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 The problem is that the body of knowledge at all levels is outdated and often leads to ineffective or even harmful advice.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.

Interview with a Legend: Pickett Guthrie

By Clara Schlemeyer, Program Coordinator, RLS Foundation

Pickett Guthrie was asked to share with our members some of her memories about starting the Foundation and her thoughts on where we are now and where we are headed. Guthrie was the Foundation’s first executive director and continues to be one of our biggest supporters. She received the Ekbom Award, with deep appreciation of meritorious service, in 2008.

Q: How did you first get involved with the RLS Foundation?

A: I am the middle cog among three generations who suffered with RLS; my father had RLS (but, of course, back then no one knew what it was), and my daughters also have it. I was stubborn. I had a very demanding job, but I couldn’t sleep. As I tried to get help from my general practitioner, he finally remembered that my father had complained about the same condition. My internist sent me to the medical school at Duke University because he didn’t know what to do for me. Eventually, someone in the Neurology Department at Duke admitted that he did know what it was, but he did not have a clue about how to treat it. Eventually, I went to the National Organization for Rare Disorders in Washington, D.C., where they had received other inquiries about RLS.

About that time, Oron Hawley and Virginia Wilson were also looking for answers about their own suffering and started exchanging letters to share information. That is when Oron, at age 90-plus, started a very simple newsletter about RLS and wanted to start a support group for sufferers as well.

Oron really does deserve most of the credit. Although he did not have a severe case of RLS, it made him mad that it was so difficult to find treatment. So, he and Virginia decided to have a small support group, just the two of them! Virginia was really a go-getter type of person, so I started chatting on the phone with Virginia. It is hard to imagine now, but this was a time before computers and the internet enabled people to make connections.

I joined the small support group, but really, a support group in and of itself does not have much credibility. I was working for a very large law firm, and I was told that in order to have any credibility we needed to form a significant organization. Since I had the knowledge and the ability to deal with the legal requirements, I filed for incorporation, formed a board of directors, filed for 501(c)(3) status and created the Restless Legs Syndrome Foundation. We were up and running all at once!

It was a unique group of people who decided that we were going to try to do something, not just sit and let life happen. Those were very exciting years, because initially we were told that there weren’t many people with this obscure disease – that RLS is a rare disorder. I attended the national meeting of the Council on Rare Disorders in Washington, D.C., and discovered that RLS is not a rare disorder.

Q: What were some of the guiding principles that helped you as the first executive director of the RLS Foundation?

A: The most important function of the Foundation, ironically, was to listen to our members. People with RLS just needed to be heard, and they needed to know that RLS is a real, not so rare, disease. They needed to be directed to legitimate medical information. I think the Foundation has always stood for that, for providing information that you could trust. Over the years, the Foundation has built that reputation for truth and transparency, sharing confirmed medical information from RLS experts. We were trying not to frighten people but to reassure them and give them hope.

It was important that we build credibility among medical professionals. We went to our first meetings at SLEEP and the American Academy of Neurology to show that we were a professional organization, and that restless legs syndrome was not a joke but a legitimate, common disease that needed attention and required medical treatment.

Q: What is your best memory with the RLS Foundation?

A: That very first SLEEP meeting, it was heady stuff! Here we were, three determined people trying to get the word out about RLS, and the Foundation was still operating out of my dining room with material spread out on the dining room table. Nobody knew that we didn’t have an actual office and that I wasn’t even receiving a salary. So, we had to fake it. We just had to take a deep breath and act as though we were just as legitimate as anybody else there. That was exciting!

Q: What do you want your legacy to be?

A: From the beginning, we formed the Foundation to help other people with RLS. And, as the Foundation has grown, that is still the focus: to help those with RLS through education, resources and research to find a cure. Initially, when we got calls from people suffering from RLS, about all we could do was to hold their hands and offer a compassionate ear. But now there is significant help available in terms of resources, webinars, support groups and advocacy opportunities, and it’s very satisfying. I am proud to have been the first executive director, but I never could have done it without so many people who rolled up their sleeves to help, whether they had any previous professional experience or not. Most of our first board members had no experience serving on a board of directors, but they were willing to serve on the RLS Foundation’s board because that’s what was needed to form a Foundation.

Q: Where do you hope to see the Foundation in the next 30 years?

A: Of course, we would all like to unlock the mystery of RLS and find a cure. I am so proud to see that the RLS Foundation is now a major player in the world of sleep professionals, so the success of this organization is significant. Even though we don’t yet have a cure for RLS, I would love to see RLS have less impact on the quality of life of people who suffer from it. That means finding better treatments that will allow those with RLS to live full and happy lives. Tragically, suicide is a real issue for some people with RLS.

We know now that RLS can be diagnosed and treated effectively. Although the Foundation has made great progress in educating the public about RLS, there are still people who have trouble finding a healthcare provider who can help them manage their disease. There will always be a need for the Foundation. Better education and information, and not just fewer desperate people, would be a simple way to put our goals. I would like to see the primary care doctors and specialists treating patients with RLS send them to the RLS Foundation for reliable information and compassionate support.

In my day, people wound up at the Foundation in desperation, when their healthcare providers had no answers for them. It is my hope that in the next 30 years we can provide hope and education to RLS patients by connecting them with an RLS specialist who can help them manage their disease, so that it doesn’t destroy their lives. The general public must understand that RLS affects every aspect of a person’s life in such a profound way, because it robs them of the ability to sleep or even to rest. Members of the RLS Foundation understand the devastating impact that RLS has on quality of life and can support each other to minimize that impact.