Restless Legs Syndrome Foundation Blog: support groups

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!

Guest Blogger: Erika Hallerman

Wednesday, November 14, 2018

November 14, 2018

How Guided Meditation Has Changed My Life

By Erika Hallerman

Erika is a Support Group Leader who held her first meeting this year. After finally discovering the resources embedded in the RLS Foundation, she decided to start the first support group in North Carolina. "The focus of my life has been to find a way to live a more comfortable life and help those who suffer with this condition during the process. Most days are hard work for me, but at the end of the day, the struggle is worth the challenge. I hope to share my strength with those who suffer from RLS."

It’s been nearly four years since I began to suffer from debilitating pain in my legs. During my pursuit to identify the cause, I saw many providers who prescribed numerous medications that ended in failed attempts to control my pain. My fate changed when I was referred to a pain management specialist who would later confirm the diagnosis of restless legs syndrome (RLS). I learned that my RLS was severe in nature and would require monumental efforts to control. I was fortunate enough to have found a provider who would go to great lengths to help control my pain through a multifaceted approach.

RLS affected every part of my life. The disease led me down a path of lost sleep, which led to more pain, worsening frustration, and increased stress and anxiety. All of this eventually invaded the way in which I functioned as a wife, mother and individual. Under the close supervision of my doctor, I began to change my medication regimen and received much-needed medical interventions, which made my pain more tolerable. I began to work persistently to walk through my pain at night and participated in physical and mental health therapy to learn how to manage the disease. Although my RLS symptoms improved, the stress, anxiety and fatigue continued to exacerbate my symptoms and cause havoc on my sleep. On top of RLS, I had periodic limb movements in sleep (PLMS), which worsened my fatigue and reduced my ability to function well. I felt helpless and frustrated and couldn’t control the effects of stress on my symptoms.

I realized I needed to make a change. I began to draw, write, read and follow a regimented bedtime routine. I knew medication was a necessary component for controlling my disease, but my doctor continued to support me on gaining additional tools, instead of solely relying on medications. I soon learned that one of the missing pieces was to manage my stress. This endeavor would prove to be far more challenging than I’d ever imagined, until the day I discovered meditation music.

Meditation music made me feel as if I had company on those lonely nights. It was easy to access online at any time. As the sun set each day and my symptoms worsened, I found comfort in meditation music. I’d listen every night in order to fall asleep and stay asleep. Meditation music took the darkness out of what felt like an empty room. After some time, my sleep began to improve, but not as much as I would have liked. The sleep deprivation continued to take a toll on my body. Stress was still difficult to manage, anxiety continued to build, and the cycle of pain continued.

One day, I decided to search online for guided meditation sessions that focused on reducing stress and anxiety. I found a few narrators who were easy to tune into, and I found great comfort in their voices. They were calming in nature and took the feeling of isolation and fear out of my pain. I began to listen to guided meditation each night. Eventually I’d do the same every morning before starting my day. These practices became part of my daily ritual.

After several months of practicing guided mediation daily, I finally began to see results of my hard work and persistence. Eventually I also learned how to reduce my stress during the day by focusing on my breathing and creating visual images that improve stress management, such as packaging my worried feelings in a box and sending them away. Repeating mantras that I’d learned was also a way to reduce the anticipation of pending stress. Slowly, I learned that it felt better to feel calm instead of anxious and uptight. All of these practices began to impact the quality of my sleep and have a positive effect on my mood during the day. Sleeping well gave me energy and made me happier.

Guided meditation has helped me gain control of my RLS. It has given me the opportunity to sit in the driver’s seat. As long as we continue to initiate the same practices and behaviors, we will continue to be caught up in the cycle of pain, lost sleep, stress and anxiety. RLS can require a great deal of effort to control, but when we make positive changes, as difficult as they may be to initiate, we can generally expect positive outcomes. Guided meditation changed my life, and I hope you will give it an opportunity to change your life as well.

Erika says: “I survive the struggles of RLS with the support of my lovely husband and four daughters. They know how to make my darker days feel brighter. I try very hard to enjoy the good days with them, because I never know what tomorrow may bring. People who suffer with this disease tend to feel as if those good days are rationed. On those difficult days, I know that there will be a better one on the way very soon. I often find great comfort in a quote by Tom Hanks from the movie Castaway: ‘So now I know what I have to do. I have to keep breathing. And tomorrow the sun will rise, and who knows what the tide will bring in.’ I do try my best to maintain hope for brighter days ahead. Guided meditation has helped me enjoy those good days and reduce the interference of those tougher ones.”

Interested in making a difference and joining the RLS Foundation volunteer team? Visit our website to learn more about how to apply!

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!