Restless Legs Syndrome Foundation Blog

Don’t Lose Hope

My search for understanding and help spanned 30 years, multiple primary care practitioners, many specialists, a wide array of prescription and over-the-counter drugs, and non- medical therapies – all while my RLS was taking an increasing toll on me and my ability to function. It got to the point where I would wake up each morning after only one or two hours of fitful sleep, wishing I just wouldn’t wake up at all. It was difficult to process even basic thoughts, making each day miserable. And I knew that the night would be a repeat of every night for the past seven-plus weeks, where time dragged on with repeated unsuccessful attempts to go to bed and fall asleep, until I was so mentally exhausted that I’d finally find sleep around 4 am, and only for an hour or two. I was at my wit’s end and turned my limited attention to finding a dignified way out – to end my suffering by ending my life.

The point of this article is self-advocacy – a concept that had eluded me all the years my RLS was progressing. I’d hoped to find a doctor to quickly diagnose my tightening toes and calf muscles at night and fix it. When I had a shattered shoulder, a doctor fixed it. When I had a heart attack, a doctor fixed it. When I had cancer, a doctor fixed it. I could always lean on a doctor to help me solve a problem and get on with life. Not so with RLS.

It’s a paradox. So many people have RLS or know someone who does, and many physicians have at least heard about RLS. The problem is that the body of knowledge at all levels is outdated and often leads to ineffective or even harmful advice.

After many primary care appointments and referrals to a variety of specialists, I was referred to a neurologist. In response to my query about his familiarity with RLS, he replied “Sure. We all have a chapter on RLS at university,” and prescribed a drug that is now known to worsen RLS symptoms, as it did with me. My mood was declining rapidly, and a variety of antidepressants were prescribed that are also now known to trigger RLS symptoms, as they did with me. I was in tough shape.

My primary care physician learned of a sleep doctor who had success with a drug called pramipexole. I was referred with a sense of urgency. She confirmed that I had RLS and that it wasn’t just a muscle cramp thing. Validation, at least! The pramipexole worked the first night. Relief! Hope! But after about eight months, I was needing more of it, earlier in the day. I learned of an obscure concept called augmentation, and I had to quit the drug. The next two weeks were miserable, weaning myself from it. My wife had read that opioids were effective and asked the sleep doctor about them, to which she replied, “That’s a red-flag drug.” Another dead end, quickly destroying what little hope I’d gained.

At this point, it became apparent that I had to advocate for myself. Most information led to the same dead-end advice of the past, since it was all based on the same outdated research findings the physicians “studied in the chapter at university.” I found the RLS Foundation and their discussion boards. Finally, a great resource with a bounty of information. Through it, I found a support group that I attended. It was nice not to be alone in my suffering. I learned of a doctor who had more advanced knowledge of RLS. I went to him, and after a thorough assessment, he asked me to try opioids. “I thought it was a red-flag drug,” I replied. “Yes, but your condition is more important than the scrutiny it brings.” I tried an opioid and it worked. Thank God!

I continued my research and learned of advanced studies by Christopher Earley and Richard Allen at Johns Hopkins, John Winkelman at Harvard, and others. The relationship with my RLS doctor turned into more of a partnership where we benefitted each other with our research. I learned of emerging thoughts about iron and the blood-brain barrier, and a particular type of iron infusion that might help. It did help. I learned of a different kind of opioid, called buprenorphine, that didn’t contribute to depression. It worked very well! I consider it a game changer for me.

I am now returning to the high-quality, active life that I had lost. I am forever indebted to the scarce few physicians who are blazing the trail on RLS, and the RLS Foundation for disseminating that information.

My message to you? Find the energy and courage to advocate for yourself. It can work.

Barry Otterholt is a (mostly) retired project management specialist, known for recovering troubled IT projects for a number of different state governmental agencies. He lives in the beautiful Pacific Northwest with his family. He and his wife are avid scuba divers who prefer to go where palm trees grow. He also loves exploring the backroads of the U.S. on his motorcycle.

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.”