Support and Connection Are Just a Click Away

Wednesday, December 09, 2020

December 9, 2020

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!

Spotlight: Lisa Marie Smith

Wednesday, April 25, 2018

Guest Blogger: Bjorn Fredrickson

Monday, April 23, 2018

Spotlight: John Alexanderson

Wednesday, March 21, 2018

Spotlight: Rosemary Stader

Wednesday, March 14, 2018

Spotlight: Erika Hallerman

Wednesday, February 07, 2018

Depression and RLS

Monday, January 22, 2018

What You Need to Know

Depressive disorders are common in adults living with restless legs syndrome (RLS). In fact, the likelihood of developing depression with RLS is increased by 2-4 times when compared to other adults. While it is unclear exactly why this is, sleep disturbances and sleep deprivation are likely a contributing factor.

Indicators of depression include a low mood, diminished interests, feelings of worthlessness, weight gain or loss, fatigue or loss of energy, diminished concentration, insomnia or excessive sleepiness, mental/physical sluggishness or agitation, or thoughts of death. Many with RLS can feel totally alone in their struggle, especially during sleepless nights. If you are experiencing depression, you are not alone. There is help available.

The first step is to talk to your doctor about how you are feeling. (See our RLS Healthcare Provider Directory or Quality Care Center Network.) Fifty-eight percent of older adults think that "feeling blue" is a normal part of aging, but in fact it is not. These older adults often go untreated because they do not tell their healthcare providers about their symptoms, which can be triggered by chronic illnesses like RLS. It's important to assess the severity of the depression-related symptoms, and to consider whether poor sleep might be a significant factor. Treating the RLS before treating the depression can be beneficial, especially when depression-related symptoms are mild. However, patients with moderate to severe depression may need a different approach, which may include antidepressant medication.

It's important to note here that all antidepressants can worsen RLS symptoms. However, some RLS-safe alternatives include Desipramine (possibly), Nefazodone (may cause liver failure)*, Trazodone and Wellbutrin. Talk to your doctor about medication options to see what is best for you. Want to bring some RLS publications to your appointment? Email us and we will get you what you need.

In 2016, the RLS Foundation produced a webinar on RLS and depression featuring John Winkelman, MD, PhD, of Massachusetts General Hospital, a certified RLS Quality Care Center. Learn about the signs of depression, management strategies, and when to seek a professional opinion in this free webinar recording below.

While dealing with a chronic illness like RLS can sometimes seem fruitless, there are helpful and effective strategies for staying ahead of your depression. Talking about how you are feeling can be therapeutic and emotionally healing. RLS support groups are a safe environment that bring people together to share their experiences, coping strategies, and to build a community of care on which RLS patients and their families can depend. If there is not a support group in your area, all RLS Foundation volunteer support group leaders and remote contacts available via phone or email to provide support. Additionally, the Foundation's Discussion Board serves as a virtual support group, and is available 24/7 for those sleepless nights.

You have a treatable medical illness. There are resources available to you in every community including doctors, community agencies, clergy, and counseling centers. You are not alone.

If you are experiencing thoughts of suicide or self harm, call 911 immediately or visit your nearest emergency room.

*Note: The brand Serzone (nefazodone) has been discontinued but generic versions are still available. However, physicians must fully aware of side effects before prescribing.

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The Restless Legs Syndrome Foundation is a nonprofit 501(c)(3) agency that is dedicated to improving the lives of men, women, and children who live with this often-devastating disease. Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and through research, find a cure for RLS. The Foundation serves healthcare providers, researchers, 5,000 members and an estimated seven million individuals in the United States who have RLS. The Foundation has funded more than $1.6 million in RLS research.

Become a Foundation member today for only $35/year to access over 40 publications on RLS, as well as webinar recordings and NightWalkers archives. If you are in a difficult financial situation, we also have scholarship memberships available upon request.

Spotlight: Linda Tuomaala and Kathleen Nolan

Tuesday, January 16, 2018

Two New Support Group Leaders in Michigan

The RLS Foundation is pleased to welcome Linda Tuomaala as the new support group leader in Oakland County, and Kathleen Nolan as the new support group leader in Ann Arbor. Thank you both, and welcome!

Linda Tuomaala (Oakland County, Michigan)

RLS has been a part of my life for over 30 years. While seeing a neurologist years ago, I mentioned the difficulty sleeping due to the strange sensations in my legs and their jerking at night. I learned that these symptoms had names: RLS and PLMD. I found there was little information about it and a lack of awareness by people in general. When in social situations, I would ask others if they experienced this. None had and many had never heard of it. There was definitely a need to expand awareness of what RLS and PLMD are and how they affect a person's life.

After retiring from 27 years of teaching, I found that I had more time to volunteer, but needed something that I felt a connection to. From the RLS Foundation Facebook page, I learned there were support groups, but none in Michigan. (There are now two there.) This was a perfect fit. My purpose was two-fold. One, holding support group meetings that would bring people together to share information. In the process I would learn from them, too. Secondly, by being involved with the RLS Foundation, I would learn about current research.

Progress in dealing with RLS and PLMD happens when both patient and doctor have available to them the most current information. As an RLS Foundation volunteer support group leader, I will do what I can to facilitate that process. Already from the few meetings that my group has held, I have learned how helpful it is to meet, share information and support one another.

Kathleen Nolan (Ann Arbor, Michigan)

I decided to become a support leader because there were no meetings in Michigan, and I felt it was important to have group support to discuss RLS symptoms and management. It is also a syndrome that is very misunderstood and many think it is not real. My hope is that with a group in southeast Michigan, both knowledge and management can be shared.

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

Spotlight: Andrew Tershak

Tuesday, January 02, 2018

New Support Group Leader in Aiken, South Carolina

The Foundation is pleased to welcome Andrew Tershak as the new support group leader in Aiken, South Carolina. Thank you, Andy, and welcome!

I have suffered from RLS issues for over 30 years and was happy to hear about, and be able to attend, the first RLS Foundation patient meeting in St. Louis in 1992. The meeting gave me hope that RLS was becoming a recognized medical problem.

Over the years since then I have strived to be creative in how I handled the day-to-day RLS occurrences, though there have been challenges in nearly every aspect of life. In my professional executive position, symptoms were particularly vexing in meetings, travel and the expected social interactions. Even with an understanding family, daily obligations and social outings like movies, eating-out and neighborhood gatherings, were threatened by restrictions of time and movement. While my professional and social life was impacted by RLS symptoms, sadly the well-meaning physicians and surgeons who treated me did not seem to comprehend the implications of RLS. The hope I found at that first Foundation meeting did not seem to transfer to sufficient medical education for my treating professionals. And, unfortunately, my ability to link up with a support group was limited by distance and time.

Just recently I retired and felt this was the ideal time to put together a support group in the area where I live. By working with others, I hope the group will offer an environment where individual experiences can be shared, community awareness of RLS improved, and the medical community will become involved. Our local medical community includes hospitals and numerous outpatient facilities employing physicians, surgeons, physician assistants, nurses, intensive care and other support personnel.

Taking actions that help RLS sufferers support each other, and spreading the knowledge of RLS to the medical community and the general public, is something I felt necessary when I attended that Foundation meeting in 1992. Now I feel I have the time to contribute to that goal.

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

4-Star Rating from Charity Navigator

Wednesday, December 27, 2017

RLS Foundation Earns Coveted 4-Star Rating from Charity Navigator

Austin, Texas, Dec. 22, 2017 – The RLS Foundation’s strong financial health and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America’s largest independent charity evaluator.

Since 2002, using objective analysis, Charity Navigator has awarded only the most fiscally responsible organizations a 4-star rating. In 2011, Charity Navigator added 17 metrics, focused on governance and ethical practices, as well as measures of openness, to its ratings methodology. These “Accountability & Transparency” metrics, which account for 50 percent of a charity’s overall rating, reveal which charities operate in accordance with industry best practices, and whether these organizations are open with their donors and stakeholders. In 2016, Charity Navigator enhanced its methodology to further substantiate the financial health of 4-star charities.

“The RLS Foundation’s exceptional 4-star rating sets it apart from its peers and demonstrates its trustworthiness to the public,” said Michael Thatcher, president and CEO of Charity Navigator. “Only a quarter of charities rated by Charity Navigator receive the distinction of our 4-star rating. This adds the RLS Foundation to a preeminent group of charities working to overcome our world’s most pressing challenges. Based on its 4-star rating, people can trust that their donations are going to a financially responsible and ethical charity when they decide to support the RLS Foundation.”

“We’re thrilled to achieve the 4-star rating from Charity Navigator,” said RLS Foundation Executive Director Karla Dzienkowski, RN, BSN. “This rating demonstrates our good governance and financial accountability, and assures our supporters that we are making wise use of their investment. Seventy six percent of the money donated to the RLS Foundation is used to fund research towards better treatments and a cure, to advocate for RLS victims, and to raise awareness about this very serious medical condition.”

The RLS Foundation’s rating and other information about charitable giving are available free of charge on www.charitynavigator.org. More detailed information is available to Charity Navigator site visitors who become registered users, another free service.

About the RLS Foundation

The RLS Foundation is dedicated to improving the lives of men, women and children who live with restless legs syndrome (RLS, also known as Willis-Ekbom disease). Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and through research, find a cure for RLS. The Foundation serves healthcare providers, researchers, nearly 5,000 members and an estimated 7 million individuals in the United States who have RLS. The RLS Foundation has awarded over $1.6 million to fund medical research on RLS causes and treatments. For more information or to become a member, visit www.rls.org.

About Charity Navigator

Charity Navigator is the largest charity evaluator in America, and its website attracts more visitors than all other charity rating groups combined. The organization helps guide intelligent giving by evaluating the Financial Health and Accountability & Transparency of more than 8,000 charities. Charity Navigator accepts no advertising or donations from the organizations it evaluates, ensuring unbiased evaluations; nor does it charge the public for this trusted data. As a result, Charity Navigator, a 501(c)(3) public charity itself, depends on support from individuals, corporations and foundations that believe it provides a much-needed service to America's charitable givers.

How to "Pay It Forward" This Holiday Season

Thursday, December 14, 2017

Spotlight: Donna Rivers

Wednesday, October 25, 2017

Guest Blogger: Susan Schlichting

Friday, September 08, 2017

My SIBO Story

Do certain foods seem to trigger your RLS? Or, when you experience bloating or abdominal fullness, do these conditions seem to exacerbate your RLS? If so, read on.

I finally made the connection between my restless legs and many years of (undiagnosed) Irritable Bowel Syndrome (IBS). I heard from Caroline Chamales, the RLS Foundation support group leader in San Diego, that Dr. Leonard Weinstock, a gastroenterologist at Washington University in St. Louis, was collaborating with Dr. Arthur Walters, a well-known RLS expert, Professor of Neurology at Vanderbilt and an active member of the Foundation's Scientific and Medical Advisory Board, to study the relationship between a gut infection that causes IBS-like symptoms and RLS. I jumped at the chance to learn more.

I went to my local gastroenterologist and insisted that I get tested for a gastrointestinal infection, called SIBO, which stands for Small Intestine Bacterial Overgrowth. To get a better footing on the subject, my gastroenterologist (GI doctor) suggested that I read the book, A New IBS Solution by Dr Mark Pimentel, Director of the GI Motility Program at Cedars Sinai Hospital in Los Angeles. Dr. Pimentel has devoted his career to studying IBS and is responsible for developing a breath test that diagnoses bacterial overgrowth in the small intestine that causes distress.

In St. Louis, Dr. Weinstock’s practice actually includes an RLS Clinic where he treats patients with the two diagnoses. Because Dr. Weinstock’s clinic is in Missouri and I live in the vicinity of Cedars Sinai, I chose to get treatment locally.

I took the breath test, was diagnosed with SIBO and treated with an antibiotic used to treat IBS, travelers’ diarrhea and hepatic encephalopathy called Rifaximen. And, in what seemed like a miracle, into the second week after taking the full course of the antibiotic, my RLS improved significantly. My nighttime RLS disappeared!

However, a potential complication is that people who have been diagnosed with SIBO frequently relapse. After the bacteria is killed, there is a healing period that is required. Because this is still considered a gray area of medicine, there is no standard regimen that has been embraced yet by mainstream medical providers.

I wish that I could close with a happy ending. I too have suffered a relapse filled with sleepless nights, difficulty swallowing, reflux, food intolerances and leg pain which at times triggers a full-blown attack of RLS. The journey has been no walk in the park, but I do harbor the hope that there is a rainbow somewhere in my not-so-distant future.

During the six years that I have suffered from both SIBO and nightly RLS, I had been diagnosed with osteopenia and nutritional deficiencies including Vitamin B12, and my ferritin was on the borderline reading of 50. Some have postulated that the overgrowth of bacteria in the small intestine causes malabsorption of nutrients. The bacteria were literally eating my lunch!

One takeaway from my experience is that the Low FODMAP diet, developed by the Monash University in Australia, helped with my symptoms as well as with my RLS. FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. In simpler terms, FODMAPs are carbohydrates (sugars) that are found in foods. However, not all carbohydrates are considered FODMAPs. Once diagnosed with IBS by your gastroenterologist, you can discuss if the FODMAP diet is an appropriate nutritional therapy for management of your IBS. Current research suggests the FODMAP diet reduces symptoms of IBS. A majority of individuals with IBS also have SIBO, a major contributing factor to the development of IBS.

If you have been diagnosed with IBS and think that you may have SIBO, seek the professional opinion of a gastroenterologist for further evaluation.

Susan is the RLS Foundation's support group leader in Southern California.

Volunteer Appreciation Week 2017

Friday, April 28, 2017

Thank You to All of Our Volunteers!

On behalf of the RLS Foundation boards and staff, we want to thank each of our volunteers for all the contributions they have made in supporting the community of RLS sufferers. The compassion and hope they provide has resulted in positive feedback, and we are incredibly fortunate to provide this volunteer program to those who are looking for help, hope, and sometimes just an ear.

The RLS Foundation currently has over 70 support groups and a network of remote support contacts throughout the United States and Canada, not to mention a group of dedicated volunteer discussion board moderators. All of these individuals contribute to achieving our goal of spreading RLS awareness and providing support to those suffering with this disease.

"Spreading the word is crucial to increasing the awareness of this often misunderstood yet complex disease suffered by so many," Southern California RLS Support Group Leader Susan Schlichting said. "This awareness will aid in furthering the Foundation's goal of finding a cure. Volunteering is a way for me to take personal responsibility for my health while facilitating others to do the same."

We are always looking to expand our volunteer network, and to provide integral support and counsel to those in underserved areas. If you are interested in applying to become a support group leader, here are the steps:

Learn more about the role by viewing the support group leader description.
Submit an application!
The Foundation will send references a brief questionnaire.
Once reference questionnaires are returned, a volunteer manual is provided and a phone interview is scheduled.
You then plan your first meeting with the support from the Foundation!

Ready to step up and provide support to RLS sufferers in your community?

Please submit your completed volunteer application through the volunteer page on our website, by email, or send to:

Restless Legs Syndrome Foundation

Attn: Chiara Corey

3006 Bee Caves Road, Suite D206

Austin, Texas

78746

Click here to find a support group near you. Stay up to date with upcoming meetings in the "Find Support" section of our website, or on our Facebook page.

Guest Blogger: Mary Lou Mennona

Wednesday, April 26, 2017

Practice What You Preach

Submitted By: Mary Lou Mennona, support group leader for Kingsport, Tennessee, and contact for Treasurecoast, Florida

Every time someone calls me regarding RLS, one of the things I always tell them that I have learned from the RLS Foundation research is: Stay away from alcohol, caffeine and sugar after 6 pm and especially before bed. Having these things will make RLS worse.*

So, [we] went on a vacation cruise recently and I got caught up in the fun of the evening. At dinner I shared a glass of wine with others – the one and only I had – I usually don’t drink at all, and then had a luscious, sweet dessert because everything on the ship menu looked so good!

I completely forgot to practice what I preached to others about these things being a “no-no” to RLS victims, and sure enough, I had a miserable night even WITH taking my meds... In fact, it ran right into the next day as we tried to watch a matinee movie on the ship. I usually don’t need my meds during the day, but I was so jumpy and felt like a wound-up spring ready to explode, that I knew I bothered the people near me, so I left the theater and walked and took AN EXTRA med.

Not only that, but I felt horrible all over. Even my hair was tingling and I just didn’t want to do anything! Depression can set in. My nerves throughout my body were vibrating all over and would not rest. Be careful! What the Foundation teaches us through all the research is so true!

I couldn’t believe that I had ignored my own advice! I never have this kind of trouble because I always keep a close eye on what I eat, my exercises, etc.

For those with RLS, don’t ever forget the debilitating effects of sugar, alcohol and/or caffeine, and learn from the information in [the Foundation's] wonderful quarterly newsletter, NightWalkers!

* For more information on what may exacerbate RLS symptoms, read our RLS Triggers publication in the Member Portal of our website.

Had a similar experience? Share it with us on our Facebook page or on the Foundation's discussion board. You are not alone!

Our New Support Group Leaders

Monday, January 02, 2017

Celebrating our RLS Foundation Family

Tuesday, September 20, 2016

Zibby and Faith

For the last two years, the Foundation has had the privilege of working with two exceptional employees - Faith and Zibby! Read more about these members of our RLS Foundation family below.

Meet Zibby

Every organization has one individual with a vast set of experiences that makes them a “jack of all trades.” At the Foundation, Zibby Crawford, the Foundation’s Marketing and Communications Coordinator is this individual. Zibby covers many areas of responsibility, from planning and coordinating the RLS Foundation's presence at meetings and conferences to compiling our eFriends mailing and managing our technological upgrades … It’s a good thing she is the ultimate multi-tasker! Her thirty years of marketing experience has enhanced our outreach.

Before the Foundation, Zibby worked in the high tech industry but fell in love with the nonprofit sector when she served as Board President for the National Charity League, Capital of Texas Chapter. Zibby's warm, bubbly and outgoing personality make her a joy to work with. She is always ready to teach a new skill or lend a hand. She has raised four kids, is waiting patiently on grandkids, but until then has a chihuahua rescue dog, Daisy.

Zibby’s motto is “Spread joy!” and she carries that spirit with her each and every day.

Meet Faith

When calls come in to the Foundation with questions, concerns or requests, they are answered with a positive, friendly voice ready to help. Faith Duncan is usually the first to greet callers, ready to help with any and all issues. Many times it's as simple as helping members log on to the Members Only section of our website. But, Faith has fielded any number of calls ranging from despair about this often debilitating disease, to requests from volunteers wanting to share knowledge with others in their community.

Faith put aside a career as an engineer to be a stay at home mom for many years. She became an active member of a non-profit where she served on the Board of Directors at the National Charity League, Inc., Capital of Texas Chapter, a mother-daughter service organization. Now, with her youngest in college, Faith has taken on her position as Member Services Coordinator and tackled some difficult software and processes with her very analytical, engineering approach and problem-solving abilities!

We are very fortunate to have her very sharp mind as well as her compassionate spirit - Faith has made such a difference here at the Foundation. We wish her a Happy Birthday this month, and hope you have the opportunity to experience her uplifting, positive attitude in the future ... you are not alone!

Wednesday, August 31, 2016