Restless Legs Syndrome Foundation Blog

December 14, 2021

Support Group Leader and Secretary, RLS Foundation Board of Directors

I recently had the pleasure to sit down and chat with one of the extraordinary members of our Board of Directors, Linda Secretan. Since she became a Foundation member in 1997, she has served the RLS community in so many ways. From starting a support group in Idaho, to serving as the RLS Foundation’s representative on the Sleep Disorders Research Advisory Board of the National Institutes of Health, to her leadership roles on the Foundation’s Board of Directors, she seems to do it all with compassion and a smile. During her six years of service, Secretan has served as secretary of the Board and chair of the Governance and Nomination Committee, two roles critical to the effective functioning of the Foundation.

Linda’s lifelong struggle with RLS and her experience as an educator and life coach make her an invaluable member of the RLS Foundation’s Board of Directors.

Q: How did you get involved with the RLS Foundation’s Board?

A: I was a long-time member of the RLS Foundation and had just moved to Idaho, transitioned careers and had a lot more free time and flexibility. I spent a long time thinking about just the right volunteer commitment where I could best spend my time and resources. Then I realized that the RLS Foundation had been essential to my well-being for many years. I relied on the Foundation for information, encouragement and general support in dealing with my RLS. I noticed that there wasn’t a support group leader in Idaho, so I thought I would apply, and my application was accepted! A generous donor had given the Foundation a grant to create educational materials specifically for kids and adolescents. Since Karla Dzienkowski, executive director at the Foundation, knew of my background in education, she asked me to help out with that project, and I was delighted to volunteer my time and experience with education and RLS. Then I got a call from Karla and Jacci Bainbridge, former chair of the Board, to ask me if I would consider becoming a board member. I was thrilled to be asked. I obviously had to ask questions and think hard about it, but there was no way I could turn them down. It was such an amazing opportunity to grow closer to the organization, learn more and maybe offer more to an organization that had given me so much.

Q: How has joining the Board affected your RLS journey?

A: First of all, it is very exciting to be on the Board, because you tend to hear about things first. You understand what is happening with the Scientific and Medical Advisory Board; when any research reports are published, we are the first to know. The Board is kept updated on all of the advocacy efforts, and that gives me a lot of insight and hope. Being on the Board reminds me that no matter how my own symptoms wax and wane – as they do, no matter how many regimens that I try – there is always a group that has my back. The Board is not just a bunch of names on a piece of paper, but people who are really interested in investing in and improving the lives of people with RLS. Serving on the Board makes my RLS more bearable, brings me hope and keeps the mission front and center in my mind.

Q: How has your service as a support group leader helped you during your time on the Board?

A: I consider myself a patient advocate serving on the Board. My time as a support group leader is so beneficial to my board service, because I have the opportunity to talk to many RLS patients to understand their concerns and their difficulties. I am able to be their advocate in board discussions and decisions that affect the people we serve, our members.

Q: How has your experience as a life coach helped you on the Board?

A: Any good coach begins with the premise that clients are creative, resourceful and whole – always approaching things from an awareness of great humility and curiosity. I think that also makes a good board member. We must be curious and assume the people that we deal with are creative, resourceful and whole, except that they have this interesting but limiting disease. Knowing that we are all sound people, we can make a difference, we can change, and we can learn. Always be curious, because when you are curious you keep your mind open.

Q: You chair the Governance and Nomination Committee. What does that involve?

A: As the Governance Committee, we are guardians of the bylaws. We are charged with making sure that, as a Board, we are doing right by ourselves and adhering to our own principles and standards. The other part of this committee involves nomination. As the Nomination Committee, we are always looking for people who are interested in board service. It is our job to seek out members of the community, Foundation members or individuals with leadership qualities. It takes passionate people to do the work. We have the best executive director in the world, but ultimately the Board is responsible for making some important decisions. We must make decisions about how to spend and allocate the resources available.

Q: What do you look for in a board member?

A: People are surprised to know that not all of our board members actually have RLS. It is not required that you have RLS, but you must have knowledge about the disease and what it means to live with RLS. You need to be willing to commit your time and resources to this important cause. This is a working board. All board members are expected to attend each meeting. In ordinary times, we hold one face-to-face meeting a year and three to four meetings by phone or Zoom. Your financial commitment to the Foundation should be equal to or greater than any of your other charitable giving commitments. One of the key responsibilities for each board member is to thank our major donors, by either phone or letter. When a donor gives a substantial gift to the Foundation, it is important that they get recognition and sincere thanks from a board member. Often, we learn more about the concerns and interests of donors through thank-you calls. This knowledge helps us keep in touch with members and helps inform future board decisions.

Q: Are you currently looking for new board members? How do you find them?

A: We are always looking for new board members; our terms don’t last forever — which is a good thing. We want new people who have new ideas. Several of our current members attended the RLS Symposium held in La Jolla a couple of years ago. It was a great opportunity to meet new people in person with an interest in board service. Sometimes we look at people who have come to us for help, or who have become interested enough to become a donor, and we reach out to see if they may be interested in further service.

When I was considering what to spend my volunteer energy on, I realized that there are many causes that are dear to my heart. Racial justice and climate change are both important issues. I wanted to make a difference in the world, and not just for RLS. I was torn. But, here is the thing: If my RLS isn’t somewhat manageable, then I’m not able to do anything. My RLS wouldn’t be manageable without the support I receive from the Foundation. I wouldn’t know what to do, where to go, how to find information, how to manage my RLS. Once I put that into perspective, there was only one answer. I am only able to volunteer because of the support of this Foundation – the support of this Board – so I darn well better serve this Board and the Foundation, and that’s what made my decision.

Q: Do you have any advice for those who are considering the decision to join the Board?

A: Talk to us! Find out how we operate, find out how you might fit, ask questions. We are open to speaking with you. If we can provide the information that would tip the balance toward your becoming more involved, give us a call.

November 15, 2021

By Steve McCann, former RLS Foundation Board Member

I’m in my 50’s and have been in corporate sales for over 30 years. My diagnosis of RLS should have come when I was five years old; however, back then, members of the medical community did not know nearly as much as they do today.

My path has been both different and similar to most people with chronic RLS – not an earth-shattering revelation. I can remember tapping my left leg during childhood to distract the unpleasant sensations that I would have throughout the day – not every day, but many days. It wasn’t until my early 30’s that RLS became an everyday, chronic experience. Before then, RLS would appear when I had been sitting for long periods, when I was experiencing stress or when I was over-caffeinating myself.

After college, I had to come to grips with RLS, as my career required me to be somewhere specific on a daily basis. I had to be “on” as best I could, since I considered myself an achiever and didn’t want to allow this RLS thing to hamper my career.

Although it didn’t happen as quickly as I would have liked, “it” did happen. The “it” being my acceptance of RLS. For some time, I resisted and sought ways to heal the RLS by myself. And by so doing, I dealt with the symptoms in a way that didn’t help me in the workplace. Being short on sleep and being angry about it was not a great strategy.

Through acceptance, I discovered some ideas that helped me to be at my best in the workplace:

• Optimized Workspace: My RLS sensations occur in my hamstrings. If I sit for too long, they will begin to appear. I am able to bend down on one knee and work on my computer. In the past, I have worked from a standing desk, which is a great idea for people with RLS. I’ve also arranged to walk outside of my office daily while making phone calls. When I have days where I don’t have to make phone calls, I will still take midafternoon walks. This not only provides a positive break for my RLS but also is excellent timing for digesting lunch from two hours before.
• An Earlier Bedtime: What is early? This is subjective, but 10:30 pm works for me. However, the more sleep I am able to get before midnight, the better my sleep and the more rested I feel. This technique is not original. Becoming a student of RLS, I learned from some of the top sleep specialists in the industry that there is something powerful that occurs when we get to sleep earlier rather than later. I will also add that making this a habit was not easy. Getting up early was the key. After a long period of adjustment, getting up early (even when I didn’t want to) created the sleepiness to help me form the habit of getting to bed early.
• Exercise: Wow, this is so key! It is one of the most important habits for a healthy lifestyle, but even more important for people with chronic conditions. Exercise creates endorphins in our bodies that help us feel good. This in turn helps us to be productive, improves our mood and helps us sleep.
• Deep Breathing/Meditation: This is a fantastic habit for anyone wanting to be successful and reach their potential in life. I wonder if I would even have developed this habit had I not had RLS. The good news for me is that I did discover this wonderful habit. It’s the gift that truly keeps on giving. I invest 15 to 30 minutes per day in quiet meditation. I take deep breaths during that time and focus on my breathing. That’s it; that’s what I do once or twice per day. I rarely miss a day. And when I am able to do it twice a day, my day is that much better. By better, I mean clearer of mind, relaxed in my body and my mind. The “restless” part of our RLS condition is not lost on me. I believe that we have things going on in our body for reasons. When they are problematic, like RLS, they often have a message within them. In my case, I was restless in all areas of my life. As I learned to invest time daily in quiet, while breathing deeply and focusing my mind on my breath, over time my thinking and feeling and actions in life took on more peaceful and productive patterns that have served me well.

I am forever grateful for the RLS Foundation. I have benefited more from learning about other people’s RLS experience through the Foundation than from any other available forum. Through the years, I have read NightWalkers and met people who work for, volunteer for or are simply members of the Foundation who have touched and bettered my life in ways I would never have imagined. More than anything else, I learned that I am not alone! Now that is a life lesson worth learning.

November 3, 2021

Understanding Augmentation and How to Recover from Dopamine Dependence

by J. Andrew Berkowski, MD, member of the RLS Foundation’s Scientific and Medical Advisory Board

Dopaminergic medications had been the mainstay of first-line pharmacological treatment of RLS for many years, but they have significantly fallen out of favor in the past decade due to high rates of augmentation and, secondarily, impulse-control disorders. Clinical consensus guidelines no longer consider these agents to be first-line treatments, despite the abundance of research demonstrating significant efficacy in the short term (months to a few years). The high rates of augmentation, which is thought to be inevitable with long-term use, begs the question: “Should anyone take dopaminergic agents at all for this chronic, lifelong condition?”

Despite relegation of dopaminergics to second-line status in the more updated clinical guidelines since 2015, many RLS experts only use these medications now in rare circumstances. If these therapies are considered, they should be trialed only after the ineffectiveness or intolerable side effects of the other treatments available for RLS. After initiation for daily use, regular monitoring must be performed for early identification of the stages of effects on the dopaminergic system, including dependence, tolerance, mild augmentation and severe augmentation. Dopamine agonists may have initial side effects, including nausea, vomiting, headache, sleepiness and dizziness.

The most commonly used dopamine agonists are the short-acting pramipexole and ropinirole, and the long-acting transdermal rotigotine patch. Levodopa is reserved for intermittent RLS symptoms, due to extremely rapid onset of augmentation (weeks to months) when taken daily. Though no studies have investigated augmentation with intermittent use, three doses or fewer per week has been considered reasonable. Potential uses include evening dosing for occasional RLS symptoms, dosing prior to sedentary situations (e.g., plane flight, theater presentation), and dosing for patients in whom the diagnosis of RLS is in doubt.

Augmentation

Since dopamine agonists became a first-line treatment for RLS in the early 2000s, two decades of experience have demonstrated high rates of (possibly inevitable) augmentation with long-term use. Augmentation is a worsening of RLS with one or more of the following features: an advance of the typical time of day when symptoms begin, two or more hours earlier than before the start of treatment; a spread of restlessness from the legs to the arms or trunk; a shorter interval before symptoms start after inactivity (sitting or lying); progressive dosage escalation to produce the same effect; and even paradoxical triggering of RLS symptoms immediately after taking the medication.

Augmentation has led to the most dramatic paradigm shift in RLS management, as it causes the majority of refractory RLS cases. This phenomenon poses significant philosophical challenges to the clinician, as a potential worsening of the condition long term in most cases should prohibit the use in the short term, regardless of the significant short-term effectiveness. Because of the increasing prevalence of augmentation, the RLS Foundation’s Scientific and Medical Advisory Board published a guideline outlining the identification and treatment of augmentation. The presence of one or more of the following factors is known to increase the likelihood of augmentation: more frequent RLS symptoms before treatment, greater discomfort with RLS symptoms before treatment, co-morbid asthma, older age, longer treatment duration, lower serum ferritin levels, and greater baseline severity of RLS.

Four screening questions are recommended to identify augmentation:

1. Do RLS symptoms appear earlier than when the drug was first started?
2. Are higher doses of the drug now needed, or does the medication need to be taken earlier in the day, to control the RLS symptoms compared to the original effective dose?
3. Has the intensity of symptoms worsened since starting the medication?
4. Have symptoms spread to other parts of the body (e.g., arms, trunk, face) since starting the medication?

Augmentation is considered mild if all of the following are present: symptoms manifest predominantly as a temporal shift of symptoms to earlier in the day compared to before starting treatment; dopaminergic monotherapy is at a total daily dose at or below maximum recommended levels; symptoms cause only mild distress; and there has been no prior increase in total dose above that which was previously therapeutically effective. In cases of mild augmentation, there is more time to make adjustments to treatment regimen, but the symptoms do represent an early stage of dopaminergic system impairment and dependence. This will progress to more severe symptoms and advanced augmentation if no changes are made or dopamine medication dosage is simply increased.

Augmentation is considered severe if it does not fulfill the criteria for mild augmentation (e.g., the total agonist dose exceeds recommended levels or the symptoms cause more than mild distress) or does not respond to treatment of mild augmentation.

Treating Augmentation

Initially, it is important to identify and eliminate or treat factors that exacerbate RLS. These could include poor sleep hygiene or other untreated sleep disorders, ingestion of drugs/foods that worsen RLS symptoms, or low levels of ferritin or percent transferrin saturation. If the iron stores are low, then iron therapy (oral or intravenous) should be considered.

For mild augmentation, the dopamine agonist medication could be continued and the total dose maintained but given in divided doses, or the medication could be given earlier to precede the onset of RLS symptoms. If symptoms are not managed by splitting the dosage, then the addition of other therapies should be considered, such as iron infusion, alpha-2-delta ligand medications, and possibly opioid medications. Changing to a longer-acting dopaminergic agent such as transdermal rotigotine could be considered, but this will only delay the inevitable augmentation to future months or years. Rotigotine has lower rates of augmentation long term in studies but is thought to mask augmentation due to having a steady level of the drug in the system continuously without time off from the drug. If the second treatment added does not provide symptom relief, then augmentation should be considered severe. Even if augmentation is mild, long-term plans should be discussed for transition to other treatments before more severe augmentation develops. Tapering off the dopamine agonist, with or without a second-line agent added, should be considered long term, to initiate dopaminergic system withdrawal and reconstitution.

For severe augmentation, the goal over several weeks to months is to wean, slowly but completely, off all dopaminergic agents to enable withdrawal, recovery from dopaminergic dependence, and maximal reconstitution of the natural dopaminergic system to as close to previous baseline as possible. One method is to perform a slow wean of the dopaminergic agent, followed by a two-week drug holiday, and then the addition of an alternative agent if still requiring symptomatic treatment. Though this approach is ideal in terms of natural recovery and limiting medication side effects, it is often met with apprehension due to the severity of withdrawal symptoms. The addition of a second medication prior to reduction in the dopaminergic medication is more common. Therapies may include an IV iron infusion (more potent and rapid than oral iron), alpha-2-delta ligands, opioids and, rarely, benzodiazepines. The dopamine agonist weaning process can be highly variable among patients, depending on initial severity of symptoms and strength of dosage. Anecdotal evidence suggests that many patients can go through a mini-withdrawal and recovery process after each dosage decrease in four to seven days, but some may take a few weeks or require increases in the secondary agent if they do not improve. Recovery after complete discontinuation may be the greatest in the first two weeks, though some patients take much longer to recover significantly. Many may have slow improvement beyond the initial few weeks for months or years after discontinuation, though the natural history of dopamine agonist withdrawal and recovery has not been well studied yet.

Dose reduction must be managed by a healthcare provider, and each situation is different; however, there are some management guidelines. Ropinirole may be tapered by 0.25 to 0.5 mg per week as tolerated, pramipexole by 0.125 mg, and rotigotine by 1 mg. However, the initial decreases may be larger, particularly if the patient is on dosages beyond maximum recommended, with progressively smaller decreases as the patient approaches discontinuation. Symptoms of withdrawal are generally a temporary but possibly severe worsening of restless legs symptoms, including more severe breakthrough symptoms, symptoms during the night leading to insomnia, earlier onset of symptoms during daytime with possible spread to other anatomic regions, and even involuntary limb movements while awake. These symptoms generally improve over several days before the patient can begin the next step in the tapering process. If a second agent is used, it may need to be adjusted to balance effectiveness with side effects, to combat the withdrawal symptoms. Other symptoms during dopaminergic withdrawal may include high levels of anxiety, irritability, insomnia, excessive daytime sleepiness and depressed mood.

After at least two weeks from discontinuation, the patient should be reassessed to see if the new symptomatic agent can be gradually tapered as well, or a second medication added in the case of patients who tapered without additional drug treatment. Several weeks to months after complete withdrawal, recovery is frequently seen and further dosage reduction can be made, as the dosage of a second medication is generally higher in the withdrawal period than weeks to months after recovery, due to progressive reconstitution of the dopaminergic system.

Impulse Control Disorders

Impulse control disorders are another side effect of dopamine agonist therapy. Due to long-term effects on the dopaminergic system and behavioral pathways, dopamine agonists are associated with impulse control disorders (e.g., pathologic gambling, excessive shopping, hypersexuality) within nine months of treatment onset. Symptoms of impulse control disorders (and augmentation) should be screened regularly, regardless of duration of use. The consequences of unrecognized impulse control disorders can be devastating, including substantial financial loss, the threat of criminal prosecutions, substance abuse and social disruption. However, complete resolution of the pathologic tendencies is the general rule with discontinuation or dose decrease of the causative agent.

Education and Awareness

Decades of dopamine agonist use have revealed the risk of augmentation and impulse control disorders. Education of healthcare providers is the first step to raise awareness about RLS treatment guidelines and the adverse side effects of dopaminergic medications. Support for RLS research leading to the identification of new medications that address the chronic progressive nature of RLS and its treatment challenges are priorities for the RLS community.

October 19, 2021

By Brian Schrag, PhD, RLS Foundation Member

“Always just beyond the edge of consciousness . . . like electricity. Toes. Ankles. Calves that have to move. RLS, a tailgater crowding my rearview mirror, a bully breathing down my neck, a whiff of something rotting just behind the wall. Always there. Always ready to twist a moment of peace and relaxation into a kicking, screaming fight to make the feeling leave.”

I teach people how to make artistic things that help them flourish. My own struggles with RLS have convinced me that communities affected by RLS could also benefit from developing habits of life-giving creativity.

My journey, resulting in this conviction, began in a village in the Democratic Republic of Congo. My wife and I helped start a project to translate the Bible into a language called Mono, encouraging speakers to integrate the new Scripture into their lives through their own types of singing, dancing, poetry, proverbs, storytelling, carving and so on. I eventually earned a PhD in ethnomusicology at UCLA and founded the Center for Excellence in World Arts (CEWA) at Dallas International University.

Along the way, I became more and more aware of the infinite range of suffering in the world, and saw how arts have often brought relief, soothing people’s anguish. So, I started studying music, dance, visual and other arts therapies, integrating their insights into our training, inviting experts to teach at the CEWA. Our students now spark healing creativity in communities in the US and around the world, to increase others’ well-being.

Two diseases forced me to take my own medicine. First, I learned that I have Huntington’s Disease (HD) — neurodegenerative, incurable — and started making songs, T-shirts, jokes, schticks and a snarky virtual alter ego to express and undermine my despair and fear. Everyone with HD eventually loses control of their movements in a way that makes them look drunk. (I’m not there yet.) Police kept accusing a woman in our HD support group of public inebriation, so I wrote the song, “HD Blues,” and made a T-shirt with “No sir, officer, I am not drunk…” on the front and a description of HD on the back. Protection and education neatly nestled on a bed of 100% cotton.

Then came RLS — in my humble opinion, Ridiculously Labeled Sickness. I was often awake all night. Exhaustion and hopelessness led to the excerpt from a longer lament at the beginning of this column. And its neurological roots and medications made me unable to take most of the antidepressants I need for HD’s emotional symptoms. RLS forced me to choose between sleep or sadness, rest or rage. You who have it bad can relate to this sampling of pleas from an RLS discussion board post: “Scared, appreciate any help;” “a living nightmare;” “suicidal now;” “am I in hell?” and “HELP!”

Despite these diseases — sometimes because of them — I found that it’s possible to craft a new normal life, one that even includes moments of purpose, joy and satisfaction.

Along with care from medical personnel and support groups, the arts can play a pivotal role. Expressive arts therapy experts Stephen Levine, PhD, DSSc, and Ellen Levine, PhD, MSW, write that “the therapeutic power of art rests not in its elimination of suffering but rather in its capacity to hold us in the midst of that suffering so that we can bear the chaos without denial or flight.”

That’s deep and mostly true. But I’ve seen things that arts can cure.

They can spark hope out of despair. Nurture community where there was loneliness. Replace ignorance with knowledge. Swap pacing or crumpled exhaustion on the floor with dancing. Exchange emotional and physical trauma with contentment.

Making, giving and experiencing artistry at any skill level can increase well-being. Your legs may still disobey, but with hope, pleasure, catharsis, understanding and community, it’s possible not just to endure, but to thrive.

Two possible action points: First, make something for yourself or someone else that feels good — some of you already do this. Everyone has a creative spark, and what you make doesn’t have to be seen or heard by anyone else. Try something. Embrace imperfection. Second, you can help build a virtual collection of arts produced by people affected by RLS, gathering songs, poems, stories, dances, paintings, jewelry, quilts, films, video games and many other forms. Email info@rls.org if you’d like to be part of getting this collection off the ground.

Let’s start an RLS Arts-Making Movement.

‘Cause sometimes pacing turns to dancing Sometimes lonely points to loved
And sometimes endless dark night brightens into hope'

Brian Schrag is a senior arts consultant with SIL International. For more, explore www.BrianAtPlay.com/restless-legs-syndrome.

October 6, 2021

Recognizing Sleep Issues in Childhood

In the 2013 Patient Odyssey Survey conducted by the RLS Foundation, nearly half (45%) of survey respondents reported the appearance of RLS symptoms before the age of 30. Recognizing sleep issues in childhood is important to prevent development of adverse mood, emotions, social skills, behavior and overall school performance in children and adolescents.

Restless sleep disorder (RSD) is a potential new sleep diagnosis for children and adolescents (ages 6 to 18). RSD represents a constellation of characteristics of disordered and disrupted sleep and often, impaired daytime function (tiredness, behavioral issues, poor school performance, etc.). Pediatric sleep researchers have developed eight criteria for a diagnosis of RSD:

1. Parent, caregiver, bed partner or patient gives accounts of “restless sleep.”
2. Movements of large muscle groups occur throughout the body and can include any combination of head and limb movements.
3. Movements take place during sleep or apparent sleep.
4. Five or more movements are observed during each hour of sleep.
5. Restless sleep is observed three or more times each week.
6. The patient exhibits restless sleep for a minimum of three months.
7. Restless sleep substantially impairs the patient’s life activities, including social, emotional, academic or occupational performance. Other effects include changes in emotional state, short attention span, tiredness, inattentiveness or lack of impulse control.
8. All behavioral, medical or sleep disorders have been eliminated as possible causes of the disrupted sleep, including a review of the patient’s current medications and dietary behaviors to determine whether the disrupted sleep may have another underlying cause.

All eight criteria must be present for a diagnosis of RSD. Restless sleep can co-occur with other disorders such as obstructive sleep apnea, asthma or eczema, so it is important to include screening for those disorders in the consideration of an RSD diagnosis.

Restless legs syndrome (RLS) shares similar features with RSD, such as difficulty falling asleep and staying asleep. Video polysomnography (videorecording of sleep studies) provides a visual picture that helps to differentiate RLS from RSD. In children with RLS, the primary visual feature is an increase in periodic leg movements; whereas in children with RSD, large body movements and repositioning that repeat throughout the night are highlighted on video. More importantly, in RLS, a verbalized “need to move” the legs while awake by the child or adolescent is the key diagnostic feature that is not characteristic of RSD.

In a 2018 study in the scientific journal Sleep, children with RSD were found to have low ferritin levels (lower than those found in pediatric RLS patients), and another study in 2021 showed RSD symptoms respond to oral or intravenous iron. Additional studies will further the understanding of this phenomenon and its possible relationship to the development of RLS.

Many adults with RLS report the emergence of RLS symptoms in their youth. RSD may account for some of these early symptoms that were part of their childhood and adolescence. If you suspect a child has a sleep disorder, a comprehensive medical evaluation by a pediatric sleep specialist will help to identify any potential sleep conditions that may be responsible for disrupting a restful night’s sleep.

References:

DelRosso LM, Bruni O, Ferri R. Restless sleep disorder in children: a pilot study on a tentative new diagnostic category. Sleep. 2018;41.

DelRosso LM, Ferri R, Allen RP, Bruni O, Garcia-Borreguero D, Kotagal S et al. Consensus diagnostic criteria for a newly defined pediatric sleep disorder: restless sleep disorder (RSD). Sleep Med. 2020;75:335-40.

DelRosso LM, Picchietti DL, Ferri R. Comparison between oral ferrous sulfate and intravenous ferric carboxymaltose in children with restless sleep disorder. Sleep. 2021;44.

September 5, 2021

By Karla Dzienkowski, RLS Foundation Executive Director

RLS awareness and education are two recurring themes for individuals living with RLS. Unfortunately, healthcare providers often lack awareness of the disease and/or the clinical knowledge to manage patients according to consensus treatment guidelines.¹

Three women based in the UK, Ireland and the Netherlands joined forces to do something about it. Julie Gould, Charlotte Deerenberg and Rachel Andrews met online and decided to address the lack of RLS training offered during medical school.

In the UK, the undergraduate and postgraduate training curriculum for physicians does not include a study component dedicated to RLS that introduces the diagnostic criteria, treatment considerations and long-term management of the disease. In the US as well, medical students lack training in diagnosing neurological sleep disorders like RLS.

Lack of knowledge can have a negative impact on patients. Clinically significant RLS has an estimated prevalence of 2.7%, yet this common neurological sleep disorder is often misdiagnosed and undertreated.²

In 2017 an RLS Foundation-funded study published in Sleep Medicine found that training physicians in medical school to accurately diagnose RLS leads to lower overall healthcare costs and better health outcomes for patients.³

Deerenberg says, “Most individuals wait to see a physician until symptoms are more severe, affect daytime functioning and simple remedies (stretching, physical activity, massage) are no longer effective.”

A 2007 article in the Journal of Neural Transmission reported that it takes on average 12.7 years from the onset of symptoms for an RLS diagnosis to be made and treatment to begin – resulting in nearly 13 years of needless suffering.

When Gould, Deerenberg and Andrews recognized the absence of RLS in the curriculum to train physicians, they took a proactive approach to address this educational gap. Working together, they decided to raise awareness by creating a letter-writing campaign to educate key individuals (legislators, persons in the medical community, and leaders of organizations) about the disease. In August, 2021, The Lancet, a leading peer-reviewed medical journal, accepted and published their article, “A call for better training in restless legs syndrome.”

Andrews observes, “RLS evokes severe resistance in the medical community; individuals with RLS understand that resistance, and The Lancet overcame the resistance to RLS.”

September 23 is RLS Awareness Day. Gould says, “We seek more correspondence from The Lancet article and plan to continue our outreach to raise awareness of RLS and inclusion of restless legs syndrome in the medical school curriculum.”

Whether it is a group of concerned individuals meeting around a dining room table in Raleigh, North Carolina, to establish the RLS Foundation in 1992, or a small team collaborating online in 2021 to publish an article in The Lancet, one thing is clear to the RLS community: Our work is not yet done. Each of us needs to do our part.

What will you do to raise awareness and the need for medical education about RLS?

__________

¹Silber M, Buchfuhrer M, Earley CJ, Koo BB, Manconi M, Winkelman JW, for the Scientific and Medical Advisory Board of the Restless Legs Syndrome Foundation. The Management of Restless Legs Syndrome: An Updated Algorithm. Mayo Clin Proc.July2021;97(7):1921-1937. doi; 10.1016/j.mayocp.2020.12.026. Open Access Journal Article.

²Allen RP, Arthur S Walters AS, Montplaisir J, Hening W, Myers A, Bell TJ, Ferini-Strambi L. Restless legs syndrome prevalence and impact: REST general population study. Arch Intern Med. 2005 Jun 13;165(11):1286-92. doi: 10.1001/archinte.165.11.1286.

³Padula W, Phelps CE, Moran D, Earley CJ. Allocating provider resources to diagnose and treat restless legs syndrome: a cost-utility analysis. Sleep Med. 2017 Oct;38:44-49. doi: 10.1016/j.sleep.2017.06.034. Epub 2017 Jul 27.

August 18, 2021

The Buchfuhrers — Celebrating Father’s Day as Doctor Team

By Rich Archbold

When Julia Buchfuhrer was growing up, she had a special bond with her father, Mark Buchfuhrer, but, hard as he tried, he could not persuade her to become a doctor like he was.

‘No way, no way,” she told her dad. She was interested in other things, like maybe being a marine biologist. But her dad persisted.

He finally got his wish when his daughter decided to go to medical school and become a doctor, but that wasn’t the end of the story. Julia Buchfuhrer graduated from med school at Western University of Health Sciences, did her residency at UC Irvine and is finishing her fellowship training at the University of Arizona this month to become a specialist in rheumatology.

She then had to make another big decision: Where to work after finishing her fellowship training? She decided to open up her own practice in Downey next month with — guess who — her father, who has been a doctor for almost 40 years and is nationally known for his work with restless legs syndrome.

Julia Buchfuhrer will open the JB Arthritis and Rheumatology Center at her father’s office, 11480 Brookshire Ave., in Downey.

“I am extremely excited to be working side by side with my father,” she said in an interview at his house on the east side of Long Beach last week.

“It’s the best Father’s Day present I could get,” her father said. “She is going to do great work and help a lot of people.”

Julia Buchfuhrer will be the third doctor in her family. Her mother, Laurie Buchfuhrer, practiced family medicine and was an addiction medicine specialist. She worked at Kaiser Permanente and Long Beach Memorial Medical Center. She got leukemia, though, when her daughter was 6 and retired early. Julia Buchfuhrer said her mom would always tell her to select a career she would enjoy.

“I think she was secretly proud that I followed in her footsteps,” Julia Buchfuhrer said. “When I made the Dean’s list in medical school, she told me how proud she was that I was doing medicine and doing it so well.”

Julia Buchfuhrer said she can’t wait to start working with her father. “I have so much respect for him and what he has done in his career,” she said. “I will be learning so much from him.”

Her father, though, sees it as a two-way street. “We will be learning from each other,” he said, sitting next to her in his home.

Mark Buchfuhrer was born on July 11, 1952, in Montreal, Canada. His parents were survivors of the Holocaust. His father, Norbert Buchfuhrer, was born in Poland and was a teenager when the Nazis sent him to a concentration camp in Warsaw. He escaped when he was 22 when he got on Oskar Schindler’s now-famed list. Schindler was a German businessman who saved more than a thousand Polish-Jewish refugees from the Holocaust by employing them in his factories during World War II.

Mark Buchfuhrer’s mother, Rose Katz, meanwhile, spent a year in a concentration camp in Hungary at the end of World War II and was saved. She met Norbert Buchfuhrer, her husband-to-be, on a boat going to Canada. She was a cashier in a hat design company in Hungary, but when she was asked her job skill in Canada, she said she was a hat designer — even though she had never actually designed hats, her son said. “But it turned out she had a skill in hat design and became very well known for her hat designs,” he said. She and her husband married in 1948 and had two children, Mark and his sister, Stephanie, who lives in Montreal.

Norbert Buchfuhrer died when he was 73, his wife died when she was 93.

“My mother used to tell me, ‘I’m going to live a long life to show you that you can, too,’” her son said. In high school, Mark Buchfuhrer said he wanted to be a scientist. “But my mother kept telling me to be a doctor, a doctor, a doctor. She said I could be successful as a doctor and take that skill anywhere and not be restricted to one place. She told me that 10,000 times.”

He finally listened and went to medical school at the University of Ottawa, graduating in 1977 and becoming the first in his family to become a doctor. He became a specialist in pulmonary medicine, treating diseases of the respiratory system. “My mom was overjoyed,” he said. He did his residency in Toronto where he met his wife-to-be, who was in her fourth year at medical school. They got married on June 22, 1980. They spent their honeymoon on an eight-day drive from Toronto to the Harbor-UCLA Medical Center in Torrance, where Mark had a fellowship in pulmonary medicine.

The couple spent a weekend in Seal Beach and liked the area so much they decided to live in Long Beach; they bought a condo in Marina Pacifica in Long Beach before buying a house on the east side near Long Beach State University, where they have lived for 37 years.

They have three children: David Buchfuhrer, 37, a software engineer; Michael Buchfuhrer, 35, a business owner; and Julia Buchfuhrer, 32. Mark Buchfuhrer was on the attending staff at various places, including Stanford University Medical Center, Harbor City; Downey Community Hospital (now PIH Health, Downey); USC Medical Center, Long Beach Community Hospital, and Good Samaritan Hospital, Los Angeles. He opened up his private practice in Downey in 2001 with his office now at 11480 Brookshire Ave. He became an expert, one of the few in the United States, in treating restless legs syndrome, which is a disorder causing pain and sleepless nights. The primary symptom of RLS, he said, is an urge to move one’s legs when trying to rest or relax. “This urge is often so compelling that RLS sufferers may have to walk, shake their legs, ride a bicycle, massage their legs, or stretch to alleviate their discomfort,” he wrote in a clinician’s manual on RLS. He has become beloved by his patients. “There isn’t a week that goes by without a patient telling me how my treatment has saved or changed their life,” he said.

Meanwhile, his sons and daughter were growing up. Julia Buchfuhrer graduated from Hill Middle School, which has since been converted to the Sato Academy of Math and Science, before attending Poly High School where she became an outstanding student. In eighth grade, she won first place in the Press-Telegram Halloween Scary Story Contest.

She also became an excellent soccer player and was a member of the Belmont Shore Women’s Rugby team. “I got injured a lot playing rugby, but that’s where I saw how doctors could help people get better,” she said. “I liked the idea of helping people medically.”

She also became a huge fan of bike riding, which her father also liked. “We cycled together all the time,” she said. “We rode with a group in Irvine called the Orange County Rebel Riders. “We went on mountain rides and on past Father’s Days, we would go cycling for miles and come home for a family get-together.”

Julia Buchfuhrer had a scare one time when her bike hit a rock on an 8- mile trail in Rock Creek, 30 miles south of Mammoth Lakes. “I got thrown off my bike and suffered a nasty gash in my forehead,” she said. “Blood was gushing all over. Vultures were even circling in the sky. My dad bandaged me up, and hikers came by who helped us.” She still has a visible scar above her left eye.

And when she was 30, she got breast cancer, and she had a double mastectomy and reconstructive surgery. But she is a fighter. “The hardest part was enduring three-to-four months of chemotherapy, but I missed only two-to-three days of training,” she said.

Julia Buchfuhrer said she loves doing things with her father and listening to him tell stories. “He is a great storyteller. We have become great friends.”

“She’s my buddy,” her father said, putting his arm around her. “I’m so happy she’s here for Father’s Day.”

Julia Buchfuhrer said she will fly back to Arizona this afternoon, Sunday, June 20, to finish her medical training and won’t have time to do her traditional Father’s Day bike ride with her dad. But she will celebrate Father’s Day at a family get-together.

She is also already planning a few weekend trips to Mammoth Lakes in August to hike and make up for some lost bike rides. “Since we are both our own bosses, we can schedule as many of these trips together as we like,” she said with a grin.

Reprinted with permission from Rich Archbold, Press-Telegram. All rights reserved. Visit rarchbold@scng.com for more information.

https://www.presstelegram.com/2021/06/20/rich-archbold-the- buchfuhrers-celebrating-fathers-day-as-doctor-team/

July 12, 2021

The Management of Restless Legs Syndrome: An Updated Algorithm

Restless legs syndrome (RLS) is a common neurological disorder affecting up to 10% of the population in the United States, with nearly 3% experiencing severe symptoms that require daily medical treatment. An article in the Journal of Neural Transmission in 2007 reported that it takes nearly 13 years from the onset of symptoms to the initiation of a treatment plan for RLS.

Much has changed in RLS disease management in the last eight years, which has led to the update of the 2013 RLS treatment algorithm by the Scientific and Medical Advisory Board of the RLS Foundation. The updated algorithm was published in the July 2021 edition of Mayo Clinic Proceedings, a leading peer-reviewed clinical journal widely read by physicians and often cited in scientific papers. Publication in this journal will ensure the availability of this information to a broad group of clinicians, including primary care providers.

Scientific discoveries since 2013 have led to the better understanding of RLS and new approaches to disease management that include:

Clinical Advancements

• Untoward side effects of dopaminergic therapy; knowledge and understanding of the long-term risks of augmentation, impulse control disorders and rebound
• Consensus guidelines for the iron treatment of RLS
• Consensus guidelines for RLS diagnosis, treatment and management during pregnancy and lactation
• Appropriate use of opioid therapy in low total daily doses for refractory RLS
• Improved RLS diagnosis, treatment and management in children and adolescents

Research Advancements

• Clinical trials for pregabalin and oxycodone
• Adenosine and RLS relationship
• Identification and replication of 13 new RLS risk genes and confirmation of six previously identified RLS risk genes using GWAS (genome-wide association studies)

These advancements relate to ongoing research into the underlying causes of RLS and the search for durable treatments and potential cures for the disease.*

The 2021 RLS treatment algorithm is divided into sections that outline detailed guidance on clinical best practices in RLS disease management, including:

• General treatment considerations
• Alpha-2-delta ligands and iron treatment as first-line therapies
• Iron treatment guidelines for RLS
• Dopamine agonists as a second-line therapy
• Treatment for intermittent, chronic-persistent, and refractory RLS
• Special patient populations and potential future therapies

The new treatment algorithm describes medication selection, use, dose and side effects. Decision trees and tables provide visual guidance for treatment consideration. Nondrug therapies and other approaches are highlighted, which include activities to stimulate the mind and the avoidance of medications and substances known to worsen symptoms. For example, RLS specialists who practice at certified RLS Quality Care Centers report that augmentation from certain medications is the No. 1 reason that patients seek specialized care from a knowledgeable and experienced provider. The 2021 RLS treatment algorithm pays special attention to the use of combination therapies and the appropriate use of opioids in low total daily doses to treat refractory RLS – a common, yet manageable treatment challenge. For the first time, the new treatment algorithm also discusses RLS management in pregnancy, lactation and childhood.

The 2021 RLS treatment algorithm is a comprehensive approach to the management of RLS in the various stages of disease progression and across the life span. Michael Silber, M.B., Ch.B., lead author on the article and director of the Center for Sleep Medicine at Mayo Clinic, says, “This updated algorithm is based on current research, consensus documents and the combined practical experience of a team of practitioners highly experienced in the management of RLS. We hope it will provide practical guidelines for primary care providers and specialists who are needed to treat patients with this common and highly distressing disorder.”

The RLS Foundation has made this an open-access article, available for free download by patients, clinicians and researchers. The RLS Foundation encourages members to share this article with their healthcare providers at www.rls.org/21Algorithm. Executive Director Karla Dzienkowski says, “The publication of the 2021 RLS treatment algorithm is based on the latest scientific knowledge and clinical experience of RLS experts from around the globe who serve on our Scientific and Medical Advisory Board. I thank these members for their service to the Foundation and the RLS community and for their work on this seminal publication that furthers our mission and goals to educate and support RLS research leading to better treatments and a cure.”

*The RLS Foundation funds the only research grant program dedicated to RLS. Member support for the Foundation’s Research Grant Program has funded nearly $2 million for 47 grants to RLS researchers, whose research forms part of these key advancements. A revised RLS Research Grant Program protocol will be announced later this year to further the quest toward a cure.

June 29, 2021

Statement has been endorsed by more than 25 medical, scientific, patient, and safety organizations

A new position statement from the American Academy of Sleep Medicine emphasizes that sleep is a biological necessity, and insufficient sleep and untreated sleep disorders are detrimental for health, well-being, and public safety.

Published online in the Journal of Clinical Sleep Medicine, the statement notes that sleep is vital for health and well-being in children, adolescents, and adults. While awareness of the value of sleep has risen in the last decade, there is a significant need for greater emphasis on sleep health in education, clinical practice, inpatient and long-term care, public health promotion, and the workplace.

“Healthy sleep is as important as proper nutrition and regular exercise for our health and well-being, and sleep is critical for performance and safety,” said AASM President Dr. Kannan Ramar. “It is the position of the AASM that sleep is essential to health, and we are urging educators, health care professionals, government agencies, and employers to prioritize the promotion of healthy sleep.”

The statement was written by the members of the 2020 – 2021 AASM board of directors, comprising 11 sleep medicine physicians and a clinical psychologist. In recognition of sleep’s significant and multi-faceted connections to health and chronic disease, the authors outlined the following positions:

• Sleep education should have a prominent place in K-12 and college health education, medical school and graduate medical education, and educational programs for other health professionals.
• Clinicians should routinely inquire about sleep habits and symptoms of sleep and circadian rhythm sleep-wake disorders during patient encounters, and hospitals and long-term care facilities should optimize sleep conditions.
• Healthy sleep should be targeted by public health and workplace interventions to improve health-related outcomes, and behaviors that help people attain healthy sleep should be actively promoted.
• More sleep and circadian research is needed to further elucidate the importance of sleep for public health and the contributions of insufficient sleep to health disparities.

“Education about sleep and sleep disorders is lacking in medical school curricula, graduate medical education, and education programs for other health professionals,” said Ramar. “Better sleep health education will enable our health care workforce to provide more patient-centered care for people who have common sleep disorders such as obstructive sleep apnea and insomnia.”

According to the authors, chronic insufficient sleep and untreated sleep disorders are linked to increased health and safety risks such as cardiovascular disease, diabetes, obesity, workplace accidents, and motor vehicle crashes. Data from surveys conducted by the Centers for Disease Control and Prevention and the Maternal and Child Health Bureau show that 34.1% of children, 74.6% of high school students, and 32.5% of adults in the U.S. fail to get a sufficient duration of sleep on a regular basis. Therefore, helping people get enough sleep is one of the goals of Healthy People 2030, which provides 10-year, measurable public health objectives for the U.S.

The AASM position statement declaring that sleep is essential to health has been endorsed by more than 25 medical, scientific, patient, and safety organizations:

• Alliance of Sleep Apnea Partners
• American Academy of Cardiovascular Sleep Medicine
• American Academy of Dental Sleep Medicine
• American Academy of Neurology
• American Academy of Otolaryngology—Head and Neck Surgery
• American Academy of Physician Assistants
• American Association of Clinical Endocrinology
• American Association of Sleep Technologists
• American College of Preventive Medicine
• American Geriatrics Society*
• American Society for Metabolic and Bariatric Surgery
• American Society of Addiction Medicine
• American Society of Anesthesiologists*
• American Thoracic Society
• Circadian Sleep Disorders Network
• International REM Sleep Behavior Disorder Study Group
• National Safety Council
• National Sleep Foundation
• Obesity Action Coalition
• Project Sleep
• Restless Legs Syndrome Foundation
• Sleep Research Society
• Society for Research on Biological Rhythms
• Society of Anesthesia and Sleep Medicine
• Society of Behavioral Sleep Medicine
• Start School Later
• Wake Up Narcolepsy
• World Sleep Society

*The American Geriatrics Society supports the general principles in the document and believes it is of general benefit to its membership. The American Society of Anesthesiologists’ Administrative Council approved support for the position statement with qualifications; since the document has neither been presented to nor approved by either the ASA Board of Directors or House of Delegates, it is not an official or approved statement or policy of the Society. Variances from the recommendations contained in the document may be acceptable based on the judgment of the responsible anesthesiologist.

June 14, 2021

Magnesium and RLS

By Maddie Lionberger, RLS Foundation Research Coordinator

Magnesium is a naturally occurring mineral in our bodies that plays an essential role in a diverse array of biochemical processes, including protein synthesis, muscle and nerve function and blood glucose control. Deficiencies in magnesium can lead to muscle contractions, cramps and problems with conduction of electric signals along nerves. Because of magnesium’s important function in the nervous system, considerable attention has been given to using magnesium supplements to relieve the symptoms of restless legs syndrome (RLS). However, the evidence behind magnesium as an RLS treatment is largely anecdotal. To assess whether taking a magnesium supplement could benefit you, consider the normal values and functions of magnesium and the research as it pertains to RLS.

Magnesium Intake

According to the Office of Dietary Supplements of the National Institutes of Health (NIH) the adult body contains about 25 milligrams (mg) of magnesium. Total magnesium level is tightly regulated by the kidneys, which excrete about 120 mg of magnesium in the urine per day. The Food and Nutrition Board of the National Academy of Medicine recommends an average daily intake of about 240 to 420 mg for men and 240 to 320 mg for women. These recommendations vary by age and sex and are higher during pregnancy. Most people can obtain daily recommended magnesium levels through diet alone – for example, by eating dark green, leafy vegetables such as spinach and kale; nuts and seeds; fish like mackerel and tuna; beans and lentils; avocados; bananas and low-fat or nonfat dairy products. Consuming caffeine, on the other hand, can decrease magnesium levels. Magnesium is also present in dietary supplements and in some medicines, such as antacids and laxatives.

Overall magnesium status is difficult to assess, with 50% to 60% of magnesium present in the bones and the rest mostly in the blood and soft tissues. The most common method for assessing magnesium is by measuring serum magnesium concentration. Normal serum magnesium concentrations range between 0.75 and 0.95 millimoles per liter (mmol/L). Other methods for assessing magnesium status include measuring concentrations in erythrocytes (red blood cells), saliva and urine. However, no single test is considered sufficient without comprehensive laboratory tests and clinical assessment.

Magnesium Deficiency

Symptomatic magnesium deficiency due to low dietary intake is uncommon. Symptoms of deficiency are more likely to arise from excessive losses of magnesium due to certain health conditions and medications. Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue and weakness. As deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures and personality changes may develop. In severe cases, magnesium deficiency can result in hypocalcemia (low blood calcium) or hypokalemia (low blood potassium). Individuals more likely to be at risk of magnesium inadequacy include those with gastrointestinal diseases such as Crohn’s disease, celiac disease and enteritis (small bowel inflammation); Type II diabetes; or alcohol dependence. Older adults in general are more at risk because they typically consume insufficient amounts of magnesium in their diets or have medical conditions requiring medications that reduce magnesium absorption in the gut.

Supplementation

In the event of a deficiency, magnesium can be taken as a supplement. There are several different doses and forms available, including magnesium oxide, citrate and chloride. Absorption depends on the type of magnesium. Although magnesium oxide is the most commonly available oral supplement, studies reported by the NIH suggest that magnesium in the aspartate, citrate, lactate and chloride forms is absorbed more completely than magnesium oxide or sulfate. Magnesium sulfate can also be administered intravenously (IV), but that method is generally reserved for more severe cases of hypomagnesemia (low levels of magnesium in the blood). The most common use of IV magnesium sulfate is for the prevention of seizures in pregnant women with preeclampsia, eclampsia or toxemia. The Food and Drug Administration recommends against prolonged use of magnesium sulfate; too much magnesium sulfate, or excessive amounts of any supplement for that matter, can be toxic. It is important to consume plenty of fluids while taking magnesium supplements. Consult your doctor before making any changes to your medication regimen.

One of the main roles of magnesium in the nervous system is to block the calcium channel in nerve cells. In other words, magnesium needs to be removed for signaling to occur. Thus, low magnesium levels or magnesium deficiency can result in an over-excited state and eventually cell death of the neuron called excitotoxicity (a pathological process by which neurons are damaged and killed by overactivation). Abnormal neurotransmission of this kind has been implicated in many neurological disorders, including migraine, chronic pain, Alzheimer’s disease and Parkinson’s disease. In a 2018 analysis, "The Role of Magnesium in Neurological Disorders," by Anna E. Kirkland et al., researchers reviewed literature on the role of magnesium in the prevention and treatment of certain neurological disorders. One study showed that high magnesium concentrations were associated with a reduced risk of Parkinson’s disease. However, research examining magnesium levels in people with Parkinson’s has yielded mixed results overall.

Effective for RLS?

With the similarities that RLS and Parkinson’s disease share in pathologies to the dopamine system, it may seem intuitive to try magnesium as a preventive measure for RLS symptoms. However, there is little to no research to support the use of magnesium for idiopathic RLS. Much of the research addressing magnesium and RLS involves symptoms during pregnancy. It is likely that taking magnesium is perceived as an effective therapy for RLS when magnesium deficiency is a contributing factor, i.e., the supplement provides relief for muscle cramps that are easily confused with RLS symptoms. An existing magnesium deficiency may also explain why some individuals report that caffeine triggers their RLS symptoms. If this is the case, it may be beneficial to test magnesium levels. Despite the lack of any scientific correlation with low magnesium levels and RLS, there are many anecdotal reports of people with RLS benefiting from taking magnesium supplements. However, since there is a very strong placebo response for any potential RLS treatment, it is difficult to determine whether these reports truly reflect a benefit for magnesium supplementation and RLS. Large double-blinded medical trials would be necessary to prove that magnesium would be helpful for RLS symptoms.

If you suspect that a magnesium deficiency may be contributing to a worsening of your RLS symptoms, discuss this with your healthcare provider and follow their recommendations and guidelines before making any changes to your medications or supplements.

May 28, 2021

In-Person and Virtual Meetings

By Steven Zucker, Metro Denver RLS Support Group Leader

As a member of the RLS Foundation, I eagerly anticipate each new edition of NightWalkers. A few years ago, I would immediately flip to the back pages, checking to see if a Colorado support group had been started. My disappointment eventually led me to inquire about starting one. In April 2019, I was approved to become the Metro Denver RLS Support Group leader.

As I planned for our first meeting, I had several initial goals in mind. I envisioned this group as a source of social-emotional support in our struggles to cope with RLS; a vehicle for educating ourselves as fully as possible regarding RLS symptoms, treatments and ongoing research; and, a way to help one another become effective advocates for our own treatment when visiting doctors and other healthcare practitioners. Feedback from the group suggests that we are upholding these goals.

Our first three support group meetings were held in person. We had ample opportunity to share our stories and compare notes regarding the physicians we see and our treatment regimens. We discussed the remarkable range of medications and treatments used by group members and the ever-changing regimen we all seemed to follow trying to stay one step ahead of our symptoms. Prior to each meeting, I would share a tentative agenda and numerous scholarly articles in hope of facilitating group discussion. The group consistently requested that we invite experts in the field to speak at our meetings. We were very fortunate to have Jacci Bainbridge, PharmD, join our last in-person meeting; her expertise was very much appreciated!

When COVID-19 became our new reality, all in our group were in favor of waiting out COVID until we could resume in-person meetings. But after five months, the group seemed more open to trying virtual meetings. We went from having roughly 25 people attending to only six or seven consistently joining our virtual meetings.

Despite fewer members in attendance, virtual support group meetings have proved successful. Members continued to share successes and frustrations in their attempts to cope effectively with their RLS symptoms. We continued to review pertinent research articles and discussed how to make our time together as valuable as possible and how to eliminate aspects of virtual meetings that were problematic to some. For example, the inability for everyone to speak during the discussion, the lack of opportunity to provide feedback, and various technical issues.

Body language is not nearly as effective when meeting virtually. One big challenge for me as the moderator of the virtual format has been to monitor speaking time and ensure that all members have sufficient opportunity to share and feel truly heard by the group. As members grew more comfortable with the virtual format, conversations among members outside of meetings via email seemed to increase substantially. These email conversations seemed comparable to the naturally occurring in-person conversations during break times, or while leaving our meeting space and packing up food and supplies.

I asked group members for their input regarding the effectiveness of virtual meetings. Many people enjoyed being able to participate in their sweats and especially appreciated eliminating a three-hour drive each way to attend in- person meetings. Here are some additional responses:

One benefit of virtual meetings may be that it allows easier access to speakers and experts in the field. It seems more reasonable to ask for one hour of a speaker’s time online to answer questions than to request that they travel to our meeting site. I hope there is willingness on the part of the experts I contact to participate in this way!

In these times of COVID-induced isolation, it's great to actually see some faces and hear some voices that share common concerns… to pass on and receive encouragement, share experiences with various treatments and medications, and share notes about different doctors. The support of Clara and the Foundation seems to make the virtual meetings go very smoothly.

Meeting and speaking with the group (whether in person or virtually) is something of a comforting balm and gives the additional gift of knowing that we are not crazy, nor are we alone.

When it is safe to meet in person once again, it is my hope that virtual meetings can and will continue. In so many beneficial ways, they are the perfect complement to gathering in person. I trust our group members will agree.

Virtual Support Meetings on Zoom are open to all - RLS Foundation members and non-members, RLS patients and their families, anyone interested in learning more about RLS looking for a safe place to share RLS concerns and victories! To register, go to www.rls.org/VSG.

May 17, 2021

What You Need to Know About COVID-19 Vaccines

By Maddie Lionberger, RLS Foundation Research Coordinator

In March of 2021 the world passed the one-year mark since the coronavirus pandemic was declared a Public Health Emergency of International Concern by the World Health Organization. As of May 17, nearly 34 million cases have been confirmed, with over 600,000 deaths attributed to COVID-19 in the United States alone. Amid the devastation and tragedy, communities and organizations have pulled together in unprecedented ways to overcome the challenges of the pandemic – the development of COVID-19 vaccines is an extraordinary example. Thanks to the concerted efforts of the medical science community, the world has gone from identifying a novel coronavirus to developing safe and effective vaccines in less than 12 months. To add perspective, in the past the fastest vaccine to go from development to deployment took about four years. Unfortunately, misinformation has created a lack of confidence in scientific evidence regarding COVID-19 and about the vaccines designed to fight it.

If you’re on the fence about getting vaccinated, it is important to recognize that anyone of any age can experience severe illness and even death if they contract COVID-19, and certain factors put some groups at greater risk than others. Because people who are age 65 and older are at a higher risk of severe illness from COVID-19, and restless legs syndrome (RLS) is significantly more common among older individuals, it is important for members of the RLS community to review the most up-to-date facts about COVID-19 and vaccines.

The Basics of COVID-19

COVID-19 is caused by coronavirus 2 (SARS-CoV-2). It is predominantly a respiratory illness, but it can also affect other organs. People with COVID-19 experience a wide range of symptoms from mild to severe, including fever, chills, loss of taste or smell, cough, shortness of breath, fatigue, muscle or body aches, headache, sore throat, congestion, runny nose and diarrhea. The incubation period for COVID-19 is estimated to be up to 14 days, with symptoms appearing on average four to five days after exposure. COVID-19 spreads from person to person mainly through the respiratory route; the closer people interact and the longer they interact, the more likely they are to transmit the virus, even if they are not showing symptoms. In a study with a large cohort of 44,000 people with COVID-19, 81% of individuals exhibited mild to moderate symptoms, 14% developed severe symptoms and 5% were reported to be in critical condition. According to the Johns Hopkins Coronavirus Resource Center, the United States is experiencing a 1.8% observed case-fatality ratio, which means the number of deaths for every 100 confirmed cases (almost two deaths per 100 persons infected).

Yet, despite the grim numbers, things appear to be looking up. In mid- February, the director of the Centers for Disease Control and Prevention, Rochelle Walensky, MD, PhD, reported that COVID-19 cases in the US had been in decline for five consecutive weeks. Furthermore, new hospitalizations have consistently gone down since early January. The downward trend is multifactorial, resulting from a combination of behavior changes (masking, social distancing and restricted travel), seasonality, past infections, and vaccinations. To date, three vaccines have been issued Emergency Use Authorization by the US Food and Drug Administration for the prevention of COVID-19. However, the speed at which these vaccines were developed has raised questions in many people’s minds about how they work and how effective they are.

How the Vaccines Work

First, to understand how vaccines work, it helps to look at how the human body fights disease. When pathogens invade the body, the immune system deploys several tools to fight them. Specialized white blood cells recognize foreign substances (antigens) as dangerous and launch an attack on infected cells. Meanwhile, the immune system produces antibodies that allow the body to remember the antigens specific to that disease. Vaccines work by injecting a weakened or inactive virus that triggers an immune response and allows the body to build up a disease-specific memory, so that it’s ready to fight should an infection occur.

The most basic difference among the three vaccines available for COVID-19 has to do with how the vaccine prompts the body to launch an immune response. The Moderna and Pfizer-BioNTech vaccines are both mRNA vaccines, which means that they contain strands of genetic material, called mRNA, that give cells instructions on how to make a harmless version of the protein (the “spike protein”) that is unique to SARS-CoV-2. The immune system recognizes the protein as foreign and builds a defense to fight the antigen specific to COVID- 19. The Johnson & Johnson (J&J) Janssen vaccine is a viral vector vaccine. Instead of using mRNA to provide cells with instructions on how to make the spike protein, vector vaccines contain a harmless adenovirus inserted with DNA genetic material specific to COVID- 19. The DNA then produces mRNA, which causes the same immune response as the Moderna and Pfizer-BioNTech vaccines. Because none of the COVID-19 vaccines contains the live (either weakened or inactivated) virus that causes COVID-19, none of the vaccines can make you sick with COVID-19.

All the vaccines that have received Emergency Use Authorization have been carefully evaluated in clinical trials to ensure that they are safe and effective. The Pfizer and Moderna vaccines have shown astonishing degrees of effectiveness (95% and 94.1%, respectively) in preventing symptomatic COVID-19 infection after two doses of vaccine. The Pfizer and Moderna vaccines require two doses (21 and 28 days after the first shot, respectively). The second dose of the same vaccine is important to ensure that you get robust, long-term protection from COVID-19 soreness at the site of the injection, swelling, body aches, fever, chills, tiredness or headache. Such side effects are normal; they are a sign that your body is building up protection. They are not a sign of infection from COVID-19. Comparing the efficacy of the Pfizer and Moderna vaccines to the efficacy of the J&J vaccine is challenging because of differences in the timing of the trials (the J&J vaccine had to face the more virulent African and British strains, which were not present during the earlier Pfizer and Moderna trials). Overall, across eight countries, the J&J vaccine was shown to be 66% protective (72% in the US) against moderate to severe disease, and 85% effective in protecting against severe disease after a period of at least 28 days.

Another distinction of the J&J vaccine is that it requires only one dose, which has significant public health implications in terms of vaccine distribution. What’s more, the J&J vaccine proved to be 64% effective against moderate to severe or critical disease in South Africa, where coronavirus variants have raised concerns.

COVID-19 Variants

To date, three notable variants of COVID-19 have been documented in the United States and globally: B.1.1.7, B.1.351 and P.1. Virus variants emerge when one or more mutations occur, differentiating the new virus from the wild-type (the term in genetics referring to the typical or predominant form). Mutations can have different characteristics. For instance, these three variants of COVID-19 share a specific mutation that gives them the ability to spread more quickly. It is not surprising that variants have developed, because viruses are constantly evolving; however, the development of variants underscores the importance of keeping up measures that stop the spread of infection and getting the majority of the population vaccinated before more virulent mutations can occur.

Protecting Yourself and Your Loved Ones

As demand for the vaccines has skyrocketed, it has proven difficult for many people to be vaccinated as soon as they would wish, in part because distribution differs from state to state. Many resources are available to help people find vaccine appointments. For example, National Public Radio created a tool in which you can search by your state to find step-by-step instructions as well as tips for signing up and receiving the vaccine. See below for links to this and other resources. In addition to protecting individuals, the goal of wide-spread vaccination is to achieve “herd immunity,” which only happens when enough people in a community are protected because they’ve already had the disease or because they’ve been vaccinated against it. Pass along the helpful, science-based information to your family, friends and neighbors as well. In the meantime, while waiting for your vaccination(s), you can work to stop the spread of COVID-19 by taking four simple actions: 1) Wear a mask, 2) wash your hands, 3) stay at least six feet away from others who don’t live with you, and 4) avoid crowds.

More Information

For the most up-to-date information on COVID-19, visit:

• https://www.cdc.gov/coronavirus
• https://www.npr.org/sections/health- shots/2021/02/18/967448680/how-to-sign-up-for-a-covid-19-vaccine- in-your-state
• https://www.cdc.gov/vaccines/covid-19/reporting/vaccinefinder.html

May 5, 2021

By Stefan Clemens, PhD, HdR, Chair, Research Committee, RLS Foundation Scientific and Medical Advisory Board

The RLS Foundation’s Research Grant Program is a return-on-investment initiative; member contributions lead to advances in the understanding of RLS and to potential improvements in treatment options. The RLS Foundation established the Research Grant Program in 1997 under the leadership of Bob Waterman (Board of Directors member with two terms as Board Chair, 1995–2005 and 2011–2019). The idea was to award small research grants seed funding to provide the critical data necessary to secure additional research grants from national and international agencies.

The first research grant was awarded in 1999. Since then, an average of about two projects per year have been funded. To date, 48 grants have been supported by the RLS Foundation, totaling nearly $2 million in research funding. These 48 projects were carried out by 41 clinicians and researchers. Their findings have led to over 25 publications in a wide range of neurological and neurobiological journals and books. More importantly, the seed-funding grants provided by the RLS Foundation have led to over $10 million in additional grant support from other sources, thereby further strengthening research in the field of RLS.

Research grant applications are first reviewed by the RLS Foundation’s Scientific and Medical Advisory Board (SMAB); details about its members can be found at www.rls.org/SMAB. The SMAB consists of both clinicians and basic science researchers who are responsible for monitoring RLS medical and scientific research issues and bringing their respective expertise to the grant review sessions. In addition to reviewing research grant applications, the SMAB reviews all Foundation publications and advises the RLS Foundation’s Board of Directors on issues of medical or scientific interest and importance. A group of external specialists approved by the SMAB has agreed to serve as grant reviewers to strengthen the rigor of the research supported by the RLS Foundation and to provide additional guidance. Research grant proposals that receive a favorable decision by the SMAB are then presented to the RLS Foundation’s Board of Directors for funding consideration.

Since its inception, the grant program has focused on specific areas of study: genetics, epidemiology, iron regulation, neurophysiology, the development of novel treatment options and RLS animal models. Based on the findings of research in these areas, the SMAB recently developed new guidelines and funding priorities for future grant proposals that are summarized here:

Brain Iron Homeostasis: RLS is regularly associated with changes in brain iron function.

• Research Target: Elucidate the biological factors that contribute to RLS-relevant alterations in iron homeostasis in the nervous system.

Genetic/Epigenetic Factors: Multiple studies have underscored the role of specific genetic and epigenetic factors in the development of RLS. Genetic factors refer to factors that stem from familial heredity or gene mutations; epigenetic factors refer to changes in a person’s genome as a function of, for example, exposure to environmental factors.

• Research Target: Identify genetic and epigenetic factors and their interactions in RLS patients and develop animal models in which these interactions can be better explored in mechanistic detail.

Comorbidities: RLS is often associated with a wide range of other neurological and non-neurological diseases. What is the impact of RLS on other ailments such as cardiovascular disease, sleep apnea or Parkinson’s disease?

• Research Target: Identify any possible causal links between RLS and these other diseases.

Neurobiological Interactions: A variety of signaling molecules have been identified in the nervous system that are changed with RLS. It is often unclear, however, if the changes in these signaling molecules are themselves causing RLS symptoms or if they are a result of other changes.

• Research Target: Identify RLS-relevant neurotransmitters and neural pathways that may be implicated in RLS.

Therapeutics, Pharmacological Treatments and Therapeutic Responsiveness: A wide range of medications is used to treat RLS, and many of these compounds can lead to unwanted side effects, such as tolerance or augmentation.

• Research Target: Explain the pharmacology of existing RLS medications, develop novel approaches that show better efficacy or fewer side effects, and generally advance knowledge toward development of better treatments of RLS.

Nonpharmacological Treatments: In addition to current pharmacological treatment options, RLS patients may find benefit from nonpharmacological approaches. These include, but are not limited to: transcranial or spinal magnetic or electric stimulation; transcranial direct current stimulation; cognitive behavioral therapy; and intermittent compression of the lower limbs.

• Research Target: Describe the mechanisms in nonpharmacological treatments that lead to the improvement of RLS symptoms.

Novel Diagnostic Markers: Identifying RLS relies on the subjective feedback of a patient to their clinician.

• Research Target: Develop better assessment techniques or devices that will provide improved outcome measures for clinical research.

The RLS Foundation plans to open a new series of biannual calls for submissions of research grant applications with rotating main themes, in which submissions will be prioritized around the above-listed research areas. The RLS Foundation will also be seeking grant submissions from specialists in these respective areas, to increase the scientific depth and widen the breadth in RLS-related research. Additionally, the RLS Foundation has set aside funds for one predoctoral or postdoctoral fellowship grant per year to attract promising young investigators to the field. To contribute directly to that fund, go to www.rls.org/AllenFund.

These changes to the RLS Foundation’s Research Grant Program will improve our understanding of RLS in the clinic, spearhead new approaches and treatments in the lab, identify new and emerging drugs and technologies, and improve patient outcomes by engaging an increasing number of clinicians and researchers dedicated to finding a cure for RLS.

April 6, 2021

If there is one silver lining that we have seen the restless legs syndrome (RLS) community discover over the course of the COVID-19 pandemic, it is the bonding together of more and more people who are joining our network through online support groups. Since we were forced to “go virtual” as a safety measure, people who had been suffering silently – unable to travel or living too remotely to attend in-person support group gatherings – were suddenly able to share their stories, to give support to some, and to lean on others.

But well before COVID-19 struck, we have been following the journeys of RLS patients in our network. You can read some of their stories on our website and hear from some in our YouTube series “My RLS Journey.”

Caroline’s RLS started when she was in her 30’s and she tells of decades spent trying different remedies and being afflicted with augmentation. Her advice to fellow patients: “Keep an open mind and find the best neurologist you can.” Donnie recalls his journey commencing when he was a teenager. “I didn’t think it was anything out of the ordinary, but it didn’t stop what I was doing so I lived with it.” He acknowledges that RLS affects your life every day, but he didn’t let his RLS deter him from flying gliders and SCUBA diving – things he loves to do.

Each storyteller has charted his or her own unique journey. Lori describes her symptoms as “not pain, but not a tolerable feeling” and says that what helps her cope is, “getting my mind on something other than my legs.” Janice says that the day she first heard about RLS was one of the most memorable in her life: “The day I found out I wasn’t crazy – that I had a disease!”

But what they all share is the realization that they not only needed help themselves, but that they also needed to help others. Donnie says: “The first time I talked to somebody else who had RLS, it gave me some solace, knowing that there are other people out there who know what I’m going through ... so the best thing you can do is, ‘let me help other people, let me help them get through it.’”

Janice agrees that of all the people she’s met over the years, the ones whose stories stick with her are the people who were suffering and who looked to her for advice: “I was so glad I could be one step ahead of them to help them ... and other people have been one step ahead to help me.”

All these journeys are unique. But they all arrive, hand-in-hand, at a common destination – a station-stop on the road to a cure, where caring, hope and compassion meet. There are many ways you can reach this destination, too. You can share your story.

You can participate in an RLS support group. You can help us advocate for RLS research. And you can help the Foundation continue to bring our community together, by donating to the Foundation .

As Janice concludes: “That’s part of the hope, that we’ll all just reach out and grab one another’s hands.”