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!