Restless Legs Syndrome Foundation Blog

August 28, 2020

Take the RLS Patient Odyssey Survey to help advance RLS research, treatments and awareness!

On Sept. 23, RLS Awareness Day, the RLS Foundation will launch a new research study on the challenges of living with RLS. The RLS Patient Odyssey Survey II will evaluate RLS treatment strategies, emotional well-being, relationships and lifestyle, adding to the body of knowledge about the burden of disease and identifying focus areas for future education and research.

Specifically, the study aims to:

• Understand the experiences of RLS patients with medical treatment and symptom management
• Provide data to researchers on the long-term burden of disease, including impact on spouses and partners
• Promote awareness that RLS is a serious neurological disorder
• Provide resources for RLS patients to help facilitate decision-making with their healthcare providers on medical treatments to manage their disease

RLS Patient Odyssey Survey II is the second survey developed by the RLS Foundation. Findings in the 2013 first survey were published in the the Journal of Sleep Medicine and disseminated broadly. RLS Patient Odyssey Survey II will gather updated and expanded data in areas such as symptom management, experience with healthcare providers, and ways in which the disease affects daily life and emotional well-being.

The current survey is particularly focused on the RLS patient experience, especially with regard to treatments and medical care. The survey was designed by a work group comprised of RLS Foundation Scientific and Medical Advisory Board members Brian Koo, MD, William Ondo, MD and John Winkelman, MD; Board of Directors member Jeffrey Durmer, MD, PhD; and staff members Karla Dzienkowski, Maddie Lionberger and Zibby Crawford. The survey is made possible thanks to an educational grant from Arbor Pharmaceuticals.

RLS Foundation members and nonmembers alike are encouraged to participate in the study, which will consist of two online surveys: one for RLS patients, and one for partners. To participate, visit www.rls.org/odyssey from Sept. 23 to Oct. 23. See below for details. Survey results will be shared with the RLS community and the public in 2021, prepared for publication in the medical literature, and presented in scientific meetings. Findings will also be shared with health policymakers in Washington, DC in the RLS Foundation legislative agenda and advocacy materials.

“RLS is a serious disease that can have a devastating impact on quality of life,” says Karla Dzienkowski, executive director of the RLS Foundation. “We have come a long way to advance treatments and research, but today's treatments are limited, and there is no cure. RLS patients still face significant, daily challenges in managing the disease. This study will provide data to accelerate and focus our efforts to address these challenges and improve quality of life for RLS patients and future generations of their families.”

We need you to help advance RLS research, treatment and awareness by taking the Patient Odyssey Survey!

Your voice matters! You live with RLS every day, and your input is critical to helping researchers, healthcare providers and policymakers understand the impact of RLS on daily life and where to focus their efforts.

Here’s what you need to know:

• Access the survey starting on RLS Awareness Day: Wednesday, Sept. 23, at www.rls.org/odyssey.
• There are separate surveys for RLS patients and their spouses/partners (living in the same household).
• The patient and partner surveys take about 45 and 20 minutes to complete, respectively. You do not have to complete the survey in one sitting.
• You do not need to be a member of the RLS Foundation to participate.
• The surveys are anonymous; no individual identifying information is requested.
• We strongly encourage everyone to take the online survey, if possible. However, those without internet access or in need of accommodations can request a mail-in survey. Contact the RLS Foundation at info@rls.org or 512-366-9109.
• The last day to participate is Friday, Oct. 23.

Mark your calendar for Sept. 23 to take the survey, and please share the link with others. You can also visit www.rls.org/odyssey to download a one-page flyer to hand out or post on bulletin boards in your community. Thank you!

Questions? Contact Maddie Lionberger, Research Coordinator, at maddie@rls.org or at 512-366-9109.

July 30, 2020

Why Your Voice Matters

By Kris Schanilec

Your advocacy efforts have been paying off! In October 2017, the RLS Foundation launched an advocacy initiative to inform federal policy makers about restless legs syndrome (RLS) with three main goals in mind: increasing funding for research, protecting appropriate access to opioid therapy, and expanding physician education and public awareness.

Many members of the RLS community have done their part in pursuing these goals by reaching out to their federal and local representatives via email, letter or phone – as well as joining the Foundation in Washington, DC, last May for RLS Advocacy Day on Capitol Hill. As a result, Congress continues to highlight RLS medical research at the National Institutes of Health (NIH) through report language in annual appropriations bills; and the Department of Defense continues to pursue important research on sleep disorders.

You may be wondering, “How does this affect me?” Educating legislators about the concerns of RLS patients puts necessary pressure on Congress to continue funding major research institutions, which in turn allocate resources to further research on RLS and sleep disorders in general – bringing scientists closer to finding better treatments and ultimately, a cure.

The proof is in the grant allocations that have been awarded to key researchers in the field, including members of the Foundation’s very own Scientific and Medical Advisory Board. Brian B. Koo, MD, who is the director of the Yale Center for Restless Legs Syndrome (an RLS Quality Care Center), recently received a grant from the Department of Defense for his work on RLS and hormones. Dr. Koo and his team at Yale University are investigating whether the levels of melanocortin hormones are increased in the blood and cerebral spinal fluid of people with RLS. If you are interested in participating, see details on www.rls.org.

Likewise, RLS Foundation advisory board member James Connor, PhD, at Penn State University received a grant from the National Institute of Neurological Disorders and Stroke to investigate iron deficiency and the RLS brain, in collaboration with David Rye, MD, PhD, and Lynn Marie Trotti, MD, MSc, both of Emory University. Dr. Trotti is the director of the Emory Sleep Center – an RLS Quality Care Center. Together, these researchers have developed models that will help to determine how cerebral spinal fluid from RLS patients affects the iron transport at the blood brain barrier.

Also funded by the NIH are RLS Foundation advisory board member Kathy Richards, PhD, RN, FAAN, of the University of Texas; and Christine Kovach, PhD, RN, FAAN, of the University of Wisconsin. They received a large grant from the National Institute on Aging to improve the treatment of nighttime agitation in people with Alzheimer’s disease. The researchers hypothesize that RLS may be a cause for nighttime agitation and sleep disturbance in these individuals.

These experts have made significant advances in the field of RLS research. Dr. Koo is one of the world’s foremost experts on the epidemiologic research that links periodic limb movements during sleep and cardiovascular disease. Dr. Connor is a leader in understanding the cellular and molecular mechanisms by which cells regulate iron. Dr. Rye was part of an international team that identified the first gene variant associated with RLS. And, Dr. Trotti is a two-time recipient of the American Academy of Sleep Medicine Foundation Strategic Research Award for her work on central disorders of hypersomnolence, RLS and sleep in neurodegenerative disease.

In addition to their work in research, these experts also work directly with the RLS Foundation to increase their impact on the RLS community. Drs. Connor, Koo and Trotti are all members of the RLSF Scientific and Medical Advisory Board. Dr. Koo and Dr. Trotti serve as the directors of the Yale Center for Restless Legs Syndrome and the Emory Sleep Center, respectively. Dr. Rye is a certified RLS provider at the Emory Sleep Center. Finally, Dr. Koo and Dr. Trotti play a significant role in educating the public, as the medical editor of NightWalkers and the author of the “In the News” column, respectively.

RLS Foundation Scientific and Medical Advisory Board member John W. Winkelman, MD, PhD, of Harvard University; and board member Jeffrey Durmer, MD, PhD, of Fusion Health; have attended numerous meetings with policy makers to advocate the needs of RLS patients.

Christopher Earley, MB, BCh, PhD, FRCPI, also adds a powerful voice to RLS advocacy in Washington. Dr. Earley is not only the chair of the RLS Foundation’s Scientific and Medical Advisory Board, but also the director of the John’s Hopkins Center for Restless Legs Syndrome, an RLS Quality Care Center. He has joined the RLS Foundation in Washington on multiple occasions to advocate for the needs of RLS patients, healthcare providers, and researchers. Dr. Earley is conducting an NIH-funded study to evaluate epigenetic changes in DNA from blood (lymphocytes) and from brain autopsy in individuals with and without RLS.

Here is Dr. Earley’s take on the recently funded research projects: “The truth is, restless legs syndrome is something that most people don’t know about, and definitely very few people understand. When it comes to competing for grant-based money whether through the National Institutes of Health, National Science Foundation, or Department of Defense, name recognition is important. The RLS Foundation’s presence in Washington, DC, has been very important in enhancing visibility of the name and the disease. This gives us a fighting chance for competitive grant money when measured up against heart disease, cancer, and neurological conditions like Alzheimer’s disease. Further work is needed. Each visit to Washington increases the possibility of giving RLS higher visibility on grant-supported initiatives.”

July 17, 2020

Compelled to Act

By Stephen Smith, RLS Foundation member and volunteer

Two years ago, when the RLS Foundation announced the Advocacy Program, I knew this was something that I had to do. What follows are my advocacy actions over the past two years. However, I believe that everyone needs to step up and become involved in advocacy in some way. Advocacy does not necessarily mean that you need to make a trip to Washington, DC. You can become involved by writing letters to your congressional representatives, visiting their local office to tell your RLS experience to a staffer in person, or simply responding to calls to action from the Foundation where you respond to government requests for comment. Just providing your financial support to the Foundation’s programs is another way to participate in the Advocacy Program.

To get involved, check out the Foundation’s Advocacy web page www.rls.org/get-involved/advocacy. Please don’t let everyone else carry the load. You CAN make a difference, just like me!

Here is my advocacy story. My RLS requires the use of opioids for treatment, yet the political climate in the town where I live is such that almost none of the doctors in town are willing to prescribe them for any reason other than surgery. Everyone says that "someone should do something" and I knew that in this case, that "someone" had to be me.

As per the Foundation instructions on how to get involved, I contacted the Health and Medicine Counsel of Washington (HMCW), the Foundation’s policy advisors in Washington, DC. Almost immediately, I received a reply email with detailed instructions on how to contact the local offices of my Congressional representatives. I was instructed to talk about my life with RLS, the problems that it causes for me, and three different issues that the Foundation was asking Congress for help with. I was also provided a set of "leave behind" documents to give to the Congressional staffers I met with.

A Welcome Reception

At all three visits, I was warmly received by the staffers and all the meetings went very smoothly. I was also able to make personal connections with each person I spoke with. After talking to me, one of the staffers said that she now suspects that her daughter may have RLS, which she would discuss with her pediatrician at their next visit. A week after the meeting, I sent thank-you emails to each person I spoke with and all three replied to let me know that they had passed the "leave behind" information along to their staff in Washington. My Congressman's staffer even contacted me a few weeks after that to tell me about an RLS related development at the regional Veteran's Affairs office, which covers part of the Congressman's district.

And then last May, I was fortunate enough to be able to travel to Washington, DC to participate in the Foundation's “RLS Advocacy Day on the Hill.” This was a fascinating experience and a real-life civics lesson. We were divided up into teams by state, briefed about how the visits would proceed, and then each team visited a number of offices for the states represented on the team. I was fortunate that the office of my Congressman, Scott Tipton, was one of the offices that we visited. At each office, the constituent for that member of Congress would say something about the challenges of living with RLS and then the group would join in to cover the various issues of interest to the Foundation, just like I did during my local visits the previous summer.

The call went out again in July that it was time to once again visit with the local offices. Further, it was suggested that these visits should be timed to fall during the August Congressional holiday, when all of our representatives return home for local visits. We received an updated set of issues to discuss and new "leave behind" documents. When I called Congressman Tipton's office, his district director remembered me from the previous year, and we chatted a bit about RLS while he checked his calendar. I had a major stroke of luck as Congressman Tipton himself would be in town the following week and there was a one-hour-opening in his schedule. When I told the HMCW staff about this, I received a special request to ask Congressman Tipton to sponsor a Congressional Resolution recognizing RLS Awareness Day on September 23.

The following week, I was excited to be able to meet Congressman Tipton in person, to have a chance to talk with him directly about the issues that we face with RLS, and to specifically ask for his help to recognize RLS Awareness Day. The meeting went wonderfully. I found out that Congressman Tipton had several close friends with RLS, so he was somewhat aware of the challenges that we face. When I asked Congressman Tipton if he would sponsor the Congressional Resolution for us, he readily agreed.

In mid-September I received an email from HMCW asking for help. There was some sort of snag in the process of getting the RLS Awareness Day resolution processed through Congressman Tipton's Washington office. HMCW asked me to contact my local office to push from my end while they also worked to clear the problem in Washington. An email to the district director in my local office resulted in an almost immediate reply that yes, he remembered that Congressman Tipton had agreed to sponsor the resolution and that he would call Washington immediately. With some additional support from our HMCW team located in Washington, fifteen minutes later, the snag had been cleared. So, on Wednesday, September 18, Congressman Tipton read into the Congressional Record a resolution recognizing September 23 as RLS Awareness Day.

You probably will not be called upon to help obtain a Congressional Resolution recognizing RLS Awareness Day, but you just might be able to educate your three congressional representatives about RLS – and that just might be enough to help us get that critical final vote to pass a bill in Congress that benefits those of us with RLS.

Stephen Smith is a dedicated member and volunteer at the RLS Foundation. He is always eager to participate in any way possible to promote RLS awareness and education. Steve has served as a Discussion Board Moderator for over five years, answering questions and providing resources at all hours of the day and night online with other discussion board moderators. He gives many people hope and the knowledge that they are not alone by sharing his RLS story on video, seen on www.rls.org and on our YouTube channel. He is an avid runner and has retired from a demanding career in the high-tech industry and moved to Colorado with his wife, Deb, for better climate and a more relaxed lifestyle.

June 25, 2020

How One Person's Journey Touches Many

Inspired by a desire for the world to know that RLS is a real diagnosis, in 2018 Lucy Hoekstra decided to walk to raise awareness for RLS. “Walk” is a simple word for her incredible journey. Hoekstra first attempted to walk from her home in the Netherlands to her sister’s home in Denmark but did not succeed. Nevertheless, she persisted with help from the European Alliance for Restless Legs Syndrome, and the European Federation of Neurological Associations (EFNA). On August 28, 2019, Hoekstra started a 356-mile journey from Hurdegaryp, Netherlands, to Krusbjerg, Denmark. Over 26 days, she walked the entire way, carrying her necessities and stopping for rest. Along the route she met supporters, blogged about her experience, and educated strangers about RLS. Hoekstra completed her trek on September 23, International RLS Awareness Day, inspiring people whose lives are affected by RLS, and others.

Joke Jaarsma, who is the vice chair of the Restless Legs Foundation in the Netherlands, and the president of EFNA, says, “In 20 years of patient advocacy, I have not seen this much press attention in just a couple of weeks. People like Lucy can make the difference!”

The RLS Foundation would like to thank Hoekstra for her work to raise awareness about RLS. Amber Arellano, RLS Foundation membership coordinator, recently interviewed Hoekstra about her incredible journey.

What inspired you to promote RLS, and why did you choose to walk?

I have had RLS symptoms since I was a teenager but only received my diagnosis about three years ago. It took so long because my former doctor didn’t recognize it. After I got my diagnosis, I noticed that a lot of people don’t know anything about RLS. This was frustrating at times, and I wanted the world to know that it is a real thing.

Last November, I went to Brussels for a workshop given by EFNA. This was for young neurological patients to learn how to advocate in a digital world of social media. After the great workshop, I decided to walk to raise awareness for RLS.

How did you prepare mentally, physically and emotionally for your 356-mile journey?

I started training in January and walked almost every weekend – sometimes twice. During these training walks I could test a lot of things, like shoes, my bag and clothes; and what, when and how much I would need to eat. I learned a little bit more every weekend, and in the end, it was perfect for my trip.

Mentally and emotionally I didn’t really prepare. I talked about it with family and friends but tried not to make a big thing of it. When I had my walking idea, I went to Joke Jaarsma, who is vice president of the Dutch RLS patient organization. She has connections with the German and European patient organizations. Together they organized the whole trip – press releases, website, hotels, etc., thanks also to an EFNA award (#BrainLifeGoals) that we had won. This took a lot of pressure off of me, and I’m really thankful for all the work they did.

How did it make you feel when people joined you as you walked?

It was great to have people with me to support me. Most of them were complete strangers, but when you walk and talk, you get to know people. During my trip, my pace slowed down a little, so at times like that it was good to have people with me, to get me through some hard moments.

What were some unexpected obstacles you experienced on your journey?

The first week I had some blisters. That was painful, but luckily after a week it went better. I also almost got lost a few times, but I was always able to find my way. Luckily, I have Google Maps on my phone, and sometimes people would show me the way. So I had a few obstacles but overcame them all.

What was the most surprising thing that happened to you while you were walking?

There were a lot of funny things and surprises. A few times people were offering me food and drinks – that was really nice. One time I was eating lunch in a cafe, and I talked to the people next to me about my trip and RLS. When I ordered, they said they would pay for me; that was a nice surprise!

When I was halfway, I needed to cross a river on a ferry. A lot of truckers and people on holiday also use this ferry. I had a flag on my bag, so people recognized me and waved and cheered. It had been a hard day that day, but that cheer squad made it so much better.

Another great thing was that a radio station followed me all the way and regularly interviewed me “live” on their program. On Christmas Day, they featured my walk when looking back on memorable events in 2019.

What advice do you have for others about raising awareness?

Don’t be afraid to tell your story. When I had my diagnosis of RLS about three years ago, I didn’t tell a lot of people. It was because on the one hand, people can react in an unsupportive way; on the other hand, I didn’t want people to know that something is wrong with me.

I now know that it is necessary to tell people about RLS so that more people, including doctors, know more about RLS and can react in a positive way. My legs may be weird sometimes, but that doesn’t mean that I am. Telling my story and raising awareness brought me a lot of good things, and I met a lot of nice people.

Do you plan to advocate for RLS again? If so, how?

My plan is to keep advocating for RLS, but at the moment I don’t know what form this will take. I think there is still a lot of work to do to raise awareness and do research about RLS. Luckily, there are some great people and organizations that work hard as advocates for RLS.

May 22, 2020

Dear Karla: How can joining the RLS Foundation benefit me in the future?

Curiously yours,
Ben with RLS

Great question, Ben! The work we do here today impacts our future good works supporting the RLS community.

One of the best ways you can manage your RLS is to become your own personal advocate. RLS Foundation membership equips you with the support and knowledge that allows you to stay ahead on cutting edge treatments leading to new diagnostic criteria, treatments to manage your disease and the only dedicated research program that seeks the causes and cures for RLS.

Nearly 20 years ago, I was a mom with an 11-year-old daughter who presented with a strange set of symptoms to the medical community. The diagnosis of RLS was missed by 9 doctors practicing in several specialty areas—she was ignored and told that she would just have to live with her condition. Thanks to Dr. Google, I found a name for the descriptive term she provided for the ailment afflicting her sleep each night. One night at 2 am, the RLS Foundation appeared in my search. As I poured through the pages of information, I found the name of the disease that stopped an 11-year-old dead in her tracks. If it were not for the committed members of this organization, I would not have found the name of the disease or a doctor knowledgeable in treating pediatric RLS. It wasn’t easy and we, as a family, live with the daily challenges of the disease. But for a kid who was failing out of school because of an undiagnosed sleep disorder, she graduated at the top of her class in college with a triple major because of the knowledge gained from the RLS Foundation’s scientific-based resources. I will be forever grateful to the members who made this possible to a mom on a quest for information.

Today, as Executive Director at the RLS Foundation, I am charged with creating and implementing actionable programs to increase our outreach. I marvel at the work of volunteers that serve on our Executive Board, Scientific and Medical Advisory Board, Support Group Leaders, Contacts and Discussion Board Moderators. Together, we work collectively to support, educate, advocate and conduct research that benefits every member of the RLS community.

A small committed group of individuals gathered around a dining room table in Raleigh, North Carolina in 1992; the same year that my daughter was born. The resolve and vision of these courageous individuals was clear – to create a Foundation to serve as the voice of our community. Who would have known that ten years later our family would need the Foundation and community of support.

As you can see, our community of caring and committed members raise the voice for RLS at the local, national and international level. Our volunteers serve as support group leaders, board members on NIH and DoD committees, and certified providers at Quality Care Centers in both the US and in Europe.

The power of membership is the key to advancing the needs of our community. I invite you to click here and take the same step that I did nearly twenty years ago.

Thank you for your question Ben. Becoming a member of the RLS Foundation will benefit you in the future because membership ensures the latest news and resources on the advances in RLS treatment which are published in NightWalkers and readily available for members like you. Plus your membership fee will support the only grant program specifically funding RLS research. In 2019 the RLS Foundation funded Doctor Sergi Ferré, PHD in exploring how opioid medications work in the brain to relieve RLS Symptoms. As a result we are actively seeking advancement in treatments on your behalf. Your membership also directly drives our advocacy efforts on Capitol Hill to educate providers, ensure medical research is governmentally funded and combat the opioid epidemic by providing a safe harbor in policy or legislation for RLS patients like you. Your membership preserves for you a community of support, access to new medical treatments and hope for a cure.

May 1, 2020

Building Momentum During the COVID-19

On April 24th, the RLS community celebrated the first Virtual RLS Advocacy Day with support and guidance from the Restless Legs Syndrome Foundation. Virtual RLS Advocacy Day provided individuals in the RLS community the opportunity to join together, as one, to educate our legislators about RLS and to ask for their support on key legislation of importance to our community from the comfort of their homes.

Our advocacy partner, the Health and Medicine Counsel of Washington (HMCW) presented a webinar led by Phil Goglas, Legislative Director on April 16th to educate and familiarize individuals in the RLS community about the advocacy process. He explained that Congress is currently making decisions for program spending in the next fiscal year. Our representatives rely on concerns voiced by their constituents to guide them in the legislative process.

The COVID-19 health crisis provided a unique opportunity for individuals to participate in RLS advocacy without the need to travel. This year, “Even with everything currently happening with COVID-19, 45 RLS advocates used their collective voices on behalf of the entire community to advocate for key priorities that would benefit all in the RLS community,” says Goglas. RLS advocates from 18 different states spoke out as a community and successfully contacted 105 legislators’ offices: 70 Senate and 35 House of Representatives. The calls to legislative staff along with emails sent by RLS constituents allowed our community to seek support for healthcare provider education, increased RLS research funding and appropriate access to opioid therapy for severe RLS.

Thank you Advocates

The RLS Foundation is incredibly proud of the RLS community’s participation. “The first Virtual RLS Advocacy Day was a resounding success. I thank every RLS advocate who reached out to their representatives during this difficult time to raise awareness and to educate legislators about RLS,” says Karla Dzienkowski, Executive Director of the RLS Foundation. The advocacy movement created by this virtual event educates our senators and representatives about RLS and how it impacts the lives of thousands of their constituents. “Your work as an RLS advocate is critical to making the case for RLS in federal funding in these program areas during the congressional appropriations process,” says Dzienkowski. The Foundation would like to thank all of you who took the time to share your personal RLS story with your representatives, to advocate for RLS legislation priorities and to share your interactions with your legislators with us. We will continue to monitor and report the outcomes from your advocacy outreach on Virtual RLS Advocacy Day.

How You Can Keep the Momentum Going

It’s never too late to get in touch with your legislators. Here’s what you need to know:

• Read our legislative and policy priorities to be informed about our current requests.
• Use the RLS prep packet for instructions on how to contact your representatives by phone or email. You’ll find phone call and email scripts to copy into your email – all you need to do is add your personal RLS story. Once you send emails or make phone calls please report back to us here.
• Share your story with us. Let us know how RLS impacts your daily quality of life and the importance of access to low total daily dose opioids for your treatment. With your permission, we will use your experience when speaking to legislators to illustrate the impact that RLS has on millions of Americans.
• The RLS Foundation’s advocacy efforts are made possible through gifts from generous supporters. To make a donation, visit www.rls.org or call 512-366-9109.

#VirtualRLSAdvocacyDay #RLSAdvocacy

April 23, 2020

Diet Makes a Difference

Diet can have a significant effect on the symptoms of many chronic conditions, and RLS is no exception. While there is no specific “RLS diet,” your dietary choices can make a difference – and may even help avert a night of unwanted “night walking.”
For many people with RLS, the optimum diet boils down to avoiding four common ingredients: caffeine, alcohol, sugar and salt. Pay close attention to your diet and RLS to determine if any of these ingredients trigger RLS symptoms.
Research studies have shown caffeine to be an RLS trigger. In addition to avoiding coffee and caffeinated tea, be sure to check ingredient lists for hidden sources of caffeine in soda, chocolate, energy drinks and other convenience foods. Another common RLS trigger is alcohol, which disrupts sleep, and in turn exacerbates RLS. Watch for hidden sources of alcohol in products such as mustard, extracts, sauces (e.g., bearnaise or bordelaise) and fondue.
Anecdotally, many people report that sugar, artificial sugars (such as those found in reduced-calorie and weight loss products) or salt increases their RLS symptoms. With salt, it is thought that excess fluid retention may stimulate sensory components in the legs that trigger RLS sensations.
If your healthcare provider determines that a vitamin deficiency is contributing to your RLS, then you may be directed to supplement your diet with iron, vitamin B12 or folate.
In fact, all patients with RLS should have their iron stores checked. Iron is vital to the functioning of the brain’s dopamine system. In addition, brain iron deficiency is a known contributing factor to RLS. For someone with RLS, it’s important to maintain a serum ferritin (blood iron) level above 75–100 micrograms per liter (as measured by a serum ferritin lab test). Lower iron stores correlate to greater severity of RLS symptoms.
If your ferritin level is low, your doctor may ask you to increase your dietary intake of iron through supplements or food. You can find heme iron (animal-based) in beef, poultry, seafood and fish; and non- heme iron (plant-based) in foods such as tofu, beans, fruits, vegetables, and enriched cereal, rice and pasta. To absorb the most iron, avoid supplements or eating foods high in calcium (for example, calcium supplements, dairy products) for two hours before or after taking iron. The tannins in coffee and tea also reduce the absorption of iron. On the other hand, consuming foods high in vitamin C, such as strawberries or orange juice, may enhance your iron absorption.
Your doctor may also recommend intravenous iron therapy or oral iron supplements to treat your RLS. Iron supplements should only be taken under the care and supervision of a healthcare provider.
Another dietary element to consider is magnesium. Magnesium plays a role in regulating protein synthesis, nerve and muscle function. It is vital for the function of gamma aminobutyric acid (GABA) receptors in the brain, which initiate sleep. Low magnesium can cause a variety of health issues, including numbness, tingling, muscle twitching, cramps and muscle soreness.
The recommended daily allowance for magnesium is about 400 mg for adults. You can find magnesium in green leafy vegetables, cereals and, to a lesser extent, foods containing fiber. Foods that interfere with magnesium absorption include carbonated beverages, sugar, high-carb foods, caffeine and alcohol. However, there is little research to show that increasing magnesium via supplement intake improves RLS. Please consult with your healthcare provider before taking any supplements, as moderate amounts of some minerals can cause toxicity.
If you suffer from gastrointestinal symptoms such as gas, bloating, abdominal pain, intermittent diarrhea and constipation, or anemia, then your provider may evaluate you for two disorders that impair iron absorption: small intestinal bacterial overgrowth (SIBO) and celiac disease. The common link between these disorders is gluten. While there is little evidence suggesting that gluten causes or exacerbates RLS, limited research has shown a link between gluten ingestion and changes in bacteria in the gut, which may result in SIBO. For people who have SIBO, the small intestine does not absorb nutrients as it should.
Celiac disease is an immune disorder in which ingestion of gluten can damage the small intestine and limit the absorption of nutrients. If you have persistent low iron levels on lab tests and are taking oral iron supplementation as directed, your doctor may order a specific antibody blood test to check for celiac disease.
If you are diagnosed with SIBO or celiac disease, your doctor my recommend a gluten free diet to increase absorption of nutrients, and iron in particular.
When making dietary changes or starting supplements to improve RLS symptoms, keep in mind that obesity is associated with RLS, and maintaining a healthy weight in general can help to alleviate health issues. Ask your doctor about dietary changes you can make to improve your health – such as following the Mediterranean diet or a gluten-free diet. Be sure to avoid fad diets, which are difficult to maintain and may even cause weight gain in the long run. By taking steps to a healthier lifestyle by getting moderate exercise and eating right, you can make strides toward improving your RLS.