Restless Legs Syndrome Foundation Blog

"Congressional Sign On Letter" for Sleep Disorder Research, Education and Awareness

Background

For the fifth year in a row, an official Congressional Sign On Letter will be sent to the Appropriations Committee asking them to prioritize support for sleep and sleep disorders research and awareness. To be effective, we need your member of the U.S. House of Representatives to "sign on."

Urgent Deadline Approaching

Your Congress Person will only join if YOU (the constituent) ask, and the final deadline is March 22. Take action TODAY, it is imperative! Here’s how:

1. To find the appropriate staff member who handles healthcare (the Health LA) in your Representative’s DC office, first contact our sleep community advocacy staff, Josh Fein at Fein@hmcw.org to provide your home address so Josh can identify your House Representative’s Health LA.
2. Email your Representative’s Health LA using the draft message below and attach the FY24 Sleep Sign On Letter PDF (click here to download letter). Please note, you do not need to click the “Quill” link and form mentioned in the sample email; that link only works for House offices.

Thank you for joining our RLS advocacy efforts by raising your voice for RLS, sleep and sleep disorders!

-----*SAMPLE PERSONALIZED REQUEST EMAIL*-----

To: [Your House Representative’s Health LA’s Email]
Cc: clara@rls.org
Subject: Sign On Letter – Sleep Community

Dear [Staff Member’s Name],

My name is [your name] and I am a constituent from [hometown]. I am also an advocate for the sleep community. I hope your office will join the attached Sign on Letter, which supports the sleep community’s appropriations recommendations for FY 2024. To sign on, please complete this form via Quill by the deadline of March 22nd. Please contact Kaitlyn Kelly at Kaitlyn.Kelly@mail.house.gov with any questions.

Thank you for your time and for considering this request.

Sincerely,
[Your Name]
[Your Address]
[City, State Zip]

ATTACHMENT: FY24 Sleep Disorders Sign on Letter (http://www.rls.org/file/advocacy/FY24-Sleep-Sign-on-Letter.pdf)

-----*   *-----

Questions? Email Josh Fein at Fein@hmcw.org with any questions. Thank you for raising your voice for sleep research and awareness!

Restless Legs Syndrome: More Than a Sleep Disorder

For decades, restless legs syndrome (RLS) has been referred to as a “sleep disorder.” Does RLS cause sleep issues? Absolutely yes. But to think that RLS is simply a sleep disorder is like thinking that a Boeing 747 wide-body jet airliner is simply an airplane. I feel obliged to spell it out: RLS is not just a sleep disorder for individuals with advanced or severe symptoms.

For many people like me who suffer from RLS, symptoms are not just a sleep disturbance that affects us at night. Without effective treatment, we would battle symptoms 24 hours a day, seven days a week. In the beginning, my symptoms started at night in my legs, when I was tired and trying to sleep. Then, over time, the intensity of the symptoms increased, and now they affect not only my legs but my arms, back, hips and neck.

An accurate description of how advanced symptoms really feel can only be described by someone who has RLS. I feel like I have to move my legs. And I do … I have to move my legs. When I do move my legs, I feel immediate, total relief for about three seconds. Then I have to move again. The feeling caused by severe RLS symptoms is misery and pain, and no amount of willpower can overcome the driving need to move. For me, the more tired I am, the worse the symptoms become. Sometimes I have to move my legs, arms and hips, and even bend my back to find a mere few seconds of relief.

Severe RLS symptoms have been described to me as a feeling of nerves moving under the skin … a “creepy- crawly” sensation that is overwhelming, all-consuming and miserable. You can’t keep from moving. You can’t be still. You can’t sleep. You can’t relax. You have to move. You feel it all over your body and it hurts.

For many individuals suffering from RLS (including me), symptoms are so severe that without effective treatment we would not be able to function. Without treatment, we would not be able to hold jobs, raise families and contribute to society in a positive way. We would not be able to sleep, use a computer, read a book or watch TV.

For others like me who have debilitating RLS symptoms, to characterize this suffering as a “sleep disorder” doesn’t begin to tell the whole story.

Richard R. Mahaffey received a Bachelor of Science in chemistry from the University of Virginia at Wise in 1973. He worked from 1973 to 2019 as a chemist, IT professional, author, editor and project manager. He was diagnosed with RLS in the 1980s and was a member of the Northeast Tennessee RLS Support Group from 2015 to 2018.

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.

Peter Kendall Brooks — May 17, 1944 - January 21, 2023

The RLS community has lost a powerful friend and advocate. Peter K. Brook's steadfast support for the Foundation’s Research Grant Program has advanced knowledge in the field of RLS as we search together for better treatments and a cure. For at least four decades before his death, Peter suffered from an exceptionally severe case of restless legs syndrome. Despite the ongoing challenges of sleep deprivation and other effects of the disease, he never let it slow him down or reduce his commitment. His willingness to persevere was an inspiration to all who worked closely with him on the RLS Board and elsewhere.

Peter served on the Foundation's Board of Directors from 2000 to 2005. He brought a wide range of skills to his work on the Board. His career in investment banking with J.P. Morgan (now part of Chase Bank) equipped him with both financial knowledge and relationships to lead the Board’s development efforts. He was instrumental in creating structures that continue to support our work in finding and working with donors. His passion was discovering connections with others who shared his commitment to research. He was a believer in efforts to improve the lives of those living with the disease and strongly supported the Foundation’s three-part focus to raise awareness, develop better treatments, and find a cure for RLS.

After his retirement from the financial world in 1995, Peter developed a second career as an artist, recognized for his talent in two realms: abstract painting and music. His artworks now hang in permanent collections of prominent institutions including the Monterey Art Museum and the Crocker Art Museum in Sacramento. His songwriting and guitar performances took him around the nation, and, thanks to YouTube, around the world. More about his life and artistic pursuits can be learned at https://www.pkbrooksart.com.

Peter generously shared his RLS journey on film to raise awareness and to educate members of the public and those in the medical community. In a widely viewed RLS and Augmentation Video Peter stressed the importance of knowledge: finding a knowledgeable provider and becoming a knowledgeable patient. He urges those with RLS to work with a provider willing to have a two-way dialogue about addressing the challenges of the disease.

With Peter’s passing, the Foundation loses not only a dedicated advocate for the work we share in dealing with this disease, but we also lose a warm and talented friend. RLS Foundation Executive Director Karla Dzienkowski recalls the time that Peter detoured from one of his national musical performance tours to visit with Foundation staff. “We had a great afternoon at the South Austin Café, and we even helped to pick out some western wear for his upcoming shows,” she remembers.

As the RLS Foundation celebrates the 25th Anniversary of the Research Grant Program, we are reminded of Peter’s commitment to research. We are on the verge of funding our 50th grant proposal for groundbreaking scientific, medical research -- a program that has poured nearly $2 million into the field. We invite all to honor Peter Brooks as a leader, a tireless worker, and an inspiration for addressing the challenges that lie ahead through a memorial gift to research in his name.

My Experience with Iron Infusion

I was 12 years old in the summer of 2002 when I began having trouble sleeping. I would wake up in the middle of the night with creepy, crawly feelings in my legs and an immediate urge to get up and move around. I would walk downstairs to my parents’ bedroom to explain what was happening, only to have the symptoms stop when I got to their room. These episodes occurred throughout the night and led to exhaustion, daytime sleepiness and poor grades at school.

I was evaluated by six doctors in six medical specialty areas who could not pinpoint what was causing my sleep problems – or even give it a name. I was told multiple times that I was experiencing “growing pains” that would eventually go away. Finally, I was diagnosed with restless legs syndrome (RLS), and my family’s primary focus became finding a treatment plan to manage my symptoms. When one person’s sleep is affected, the whole family feels the impact of nightly sleep disruptions.

I tried several conventional RLS treatments, however, none thoroughly relieved my symptoms. My ferritin level was tested and found to be considerably low. Because I was so young at the time, intravenous (IV) iron wasn’t an easily accessible option for me. So, I began a course of oral iron to see if I could raise my ferritin level. For about 14 years, I tried several different oral iron preparations, combinations of oral iron, and different dosages and times of administration, but tests confirmed that none of these treatment strategies was effective in raising my ferritin level above the 75–100 mcg/L target range for individuals with RLS.

My RLS doctor tracked and plotted my ferritin level with successive iron tests. Despite my adherence to oral iron administration guidelines, I eventually reached a point where the iron stores in my body would not meet or exceed mid-level values for ferritin. At that point, my RLS doctor discussed with me the risks and benefits of IV iron, coordinated my care with a hematologist, and provided instructions for IV iron administration for me as an RLS patient.

In 2016, I found a hematologist to administer IV iron as a way to increase my ferritin level. For my first iron infusion, I received low-molecular-weight iron dextran (INFeD). Other formulations of IV iron were used in subsequent infusions.

Iron infusions are relatively easy procedures that, from start to finish, take about two to six hours, depending on the type of iron formulation approved by your insurance company. First, the nurse checks your vital signs and sets up equipment to monitor your pulse and blood pressure. Second, an IV is started, and a test dose of the iron preparation is administered by IV. This is followed by an observation period of up to one hour. During the observation period, the nurse watches to make sure there aren’t any allergic reactions to the test dose. If you do not experience any allergic reactions, the nurse administers the full IV iron dose via a pump to ensure a controlled rate of infusion. Throughout the infusion period, the nurse continues to monitor your vital signs and check to see if you are having any unusual feelings that may indicate a side effect of the therapy. Once the iron infusion is complete, the IV cannula is removed, vital signs are checked for the last time and you are allowed to go home.

Since my first iron infusion, I’ve received this treatment about once every two years. I’ve noticed two main symptoms that usually indicate my ferritin levels are low: feeling more tired during the day and restless feelings in my legs. That means it’s time for another iron infusion.

For me, iron infusions have made a significant difference in helping to increase my ferritin levels, which in turn make my RLS more manageable. I still limit my caffeine intake, exercise daily, and maintain a normal sleep schedule by trying to go to bed and wake up around the same times each day. However, I know that my increased ferritin levels, resulting from iron infusion therapy, have led to a significant decrease in the restless sensations that would otherwise keep me awake at night and seriously affect my quality of life.

For more information see Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis-Ekbom disease in adults and children: an IRLSSG task force report.

Iron, Diet and Management of Iron Levels

The relationship between RLS and iron is complex, but research over the last two decades has increased the understanding of this relationship. It is now clear that brain iron deficiency plays a significant role in the development of RLS.

Dietary Iron

Iron intake from diet is essential for maintaining iron stores in the body. Unfortunately, the body absorbs only 10%–15% of dietary iron, and all ingested iron is not absorbed equally. Knowledge of iron sources in the diet will help people make choices that aid in the maintenance of iron stores in the body.

Dietary forms of iron are divided into two categories: heme iron and nonheme iron. Heme iron is only found in animal sources such as meat, poultry, fish and shellfish, and is easily absorbed in the gut. The body absorbs about 15%–35% of heme iron intake. To enhance the absorption of iron, foods rich in iron should be consumed with foods rich in vitamin C, such as orange juice, bell peppers and tomatoes. It is the acid environment in the stomach caused by vitamin C that helps iron absorption. Conversely, some items can impair the absorption of iron in foods. These items include the tannins found in tea and coffee, and the calcium in milk products and antacids.

Nonheme sources of iron include leafy greens, nuts, seeds, whole grains, legumes and fortified cereals. Although these foods are a source of iron, the iron they contain is not easily absorbed by the body. The percentage of nonheme iron absorbed is only 5%–12% because the human gastrointestinal tract does not readily absorb this type of iron.

Medical Conditions

Several medical conditions can further impair iron absorption in the gastrointestinal tract, leading to iron deficiency anemia, a state of low stores of iron in the body. Malabsorption of nutrients, including iron, occurs with medical conditions such as:

• Celiac disease
• Ulcerative colitis
• Crohn’s disease
• Small intestinal bacterial overgrowth
• Irritable bowel syndrome

Iron deficiency anemia is also common during pregnancy due to increased blood volume and the need for additional iron by the mother and fetus. In addition, blood loss resulting from heavy menstrual cycles, surgery, or chronic blood loss due to peptic ulcers, hiatal hernia, polyps or cancer can cause iron deficiency anemia.

Brain Iron Deficiency and Iron Supplementation

Lack of available iron affects the brain and the dopaminergic system. Brain iron deficiency and dysfunction of the dopaminergic system play a central role in the development of RLS. That is why every individual with RLS needs to monitor their iron status and the steps they need to take to maintain their iron stores at the recommended levels. Low stores of body iron, as measured by serum ferritin levels and low serum iron saturation levels, correlate with low iron in the brain and the worsening of RLS symptoms.

RLS researchers recommend a serum ferritin measurement of 100 mcg/L or above to minimize the severity of RLS symptoms. If dietary sources of iron are insufficient to maintain iron stores in RLS patients, oral iron supplementation is the next step to help keep serum ferritin in the acceptable range. Oral iron is recommended when serum ferritin is less than 75 mcg/L, with the goal of raising serum ferritin levels to 100 mcg/L within three months of initiating therapy.

Guidelines to achieve maximum absorption of supplementary oral iron include:

• Use ferrous sulfate 325 mg tablets with 60–65 mg elemental iron (check the bottle, as the amount varies), taken once daily with a beverage containing vitamin C or with a 250 mg tablet of vitamin C.
• Take the oral iron at night; iron redistribution in the brain is highest during the nighttime hours and studies suggest it may be better absorbed later in the day.
• Avoid consuming tea, coffee, products containing calcium (dairy products, antacids), and reflux medications within two hours of taking oral iron.
• Schedule oral iron four hours before or after taking thyroid medications to maintain the effectiveness of the thyroid medication.

Intravenous (IV) iron infusion should be considered if ferritin levels of 100 mcg/L or above are not achieved after three months of oral iron therapy. In two recent randomized, double-blind, placebo-controlled studies, RLS patients with a normal hemoglobin level, serum ferritin of less than 300 mcg/L, and transferrin saturation of less than 45% were administered 1,000 mg of iron intravenously and showed improvement in their RLS symptoms. After infusion, it takes six to eight weeks to evaluate iron status and symptom improvement.

Administering IV iron to RLS patients with low serum ferritin levels will quickly raise those levels above 100 mcg/L and improve their symptoms in less time than it takes to evaluate the effects of oral iron supplementation. For individuals with low serum ferritin and a high level of symptom severity, IV iron is an important treatment consideration to ensure adequate iron stores in the body, iron distribution in the brain and better management of RLS symptoms. In patients with falsely elevated ferritin levels due to inflammation or infection, a low serum iron saturation of less than 20% may be a better indication of the need for iron supplementation.

Conclusion

For people with RLS, maintaining iron stores at therapeutic levels requires a close working relationship with an RLS provider who understands the connection between the level of iron stores in the body and its impact on RLS symptoms. Revision of an RLS treatment plan based on a periodic evaluation of iron tests will ensure better management of RLS symptoms and an improved quality of life.