Restless Legs Syndrome Foundation Blog

Spreading RLS Awareness Through Sacred Threads

By Zibby Crawford

Three striking quilts hang on the walls of the RLS Foundation in Austin, Texas. More than a decoration, they are a unique and powerful tool for RLS Awareness. Starla Phelps, an RLS Foundation member since 1994, is the artist that created each quilt to be displayed across the country at quilt shows sponsored by Sacred Threads, a nonprofit organization that exhibits quilts to inspire healing and strength.

RLS Dancing

The Foundation received the first quilt called “RLS Dancing” in 2014. In this quilt, Starla expresses her experience living with RLS both through embroidered images and a poem that she wrote to describe the sensations and how RLS affects her life in so many ways.

An accomplished quilter, Starla found her inspiration for the quilt in a magazine that featured a dancer. Her severe RLS has her constantly moving her legs to relieve her symptoms – “dancing around the house” to draw her mind away from the discomfort.

“The poem is trying to express what anyone might have (people have this in varying degrees) and also to express the fact that I love my husband, but he’s sound asleep and I’m up. I don’t want him to be up and miss sleep, but it’s upsetting to be out there again, and nobody is there with me.”

On the quilt, the text is surrounded by dancing figures and many panels with hand-embroidered scenes of activities like laying on the beach, sitting on an airplane, using a computer, and dining – “all the things I can do when I have the RLS drugs, but that I cannot do without them,” says Starla.

The back of the quilt includes printed fabric showing women playing sports. “One thing I’ve found is that you need to have some exercise, but if you have too much, it backfires on you, so there’s a fine line.”

Forward

“Forward” is the theme of another quilt Starla exhibited with Sacred Threads in 2015, before donating it to the Foundation.
“I look forward to SLEEP after years with minimal amounts of sleep due to a brain disease commonly known as RLS,” says Starla in an artist’s statement accompanying the quilt in the exhibit. “Treatment has not been very helpful, but I am now undergoing another treatment and I have to be hopeful for the future – going forward into the future.”

The fabric and quilting use “zzz” patterns to represent the “many nights that I spend trying to quilt when I am so exhausted, but can’t sleep.”

Along with her description of the quilt, Starla included information about “What is RLS” to raise awareness and understanding of RLS to all who viewed the Sacred Threads exhibit.

Hope

“Research = HOPE” is the theme for the most recent quilt Starla presented to the Foundation, during the recent, well-attended RLS Advocacy Day on Capitol Hill in Washington, DC. Starla included a summary with her quilt that stated, “My greatest personal HOPE is that someday a cure will be found, and a worldwide recognition and understanding of RLS.”

To describe her art, Starla writes: “The words around the legs and brain are the words that RLS sufferers use to describe this difficult disease. The RLS Foundation was founded in 1992 to actively provide education, fund research, establish RLS Quality Care Centers, and ongoing involvement in RLS outreach. I have donated two other quilts to the RLS Foundation; and this quilt will also go to them. My goal is to encourage quilters and other artists to begin creating art that demonstrates to the viewer the horrible nature of this disease. I hope that soon the public will help to fund research. Since the disease is so difficult to explain, it is overlooked when people donate money to causes.”

Starla’s journey with RLS began with childhood symptoms that went undiagnosed until she was in her thirties and, at a Christmas party, her husband fell into conversation with a woman who was moving her legs and calling it RLS. With this information in hand, Starla went to see a neurologist and was diagnosed with the disease.

Starla urges others to share their experiences through art. She says making these quilts is cathartic, but more importantly, it has helped to educate, comfort and inspire others who have the disease.

Starla holds a degree in fashion design, is a race car instructor and driver, served on the RLS Foundation Board of Directors and worked for many years as a certified public accountant. Starla and her very supportive husband, Fred, live in the Washington DC area.

New Study Funded by RLS Foundation

By Kris Schanilec

The RLS Foundation has awarded a grant of $36,398 to Sergi Ferré, MD, PhD, of the National Institute on Drug Abuse, for a study to explore how opioid medications work in the brain to relieve RLS symptoms. This research builds on several Foundation-funded studies previously conducted by Dr. Ferré, who is a member of the RLS Foundation Scientific and Medical Advisory Board.

“Dopamine agonists, alpha-2 delta agents and opioids are highly effective in treating RLS,” says Christopher J. Earley, MB, ChB, PhD, FRCPI, chair of the Scientific and Medical Advisory Board. “Dr. Ferré’s grant is the first to try and understand the biologic elements that may be common to these three classes of drugs that makes them so effective in treating RLS, thus opening the door for future drug development.”

Opioid medications act on three types of opioid receptors in the brain. One of these – the mu opioid receptor – is the target of the opioid medications, such as methadone, that are a very effective treatment for severe RLS when used in low total daily doses. RLS is a neurological disease that has a distinctly different underlying neuropathology than that associated with typical pain syndromes. Clinical experience among experts who use opioids to treat severe RLS has not shown the degree of drug misuse, dependency or addiction that is commonly associated with opioid use to treat chronic pain.*

In the current study, “Elucidating the mechanisms of the therapeutic effects of opioids in RLS,” Dr. Ferré’s team aims to identify the locations of mu opioid receptors involved in improving RLS symptoms with opioids. With this information, they hope to determine if specific opioid medications could selectively act on these mu opioid receptors, reducing the risk of unwanted side effects.

In previous studies funded by the RLS Foundation, Dr. Ferré’s laboratory developed an animal model for RLS using a brain iron-deficient rodent that models the brain iron deficiency that is characteristic of RLS in humans. Their model combines two techniques, optogenetics and microdialysis, to trigger and measure the release of glutamate from brain cells in live animals. The researchers used this model to confirm that brain iron deficiency increases the release of glutamate in the brain area known as striatum; other studies have reported increased glutamate in the RLS brain.

Dr. Ferré’s team also validated that several RLS drugs – the dopaminergic drugs pramipexole and ropinirole, and the alpha- 2-delta ligand gabapentin – work by counteracting this high release of glutamate. In addition, the researchers pinpointed a subtype of receptor in the brain – the dopamine D4 receptor – as a main target for the effects of the dopaminergic drugs in the striatum, and therefore, as a new target for drug development.

In a more recent study, Dr. Ferré’s laboratory reported that low levels of receptors of the neurochemical adenosine are responsible for the high levels of glutamate released in the striatum. This finding has led to exploration of drugs that increase adenosine levels in the brain – for example, dipyridamole – as a new treatment approach for RLS. According to Dr. Ferré, the reduced levels of adenosine receptors (specifically, the adenosine A1 receptors) may be the underlying cause of not only restless legs, but also the state of enhanced wakefulness (hyperarousal) experienced by people who have RLS.

In the current study, the researchers will focus on a specific neuron in the striatum, the cholinergic interneuron, which releases the neurotransmitter acetylcholine and has a high number of both adenosine A1 receptors and mu opioid receptors. The researchers hypothesize that in RLS, there are fewer adenosine A1 receptors in these cholinergic interneurons, which therefore become overactive and release more acetylcholine. The researchers also hypothesize that opioids should be able to counteract this by activating mu opioid receptors in the cholinergic interneurons. Dr, Ferré’s team will use its animal model to explore these questions.

“If the results of the study confirm our hypotheses, we will have probably found the main mechanism of the therapeutic effect of opioids in RLS,” says Dr. Ferré. “Those results would then stimulate the search for opioids with a preferential efficacy for the mu opioid receptors localized in the striatum, in the cholinergic interneurons, which should be absent of unwanted side effects.”

The RLS Foundation is grateful for the generosity of individuals whose financial gifts make this work possible, says Executive Director Karla Dzienkowski. “The Foundation’s research grant program is dedicated to find better treatments and, ultimately, a cure for RLS. This study will help us to understand why opioid medications are effective at relieving severe, unrelenting symptoms of restless legs syndrome, which will lead to an improved quality of life for people with RLS,” Dzienkowski says.

*If opioid therapy is a treatment option to manage your RLS symptoms, your healthcare provider will work closely with you to find the dose that manages your symptoms while minimizing side effects of therapy.

CBT-I Just Might Help

By Régis Langelier, PhD

As many of you know, those of us who are “NightWalkers” have not only RLS, but also the insomnia that comes with it. All who endure RLS have some learned coping expertise; however, we also need new ways of thinking and strategizing for revitalization!

Now there is something proven to help: cognitive behavioral therapy for insomnia (CBT-I) – a treatment primarily given by specialized, doctoral-level psychologists. In 2016, the American College of Physicians finally recommended CBT-I as a first-line therapy for chronic insomnia,¹ officially endorsing the combined finding of data from multiple studies (meta-analysis).² CBT-I is proven to be the best treatment for chronic insomnia disorder, works as well as sleep medications and has the added benefit of fewer or no adverse effects. I use CBT-I every day, and so can you.

RLS and insomnia pose daily challenges to well-being

RLS is a complex, neurological and torturous affliction. Just by itself, it creates fragmented and diminished sleep; constant fatigue (often an RLS trigger); sometimes an inability to relax during the day; disruption of life’s pleasurable activities; impaired behavioral, emotional and cognitive functioning; and trouble with common activities such as driving, or attending a play or movie.

Insomnia is associated with one or more of the following symptoms: difficulty initiating sleep; difficulty maintaining sleep (characterized by frequent awakenings, or problems returning to sleep after awakenings); and early morning awakening with the inability to return to sleep. In chronic insomnia, sleep disturbance causes clinically significant distress or impairment in important areas of functioning, occurs at least three nights per week, and is present for at least three months. Chronic insomnia is linked to an increased risk of developing a number of physical and mental disorders, including but not limited to high blood pressure, heart disease, diabetes, chronic pain, work-related accidents, major depression, alcohol and substance abuse, and trouble with memory, concentration and performance.

Population-based estimates indicate that in general, about one-third of adults report insomnia symptoms³; in comparison, the prevalence in people with RLS is much higher (48–60 percent).⁴ Regardless of whether their RLS symptoms are relieved by medication, many patients continue to have sleep issues and other health problems. They also may be plagued by anxiety and depression, plus suffer from a sense of despair. RLS is invisible to our friends and others, as is insomnia. Often such unseen maladies contribute to feelings of isolation, to overwhelming stress, to chronic relaxation problems and to unique or quaint (soap under your pillow as a placebo?) coping strategies. Medications are not proven to be a universal answer. Coping and improvement are usually best achieved by medical evaluation and creating an individually tailored strategy that may include drug and/or nondrug treatments.

Poor sleep is partly learned and partly inherited. Factors known to contribute to sleep issues are age, pain, medical conditions, drugs, substance abuse, fear, financial insecurity, difficult work/living conditions, trauma, poverty and relationship problems –to name just a few common culprits. RLS and insomnia combined pose a much greater daily challenge to living well, and to achieving happiness!

Something proven to help: CBT-I

CBT-I is a set of strategies that helps modify thoughts, beliefs and behaviors that interfere with sleep and life. Although this therapy doesn’t work as quickly as sleep aids (which remain the most popular treatment for insomnia, despite publicized concerns about safety and efficacy), CBT-I is an evidence-based therapy that can be effective and enduring, especially by increasing shuteye time in stages 3 and 4 of sleep (slow wave sleep, and deep sleep). CBT-I improves mood and is particularly effective in mitigating excessive sleep effort – the common tendency to try too hard to make sleep happen. (Who hasn’t experienced this?)

CBT-I typically involves a sequence of eight or fewer sessions with a trained psychologist, and includes the following elements:

Sleep Assessment. The provider conducts a comprehensive evaluation and history of sleep problems, physical and mental health issues, substance use (including caffeine), daily sleep diary profiles, the Insomnia Severity Index score (mild to severe), and the Sleep Efficiency Index result (total time in bed actually spent asleep).

Sleep Education and Sleep Hygiene. This part of CBT-I addresses normal sleep and its stages, sleep regulators such as circadian processes, arousals from sleep, environmental conditions, and sleep hygiene recommendations. Screen time, Starbucks stops, and the nightly wine or beer are also added up on the “sleep trouble” scale.

Stimulus Control and Sleep Restriction Therapy.⁵ These strategies aim to strengthen cues for sleep, reduce cues that interfere with sleep, reduce the amount of time spent awake in bed each night, and associate one’s bed with falling asleep quickly. Stimulus control instructions are:

• Lie down intending to go to sleep only when you are sleepy.
• Do not use your bed for anything except sleep and intimacy.
• If you are unable to fall asleep within 20 minutes, then get up, go to another room and return to the bedroom when you are sleepy again. Do this as often as necessary throughout the night.
• Get up at the same time every morning, regardless of how much sleep you had during the night. This will help the body acquire a consistent sleep rhythm.
• Keep active during the day and avoid naps (except for a limit of 30 minutes when sleepiness might cause harm).

Sleep restriction is designed to increase the drive for sleep (i.e., tiredness) and is used in combination with stimulus control instructions and cognitive therapy. If you never fall asleep before midnight, but your bedtime is 10 pm, then go to sleep at 11:45 pm. This will limit or restrict the time you are “trying” to fall asleep. Also set up a wake-up time. This is typically seven to eight hours after your bedtime, even if you have a terrible night’s sleep.

Relaxation Training. This training reduces physical arousal and muscle tension, slows down the heart rate and breathing, and slows a racing mind. Approaches might include diaphragmatic breathing, visual imagery, and mindfulness-based stress reduction.

Cognitive Techniques, or cognitive restructuring. This therapy addresses misconceptions about the causes and consequences of insomnia, unrealistic sleep expectations, and negative automatic and sometimes catastrophic thoughts about sleep. It is important to challenge those thoughts and beliefs by identifying more realistic substitutes for them. In this therapy, negative thoughts (make your own list) such as “I am never going to fall asleep” or “I won’t cope tomorrow” or “I have no control over this racing mind” are treated, challenged and restructured by realistic thoughts: “I always fall asleep eventually” or “I will be tired tomorrow but will get through it as always” or “I am not alone – at least two in five people with RLS have sleep trouble.” Time is scheduled during the day to address anticipated worrisome bedtime thoughts and to practice relaxation. CBT-I providers typically provide handouts on cognitive techniques for patients to take home with them.

CBT-I considerations

A combination of CBT-I and RLS medication might be necessary to address the sleep disturbances and severe RLS symptoms. This combination can make the difference between frustrating torture, and some measure of success. With conditions such as depression, studies2 show that compared with antidepressant medication alone, CBT-I in conjunction with these medications can significantly reduce depressive symptoms and increase insomnia remission rates.

Sleep restriction therapy has been found effective for older adults (not for children) but is contraindicated for specific types of depression (e.g., bipolar disorder) and may at first increase anxiety. For this reason, sleep restriction therapy is optional for individuals who have post-traumatic stress disorder. Skip sleep restriction therapy if it doesn’t seem right for you.

Finally, although CBT-I can be conducted in groups or online, research to date on CBT-I outcomes has focused on in-person treatment.² However, time demands, health issues and transportation issues encourage remote consults (telepsychology) by specialized psychologists to treat RLS and insomnia.

In summary, CBT-I offers an effective, evidence-based protocol to improve sleep profiles for children and adults who have RLS. If you would like to explore this therapy, talk with your health care provider about whether this treatment may be right for you.

Régis Langelier, PhD, is a practicing, licensed psychologist in southern Maine offering CBT-I in-person and by remote consults. He is a behavioral medicine specialist, and a past clinical associate professor of psychiatry at the University of Vermont, Burlington. Langelier formerly served as treasurer of the RLS Foundation Board of Directors, was a support group leader for 10 years, and currently volunteers as an RLS support contact.

¹ Qaseem A. “Management of Chronic Insomnia Disorder in Adults: A Clinical Practice Guideline from the American College of Physicians.” Annals of Internal Medicine, July 19, 2016.
² DeAngelis T. “Behavioral Therapy Works Best for Insomnia.” Monitor in Psychology Vol 47, No 9, October 2016.
³ DSM-5 Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, American Psychiatric Association, Washington, DC, 2013.
⁴ Lee HB, Buchfurer MJ, Allen R, Hening WA. Clinical Management of Restless Legs Syndrome, Second Edition, Professional Communications, Inc., NY, 2013.
⁵ Bootzin RR, Epstein DR. “Understanding and Treating Insomnia.” Annual Review of Clinical Psychology 7, 11.1–11.24, 2011.

San Antonio, Texas is host to Sleep Specialists from around the world

By Maddie Lionberger

SLEEP 2019, the annual meeting of the Associated Professional Sleep Societies, was held in San Antonio, Texas this year – so the Foundation staff set out on a road trip! Located less than 100 miles south of the RLS Foundation’s Austin headquarters, we packed up and Karla led the charge to the home of the Alamo! A three-day conference, SLEEP allows us to educate healthcare providers focused on sleep medicine from all over the world about RLS and the resources that we provide to them and to their patients. It is also an opportunity for staff to refresh our knowledge base by learning from the best and brightest clinicians and researchers in sleep medicine.

The 2019 SLEEP Conference included several RLS research posters and sessions, many taught by our own Scientific and Medical Advisory Board members. One important session that we were pleased to see on the agenda, led by the Foundation advisory board member, John Winkelman, MD, PhD, "Should Sleep Medicine Providers Prescribe Opioids for RLS?" The course will hopefully clear up any misconceptions about the use of low total daily dose opioids used to treat severe RLS and provide healthcare providers with more knowledge about this important treatment option when all else fails. Dr. Winkelman shared preliminary data on his RLS Foundation funded Opioid Registry and encouraged physicians in attendance who have RLS patients treated with opioids to enroll as study participants in this longitudinal study that will assess long-term safety and efficacy of opioid medications.

During the conference two significant courses on RLS were available for meeting attendees. On Sunday, Dr. Richard Allen, Dr. Diego Garcia-Borreguero, Dr. Sergi Ferré and Dr. Christopher Earley presented on the Advances and Practical Guidance for Opioid, Iron Treatments and Augmentation Management in RLS. On Monday, Dr. Mark Buchfuhrer gave a presentation on the diagnosis, treatment and management of all forms of RLS from mild to severe.

The RLS Foundation’s booth in the exhibit hall gave us the chance to speak directly with sleep professionals to highlight the many resources that we offer to their patients and keep them educated on the latest developments in treating RLS. We were very encouraged by the reaction to our newest on-demand RLS Physician Education Webinar Series. Many had heard about the series, but were unable to attend the live broadcast; offering the free series as a download to watch at their convenience is a game-changer.

The Foundation’s Quality Care Center certification brought SLEEP attendees to the booth to learn more about the qualifications required to become an RLS certified Quality Care Center. The Foundation’s Board of Directors along with the Scientific and Medical Advisory Board are committed to building a network of Quality Care Centers to provide expert care and specialized disease management for the RLS patient.

“Our presence at SLEEP every year is a great opportunity to spread awareness about the extensive collection of scientific-based RLS resources available to physicians, nurse practitioners and other healthcare providers as they treat more complicated RLS cases” says Karla Dzienkowski, RLS Foundation executive director. “Thanks to the many RLS experts on our RLS Scientific and Medical Advisory Board who serve as webinar presenters and help us develop our library of materials. With their help we are able to offer scientific based resources for providers, researchers and most importantly, RLS patients. SLEEP helps us distribute resources widely to those patients, caregivers and healthcare providers that need them.”

Ask Your Senators to Support the Establishment of a Sleep Disorders Education and Awareness Program at the Centers for Disease Control and Prevention

The US Senate is crafting its spending bill for medical research, public health, and professional education programs for the Fiscal Year 2020. Your help is needed by June 4th to ensure the government provides funding for vital public health activities on healthy sleep and sleep disorders through the Centers for Disease Control and Prevention (CDC). Senators need to hear from you, their constituents, that sleep disorders are a serious issue and that it is important to improve public health in this area.

Background

Each year, Congress crafts the annual appropriations bills that include funding and recommendations for all federal programs. The Senate is set to work on its Fiscal Year (FY) 2020 spending bill for medical research, public health, and professional education programs—The Labor, Health and Human Services, Education (LHHS) Appropriations Bill—in early June. Before the Senate is a request to establish a $250,000 program specifically for public health activities focused on healthy sleep and sleep disorders at the Centers for Disease Control and Prevention (CDC) through the FY 2020 LHHS Appropriations Bill. The Senate has many competing funding opportunities and limited resources, but Senators will support this program if they are asked to do so by you, their constituents.

A dedicated sleep disorders program at the CDC would be a timely and meaningful investment of resources for a variety of reasons, including:

• The CDC supported a successful sleep program for over 10 years before abruptly ending the program late last year, citing a lack of available funding.
• The CDC tends to support public health initiatives that impact large portions of the community (such as obesity or smoking cessation), so it is unusual that they do not have an active program on healthy sleep and sleep disorders.

Take Action

• Identify your two Senators by going to www.Senate.gov and selecting the “Senators” tab and then clicking on “Contact.”
• Reach out to the DC offices of both Senators (the 202 number) and ask for the “Health LA” that handles healthcare issues for the Senator.
• Use the script below to leave a voice mail message or to send an e-mail to the Health LA.

Dear [Health LA],

My name is [Your Name] and I am a constituent from [Your State], as well as an advocate for the sleep and sleep disorders community. I am contacting you today to ask that your office please support the community’s request to establish a $250,000 sleep disorders public health program at the CDC through the FY 2020 Senate LHHS Appropriations Bill. Sleep disorders can be serious and sometimes costly conditions that can lead to negative health outcomes. Congress should help the CDC reinvigorate critical sleep activities and once again improve public health in this area.

Thank you for your time and your consideration of this request.

Sincerely, [Your Name] [Your Address]

PRIORITY STATES

If you are from one of the states listed below, please send your name and full address to the RLS Foundation’s Washington representative Peter Herzog at herzog@hmcw.org or (202) 544-7499 before Tuesday, June 4th for additional action!

Alabama Alaska Arkansas California Connecticut Delaware Florida Hawaii Illinois Kansas Kentucky Louisiana Maine Maryland Mississippi Missouri Montana New Hampshire New Mexico North Dakota Oklahoma Oregon Rhode Island South Carolina Tennessee Vermont Washington West Virginia

2019 RLS Advocacy Day on Capitol Hill

Thirty members of the RLS community from across the US gathered in Washington, DC, on May 3 for the first RLS Advocacy Day on Capitol Hill.

RLS patients and Foundation staff were joined by Jeffrey Durmer, MD, PhD, a member of the Foundation’s Scientific and Medical Advisory Board; and Sandra Katanick, a member of the Board of Directors; for a whirlwind day of meetings with congressional offices. An RLS Foundation delegation also met with congressional staff on May 2. Over the two days, the Foundation met with a total of 45 congressional offices, representing 16 states from across the country and including key members of committees that shape health policy.

Policy makers are currently debating which issues they will take on throughout this session of Congress. It is essential that RLS patients make themselves heard during these deliberations.

“Our first advocacy day exceeded everyone’s expectations,” says Karla Dzienkowski, executive director of the RLS Foundation. “This was an exciting opportunity for staff and RLS community members to join forces to advance our goals. We made headway in educating key offices that can champion our legislative agenda.”

Advocacy Day took place at the heart of the federal appropriations process, when Congress designates dollars to fund specific areas of the government – and at a time when Congress is engaging in oversight activities to implement key legislation that addresses the opioid epidemic: the Comprehensive Addiction and Recovery Act (CARA), and the SUPPORT for Patients and Communities Act.

The day began with a prep session led by the Health and Medical Counsel of Washington (HMCW). “Most folks don’t know what restless legs syndrome is, including people who make decisions at the highest level of government,” says Peter Herzog, a legislative associate at HMCW. “That’s where decision-makers rely on their staff who focus on these issues, on expert opinion, and on their constituents. RLS patients are both experts and constituents, and their input matters to legislators.”

Participants formed five teams, each with an agenda of back-to-back meetings about every half-hour, in the senate and house office buildings.

In the meetings, they shared their stories and challenges of living with RLS. They advocated for support on three key issues: increasing research funding for RLS, protecting appropriate access to opioid therapy for patients with severe RLS, and expanding RLS physician education and public awareness.

Donna Rivers and her husband, Martin, traveled from Oregon to participate. “It amazed me how little most people know about RLS. I was happy to be a part of that education process,” says Rivers, who volunteers as an RLS support group leader in Portland. “The experience was empowering in that I felt our plight as RLS sufferers was recognized. I believe the education provided to legislative staffers will be heard by our representatives.”

Rosemary Stader, who traveled from Ohio with her husband, Gregory, says that most of the congressional staff appreciated the meetings. “I think we made a difference! The people we saw were interested; they were engaged, wrote down notes, and I think they will support our cause.”

“It was win, win, win,” says Julie Herbert, from Missouri. “I got to advocate for the needs for those of us with RLS, to exercise my rights as a citizen, and to spend time with some wonderfully interesting people, many of whom also have RLS, reinforcing my awareness that I am not alone. One more win: I became increasingly aware of the great work that the folks at the RLS Foundation are doing on our behalf."

“I feel like anything we do to take action with regard to our RLS gives us more strength to deal with a disorder, which so often leaves us feeling frustrated and helpless,” Herbert adds. “I’m so glad I went.”

The RLS Foundation would like to thank all who participated in RLS Advocacy Day on Capitol Hill, all who joined in spirit, those who submitted letters and responded to calls to action, and those who continue to generously provide financial support for RLS advocacy efforts.

• Learn more about RLS advocacy.
• Read “Opioids: Are RLS Patients Getting Caught in the Crossfire?”
• Support our work! Become an RLS Foundation member, or make a donation.
• Stay tuned! Raise your voice in Washington by responding to our upcoming calls to action.

Scientists at the National Institute on Drug Abuse (NIDA) and their collaborators report that methadone may produce less euphoria than other opioids, suggesting it may hold less risk for abuse or misuse.

In a study led by Sergi Ferré, MD, PhD, and Annabelle Belcher, PhD, published in the Journal of Clinical Investigation, researchers conducted experiments using cells in culture, as well as an animal model, to assess the effects of different opioids on the brain. They found that methadone was much less potent than morphine and fentanyl in activating receptors that drive feelings of euphoria.

In the experiments, the scientists examined the response of opioid receptors in cells in the ventral tegmental area (VTA) of the brain. The VTA is a key area involved in the brain’s “reward circuit.” The researchers found that opioid receptors located in the VTA link with receptors for another neurotransmitter called galanin to form complexes; and that these complexes are less responsive to methadone than to the other opioids.

The researchers also looked at patient data from the RLS Opioid Registry and from a clinical trial for opioid use disorder (opioid addiction). In both studies, significantly fewer patients said they experienced a “high” from taking methadone compared with the other opioids – confirming results of the lab experiments.

“Our work provides very important support for the use of methadone in RLS. These results provide a substantial basis for arguments for its continued availability and use as an opioid treatment with little addictive potential,” says Dr. Ferré, who is a member of the RLS Foundation Scientific and Medical Advisory Board.

“The results also open a new path to address the discovery of opioids with lower risk of addiction, which already include methadone. Our ongoing studies will identify the mechanism by which methadone does not activate the opioid-galanin receptor complexes, which light up the reward circuitry, to use this as the basis for future drug development. This is the Holy Grail in the search for effective opioids for the treatment of pain and RLS – we want to emulate that,” Dr. Ferré says.

Opioid therapy is used to treat RLS when all other options have failed. At low total daily doses, opioids are effective for controlling RLS symptoms in most patients. Methadone and oxycontin are specifically used for RLS because they are longer-acting, so a single dose can control symptoms across a span of many hours.

The NIDA findings present a new way for clinicians to distinguish among opioids, according to co-author John Winkelman, MD, PhD. “This study suggests that methadone may be distinctive in that it doesn’t activate the euphoric, or rewarding, centers in the brain, and therefore lessens the risk of misuse or abuse. From this perspective, methadone in low doses is not as worrisome as other opioids. However, it is still an opioid and needs to be used only in select patients and carefully in those individuals,” says Dr. Winkelman.

RLS patients who may feel stigmatized for taking methadone can find reassurance in these new findings, according to RLS Foundation Executive Director Karla Dzienkowski, “This gives the RLS patient community validation for this treatment, and hope for the future.”

In this video by NIDA, Dr. Ferre and Dr. Belcher discuss what they have learned about methadone, a drug used to manage opioid addiction that does not have euphoric effects as strong as other opioids: