical strategies used to improve the accuracy of observational studies. However, even the most strenuous and well-meaning analysis can’t overcome the potential for bias in any retrospective (analyzing previously collected data) study. This specific study compared 26,416 patients who used gabapentin for low back pain against 1,103,678 patients who did not take gabapentin for low back pain. All diagnoses were based on recorded standardized electrical diagnosis codes. The researchers from this study then used a complex process to make the larger non-gabapentin group more similar to the gabapentin group by specifically selecting a subset of 26,000 individuals from the non-gabapentin group to use in the direct comparison. By doing this, the researchers can “correct” for some intrinsic differences to make the comparison relatively more fair. Patients with other established risk factors for dementia that might bias the group (independent of gabapentin use) were excluded. At the end of this correction, the two groups were similar for age, sex, race, hypertension, diabetes, heart disease and some other disorders that have been associated with developing dementia, based on electronic medical record data.¹

However, researchers can’t correct for every factor. Fortunately, the authors of this study included the baseline characteristics of the 26,000 gabapentin group vs. the 1.1 million non-gabapentin group. Overall, the gabapentin group was much “sicker,” older, and had many additional factors that would otherwise increase their risk for dementia. Although the researchers corrected for some of these, they could not correct for many other potential dementia risk factors, such as hearing loss, social isolation, obesity, physical activity/exercise, and general attitudes toward health/healthy lifestyles. The published results do not allow us to determine whether the gabapentin group had more of the unmeasured dementia risk factors. However, because they had higher risks across almost every other reported baseline characteristic, it is reasonable to infer that they likely had more of these unmeasured risk factors as well. It was also indicated that the gabapentin baseline group were prescribed a greater number of opioids and other pain treatments. Based on this information, the gabapentin baseline group likely had more severe pain issues, which would at least suggest less exercise and more social isolation.

Potentially the biggest uncorrected risk factor for these types of observational studies is the frequency of health care visits. The more a person seeks medical assistance, the more likely they are to receive treatment and obtain a diagnosis for medical conditions. No individual who has not seen a physician is diagnosed with dementia and patients who visit a physician less often are also less likely to receive a subsequent diagnosis of dementia. This is a major, although underrecognized, intrinsic bias with all observational studies.

Other issues that may account for bias include the accuracy of the medical records, since no patient was interviewed or completed any type of questionnaire for this study. Further, generalizations to one disease (back pain) cannot always be attributed to another (RLS). For example, alpha-2-delta ligand medications (gabapentin, gabapentin enacarbil and pregabalin) improve sleep in RLS, which is known to lessen dementia risk in general. Specifically, they increase deep (delta) sleep, which is also hypothesized to reduce dementia.

Unfortunately, proper scientific studies to prove causality require prospective (collecting data moving forward in time) trials, which are lengthy, expensive and very challenging. With respect to this study, proving an association between gabapentin and dementia would require randomizing thousands of similar people to take either gabapentin or a placebo, with no chance of taking similar medicines. Participants are followed regularly for 10-15 years, examining how many in each group develop dementia. That idealized version of the study is essentially impossible on practical, financial and ethical grounds. There are high quality, but short (12-48 week) randomized prospective trials demonstrating the benefit of gabapentin enacarbil and pregabalin for RLS, however these can’t definitively eliminate the possibility of side effects that occur only after many years. Interestingly, there have been only a few small studies of gabapentin for RLS, but because of its low cost, long-established safety profile, and similarity to gabapentin enacarbil and pregabalin, it is commonly used.

At this point, I do not feel this association study of gabapentin with dementia should deter people from using gabapentin for RLS. We consider this medicine to be among the safest overall options for RLS.

1. Eghrari NB, Yazji IH, Yavari B, Van Acker GM, Kim CH. Risk of dementia following gabapentin prescription in chronic low back pain patients. Reg Anesth Pain Med. Published online July 10, 2025. doi:10.1136/rapm-2025-106577

RLS Foundation and American Academy of Sleep Medicine Foundation Announce 2025 Research Grant Awardees

August 4, 2025