September 5, 2025

The Night Sky Surrounds Me: My Journey with RLS

By Margaret O'Donnell, RLS Foundation Member

Margaret O’Donnell is a Seattle playwright, poet and retired immigration attorney active in pro bono asylum cases. She writes about the migration of people, the effects of climate change on all of Earth’s creatures, the intricacies of human relationships, and the workings of US law and government. You can find more of her work at www.odonnellplaywright.com.

I watch the night sky. On clear nights, when Orion moves slowly from east to west, his archer belt pointing directly to Sirius, I feel myself moving with the Earth’s turning as I keep company with the moon, new to crescent to half to gibbous to full, cycling, ever cycling. Once in my nighttime wanderings, I saw an atmospheric river rushing directly over my head, exactly as if I were standing in a transparent bubble on a river bottom, looking upwards.

The night sky and keeping up with the weekly New Yorker were the best and the only good things about the four years I spent nightwalking during the COVID-19 pandemic. No matter how exhausted I was from lack of sleep, I had to keep moving.

Gabapentin, my RLS medication of 18 years, stopped working suddenly in December 2019. For two years, I saw three well-meaning but underinformed sleep physicians, who tried and failed to treat my refractory RLS. These doctors advertised themselves as experts in RLS; I believe they sincerely thought they were. They prescribed medications that had no effect, medications that worked for a few months and then augmented my symptoms beyond bearing, and medications that made me so sick I thought I was overdosing. My husband called 911 then – the result of one misguided prescription.

It's difficult to describe the despair that RLS evoked in me, because the disease robs me of both reason and creativity, of both hope and perspective. I was ashamed to tell even my close friends and family about my agony. When I tried, I saw the incomprehension in their eyes. After all, everyone knew someone with mild RLS symptoms. They could sleep. Why was it so hard on me? I didn’t know either.

I lived with this despair for the last two years of my RLS excursion to hell before I found the RLS Foundation in late 2023. I had no RLS medication during those terrible two years. I thought I was condemned, that nothing could help me. I was in a black hole, which swallowed up my ability to connect with my friends and family, scrubbed beauty out of every day, made my nights a torture chamber, and destroyed my ability to write.

I am a writer. Writing is my passion and my joy. When I retired in 2019 from the practice of law, I was free at last to devote myself full time to writing the plays and poetry that give my life expression and fully engage every part of my brain and body. Writing connects me with the world around me – the trees, the air, the soil, the Earth’s creatures. My life lost meaning a few months after I retired, in the years before I found the RLS Foundation. Does that sound overly dramatic? I assure you; it is not. The disease consumed me, body and mind and soul. My joy and my creativity died.

Scrolling for any information that could help, one day in August 2023, I found the RLS Foundation website. I called. Staffer Adrianna Colucci immediately sent me a packet of information – brochures, back issues of NightWalkers magazine, reports of RLS studies, and a list of RLS Quality Care Centers. The nearest expert was a thousand miles away, in southern California. I called Dr. Mark Buchfuhrer’s office at once and made an appointment to see him – a pulmonologist and sleep specialist with extensive RLS management experience and a leading RLS researcher – in September.

Then I had second thoughts. I couldn't bear the thought of sitting in a car on the way to an airport, getting through a security line, sitting for three hours on the plane, and sitting in a car to get to his office. I couldn’t sit still for more than an hour. And what if the visit was useless? So, I canceled the appointment. I made another appointment for November. I canceled that appointment, too. Finally, I made an appointment and kept it in March 2024.

March 2024 saw the worst flooding in a century in Los Angeles. The Los Angeles River raged far over its banks, fed by torrents of rain and whipped by wind. On the train platform at the airport, people dressed for spring wrapped their arms around themselves and cowered. At the hotel, there was no central heat; my husband and I huddled together over a space heater throughout our stay. We walked the half-mile to the doctor’s office the next morning along a street as wide and busy as a highway, as I castigated myself for coming to southern California and dragging my husband along.

When Dr. Buchfuhrer walked into the examination room, I was stiff with armor against inevitable disappointment. Why should this be different from my past experiences? Slowly, as he asked me about my long history with the disease, I saw that this time, this doctor would be different. It was the way he spent at least half an hour on my history, asking questions, that gave me new insight into my own journey. He wasn’t fidgety or bored. He seemed genuinely interested in me as a patient. It was when he said, “I know I can help you,” that I began to let my armor go. No other doctor had ever said that.

Dr. Buchfuhrer worked closely with me over the course of the year, tweaking the medication that has given me sleep again. Within three months of my first visit to his office, I slept three or four hours at a time. Within six months, I was sleeping through the night on most nights, with few daytime RLS episodes. In July 2024, Dr. Buchfuhrer enrolled me in an RLS research study for the new Nidra leg bands, a nonpharmacological device that uses tonic motor activation to alleviate RLS symptoms quickly, before they take over the body and mind. I didn’t need to use the bands until the beginning of this year, when, inexplicably, my symptoms began to recur every two to three hours during the night and sometimes during the day.

I didn’t want to increase the dosage of my medications, since I’m already somewhat drowsy and unsteady in the evenings under their influence. Now I use the bands most nights once and sometimes twice or three times a night. But instead of staying up for an hour, walking until the symptoms subside and I can sleep, I now get up, turn on the bands, and get back in bed within 10 minutes.

It's been expensive, tiring and time-consuming to travel to California for doctor visits and the Nidra band fitting, but what is it worth to have your life back? Dr. Buchfuhrer listens carefully to me and takes what I say seriously. I am the best source of information about my experience of the disease, and he honors that. He carefully calibrates my medication and dosing regimen and isn’t put out when it doesn’t work as well as he wants it to. I no longer blame myself for the disease.

RLS is a chronic condition. I know I’m not going to be cured, but now I am sleeping. I have my brain back. My doctor’s attention to and belief in me, the carefully calibrated medication, and the Nidra bands brought me back to life. I’m writing. I travel again. I connect with friends and family. I’m walking in the woods. I no longer blame myself. I am at peace.

March 21, 2025

Sharing Poems from Our Community

In honor of World Poetry Day on March 21, we share poems submitted by RLS community members that raise awareness about the impact of RLS. These heartfelt works provide insight, strength, and hope for all who live with RLS.

Stories like this can be found in our quarterly magazine, NightWalkers. If you would like to receive a subscription to our magazine, join the RLS Foundation as a member today! Click here to learn more.

June 25, 2020

How One Person's Journey Touches Many

Inspired by a desire for the world to know that RLS is a real diagnosis, in 2018 Lucy Hoekstra decided to walk to raise awareness for RLS. “Walk” is a simple word for her incredible journey. Hoekstra first attempted to walk from her home in the Netherlands to her sister’s home in Denmark but did not succeed. Nevertheless, she persisted with help from the European Alliance for Restless Legs Syndrome, and the European Federation of Neurological Associations (EFNA). On August 28, 2019, Hoekstra started a 356-mile journey from Hurdegaryp, Netherlands, to Krusbjerg, Denmark. Over 26 days, she walked the entire way, carrying her necessities and stopping for rest. Along the route she met supporters, blogged about her experience, and educated strangers about RLS. Hoekstra completed her trek on September 23, International RLS Awareness Day, inspiring people whose lives are affected by RLS, and others.

Joke Jaarsma, who is the vice chair of the Restless Legs Foundation in the Netherlands, and the president of EFNA, says, “In 20 years of patient advocacy, I have not seen this much press attention in just a couple of weeks. People like Lucy can make the difference!”

The RLS Foundation would like to thank Hoekstra for her work to raise awareness about RLS. Amber Arellano, RLS Foundation membership coordinator, recently interviewed Hoekstra about her incredible journey.

What inspired you to promote RLS, and why did you choose to walk?

I have had RLS symptoms since I was a teenager but only received my diagnosis about three years ago. It took so long because my former doctor didn’t recognize it. After I got my diagnosis, I noticed that a lot of people don’t know anything about RLS. This was frustrating at times, and I wanted the world to know that it is a real thing.

Last November, I went to Brussels for a workshop given by EFNA. This was for young neurological patients to learn how to advocate in a digital world of social media. After the great workshop, I decided to walk to raise awareness for RLS.

How did you prepare mentally, physically and emotionally for your 356-mile journey?

I started training in January and walked almost every weekend – sometimes twice. During these training walks I could test a lot of things, like shoes, my bag and clothes; and what, when and how much I would need to eat. I learned a little bit more every weekend, and in the end, it was perfect for my trip.

Mentally and emotionally I didn’t really prepare. I talked about it with family and friends but tried not to make a big thing of it. When I had my walking idea, I went to Joke Jaarsma, who is vice president of the Dutch RLS patient organization. She has connections with the German and European patient organizations. Together they organized the whole trip – press releases, website, hotels, etc., thanks also to an EFNA award (#BrainLifeGoals) that we had won. This took a lot of pressure off of me, and I’m really thankful for all the work they did.

How did it make you feel when people joined you as you walked?

It was great to have people with me to support me. Most of them were complete strangers, but when you walk and talk, you get to know people. During my trip, my pace slowed down a little, so at times like that it was good to have people with me, to get me through some hard moments.

What were some unexpected obstacles you experienced on your journey?

The first week I had some blisters. That was painful, but luckily after a week it went better. I also almost got lost a few times, but I was always able to find my way. Luckily, I have Google Maps on my phone, and sometimes people would show me the way. So I had a few obstacles but overcame them all.

What was the most surprising thing that happened to you while you were walking?

There were a lot of funny things and surprises. A few times people were offering me food and drinks – that was really nice. One time I was eating lunch in a cafe, and I talked to the people next to me about my trip and RLS. When I ordered, they said they would pay for me; that was a nice surprise!

When I was halfway, I needed to cross a river on a ferry. A lot of truckers and people on holiday also use this ferry. I had a flag on my bag, so people recognized me and waved and cheered. It had been a hard day that day, but that cheer squad made it so much better.

Another great thing was that a radio station followed me all the way and regularly interviewed me “live” on their program. On Christmas Day, they featured my walk when looking back on memorable events in 2019.

What advice do you have for others about raising awareness?

Don’t be afraid to tell your story. When I had my diagnosis of RLS about three years ago, I didn’t tell a lot of people. It was because on the one hand, people can react in an unsupportive way; on the other hand, I didn’t want people to know that something is wrong with me.

I now know that it is necessary to tell people about RLS so that more people, including doctors, know more about RLS and can react in a positive way. My legs may be weird sometimes, but that doesn’t mean that I am. Telling my story and raising awareness brought me a lot of good things, and I met a lot of nice people.

Do you plan to advocate for RLS again? If so, how?

My plan is to keep advocating for RLS, but at the moment I don’t know what form this will take. I think there is still a lot of work to do to raise awareness and do research about RLS. Luckily, there are some great people and organizations that work hard as advocates for RLS.

September 10, 2019

Eight Ways to Raise RLS Awareness During September

RLS Awareness Day is just around the corner, Monday September 23! Here are some ways YOU can make sure others are #RLSAware this year!

1. Refer your doctor to www.rls.org/PhysicianEd to learn more about RLS.
2. Like, share and comment on RLS Foundation messages that inspire you on Facebook, Instagram, YouTube, and Twitter.
3. Support others in your community by starting an RLS Support Group in your area.

4. Add this year’s Awareness Day image as your profile picture on Facebook.
5. Watch a webinar with a friend or family member to better understand RLS.
6. Add this RLS AWARE poster to your workplace, community center or library.
7. Remember to “pay it forward” with a gift membership by going to www.rls.org/pay-it-forward.
8. Enjoy 15% off RLS merch during all of September at www.rls.org/shop.

Whatever you do this year to spread awareness, be sure to share it with us by emailing info@rls.org. You can also tag us in your social media posts by using the hashtag #RLSAware when posting your photos!

To find the downloadable version of this poster, click here: https://www.rls.org/poster

May 22, 2019

2019 RLS Advocacy Day on Capitol Hill

By Kris Schanilec

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

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

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

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

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

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

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

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

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

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

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

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

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

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

October 12, 2018

Thank You for all your support!

RLS Awareness Day on Sept. 23, 2018 was a great success! At the Foundation, all of our social media channels were flooded with the hashtag #MakeADifference4RLS. Photos poured in from across the country of people holding the latest NightWalkers magazine cover with its eye-catching RLS awareness graphic. We invite you to view these images in the Awareness Day 2018 photo album on the Foundation’s Facebook page. Here is a staff favorite!

Many members of the RLS community acted on our “10 Ways to Raise Awareness” list, while some created ways of their own to spread RLS awareness. The Foundation emailed an Awareness Day media packet to support group leaders that included a press release, media talking points, public service announcement and RLS fact sheet. One of our long-time volunteer support group leaders, Mary Lou Mennona, emailed our press release to a number of Florida newspapers to spread the word about RLS. The chair of our Board of Directors, Lew Phelps, shared RLS information and resources through a neighborhood social networking channel. The child of a Foundation member wrote a report about RLS for school and shared a photo of himself holding NightWalkers magazine on Facebook. These are just a few of the many ways our community banded together to educate others about how RLS is a serious but treatable condition. Thank you to all who participated!

Awareness and education are so important. At least 10 million people in the US have RLS, yet only about 5,000 have joined the RLS Foundation as members. It is our hope that by spreading awareness during September – and throughout the year – we can reach people who don’t yet know about the Foundation, and offer them the information and support they need.

Although Awareness Day has passed, each of us can do our part and continue to spread the word: You are not alone! Help is available for those with even the most severe cases of RLS, which includes those experiencing augmentation. And the RLS Foundation offers hope, through programs to raise awareness, improve treatments, and fund research to find a cure. Learn more at www.rls.org.

September 5, 2018

Ten Ways to Raise RLS Awareness During September

RLS is still not widely understood and awareness remains one of our primary goals at the RLS Foundation. With your help, we hope to spread awareness about what RLS is, and to let the public know that information and support are available through the RLS Foundation and our volunteer support network.

This year we are launching our #MakeADifference4RLS challenge. On the cover of the Summer 2018 edition of NightWalkers is our Awareness Day image and we encourage you to take part in the challenge. To participate, take a picture of you and the cover of NightWalkers doing an activity to spread awareness and email it to clara@rls.org. If you do so before September 23, you will receive a FREE RLS awareness magnet!

Here are some suggestions to get you started, we look forward to hearing what YOU do to get the word out!

1. Take a selfie or make a short video clip with your own RLS awareness message. Post it on Facebook, Twitter, YouTube or Instagram – and ask your kids, grandkids and friends to do the same! Use the hashtags #MakeADifference4RLS.
2. Write a letter to the editor of your local newspaper or TV station about your experience with RLS. You can also be a guest blogger for the RLS Foundation – email info@rls.org to learn more.
3. Share our YouTube videoswith your local newspaper, radio and TV media.
4. Show your support! Whether an RLS Foundation T-shirt, an RLS magnet on your car, or a hand- written “RLS Awareness Day” sign, you can catch eyes and start conversations to help spread the word. For more ideas, visit www.rls.org/shop to access the RLS Foundation’s online store - Everything is 25% off during September!
5. Share copies of Nightwalkers with your local library, doctor’s office, assisted living facility, church or other community gathering place.
6. Ask a friend or family member to join you in watching a free RLS Foundation webinar – visit the Member Portal on www.rls.org to access our webinar library.
7. Make the RLS Awareness Day image your Facebook profile picture.
8. Give the gift of an RLS Foundation membership to family, friends and your physician or “pay it forward” by donating a scholarship membership to someone needing assistance with membership, visit www.rls.org/pay-it-forward or call 512-366-9109.
9. Share what you are doing on Awareness Day with a post to Facebook tagged #MakeADifference4RLS.
10. Share information about our upcoming RLS physician webinar series beginning in October 2018 with your healthcare providers – refer them to www.rls.org/PhysicianEd.

Thank you to everyone who has participated in RLS Awareness Day activities so far - let's get creative and let's get going!

Awareness and Education

The RLS Foundation Surpasses Goals for the Year

Nearly 25 years ago, the Foundation began as a tiny group of dedicated individuals meeting around a kitchen table in Raleigh, North Carolina. We grew to become a bustling organization located in Austin, Texas, with an expansive network of nearly 5,000 dedicated members.

Since its inception, the Foundation has provided over $1.6 million in support of RLS research, and we are still the leading organization for science-based education and patient services for those suffering from RLS.

Just consider what we have accomplished over the past 12 months alone:

1. Certified five additional RLS Quality Care Centers

2. Reinvigorated our research grant program by committing to award up to eight new pilot grants totaling $200,000

3. Developed a teen guide and children’s booklet to help our youth manage the challenges of RLS

4. Created a multidisciplinary Scientific and Medical Advisory Board

5. Launched research into the economic impact of RLS and its treatment

6. Rolled out a far-reaching Year of Augmentation awareness and education program – distributing and promoting an augmentation white paper research summary to nearly 50,000 healthcare providers

The Foundation also created a support group leader "RLS and Augmentation" tool kit, and released our RLS and Augmentation video, which has already been watched by thousands.



The Foundation has also been active in educating the medical community this year by attending SLEEP, a joint meeting of the American Academy of Sleep Medicine and the Sleep Research Society, in Denver, Colorado. We were also present in November at the annual conference for the Society of Neuroscience in San Diego. Both events attract thousands of researchers and healthcare providers that are eager to learn more about RLS and other sleep disorders.


We are so proud of all we have accomplished this year on behalf of the RLS community, but we could not have done any of it without the generous donations given by both members and nonmembers alike. Together, we have hit incredible milestones - big achievements executed by a small staff and a network of dedicated volunteers.

To everyone who has helped us get to where we are, we thank you!

Promoting Awareness – One Gift Membership at a Time

By Barbara Faraone

When long-time RLS Foundation member Barbara Faraone sees the need for education, she takes action! In the past several years, Barbara has purchased over 25 RLS Foundation gift memberships for physicians, nurses, pharmacists, hospital administrators and others to promote education and awareness about RLS. At the RLS Foundation, we are extremely grateful to individuals like Barbara who use whatever creative means they have to raise awareness for RLS. Barbara, thank you for making a difference – you are truly an RLS hero!

I’m a 79-year-old grandmother who has suffered with restless legs since at least 18 years old, although I suffered from leg pains (or as the doctors used to say, “growing pains”) from a very young age. I remember going to high school and being so glad that classes were only 45 minutes long. I would always try to sit in the back of the room, as I was always moving about. I was often asked why I never sat still. I never really had an answer for people, but thought it was just me.

Even going to college, my place was always in the back of the room; it was just plain uncomfortable to sit, and I preferred to stand. Thus, standing in the back of the room was enjoyable for me.

I became a teacher of third grade, and that suited me just fine. I never sat at my desk. I was always about the room with my children, working on projects or just tutoring one-to-one, thus walking a lot. With age came marriage and two children. This, too, was always an active time for me. It was during this time that I began to notice that sleeping with covers over my legs was not good for me. The pressure of blankets just made my kicking in bed worse. I was never one to cuddle in bed, as the legs would not stay still. I did not know what to do to stop this kicking, and it was not welcome to my husband, as you can imagine.

As years followed, I found myself being awake for many nights and often going from bed to couch to floor. I tried sleeping with my back on the floor and legs up on the wall or the back of the sofa. I tried hot baths, warm milk, Bengay, soap under the mattress, and any other odd suggested thing to try, of which there were many. I must say that a scotch and water would often calm them during the evening, but it did not last through the night.

I soon learned to exist on three to four hours of sleep and sometimes an afternoon nap. I just figured it was something I had to live with. I might add that I had all the muscle and nerve tests done over a period of years, but nothing seemed to show up wrong.

Doctors were of no help until my general practitioner went to a lecture about RLS at the local hospital. When he came back from this, we started in on the approved medicines available at the time. That was some 20 years ago. Since then, I have tried them all in many combinations. They would seem to work, but within a short time I was right back to my old self of discomfort most of the night. When the discomfort turned to pain, I began the treatment of painkillers. Yes, they worked, but got to be an all-day thing. And oh my, what it did to my system and mind. This was awful. I had to come off them.

I went to an RLS meeting in San Antonio and met the folks there. With their help, I made contact with a specialist at an institution that is now a certified RLS Quality Care Center. I call him my “savior,” as with his help and methadone, I do sleep, and my life is somewhat normal – or what I think of as normal. My legs are not really still during the day, but my friends have gotten used to me always moving. Thank goodness for friends.

My legs hurt most of the day, but during the night they are quiet enough that wherever I fall asleep, I sleep – whether it be in bed or on the couch.

Now, I have asked for years, what can I do for others who have RLS? Yes, I can contribute to the RLS Foundation, and it does help, especially in research. But I feel that I need to do something more to help educate medical providers.

So … I have been buying RLS Foundation memberships for all the doctors I meet in the hopes they will read NightWalkers and maybe learn something. Maybe they will believe what I say to them.

For example, I found a local hospital was advertising that they treated RLS. I went to see the doctor, only to find out he knew nothing of RLS. In fact, he called my druggist, as he thought I was addicted and needed help, and had no idea the uses for methadone. My druggist, who has a subscription to NightWalkers, gave him a 15-minute lecture as to the uses of methadone. I had the RLS Foundation send the doctor and hospital administrator a gift membership with information about RLS and a copy of NightWalkers.

I think my count of current gift memberships is up to something like 12 doctors and hospital administrators, and then I add friends or nurses or whomever needs an education about RLS. Has it made a difference? I don’t know, but I do know they are getting the correct information, and this can only help in the future.

An excerpt from the Summer 2016 edition of NightWalkers, the Foundation's quarterly magazine. Become a member today to receive this and other member benefits!

You Are Not Alone

An Online Community Available 24/7

With the stress that the holidays can bring, it's a comfort to know that you are not alone in your struggles with RLS. The RLS Foundation's discussion board provides an avenue for individuals to post anonymously about their symptoms, treatments and other coping strategies. It is a supportive, hopeful environment for those who are looking to share their RLS stories with others who know exactly what they're going through.

The discussion board is run by five Foundation volunteers who serve as moderators. Topic areas currently include:

Physical Treatments
Non-drug therapies (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc.

Non-prescription Medicines, Supplements, Diet
Substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances.

Prescription Medications
Prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Topic of the Year: Augmentation
The topic of the year 2015 for the RLS Foundation is Augmentation. Use this forum to discuss any issues associated with Augmentation

Special Populations: Pediatric, Pregnancy, Secondary, etc.
RLS occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. RLS in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.

Help for Relationships
Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?

General Topics
For everything and anything else not covered in the other RLS/WED sections.

Everything Else... Just No RLS!
It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.

To get started, learn more about the simple, free registration here. Questions or concerns? Contact the discussion board moderators at rlsfmods@rlsgroups.org.

Remember posts and information on the discussion board are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.

Helpful Links for RLS Sufferers who Want to Learn More

Below is a presentation from the Foundation's 2016 educational webinar series, "Coping with RLS and What Sleep Deprivation Does to You." This webinar is presented by Dr. Jeffery Durmer, CMO of FusionHealth and member of the RLS Foundation Scientific and Medical Advisory Board. Visit www.rls.org for more information about our webinar series and other Foundation programs!



Additionally, this Buzzfeed article has some great infographics about tips for getting a good night's sleep!

Important Tips to Help with Your Sleep Cycle

For RLS sufferers, it is oftentimes nearly impossible to fall and stay asleep. Many have reported to the Foundation that they get as little as 2-4 hours of sleep per night. When the recommended amount of sleep is 7-9 hours each night, such little sleep can have debilitating effects on waking life.

However, it is recommended for those with RLS to get at least 30 minutes of exercise a day, as regular exercise can significantly improve and stabilize the sleep cycle. Studies from the National Sleep Foundation have continuously shown us that:

1. Exercise reduces stress and tires us out, allowing us to have a longer and better quality sleep
2. Sleep disorders like insomnia, sleep apnea, restless legs syndrome, and narcolepsy cost millions in medical costs and disrupt work and social lives
3. Those that exercise report getting a better quality of sleep than those who do not, and are less likely to have sleep issues

Exercise in the early hours of the morning or afternoon can have a positive effect on the natural circadian rhythm, or "sleep-wake cycle." Exercise raises the body's temperature for roughly four to five hours before gradually falling, thus helping one feel sleepy in the evening around bedtime. However, it is important to note that especially for RLS sufferers, rigorous exercise before bed should be avoided, since it can stimulate the brain and prevent one from falling asleep.

Meditation, yoga or light stretching are great options for easing RLS symptoms before bed, as they can help settle both the mind and body. Additionally, the Foundation's Sleep Diary is a great resources to help find sleep cycle patterns and potential RLS triggers.

Other suggestions for getting a good night's sleep include avoiding technology before bed, sticking to a consistent schedule and cultivating a relaxing evening ritual for yourself. Remember to refrain from any activity that your doctor has specifically told you to avoid. Read more about healthy lifestyle habits for RLS sufferers on our website.

Check out the original article about sleep and exercise and its great infographics at CapeCod.com.

Both Conditions Have Serious Consequences on Sleep Cycles

Like restless legs syndrome, migraines can be horribly debilitating. According to the Mayo Clinic , "a migraine can cause severe throbbing pain or a pulsing sensation, usually on just one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound."

In fact, two-thirds of individuals that participated in the Migraine in America 2016 survey , reported that their symptoms lasted five days or more. That's more than five days of excruciating pain, sometimes enough to be disabling.

To make matters worse, one in six reported that they also experience restless legs syndrome during a migraine attack. These are two serious conditions that interfere with sleep, potentially resulting in a decreased quality of life.

In fact, 66 percent of survey respondents said that lack of sleep could bring on a migraine. The irony is that migraines make it nearly impossible to fall into a restful sleep, yet sleep is one of the best tactics at soothing a migraine.

Read more about migraines and their adverse affects on various aspects of life in Reader's Digest.

Three Individuals Harness Social Media to Have Their Voices Heard

For RLS Awareness Day 2016, we at the Foundation were floored by the tremendous force of advocacy shown by our RLS family, especially through social media. For one of our Ten Ways to Spread RLS Awareness , we encouraged everyone to take to social media, change their profile pictures to our Awareness Day image and to tag the Foundation. The following individuals went above and beyond the call of duty - cheers to our winners!

Erin (Twitter)

Erin took to Twitter to retweet nearly all of our Awareness Day messages and get the word out. Go Erin!

"RLS Awareness matters and means so much to me for educating others! I've had it since I was at least 9 years old, and thought it was just something weird with me until I'd heard my mom talk of her dad's restless legs syndrome when I was a teen... I was amazed to hear her describe partially what I'd thought I was alone in. There [are] too many things that too many dismiss to be 'all in one's head' and RLS should NOT be one of those!"

Renee (Facebook)

Renee was a true RLS awareness advocate - posting this message over a month before RLS Awareness Day 2016, and urging others to educate themselves about this little known yet devastating disease:

"For the next 6 weeks my Profile Photo will be set to bring awareness to Restless Legs Syndrome (RLS). Many of you may not know that I (and my mom) suffer greatly from this terrible disease. While most would consider this not a life threatening disease...I can tell you first hand that IT IS life altering.

"There are countless nights of not sleeping because my legs will not stop moving (even with medications), or have a creepy crawling feeling, they jerk to the point of knocking my husband out of bed or forcing me to get up and walk around the house in the middle of the night. During the day my legs are always moving, always wiggling, or always jumping...to the point of embarrassment at times. The medications available for RLS unfortunately come with side effects that are not pleasant...and I know them all too well.

"PLEASE join me in raising awareness for RLS by:

#1 Liking my profile photo (it will also enter me into a contest to win a prize)
#2 By please take the time to read about it and understand it.
#3 If someone you know has RLS...please pray for them, encourage them and support them.

#RLSAwarnessDay2016 #Cure4RLS #YouAreNotAlone"

RLS Advocacy Award: Gary (Facebook)

Gary used Facebook to reveal to his network that he had been struggling with RLS since 2011, something that he had been desperately trying to hide. This year for RLS Awareness Day, Gary found the bravery to overcome his insecurities and open up.

"RLS Awareness Day matters to me because it's important to put a face and life story to this condition, that is often dismissed as 'not real'. I was diagnosed while being a full-time graduate student, studying to become a higher education academic advisor; this lifestyle requires a lot of reading, sitting, and being still from the waist down! My husband is great with assisting me with RLS pains via deep tissue massage and adapting his life around me. I want to raise awareness by 'coming out' about this aspect of my life in hopes to inspire others to take steps with getting evaluated for this medical condition; to encourage the general public about this condition; and to encourage medical professionals to take RLS more seriously in their practice."

Insufficient Sleep Cited as Public Health Problem

According to the Centers for Disease Control and Prevention (CDC), more than one third of adults in the United States fail to get a sufficient amount of sleep on a regular basis. In fact, many of these people are actually suffering from sleep disorders.

A sleep disorder is defined by any change in the way you normally sleep. Some of the more common examples include insomnia, sleep apnea, narcolepsy and restless legs syndrome (RLS) .

Symptoms of a sleep disorder involve irritability upon awakening and problems concentrating, and can lead to an overall decreased quality of life. Specifically, restless legs syndrome can prevent falling and staying asleep, resulting in unrefreshed sleep cycles and serious daytime fatigue.

Read the full article from Oklahoma Magazine here .

Top 10 Ways to Celebrate RLS Awareness Day:

1. Change your Facebook picture to our ‘RLS Awareness Day’ image (see RLS Foundation Facebook page) and tag us! You will be entered to win an RLS T-shirt and goodie bag! Win a Bravelet with the MOST LIKES on your post. 
2. Write a letter to the editor about your experience with RLS and send it to your local newspaper, TV station, or send it to us to post on our blog.
3. Tell your RLS story in video, photo or write a poem using the hashtags #RLSAwarenessDay2016 on Facebook, Twitter, Instagram or YouTube.
4. Order an RLS Bravelet for you or someone you care for and support! A portion of each Bravelet sold in support of RLS is donated to the RLSF! 
5. Become a Support Group Leader! Visit the volunteer page on our website or email Chiara at chiara@RLS.org for more information.
6. Everybody knows somebody with RLS. Download our postcard and send to four of your friends telling them about RLS Awareness Day, September 23, 2016 … the day the RLS community stands together with hope for a cure!
7. Download the RLS Quick Guide and share it in your community. Send it in emails. Post it at schools, places of worship, grocery stores, libraries, community centers and other public billboards. Bring it with you to appointments and leave copies in doctor's waiting areas – GET THE WORD OUT … YOU ARE NOT ALONE!
8. Gift or be gifted an RLS Foundation membership!  Give the gift of membership to a friend or family member (a $35 value). Or ask that a membership, or donation, to the Foundation be gifted to you for a special occasion, like your birthday! Membership includes our quarterly magazine, NightWalkers and access to the 'Members Only' section of our NEW website, where you can download any publication, access archived editions of NightWalkers and educational webinar archives.
   
9. Kids and teens have RLS too. Ask your school or sports league to announce RLS Awareness Day in morning announcements or during half-time! Be sure to share the RLS Teen Guide or Children's Booklet with your school nurse.
10. Purchase an RLS Awareness Ribbon magnet for your bumper.

The Link Between Sleep Disorders and Cardiovascular Health

On Sept. 19, the American Heart Association released a scientific statement confirming that sleep disorders, like obstructive sleep apnea and insomnia, are associated with negative cardiovascular health.

The American Academy of Sleep Medicine and the Sleep Research Society recommend that adults get in at least seven hours of sleep every night. However, this is rarely the case. In fact, according to the National Heart, Lung and Blood Institute, roughly 50 - 70 million adults in the U.S. each year report insufficient sleep or suffer from a sleep disorder.

With these new findings in mind, it was suggested that the AHA focus on sleep behavior through a public health campaign concerning proper sleep habits, as well as educating clinicians on how to screen for sleep disorders. Additionally, it was recommended that the impact of other sleep disorders, like restless legs syndrome and periodic limb movement , be tested for their relation with cardiometabolic risk.

To read more about the AHA's statement, check out this article featured on Cardiovascular Business.

Meet Karla Dzienkowski, RN, BSN:

Executive Director

In January 2014, Karla accepted the position of executive director. In two and a half short years she has made a huge impact on this organization.

Karla first learned about RLS in her dual roles as a mother and registered nurse when her daughter, then 11 1/2 years old, began to experience symptoms that doctors could not explain. Karla crossed the country looking for answers before finally finding a knowledgeable doctor, and shortly after, the RLS Foundation.

Eager for answers, Karla joined the Foundation’s Board of Directors in 2004 and served through 2009. As a board member, she encouraged pediatric RLS research, along with programs to increase awareness and education of RLS in the medical and school communities. Karla believes that much work has yet to be done in disseminating information about RLS to the public and the medical community, and that much more research into its cause and treatment is needed. Karla drives the mission of the Foundation with her leadership, and she is passionate about promoting research for better treatments and a cure.

Karla explains “The RLS Foundation serves as a beacon of hope, help and support for individuals and their families who deal with the daily impact that RLS has on their life. I want to thank each of our members for supporting the Foundation because you gave me and my family a life-line when we desperately needed one. With the help of the Foundation we were able to find the care my daughter needed and get back to living life.”

Karla has vast experience working with non-profits, including active participation for many years in Girl Scouts, Austin Children's Museum and three years serving on the Board of Directors for National Charity League, Inc., with one year as board president of the Capital of Texas Chapter. Karla, her husband, John, and their two daughters have recently welcomed a new Alaskan Klee-Kai puppy named Arrow into the family.

Karla is truly the Foundation’s #1 cheerleader. She always responds to difficult inquiries that come to the Foundation with genuine empathy, support and deep knowledge of RLS, drawn from her roles both as a family member impacted by the disease and as a nurse with over 30 years of medical knowledge and experience.

We recently received this note to Karla from someone with whom she was corresponding: “I also thank you for the empathetic warmth of your email. As you know, people in my situation feel very stressed and suffer from social isolation. It means a lot to feel contact with someone who understands. I think your organization is very blessed to have someone like you working in your position. I hope they appreciate you!”

Do we appreciate Karla? … Beyond measure!