Restless Legs Syndrome Foundation Blog

RLS Discussion Board Moderator - Now Recruiting Volunteers!

Join the RLS Foundation volunteer network

The RLS Foundation is seeking volunteers to join our dedicated team of discussion board moderators! The RLS discussion board is a forum where individuals can post questions and discussion topics, connect with other individuals and provide virtual support: http://bb.rls.org/. If you enjoy online communication, offering encouraging and supportive messages to fellow community members and bringing awareness to RLS Foundation resources, this role might be a good fit for you! If you are interested in learning more about this volunteer position or the application process, please email elyse@rls.org.

Responsibilities of discussion board moderators:

• Function as part of a team of moderators with shared responsibilities (currently, we have a team of four discussion board moderators).
• Monitor and respond to new threads to maintain active engagement and ensure all new posts receive a welcoming and supportive reply.
• Provide thoughtful, empathetic and supportive responses without providing medical advice.
• Process new discussion board registrations.
• Handle emails from individuals who may require assistance creating an account, logging in or finding their username and password.
• Regularly monitor the email provided to you by the RLS Foundation. This email will be posted publicly in NightWalkers and on the website.
• Respect and maintain the confidentiality of all users by keeping any personal information shared strictly within the forum.
• Understand and uphold Foundation policies on acceptable forum participants and appropriate content.
• Always remind participants that it is best to consult a qualified medical provider before making any changes to their RLS treatment plan.
• Promote RLS Foundation membership, resources and events.

Relevant Skills:

• Strong written communication skills. Use concise and supportive language.
• A deep understanding of RLS, its impact and challenges faced by those living with RLS.
• Familiarity with RLS Foundation resources and membership.
• Experience with technology, troubleshooting basic tech issues and operating the computer programs administrative control system (training provided).

Time Commitment:

We are looking for a long-term volunteer dedicated to helping the RLS community. This role typically requires 2-3 hours per week.

Benefits:

• Complimentary RLS Foundation membership during your time as a volunteer.
• Joining a network of RLS Foundation support volunteers.
• Annual training provided by the RLS Foundation.

If you are interested in learning more about this role, please email elyse@rls.org.

The Night Sky Surrounds Me: My Journey with RLS

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.

Submit A Design for Our Spring Fundraiser!

Are you an artist, photographer, graphic designer or simply artistic? Submit your original artwork or photography to be considered for use in the RLS Foundation's Spring Fundraiser campaign!

As part of our RLS Awareness Day activities for September, we are asking RLS community members to submit a design to be used in our Spring Fundraiser campaign. Selected artwork will be featured on the greeting cards mailed to RLS Foundation members during our annual spring fundraiser. This design contest is an opportunity to showcase your skills and get involved in supporting a meaningful cause. All designs should be emailed to elyse@rls.org with the subject line: RLS Foundation Spring Fundraiser Artwork

Submission Details:
Deadline: October 10
File formats accepted: PDF, PNG, or JPEG
Card dimensions: 5” x 7”

Design Guidelines:
The RLS Foundation’s mission emphasizes hope as we push for continued research to improve treatments and a cure. Artwork should reflect this message, shining light on the progress that has been made while letting others know that they are not alone in their RLS journey. In the past, the spring fundraising cards have used images of sunsets, flowers or fields through various mediums (watercolor, photography etc).

• There are no required color schemes.
• Designs must be non-partisan and appropriate for all ages.
• Both artwork and photography are accepted, with a certification that the work is original and created wholly by the submitting artist, and that artificial intelligence was not used to create the artwork in whole or in part.
• The card featuring the design will also contain fundraising and other messages inside the card, but text will not be superimposed on the image.

Artist Acknowledgement:
A brief credit and biographical note about the artist is included on the back of the card. Selected artists will be asked to provide a short paragaph (30 words or fewer) about themselves and their artistry.

• The selected artist will receive a complimentary set of printed cards and envelopes featuring their design.
• Artist will be recognized on our website and in Foundation communications.

Rights and Usage:
By submitting, artists grant the RLS Foundation the right (not subject to royalty, licensing fees or other compensation) to reproduce, distribute and sell printed materials featuring the selected designs as part of our fundraising campaigns. Artists retain copyright and may use their work elsewhere. Artists will be asked to sign a model release agreeing to these terms.

Please email elyse@rls.org with any further questions.