Restless Legs Syndrome Foundation Blog

A Wonderful Place to Be

Submitted by: Ann Battenfield, discussion board moderator for the RLS Foundation

It is 3:10 AM. I wanted to go to sleep hours ago. I wonder what went wrong. I am relatively sure I took my medication correctly, but for some reason the sensations and urge to move are reluctant to stop. As they are all too many nights. Some nights I would be pacing; I am lucky tonight and can sit and type. So I head to my favorite place on such nights.

When I was a child, no one would sleep with me. It was a family joke that my bed looked as if a tornado hit it; every morning sheets were pulled out, covers on the floor, and I often was asleep upside down or with my legs dangling over the edge when someone would awaken me. As an early teen, I joined the jumpy leg club that included several family members. Some people learn how to play golf or knit from their grandparents; I learned how to use sewing machine legs when you had to be seated or how to punch my legs with my fist to apply counter stimulation.

I watched my grandmother struggle with her symptoms and medications; I vowed to use non-pharmaceutical options, distraction, and counter stimulation. Yet when I couldn't work anymore and was unable to remember nouns because of the cumulative effect of missing sleep, I finally caved.

I was put on pramipexole to treat the PLMs; my RLS was very mild and did not need any treatment. Soon, though, I had daily RLS. The neurologist kept increasing the pramipexole, I kept getting earlier RLS. For a year, this went on until I did not sleep more than an hour or so a night and the RLS was 24/7. One October, while searching about RLS online, I found the RLS Foundation's newly created Discussion Board. The members welcomed me warmly and I instantly felt better – other people were in a similar situation. Other people were getting help. Other people had uninformed doctors, too.

I read every post on the Discussion Board over the next few weeks, learning as much as I could. Through one of the posts, I found a link to the Southern California Support Group site and to the pages and pages of emails sent to Dr. Mark Buchfuhrer along with his answers. I emailed him immediately and told him about my symptoms. He responded the next day and I finally knew what was wrong. I had augmentation.

On the Discussion Board, I learned the RLS Foundation was hosting the first ever RLS conference; I booked a ticket immediately. I kept reading posts and conversing with others on the Discussion Board. I logged in every day, sometimes two to three times. I went to the conference and I met Drs. Richard Allen, Christopher Earley, David Rye and others, as well as several members of the Discussion Board. I learned of a way to resolve augmentation through the information and support of those wonderful people who were suffering as much or more. I found a way to make the RLS more manageable.

Twelve years later I still log into the Discussion Board every day, sometimes two or three times. Some of the people who were there to welcome me are still members and stop by occasionally. Thousands of others have joined. I have made many friends and hope that I have been paying it forward, as others did with me so long ago. On nights such as tonight, coming to the Discussion Board is like coming home. A home where people support me, where accurate information is available, and where I can sometimes help others with compassion, understanding, and by listening. At 3 AM, that is a wonderful place to be.

RLS Foundation Forges Relationship with UT School of Nursing

On May 17, Executive Director Karla Dzienkowski, RN, BSN, spoke at The University of Texas at Austin's School of Nursing, her own alumni. The school was recently awarded a grant by the National Institutes of Health (NIH) to study restless legs syndrome as a potential cause of restlessness in Alzheimer's patients. Karla congratulated Dr. Kathy Richards and her team on the award, and extended a hand on behalf of the RLS Foundation to support the research endeavor.

“Speaking to the research team was an incredible opportunity to enhance the RLS Foundation’s mission of awareness and education of the disease, as well as to support research that will bring focus on proper diagnosis and treatment of RLS in cognitively impaired seniors," Karla said. "Accurate diagnosis of RLS in cognitively seniors will lead to effective treatment management, improved daily function and overall quality of life.”

Karla distributed informational packets to Dr. Richards and her researchers to deepen their understanding of the disease and available treatment options. In total, Karla gave a 45 minutes presentation followed by a 15 minute question and answer period. Karla and staff also attended a presentation on RLS given by Dr. Donald Bliwise, a healthcare provider from Emory Sleep Center, one of the Foundation's 11 certified RLS Quality Care Centers.

“Cognitively impaired seniors with RLS may have difficulty expressing RLS symptoms causing an inability to sit or lie still during the evening or nighttime hours," Karla said. "This study will ensure senior with cognitive impairments are accurately diagnosed and receive proper treatment to manage their RLS symptoms.”

Dr. Richards is a co-investigator, along with Christine Kovach from The University of Wisconsin-Milwaukee, on the grant "Nighttime Agitation and Restless Legs Syndrome in People with Alzheimer’s Disease." This is a $3.9 million, five year award funded by the National Institute on Aging. Dr. Richards, Kovach and the research team will use the new tool they developed and validated, the Behavioral Indicators Test - Restless Legs.

Where to Find Research Listings and How to Sign Up

Clinical trials are research studies that enlist volunteers to investigate specific health questions. When carefully conducted, they are the fastest and safest way to find treatments that actually work for people. While the RLS Foundation does not conduct clinical trials, we do list RLS clinical trial opportunities on our website and in our quarterly member magazine, NightWalkers. The newest trial we have listed is with Dr. Brian Koo of Yale University , a member of the Foundation's Scientific and Medical Advisory Board.

Researchers at Yale are conducting a study that delves into the emotional stress and depression associated with RLS. Dr. Koo's team is looking to study primary RLS, which occurs in the absence of diseases like Parkinson disease, multiple sclerosis, severe neuropathy, end-stage renal disease, schizophrenia, terminal cancer and others.

The questionnaire study is entirely online, and participants will remain completely anonymous. The questionnaires will take roughly 20 minutes to complete.

A control group is also necessary for this study, so each participant will be asked to identify someone in their life without RLS that also does not have the aforementioned conditions. These individuals will fill out a questionnaire that will take less than 10 minutes.

The RLS Foundation only posts trials that are Institutional Review Board (IRB) approved. If you are interested in participating in any of the studies listed on our website, contact the researcher for that individual study. When you volunteer for an RLS clinical trial, you explore emerging treatment options for yourself while actively contributing to the advancement of RLS research. If you are a researcher who would like to include your study in our listings, please contact us at info@rls.org. All studies must be approved by the IRB to qualify. There is no charge to publish a listing.

Looking for more RLS clinical trials to participate in? Visit clinicaltrials.gov to search for the most up-to-date information on RLS studies in the United States. You can also use this website to search for studies in other areas of interest.

May 8, 2017

Causes and Consequences of Sleep Deprivation in American Teenagers

By Kris Schanilec

An excerpt from the Fall 2016 edition of NightWalkers, the Foundation's quarterly magazine.

The American Academy of Sleep Medicine (AASM) launched the “Sleep Recharges You” campaign in August 2016 to help teens and families learn the facts about sleep, the benefits it brings to health and wellbeing, and the risks associated with not getting enough.

For teenagers in the United States, the sleep situation is “dire,” according to the AASM. The Centers for Disease Control (CDC) reported in April that 69 percent of teens surveyed said they sleep fewer than eight hours per night, on average (1). Yet the AASM recommends they get eight to ten hours of sleep for optimal health.

In June, the AASM published “Recommended Amount of Sleep for Pediatric Populations,” (2) a consensus statement developed by a panel of 13 sleep experts who reviewed 864 published scientific articles related to sleep duration and health in children. The recommendations align with guidelines previously published by the National Sleep Foundation and are endorsed by the American Academy of Pediatrics.

“Many children are not getting enough sleep,” says Shilini Paruthi, MD, who led the AASM panel. “The evidence is there that sleep deprivation has a huge impact on children’s ability to function, and function well during the day … and it’s preventable.”

Risks Associated with Too Little, or Too Much Sleep

In the consensus statement, the AASM reports the behavioral associations found with sleep deprivation, including attention, behavior and learning problems. Lack of sleep also increases the likelihood of hypertension, obesity, diabetes, depression, self-harm, suicidal thoughts and suicide attempts.

Lack of sleep also significantly increases teens’ risk of drowsy driving accidents, according to the AASM. The National Sleep Foundation likens the functional level of a drowsy driver to someone with a blood alcohol content of 0.8%, which is illegal in most states. And there is such a thing as too much sleep, per the studies reviewed by the expert panel. Regularly sleeping more than the recommended hours may be associated with hypertension, diabetes, obesity and mental health problems, according to the AASM statement.

In contrast, sleeping the recommended number of hours is associated with positive outcomes, such as improved attention, learning, behavior, memory, emotional regulation, quality of life, and mental and physical health.

Parents: Be on the Lookout for Sleep Issues

Families should watch for signs and symptoms of sleep deprivation in their teens. These may include problems with grades, attention and behavior at school – even athletic performance, according to Dr. Paruthi.

“Teens with too little sleep are at higher risk of injuries, and their recovery times from injury can be longer…. Sleep deprivation can also affect interpersonal relationships. Parents may see that children may not be getting along with others as well, or even at home,” she says.

When sleep is lacking, teens and their caregivers can take practical steps to get the right amount (see “How much sleep do children need?” at left below). If problems persist, then it’s time for families to make an appointment with a pediatrician – and if they aren’t getting sufficient answers there, then they should seek help from a board-certified sleep specialist.

“It’s very important that parents and clinicians suspecting sleep disorders take it seriously. Children do get sleep apnea, RLS and insomnia, and these can all be treated, even in children,” says Dr. Paruthi. “RLS is an example. A lot of kids are misdiagnosed with growing pains, and yet there are quite effective treatments.”

School Start Times Are A Factor

One of the drivers of sleep issues in teens is a change in circadian rhythm that typically occurs with puberty and shifts the body clock about two hours later in the 24-hour cycle. Yet even as their bodies crave the late nights, teens may still start school at 7:30 in the morning – or for schools that offer “zero period” classes, as early as 6:30 am.

In 2014, the American Academy of Pediatrics issued a policy statement recommending that middle and high schools delay the start of class to 8:30 am or later to “align school schedules to the biological sleep rhythms of adolescents.”

Some studies have shown a benefit from later start times. In a 2014 study involving eight public high schools in three states, schools that delayed their start times until 8:30 saw improvement in students’ academic performance and attendance. In one school, the number of teen car crashes decreased by 70 percent (3).

But a later start time can pose real challenges for communities – for example, in coordinating with bus schedules and family work schedules. The AASM encourages parents to present the recommendations to their local school boards and work with them to set optimal school start times so that teens can get the healthy sleep they need.

1 Wheaton AG, Olsen EO, Miller GF, et al. 2016. “Sleep Duration and Injury-Related Risk Behaviors Among High School Students–United States, 2007–2013.” MMWR Morb Mortal Wkly Rep. 2016 65(13): 337–41.

2 Paruthi S, Brooks LJ, D’Ambrosio C, et al. 2016. “Recommended Amount of Sleep for Pediatric Populations: A Consensus Statement of the American Academy of Sleep Medicine.” J Clin Sleep Med. 12(6): 785–6.

3 Wahlstrom, K., Dretzke, B., Gordon, M., et al. 2014. “Examining the Impact of Later School Start Times on the Health and Academic Performance of High School Students: A Multi-Site Study.” Center for Applied Research and Educational Improvement. St Paul, MN: University of Minnesota.

RLS is believed to afflict an estimated 1.5 million children and adolescents. Visit our website to access resources for teens and kids with RLS.

May 2, 2017

Research Funded by RLS Foundation is Getting Results

By Kris Schanilec

An excerpt from the Winter 2017 edition of NightWalkers, the Foundation's quarterly magazine.

From the seeds of an RLS Foundation grant, researcher Byron Jones, PhD, has grown a genetic reference population of mice that is poised to serve as an animal model for RLS research. In 2004, the RLS Foundation awarded Byron Jones, PhD, an $8,000 grant for a project to start a mouse colony that could be used in research to help identify RLS-related genes. Over the course of 12 years and many mouse generations, Jones has employed a genetic reference colony that not only has helped unearth three possible RLS genes, but also may provide a model for studying RLS and testing treatments. Jones’s program is summarized in a recent review article in Sleep Medicine (1).

“The human genome informs the mouse genome,” says Jones. “It’s partly tongue in cheek, but also serious. … Genetic information in the mouse is, 90 percent or better, the same as in humans.”

“We need to understand how things happen at the cellular, molecular level,” he says. “The drugs we use are superficial – not cures. I want to go after what is causing RLS, and how we can intervene to prevent this [disease]. You need to know how it works before you can cure it.”

BXD40: A Match for RLS Iron Regulation

In the RLS-funded project, Jones (then at Penn State) set out to find an inbred mouse strain whose genetics, when deprived of iron, produced the same biological characteristics (phenotypes) as RLS. He obtained mice known to be different in all kinds of phenotypes, and tested them for differences in their response to iron deficiency. Jones’s team studied over 30 strains of mice to identify a strain called BXD40 that met their criteria. When fed an iron-deficient diet, the BXD40 females showed great loss of iron in the substantia nigra region of the brain, but hardly any loss in the periphery – matching the iron deficiency profile of RLS in humans.

During the project, Jones was invited by Johns Hopkins researchers Christopher Earley, MD, PhD, and Richard Allen, PhD, to collaborate on researching genetics and iron regulation in the brain. Allen showed that BXD40 mice had phenotype characteristics the same as people with RLS – namely, altered sleep patterns and problems with their sensory systems.

This team identified three genes seemingly involved in iron regulation that were not previously known to play a role in RLS – among them, the gene BTBD9.

“We literally stumbled upon these mice, but it was a planned stumbling,” says Jones. “We struck a homer.”

Other scientists like Yuqing Li, PhD, an RLS Foundation grant recipient, at the University of Florida, are using these findings to further explore BTBD9 in genetic models of RLS.

A ‘Perfect Experimental Platform’

Jones subsequently was awarded two R01 grants from the National Institutes of Health – one to continue this work on genetic regulation of iron in the brain, and the other to study the effects of chronic stress on alcohol consumption. His research team (now at the University of Tennessee) has controlled breeding within the colony to create strains with fixed genotype so that all are genetically alike. They have grown the mouse colony, generation by generation, to include over 100 strains of mice. Jones calls this a “perfect experimental platform.” Scientists can now look at the effects of the different genes by going into the colony, choosing mice with a particular genetic profile, and testing them to answer scientific questions. Strains can also be tested in different laboratories to tease out the effects of environmental factors.

“We get remarkable replication of experimental results across all laboratories,” says Jones.

Matching RLS Behaviors and Response to Medication

In recent work, Jones and collaborator Erica Unger, PhD (at Lebanon Valley College in Anville, Pennsylvania), matched the BXD40 model with RLS behaviors. Unger analyzed the 24-hour activity levels of BXD40 mice compared with five other BX strains. The BXD40 showed that with dietary iron deficiency, the BXD40 mice had an increase in activity in the last part of their active cycle and first part of their rest cycle – matching the cycle of RLS symptoms in humans. No other strain showed this circadian change in behavior. Unger also tested this model with RLS medications. Preliminary data showed that treating the BXD40 animals with levodopa or quinpirole significantly reversed the decreased rest time and increased activity.

The result: a potential RLS animal model in the iron-deficient BXD40 mouse which shows the many characteristics of RLS in humans – iron regulation, behaviors, and response to dopaminergic drugs. Jones plans to use this animal model to build on his RLS research.

“We were able to find some animal verifications of what was going on with humans, and that’s always cool,” says Jones. “Now, if we find out how the protein BTBD9 operates in the brain in iron management, then instead of treating RLS with a dopamine agonist, we might find some agent that alters the expression of this gene.”

1 Allen RP, Donelson NC, Jones BC, Li Y, Manconi M, Rye DB, Sanyal S, Winkelmann J. “Animal models of RLS phenotypes.” Sleep Medicine 2016 Sep 2 (Epub ahead of print).

In 2016 the Foundation's Research Grant Program has pledged to increase its RLS research funding to $200,000 annually for up to eight pilot grants. Since 1997 The Foundation has funded nearly $1.6 million in competitive research grants for the study of RLS. Read more about the other funded research here.

Thank You to All of Our Volunteers!

On behalf of the RLS Foundation boards and staff, we want to thank each of our volunteers for all the contributions they have made in supporting the community of RLS sufferers. The compassion and hope they provide has resulted in positive feedback, and we are incredibly fortunate to provide this volunteer program to those who are looking for help, hope, and sometimes just an ear.

The RLS Foundation currently has over 70 support groups and a network of remote support contacts throughout the United States and Canada, not to mention a group of dedicated volunteer discussion board moderators. All of these individuals contribute to achieving our goal of spreading RLS awareness and providing support to those suffering with this disease.

"Spreading the word is crucial to increasing the awareness of this often misunderstood yet complex disease suffered by so many," Southern California RLS Support Group Leader Susan Schlichting said. "This awareness will aid in furthering the Foundation's goal of finding a cure. Volunteering is a way for me to take personal responsibility for my health while facilitating others to do the same."

We are always looking to expand our volunteer network, and to provide integral support and counsel to those in underserved areas. If you are interested in applying to become a support group leader, here are the steps:

1. Learn more about the role by viewing the support group leader description.  
2. Submit an application! 
3. The Foundation will send references a brief questionnaire.
4. Once reference questionnaires are returned, a volunteer manual is provided and a phone interview is scheduled.
5. You then plan your first meeting with the support from the Foundation!

Please submit your completed volunteer application through the volunteer page on our website, by email, or send to:

Restless Legs Syndrome Foundation

Attn: Chiara Corey

3006 Bee Caves Road, Suite D206

Austin, Texas

78746

Click here to find a support group near you. Stay up to date with upcoming meetings in the "Find Support" section of our website, or on our Facebook page.

Practice What You Preach

Submitted By: Mary Lou Mennona, support group leader for Kingsport, Tennessee, and contact for Treasurecoast, Florida

Every time someone calls me regarding RLS, one of the things I always tell them that I have learned from the RLS Foundation research is: Stay away from alcohol, caffeine and sugar after 6 pm and especially before bed. Having these things will make RLS worse.*

So, [we] went on a vacation cruise recently and I got caught up in the fun of the evening. At dinner I shared a glass of wine with others – the one and only I had – I usually don’t drink at all, and then had a luscious, sweet dessert because everything on the ship menu looked so good!

I completely forgot to practice what I preached to others about these things being a “no-no” to RLS victims, and sure enough, I had a miserable night even WITH taking my meds... In fact, it ran right into the next day as we tried to watch a matinee movie on the ship. I usually don’t need my meds during the day, but I was so jumpy and felt like a wound-up spring ready to explode, that I knew I bothered the people near me, so I left the theater and walked and took AN EXTRA med.

Not only that, but I felt horrible all over. Even my hair was tingling and I just didn’t want to do anything! Depression can set in. My nerves throughout my body were vibrating all over and would not rest. Be careful! What the Foundation teaches us through all the research is so true!

I couldn’t believe that I had ignored my own advice! I never have this kind of trouble because I always keep a close eye on what I eat, my exercises, etc.

For those with RLS, don’t ever forget the debilitating effects of sugar, alcohol and/or caffeine, and learn from the information in [the Foundation's] wonderful quarterly newsletter, NightWalkers!

* For more information on what may exacerbate RLS symptoms, read our RLS Triggers publication in the Member Portal of our website.

Had a similar experience? Share it with us on our Facebook page or on the Foundation's discussion board. You are not alone!