Restless Legs Syndrome Foundation Blog

April 6, 2021

If there is one silver lining that we have seen the restless legs syndrome (RLS) community discover over the course of the COVID-19 pandemic, it is the bonding together of more and more people who are joining our network through online support groups. Since we were forced to “go virtual” as a safety measure, people who had been suffering silently – unable to travel or living too remotely to attend in-person support group gatherings – were suddenly able to share their stories, to give support to some, and to lean on others.

But well before COVID-19 struck, we have been following the journeys of RLS patients in our network. You can read some of their stories on our website and hear from some in our YouTube series “My RLS Journey.”

Caroline’s RLS started when she was in her 30’s and she tells of decades spent trying different remedies and being afflicted with augmentation. Her advice to fellow patients: “Keep an open mind and find the best neurologist you can.” Donnie recalls his journey commencing when he was a teenager. “I didn’t think it was anything out of the ordinary, but it didn’t stop what I was doing so I lived with it.” He acknowledges that RLS affects your life every day, but he didn’t let his RLS deter him from flying gliders and SCUBA diving – things he loves to do.

Each storyteller has charted his or her own unique journey. Lori describes her symptoms as “not pain, but not a tolerable feeling” and says that what helps her cope is, “getting my mind on something other than my legs.” Janice says that the day she first heard about RLS was one of the most memorable in her life: “The day I found out I wasn’t crazy – that I had a disease!”

But what they all share is the realization that they not only needed help themselves, but that they also needed to help others. Donnie says: “The first time I talked to somebody else who had RLS, it gave me some solace, knowing that there are other people out there who know what I’m going through ... so the best thing you can do is, ‘let me help other people, let me help them get through it.’”

Janice agrees that of all the people she’s met over the years, the ones whose stories stick with her are the people who were suffering and who looked to her for advice: “I was so glad I could be one step ahead of them to help them ... and other people have been one step ahead to help me.”

All these journeys are unique. But they all arrive, hand-in-hand, at a common destination – a station-stop on the road to a cure, where caring, hope and compassion meet. There are many ways you can reach this destination, too. You can share your story.

You can participate in an RLS support group. You can help us advocate for RLS research. And you can help the Foundation continue to bring our community together, by donating to the Foundation .

As Janice concludes: “That’s part of the hope, that we’ll all just reach out and grab one another’s hands.”