Restless Legs Syndrome Foundation Blog

RLS, COVID-19 and Our Superpower

Does COVID-19 present unique challenges to people with restless legs syndrome? You may have had a quick, almost automatic response to that question. Was it yes or no? As I started to unpack my own answer, I wondered what we know about staying healthy in the unique environment of a global pandemic, and how that stacks up with strategies to live our best life with RLS. It surprised even my optimistic self to find that those who live with RLS also have a superpower. To tell the story of that discovery is to explore our differences and our similarities.

People with RLS mostly find that we do better with understanding and connection. When observing a person new to a support group, I am always, always reminded of my own wonderment at finding myself in a room of people who got it, to whom I didn’t need to explain myself, who understood what it was like to be a nightwalker. Whether we are introverts or extroverts, whatever our challenges, we are relieved to find that we are not alone.

Also, we are not surprised to find that people with RLS are not all the same. We have different manifestations and frequency of symptoms, different remedies and different triggers. Some feel that familiar creepy, fizzy feeling in the legs, some in the arms, some even in the face. Some of us kick our partners out of bed with periodic limb movements in sleep (PLMs), some have pain, some do not, some may suffer night and day, some occasionally and some only with pregnancy. And the triggers!

Those are almost as idiosyncratic as fingerprints – from ice cream or alcohol to salted nuts and minor abrasions. Indeed, what sets off our symptoms seems to be a work in progress as we may discover variations of our own triggers with each passing year.

We are all learning in our own way how to manage our RLS. The question here is how to incorporate current, wise thinking about staying healthy during a global pandemic into our RLS coping solutions. We know the usual precautions. What more can we as individuals do?

Exercise matters: A recent article from the Exercise is Medicine initiative shows exercise improves immune function and response to viral infections, reduces stress, helps treat pre-existing conditions, and would enhance the effect of an eventual vaccine. The documented benefits of exercise are not news, and even though exercise science hasn’t caught up with the global pandemic, its protective role is widely known, particularly for older adults who are less effective in responding to vaccines by producing antibodies.

Many of us have learned the benefit of exercising above and beyond the kicking, tapping, fidgeting and squirming that come with the territory. Regular activity is a key to well-being. Some Foundation resources include: Can an Active Lifestyle Prevent or Improve RLS Symptoms? (see page 15) and the webinar from Dr. Norma Cuellar, RLS and Coping Strategies, both available at www.rls.org/webinars.

The difference for people with RLS is that we may need to be especially careful about timing and intensity. I crave vigorous regular exercise, but over (and under) exercising are sure triggers for increased symptoms.

Some find that in contrast to the usual stricture against exercise before bed, a late-night walk may prevent an even later night, unintended walk!

Resilience matters: Positive emotion and optimism can be built and are protective. There is no formula, but research points to some simple ways to develop resilience. Psychologist Dr. Rick Hanson of the Greater Good Science Center at the University of California Berkeley suggests three keys: first, through mindful breathing with longer exhalations, return to the present and away from worries about the future. Next, remember times when you have endured and connect with your strengths. Finally, connect with other people.

Again, check out the RLS and Coping Strategies webinar as well as the publication Complementary/Alternative Medicine and RLS. Both refer to mindfulness and breathing techniques. Connecting with one’s strengths reminds me of the absolute joy I felt the evening I sat in the middle-row and listened to a string quartet without moving an eyelash – thanks to the right treatment at the right time. When I breath into that memory and hold on to it, it helps in times when nothing seems to work. We can turn past experiences into inner resources to increase resilience in hard times.

Resiliency may also be tied to how we restore a sense of agency. Through acting on our behalf and that of others, we develop a sense of being in control during a time when so much seems beyond our control. For those of us with RLS, that path is clear and well-marked. The Advocacy page on www.rls.org provides expert guidance as does the webinar How You Can Raise Awareness, online at www.rls.org/advocacy.

Connection matters: Tied to resilience, this strategy is one you will have heard about, joked about with someone you love from a six-foot distance, and sometimes despaired of – wondering when you’ll ever hug someone in greeting again. Yet, you may also have found yourself reaching out to friends you haven’t talked to for years. I surprised myself by picking up the phone the other day and having a long and satisfying talk with a childhood friend from decades ago. Human connections are soul-restoring.

There is a reason we declare often that “you are not alone.” We each have our own story of relief when we found the RLS Foundation – frantic searching for help online in the middle of the night, a chance conversation on an airplane, an article in the local paper about a support group – and we can turbocharge the connection that leads to resiliency by sharing our stories with friends, family, community and our elected representatives.

Is there magic in all this? Yes. These suggestions for coping are as close as our own well-researched publications and webinars and they all have solid evidence behind them. But for people with RLS, there is more. A recent theme emerging from our virtual support group meetings is that we are all so very different and each have our go-to ways of taking care of ourselves. They are as individual as our triggers and as varied as “soap under the sheets” to low total daily dose opioids. The uncertainty, dread, and darkness of COVID-19 are equal to the effects we sometimes recognize from having RLS. Our superpower is that we already know how to deal with them. Our superpower is we’ve got this!

The RLS community has lost a giant in the field of Sleep Medicine and RLS research, Dr. Richard P. Allen.

Richard P. Allen, PhD, was a professor of neurology at Johns Hopkins University in Baltimore. He founded and served as the co-director of the Johns Hopkins Center for Restless Legs Syndrome, one of the Foundation’s certified RLS Quality Care Centers. Dr. Allen was a diplomate of the American Board of Sleep Medicine and founder of the International Restless Legs Study Group (IRLSSG).

In his dual roles as a clinician and researcher, he dedicated his life's work to RLS education, management, and treatment. He was instrumental in creating the RLS diagnostic criteria and rating scales for use in clinical and research settings, using consensus guidelines to provide state of the art care to RLS patients.

Research is an active part of the sleep medicine program at Johns Hopkins. Dr. Allen authored or co-authored 661 peer-reviewed RLS journal articles that include the consensus guidelines for the iron treatment of RLS, prevention and treatment of dopaminergic augmentation, genetics, and the RLS glutamate relationship. He authored book chapters, and editorials, as well as chairing NIH sections and symposiums on RLS.

RLS Foundation Executive Director, Karla Dzienkowski spoke of his importance to the field. "Dr. Allen was the leading expert in the field of RLS. He was respected and admired by his peers, who relied on his insight as a researcher and clinician. We will all miss him, especially the patients who were the recipients of his outstanding care."

Dr. Allen served as Chair of the Foundation's Medical Advisory Board during 1998 to 2000, served on that Board through 2008, and made significant contributions to the RLS Foundation. In 2000, he received the Foundation’s Ekbom Award, the highest award given to an individual who has enhanced the lives of those living with the disease.

The RLS Foundation has set up the Richard Allen Memorial Fund to be used to further RLS research. To contribute and honor Dr. Allen’s memory go to www.rls.org/AllenFund.

Virtual Support via Zoom

At the start of the COVID-19 pandemic, the Restless Legs Syndrome Foundation had to quickly adapt and make changes to some of the ways in which it serves the RLS community. Face-to-face support group meetings were no longer safe, so we decided to try a new a way of meeting using the Zoom platform. At first, only a handful of support group leaders were interested in switching to Zoom. But once we began to realize that this would be the new norm – at least for now – more and more groups were glad to have a way to safely connect with others while physical distancing at home. In fact, some of our support group leaders love the convenience of travelling to the couch for a meeting instead of across town!

"After using Zoom for a few virtual meetings, I felt excited because I'm able to attract more attendees from a wider geographical area,” said Bill Becker, one of the first support group leaders to hold a virtual support group meeting. “The support group also likes the tool, so we will be continuing to use this venue moving forward."

After many successful gatherings of local groups over Zoom, the Foundation decided to host meetings open to anyone who wanted to attend, regardless of their location. These virtual support group meetings were so popular that we now have four standing meeting times every month: one meeting per week at varying times and days of the week to accommodate different time zones. Participants from all over the world, including Australia, Ireland, UK and South America have joined. To register to attend a virtual support group, go to www.rls.org/vsg.

Many people who participate in these support group meetings had never spoken to another person with RLS until they found us – and you. Although it is unfortunate that we had to suspend face-to-face meetings, switching to a virtual support group platform has been a great and much-appreciated resource for the RLS community and Foundation staff, because it allows us to keep learning about people’s experiences and hear their stories.

During this time of physical distancing, stress and uncertainty, we found a way to come together, and one thing is certain: virtual support group meetings are here to stay! Moving forward, we have created a new volunteer position for virtual support group leaders. If you are interested in joining a virtual support group, visit www.rls.org/vsg and sign up for a time that works best for you. If you are interested in becoming a virtual support group leader, email clara@rls.org or visit www.rls.org/volunteer. We look forward to meeting you!

Reducing Stress During Anxious Times

With everything occurring in the world right now, it’s natural to feel stressed and anxious—not to mention, the ever-present stressor of living with restless legs syndrome (RLS). Although RLS is not caused by stress, it can contribute to and exacerbate symptoms. If you find yourself becoming overwhelmed with stress and anxiety, whether from extenuating circumstances or from dealing with your RLS, that stress can worsen RLS, which in turn, may lead to more stress. During times like these, it is especially important to not only develop strategies of coping with RLS symptoms, but also coping with stress and anxiety in general.

RLS symptoms can be relieved by engaging in mild-to-moderate exercise and mind-engaging activities. With many of us continuing to follow the stay-at-home orders in place and take necessary coronavirus (COVID-19) precautions, we sometimes have to get creative. Here are some ideas on how to keep your body and mind active while also coping with stress.

Physical Activity: exercise contributes to your overall health and your sense of well-being. Virtually any form of exercise can act as a stress reliever. Try these:

• Yoga/Stretching/Breathing. Studies show that yoga practices enhance muscular strength and body flexibility, promote and improve respiratory and cardiovascular function, reduce stress, anxiety, depression, and chronic pain, improve sleep patterns, and enhance overall well-being and quality of life. Whereas rapid, shallow breathing is a common response to stress; slow, deep, regular breathing incorporated during a yoga practice, is indicative of relaxation. Look for videos or apps that guide you through deep-breathing exercises.
• Running/Walking. The mental benefits of aerobic exercise include reduced levels of the body’s stress hormones adrenaline and cortisol and increased production of endorphins (also known as the “runner’s high”), which are responsible for feelings of relaxation and improved mood. For a change in scenery, try visiting parks near your house to limit travel and plan your outings carefully to maintain appropriate social distancing boundaries.

Mind-engaging Exercises: the motor and sensory symptoms of RLS begin or worsen during periods of rest or inactivity. Rest includes both lack of motor activity and decreased mental activation. Any activity that stimulates the brain can help significantly in controlling your RLS. Challenge yourself to word puzzles, reading, knitting, playing an instrument, writing, or the following:

• Transcendental Meditation. Transcendental Meditation (TM) is a technique that involves sitting with your eyes closed for 20 minutes and repeating a mantra specific to you. When done properly, people experience a shift of awareness to a wakeful but deeply restful state. Studies show that regular practice of TM has an impact on brain functioning and attention.
• Consider therapy. Simply writing down your thoughts and feelings can be very beneficial. It can also be helpful and necessary to speak with a trained counselor or psychotherapist, who can provide strategies for coping with stress through specific therapies.

Managing Stress and Anxiety

• Get out in nature. Studies show strong evidence between exposure to natural environments and recovery from physiological stress and mental fatigue. According to an article published in the journal of Advances in Environmental Psychology, viewing nature alone can help restore cognitive performance associated with stress, especially with tasks involving attention.
• Maintain a routine. We are all adapting to new routines. To the best of your ability, try to start your day at a specific time. Use a whiteboard, diary, planner, to-do-list, and/or an electronic calendar to plan your time and structure your day. Build in breaks!
• Know the facts. Understanding the risk to yourself and people you care about can make the COVID-19 outbreak less stressful. Help stop the spread of rumors and misinformation by going to credible sources of news and information, such as the Center for Disease Control and Prevention and the World Health Organization websites.
• Take breaks from the news. Although it is important to stay informed, being inundated with news can become overwhelming. Set designated times away from watching, reading, or listening to news stories, including social media. There are apps available that track the amount of time spent on social media and will allow you to set daily limits.
• Connect with others. Take the time to talk with people about your concerns and how you are feeling. Utilize all platforms to check in with your loved ones via telephone, email, letters or postcards, text messages, video chat, social media, etc. It can help to know that we are all in this together!

Everyone reacts differently to stressful situations. Stress can manifest as changes in sleep or eating patterns, difficulty concentrating, worsening of chronic health problems, worsening of mental health conditions, and increased use of alcohol, tobacco, or other drugs.

It is important to note that if you, or someone you care about, are feeling overwhelmed with emotions like sadness, depression, or anxiety, or feel like you want to harm yourself or others, please call 911. You can also find support 24/7 year-round by contacting the National Suicide Prevention Lifeline at 1-800-273-8255 or the National Domestic Violence hotline at 1-800-799-7233.

Dr. John Winkelman and Karla Dzienkowski Receive the 2020 Ekbom Award

Two unsuspecting recipients were awarded the 2020 Ekbom Award while live streaming on the 2020 RLS Foundation Virtual Summit. This prestigious award honors individuals who have enhanced the lives of people with RLS and made significant contributions to the RLS community. Winkelman, who was in transit to join a panel of RLS experts on the Zoom meeting, accepted the award from his car! Dzienkowski accepted her award from her daughter, Ali Dzienkowski, at her home office while hosting the RLS Virtual Summit.

John W. Winkelman, MD, PhD

John Winkelman, MD, PhD is currently the Chief of the Sleep Disorders Clinical Research Program at Massachusetts General Hospital in Boston. John received his PhD in Psychobiology from Harvard University, an MD from Harvard Medical School and then completed both a residency in Psychiatry and a fellowship in Sleep Medicine at Massachusetts General Hospital. Winkelman has served on the RLS Foundation Medical Advisory Board, which later became the combined Scientific and Medical Advisory Board, since 2001. He was among the researchers who conducted studies that led to the approval by the FDA, in 2005, of the first dopamine agonist for treatment of RLS. He designed and is managing a major research program to measure the long-term efficacy and safety of opioids to treat RLS – The Opioid Registry. That groundbreaking program, now in its third year, has some 500 participants. He has recently contributed to the Mayo Clinic Proceedings Revised Consensus Statement on the Management of Restless Legs Syndrome to be published in early 2021. But Winkelman's life work in RLS research is not the only story here. His treatment and care of his thousands of RLS patients over the years is what makes him so beloved by this community. His persistence and dedication to providing relief to his RLS patients has changed lives and sometimes saved lives when RLS seemed to crush all hope of living with this disease.

"John Winkelman has devoted his life's work to helping RLS and sleep related patients access to the correct and most up to date medications in hopes of a more normal life. He is truly deserving of this Ekbom Award and I, as well as his many patients, thank him for his passionate commitment to RLS." - Bobbie Kittredge, 2016 Ekbom Award recipient

“William Osler said: "The good physician treats the disease; the great physician treats the patient who has the disease.” John has brought his intelligence, energy and enthusiasm to inhabit the realm of Restless Legs Syndrome, so as to better understand the patient and their suffering. Thus, he is truly deserving of this award.” - Christopher J. Earley, MB, BCh, PhD, FRCPI, 2017 Ekbom Award recipient

Karla M. Dzienkowski, RN, BSN

Karla Dzienkowski, RN, BSN became the executive director at the RLS Foundation in 2014. Memberships and donations were no longer growing and the Board of Directors recognized the need for a dynamic leader to put the organization back on a growth path while creating new initiatives to improve the lives of those living with RLS. Fortunately, the right leader was available. Dzienkowski had served on the RLS Foundation Board of Directors from 2004 – 2009, as its Vice-Chair from 2007 to 2009. Her leadership of the organization has been powered both by her training as a nurse and her experience as a mother with a daughter with RLS.

Since accepting the position as executive director, Karla has broadened the base of support and created new programs supporting the RLS community. Working with a small, energetic staff, memberships have doubled and the Research Grant Program has been re-energized. Dzienkowski has spearheaded innovative programs ranging from the 2018 RLS Patient Symposium and the RLS Physician Education on-demand series to developing a targeted collection of RLS resources for children and teens with RLS. She has built a strong RLS advocacy program and expanded the RLS Quality Care Center Program to eleven centers with more being certified in the coming months. All of her efforts have positioned the Foundation to begin its fourth decade of service to the RLS community as the premier patient-centered organization working on behalf of everyone with the disease.

“As someone who has shown a rare combination of drive and imagination, giving all of herself and then more to this organization, I cannot think of anyone more deserving of this award than Karla.” - Christopher J. Earley, MB, BCh, PhD, FRCPI, 2017 Ekbom Award recipient

Karla Dzienkowski's Ekbom Award should not be a surprise to anyone who knows her. She has brought change and growth to the Foundation with her positive attitude and sheer determination to make this a great organization. Thank you, Karla, for your commitment to excellence. - Bobbie Kittredge, 2016 Ekbom Award recipient

Past recipients of the Ekbom Award include Lewis Phelps (2018), Dr. Christopher Earley (2017), Roberta Kittredge (2016), Dr. Michael Silber (2014), Pickett Guthrie (2008), Dr. Wayne Henning, posthumously (2008), Robert Waterman (2007), Sheila Connolly (2005), Robert Balkam (2003), Cate Murray (2001), Dr. Richard Allen (2000) and Dr. Arthur Walters (1999).

The RLS Foundation is grateful to the Ekbom family for allowing their name to be used for this distinguished award in honor of Dr. Ekbom and his work.

Watch the videos here:

John Winkelman, MD, PhD - https://www.youtube.com/embed/itwjly6kp6E

Karla Dzienkowski, RN, BSN - https://www.youtube.com/embed/n8RW9r0Zul8

Study: Hemoglobin Levels, Not Serum Ferritin, May Indicate a Better Response to Iron Intervention

Iron is fundamental to the healthy functioning of the body’s organs, including the brain. Its connection to the production of red blood cells is also a major determining factor in clinical practice when prescribing iron intervention. However, according to some scientists, the guidelines for iron replacement in neurological disorders, such as restless leg syndrome (RLS), are poorly defined.

“The current thinking, although not supported by all RLS physicians, is that serum ferritin levels are a measure of iron status and serve as a guidepost for iron replacement therapy," said RLS Foundation Scientific and Medical Advisory Board Member, Dr. James R. Connor. However, new research conducted by Connor and his team, and published in Fluids Barriers CNS, suggests that a patient’s hemoglobin levels may be a better indicator in determining the treatment guidelines for iron therapy.

The researchers conducted a preliminary research study to determine if the body’s iron status is communicated to the brain and they were able to show that iron transport does relate positively with hemoglobin (iron level measurement in the blood), but not with serum ferritin levels.

The team created a model to test their hypothesis. Using a cell culture model to mimic the blood vessels in the brain, they placed transferrin complexed with iron on one side of the cells (representing the blood side) and they put human cerebrospinal fluid on the other side of the cells which represented the brain side. The cerebrospinal fluid was randomly selected from more than 350 individuals enrolled in a study at Emory University for symptoms of excessive daytime sleepiness or other neurological disorders of excessive daytime sleepiness such as narcolepsy. Four additional samples came from an RLS study at Johns Hopkins University. Study samples were derived solely from females of northern European ancestry between the ages of 35 to 66 who were not considered anemic, a condition lacking healthy red blood cells.

The scientists said according to their findings, "the demand for iron for the production of blood cells in the bone marrow outweighs brain iron requirements. Thus, the study is showing that serum ferritin level, which is the traditional metric that is thought to reflect total body iron stores and relied upon to inform treatment decisions, may not be the preferred lab test when attempting to promote brain iron uptake.”

Connor said the data suggests that the hemoglobin levels may be a better indicator of which patients will respond to iron intervention and explains some of the individual differences in responders. "The data in this study supports physicians who consider serum ferritin levels an insufficient measure to determine which patients will respond to iron interventions. The next step would be to evaluate how hemoglobin levels impact response to iron treatment in RLS in a large population study."

About the Survey

Why should I take the RLS Patient Odyssey Survey II? – Data collected in the Patient Odyssey Survey II will offer researchers information on the long-term burden of disease, leading to improved medical treatments and improved quality of life. Your input matters! “This study will provide data to accelerate and focus our efforts to address these challenges and improve quality of life for RLS patients and their families.” -Karla Dzienkowski, Executive Director, RLS Foundation.

Who can take the survey? – The Patient Odyssey Survey II is open to anyone with RLS worldwide, with a separate survey open to partners or caregivers living in the same household.

Where can I find the survey links? – The patient and partner survey can be found on our website at: www.rls.org/odyssey. Or you can access the surveys directly on the survey platform website (see below).

How long will it take to complete? – The patient survey should take approximately 60 minutes to complete, and the partner/companion survey will take about 20 minutes to complete. However, you do NOT have to complete the survey in one sitting; the deadline to submit responses is Friday, October 23, at midnight.

Can I request a paper copy? – Absolutely! Contact us, and we can send you a printed survey with a return envelope. We can only mail to US addresses. Email maddie@rls.org to request a copy and be sure to include your name and mailing address. Be sure to mail your survey back to us by Friday, October 23.

How will the results be shared? – Results will be shared with the RLS community and the public in 2021, prepared for publication in the medical literature and presented in scientific meetings. Findings will also be shared with health policymakers through the RLS Foundation's Advocacy Initiative. It is important to note that protecting your privacy is of utmost importance to us.

Will my responses be confidential? – Your responses will remain confidential and anonymous. No individual identifying information is requested of or collected from survey participants.

Completing the Survey

What if I need a break while I’m taking the survey? Can I save my work and come back to it? – No problem! We recognize that the survey is long. The questions are designed to cover all aspects of living with RLS. You do NOT have to complete the survey in one sitting; you can close your browser and return using the same device to www.rls.org/odyssey to pick back up exactly where you left off. Just be sure to complete and submit the survey by midnight on Friday, October 23!

What do I need to do to make sure I submit the complete survey correctly? – After the final survey question you will be routed to an exit page thanking you for your participation. To ensure that your responses are recorded, make sure you click DONE at the bottom of this page; you will receive a “Success Page” to confirm that your responses have been received.

What if I don’t want to answer a question? – We understand that some questions may be difficult or uncomfortable to answer. You may choose to leave any questions blank you don’t wish to answer.

Is there a way to make the survey font size larger? – To zoom in on your computer screen, press the "Control +" keys on your keyboard (or "Command +" if you are using a Mac). You can also try adjusting the brightness of your computer and/or iPad screen. If you would prefer, we can mail a printed survey to your US address with a return envelope. Email maddie@rls.org to request a copy and be sure to include your name and mailing address.

What if I don’t find the right answer for me in the list of options for a multiple-choice question? – The RLS Patient Odyssey Survey II was written by medical professionals on our Scientific & Medical Advisory Board and includes questions from existing RLS validated questionnaires. One of the requirements when using validated questionnaires is that the questions must be presented exactly as written, with no changes to the original questionnaire. Just try to answer the question to the best of your ability, i.e., what is most reflective or representative of your RLS experience.

How do I enter dosages (invalid answer)? – Questions that ask for dosages require a numerical value only. Do not use letters (such as mg for milligrams). If you are instructed to take your medication several times per day, please provide the total dosage. For example, if your prescription states: gabapentin 600 mg TID PO, which translates to 600 mg three times daily per mouth, you would enter the number 1800. If a medication is used across multiple days, you can provide an average. If you are unsure you may email maddie@rls.org for assistance.

What should I do if I encounter technical difficulties? – Unfortunately, technical difficulties do happen. If this happens to you, you can contact us for a printed survey (see above), or take the survey directly on the Survey Monkey website (the survey development platform) here:

Who can I contact with questions? – For all other questions, comments and concerns, please email maddie@rls.org or call (512) 366-9109. Your input is very valuable to us!