Restless Legs Syndrome Foundation Blog

October 11, 2023

Hope for a Better Future

By Daniel Amyx, RLS Foundation Member

My RLS started very gradually – I really didn’t think much about it at the time. About 15 minutes into my meditation, I had this creepy-crawly, gnawing feeling in my legs. I found I could tighten my leg muscles, the feeling would subside, and I could then start my day. This feeling would appear intermittently from time to time, with increasing frequency until about 18 years ago. It became such a persistent and growing problem that I had to stop meditating. Then this issue began to interfere with my sleep. Just when I started to dream, I was suddenly awakened by an uncontrollable leg jerk. That’s when I decided it was time to ask my physician about this problem.

My doctor had the vague idea that I might be suffering from restless legs syndrome (RLS). She performed a blood test to check for iron deficiency, then wrote a prescription for quinine. For those who are unfamiliar with quinine*, it really did help with my RLS, though not consistently. However, I soon discovered that quinine has an insidious and horrifying consequence. Quinine kills bacteria. My intestinal flora was now a decimated wasteland (no pun intended). To say I was a difficult person to be around was a noxious understatement. I may not contract malaria, but I was destined to live my life as a hermit, alone and without human contact.

After about six months, my wife decided to schedule another appointment with my doctor. She said she was concerned for my health; I was not convinced that was her motive. My doctor prescribed ropinirole**, a drug many with RLS have been on. Fortunately for me (and my wife) the drug worked like a dream, literally. I could finally fall asleep provided I took the medication several hours before bedtime. My downfall was that in the evening, I would fall asleep on the couch if I sat still for 10 minutes or so. This was embarrassing when went to someone’s house for dinner and would sit for conversation after the meal, and within a short while I was snoring. Eventually, I let go of my embarrassment, as my wife would explain to our hosts the challenges of my medication. I also discovered that this was a great way to escape conversations that didn’t interest me. I would just close my eyes and willfully drift off.

My next pharmaceutical experience came when I changed physicians. My new doctor suggested I try pramipexole (Mirapex). He felt it could have less of a tranquilizing effect yet still provide the RLS relief I needed. He was right. For seven or eight years, this medication was consistent so long as I took it two hours before bedtime.

But it seems all good things must come to an end. For me, augmentation started subtly. I found I needed a little bit more medication to manage my RLS. I also had to adjust my schedule by taking it a half-hour earlier. Soon the augmentation dramatically changed. On bad nights, not only did my arms and legs violently jerk, but also I could feel it in the core of my body. Some nights while trying to fall asleep on the couch, I would be in tears at 2 or 3 o’clock in the morning. “Horrible” doesn’t begin to describe the problem.

Out of desperation, and following an article in NightWalkers about augmentation, I started to search for an RLS specialist. I called the Norman Fixel Institute for Neurological Diseases at Shands in Gainesville, Florida – a three-hour drive from my home. After a thorough review of my medical history, my newest doctor started me on a regimen of 600 mg of gabapentin, increasing it to 900 mg after six months. At the next appointment, we would discuss the reduction of Mirapex. Within three weeks, I decided I needed to be more aggressive with my therapy by reducing the Mirapex sooner. Through constant communication with my neurologist and my own assertive impatience, we were able to move me out of dopaminergic dependency, replacing Mirapex with 600 mg of gabapentin within eight months of my first exam. Needless to say, I am elated. I no longer need medication before boarding a plane or taking a long road trip. I can stay up late again if I want to. Chocolate, caffeine and alcohol no longer make me twitchy. I feel so much freer than I have in decades.

I understand that each of us is unique, and results will vary, but I stand before you as a positive example of what can be accomplished. You have a whole world of RLS sufferers who are behind you, cheerleading you on to success. Don’t give up! There is always hope for a better future.

Dan and his wife, Lara, keep pretty busy with their successful optical office in Port Saint Lucie, Florida. In his spare time, his hobbies include traveling, bookbinding, jewelry making, and numerous other activities (Attention Deficit Disorder is both a blessing and a curse)! They have a five-year- old granddaughter who lives too far away in Connecticut.

*Quinine has no proven effect on RLS except for a placebo effect. Quinine may kill bacteria but there is no real documentation of negative effects on the intestinal flora. The real concern with quinine (which is why it requires prescription and only approved for treating Malaria and not leg cramps) is its rare side effects of cardiac arrhythmia and blood dyscrasias.

**Ropinirole is no longer considered first-line treatment for RLS.

April 11, 2023

RLS patients are familiar with self-advocacy, often having to play the dual role of patient and educator. Even within the medical community, a lack of understanding of RLS results in delays in proper diagnosis and treatment. Advocacy is a primary activity of the RLS Foundation, focusing on allocating funds to RLS research, increasing physician and public education, and protecting access to effective treatments.

An updated clinical guideline issued by the Centers for Disease Control and Prevention (CDC) in November failed to identify a medical exception for RLS regarding access to opioid therapy, despite exceptions being made for other medical conditions. It is important to recognize the role that low total daily doses of opioids have in providing relief for those with RLS when other treatments are not effective in controlling symptoms.

The RLS Foundation encourages everyone in the RLS community to use their advocacy voices to reach the legislative sector by participating in some of the activities suggested below!

1. Connect with Your Community

We have a network of support groups and contacts across North America that allow you to connect to the entire RLS community. Host a virtual or in-person meeting to write letters and share your RLS story with your congressional representatives. There is power in numbers. Emphasize that, without the explicit mention of RLS in CDC guidelines, state and federal agencies have the potential to deny effective treatment to the RLS community. You can visit www.congress.gov/members/find-your-member to search for your state representative’s contact information.

2. Spread Awareness

Speak to your friends, family, neighbors and healthcare providers about your experience. Educating those around you introduces them to an unfamiliar topic while encouraging them to participate in bringing about change. Social media is a great resource for sharing your message and connecting with people or groups who understand your RLS.

3. Participate in Hill Day

The Foundation hopes to host a 2023 Hill Day – a day dedicated to educating congressional representatives about the impact RLS has on physical and mental health, as well as the barriers to effective treatment. The last in-person RLS Hill Day was in 2019, when 25 members of the Foundation traveled to Washington, DC, for two days of meetings with their legislators.

You can participate in Hill Day by writing letters, submitting videos or joining the RLS Foundation team in Washington to tell your RLS story. Look for our call to action for participants in future emails, blog posts and eFriends newsletter! Learn more about making your voice heard and view the many advocacy resources on our website .

March , 2023

Restless Legs Syndrome: More Than a Sleep Disorder

By Richard R. Mahaffey, RLS Foundation Member

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.

December 20, 2022

Food is Now My Only Medicine

By Janice Hoffmann, former RLS Foundation Board Chair

Restless legs syndrome has different manifestations as well as different triggers. Here is my story that can best be described by the Hippocrates quote: “Let food be thy medicine and medicine be thy food”.

Oakley Township, Macon County, Illinois

It is 1958, and my legs ache so relentlessly, so deeply that tears roll silently from the corners of my eyes. I am swaddled in quilts and blankets, writhing on the floor of our living room trying to get relief from the warmth of the fireplace. My feet touch the Motorola that brings Ed Sullivan into our home every Sunday night. My pillow touches Mama’s feet as she sleeps in the Barcalounger, having no other idea how to comfort me other than sitting vigil. The doctor says “It’s just growing pains”.

It is 1958, and Dad is keeping a cow so that we will have fresh milk, because who among us has heard of a sensitivity to dairy, the only questions being how much cream to separate and whether or not to pasteurize.

It is 1958, and Mama is still baking bread and cookies, because who among us has heard of a sensitivity to gluten?

It is 1958, and my tongue breaks out when I eat tomatoes, but that’s what we grow, so I eat tomatoes. Also from our garden, I eat peas and eggplant, both of which will score high on the food sensitivity tests I take sixty years later.

It is 1958, and although I will not know the name of the disease until I am middle-aged, I will suffer from restless legs syndrome for the next six decades. Over the years I will have dozens of prescriptions, both FDA-approved and orphan drugs, most with significant side effects. The worst include spectacular sleepwalking incidents with cooking sessions and outdoor nocturnal strolls; I will fall asleep while driving.

Jet Blue Flight: JFK-LAX

It is 2013, a month before my 65th birthday, and I am counting in slow motion till takeoff; I fight the panic that can spiral. Thoughtlessly, I had packed my restless legs syndrome drugs, so now they are in the belly of the plane instead of my belly, and I have a death grip on the armrests of 23C in a narrow-body thermos bound for Los Angeles. At the moment, my RLS symptoms themselves are not severe, but my PTSD is. I’m fighting neuro-transmitter flashbacks to the myriad times I’ve had to struggle to sit still. If I move as I want to, as I need to, as my body demands, I will become a caricature of mental illness. I am consumed with the struggle not to fidget. I can think of nothing other than when I can next move, stand, or stretch.

Those night crawlers I used to catch in the rain as a kid? They are now inside my thighs. Their mouths clamp on to my kneecaps before squirming throughout the fascia, wriggling amongst tendons and muscles, slithering amidst vessels and arteries. I breathe deeply, sit up straight, and close my eyes. I put my hands on my thighs and feel the movement, trying to gauge how severe this bout will be so that I can prepare for whatever magnitude on the Richter Scale is coming. I sing along with Carole King: “I feel my thighs, move, under my hands, I feel the sky tumbling down, a-tumbling down.”

My recurring nightmare is that I’ll become one of the stories whispered in RLS support circles: I’ll be the person that becomes so obsessed with the need to move, that I’ll end up on a 72-hour psych hold.

When the seatbelt sign is turned off and I can move about the plane, I will confide in the flight attendant, so she knows she doesn’t have to wonder about me.

Claremont, California

Finally, in 2019, at the age of 71, I am diagnosed with food allergies. If I completely avoid gluten, dairy, eggs; if I eschew caffeine and alcohol; if I only eat organic foods free of pesticides, preservatives, hormones and additives; if I avoid a lengthy list of foods from avocados to zucchini, my RLS will disappear completely. Completely.

I start eating a plant-forward, anti-inflammatory diet in my attempt to cure RLS, the disease I have struggled with since the age of ten, and adjunct health miracles happen: I inadvertently cure five additional chronic conditions for which I have taken medications for years. These days, at age 74, without medication, I no longer have high blood pressure, high cholesterol, reflux (GERD), or clinical depression, and my arthritis is under control.

There are no dietary restrictions that are as bad as living with RLS. I have made peace with sleep and awaken rested for the first time in my life.

Janice Hoffmann served on the RLS Foundation Board of Directors from 2005 through 2011, and was Chair from 2008 through 2010. She is a member of the Ekbom Heritage Society and has been a strong advocate and friend of the RLS Foundation for most of our 30 years.hAfter leaving the working farm of her childhood, Janice had two careers and traveled to over 60 countries. Now she spends her Southern California days walking her dog, writing, and reflecting on things done and left undone.

May 4, 2022

BBC Reel Examines Restless Legs Syndrome

Restless legs syndrome (RLS) is a condition of the nervous system that, in its most serious form, can be highly debilitating. It is thought to affect roughly 10 percent of people worldwide, so how come it is still relatively unknown and poorly understood?

BBC Reel's Howard Timberlake goes in search of some facts and discovers that the condition, and some of the medication used to treat it, throws up more questions than it does answers.

Claudia Trenkwalder, MD, a former member of the RLS Foundation Medical Advisory Board, is featured discussing the genetics of RLS. Also mentioned is the Mayo Clinic Proceedings new guidelines making iron and alpha-2-delta ligands first-line treatment for RLS. The RLS Foundation has made these guidelines open access for free download here.

This short video points out the need for physician education about RLS. At the RLS Foundation we have developed an online physician education webinar series, and we have certified 12 RLS Quality Care Centers staffed by physicians with extensive experience in treating patients with severe RLS.

November 15, 2021

By Steve McCann, former RLS Foundation Board Member

I’m in my 50’s and have been in corporate sales for over 30 years. My diagnosis of RLS should have come when I was five years old; however, back then, members of the medical community did not know nearly as much as they do today.

My path has been both different and similar to most people with chronic RLS – not an earth-shattering revelation. I can remember tapping my left leg during childhood to distract the unpleasant sensations that I would have throughout the day – not every day, but many days. It wasn’t until my early 30’s that RLS became an everyday, chronic experience. Before then, RLS would appear when I had been sitting for long periods, when I was experiencing stress or when I was over-caffeinating myself.

After college, I had to come to grips with RLS, as my career required me to be somewhere specific on a daily basis. I had to be “on” as best I could, since I considered myself an achiever and didn’t want to allow this RLS thing to hamper my career.

Although it didn’t happen as quickly as I would have liked, “it” did happen. The “it” being my acceptance of RLS. For some time, I resisted and sought ways to heal the RLS by myself. And by so doing, I dealt with the symptoms in a way that didn’t help me in the workplace. Being short on sleep and being angry about it was not a great strategy.

Through acceptance, I discovered some ideas that helped me to be at my best in the workplace:

• Optimized Workspace: My RLS sensations occur in my hamstrings. If I sit for too long, they will begin to appear. I am able to bend down on one knee and work on my computer. In the past, I have worked from a standing desk, which is a great idea for people with RLS. I’ve also arranged to walk outside of my office daily while making phone calls. When I have days where I don’t have to make phone calls, I will still take midafternoon walks. This not only provides a positive break for my RLS but also is excellent timing for digesting lunch from two hours before.
• An Earlier Bedtime: What is early? This is subjective, but 10:30 pm works for me. However, the more sleep I am able to get before midnight, the better my sleep and the more rested I feel. This technique is not original. Becoming a student of RLS, I learned from some of the top sleep specialists in the industry that there is something powerful that occurs when we get to sleep earlier rather than later. I will also add that making this a habit was not easy. Getting up early was the key. After a long period of adjustment, getting up early (even when I didn’t want to) created the sleepiness to help me form the habit of getting to bed early.
• Exercise: Wow, this is so key! It is one of the most important habits for a healthy lifestyle, but even more important for people with chronic conditions. Exercise creates endorphins in our bodies that help us feel good. This in turn helps us to be productive, improves our mood and helps us sleep.
• Deep Breathing/Meditation: This is a fantastic habit for anyone wanting to be successful and reach their potential in life. I wonder if I would even have developed this habit had I not had RLS. The good news for me is that I did discover this wonderful habit. It’s the gift that truly keeps on giving. I invest 15 to 30 minutes per day in quiet meditation. I take deep breaths during that time and focus on my breathing. That’s it; that’s what I do once or twice per day. I rarely miss a day. And when I am able to do it twice a day, my day is that much better. By better, I mean clearer of mind, relaxed in my body and my mind. The “restless” part of our RLS condition is not lost on me. I believe that we have things going on in our body for reasons. When they are problematic, like RLS, they often have a message within them. In my case, I was restless in all areas of my life. As I learned to invest time daily in quiet, while breathing deeply and focusing my mind on my breath, over time my thinking and feeling and actions in life took on more peaceful and productive patterns that have served me well.

I am forever grateful for the RLS Foundation. I have benefited more from learning about other people’s RLS experience through the Foundation than from any other available forum. Through the years, I have read NightWalkers and met people who work for, volunteer for or are simply members of the Foundation who have touched and bettered my life in ways I would never have imagined. More than anything else, I learned that I am not alone! Now that is a life lesson worth learning.

December 14, 2018

By Kris Schanilec

New research has found that nerve activity outside the central nervous system may play a role in restless legs syndrome (RLS) symptoms.

In a study published in the Journal of Physiology, scientists report that nerve cells supplying muscles in the legs behave differently in people who have RLS.

Until now, RLS research and treatment has focused largely on processes deep within the brain. First-line RLS treatments target the brain's dopamine and glutamate systems, and brain iron deficiency is also known to be a factor in RLS.

In the new study, the researchers applied electrical stimulus to motor and sensory axons (or nerve fibers) of the median nerve, which is one of the major nerves along the arm. Study participants who had RLS showed higher activity in the motor axons but not the sensory axons, compared to participants who did not have RLS. In their paper, the researchers stated, “Taken together, our results suggest an increase in the excitability of motor units in RLS that could enhance the likelihood of leg movements.”

While the study was small, involving 33 RLS patients and 38 healthy controls, its findings open new avenues for exploration – including medications that could be developed to potentially treat RLS by targeting the nervous system outside the brain and spinal cord.

The research was conducted by the University of Gottingen in German, in collaboration with the University of Sydney in Australia, and Vanderbilt University in the US. RLS Foundation Scientific and Medical Advisory Board member Art Walters is a co-author of the study.

AUGUST 16, 2018

What You Should Know about Iron and RLS

Iron deficiency is a known contributing factor to RLS, and many find some symptom relief from supplemental iron in pill form or by intravenous (IV) infusions.

Healthcare providers have new guidance for treating RLS patients whose iron stores are low. A paper published in the January 2018 issue of Sleep Medicine provides information on how to evaluate RLS patients for low iron, when to offer iron therapy as a treatment, and which type of treatment is most likely to be helpful for individual patients, including children.

“Iron treatment, despite its importance, is not well understood,” says co-author Richard P. Allen, PhD, a researcher at the Johns Hopkins Center for Restless Legs Syndrome. “Iron treatment is complicated by current iron status, and the various oral and IV iron treatments available. Understanding the benefits of IV iron in particular for some patients is relatively new, and this paper provides reasonable guidance for its use that is not available elsewhere.”

Past research has shown that iron deficiency in the brain is an underlying abnormality of RLS. “RLS treatments are basically palliative – they reduce symptoms but do not reduce any basic biological abnormality,” Allen says. “Iron treatment differs. It serves to reduce, for some, a biological abnormality in RLS of reduced brain iron.”

The new report was developed on behalf of the International Restless Legs Syndrome Study Group (IRLSSG). In recent years, a number of research studies on iron for RLS and periodic limb movement disorder (PLMD) have been published. To evaluate these findings, the IRLSSG formed a task force of 12 medical experts in RLS, sleep medicine, neuroscience and other fields, to evaluate published research on the topic and develop a set of recommendations for clinical practice.

This group searched the medical literature and examined 299 related articles. The group’s analysis also included clinical recommendations based on expert clinical opinion. The resulting report includes evidence- and consensus-based guidelines that confirm iron should be a first-line treatment option for RLS. The report also recommends treating people with RLS and iron deficiency with oral iron first, unless there is a medical reason why oral iron cannot be used. The article presents updated treatment algorithms for iron use to treat RLS in adults, and both RLS and PLMD in children.

Importantly, the article delves into the differences among five different IV iron formulations available. “Not all IV iron formulations are alike, and some appear to work better than others,” says Dr. Allen. In addition, specific guidance about when and how to use oral iron is presented, including the recommendation that taking oral supplements once a day is preferable to taking them twice a day.

The article, “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,” is available online at www.sleep-journal.com.

This and other clinical publications are the outcome of dedicated work by members of the RLS medical and scientific community to help healthcare providers worldwide offer the best possible medical treatment to RLS patients.

Iron and RLS: What you need to know

Every individual with RLS should have their blood iron levels (serum ferritin) checked, as keeping ferritin levels mid-range – at 75 micrograms per liter and above – correlates to RLS symptom improvement.

If your iron levels are low, your doctor may recommend ways to replenish your iron stores, including:

• Increased consumption of iron-rich foods, especially meat, fish and liver. Leafy green vegetables also contain iron but may not be broken down adequately by your digestive tract to deliver significant amounts of iron to your body.
• Oral iron supplements. For best iron absorption, iron pills should be taken at night on an empty stomach with vitamin C. They should not be taken with food, milk, antacids, calcium supplements or medications used to treat acid reflux and thyroid.
• IV iron therapy. Your RLS doctor should be aware of the potential for IV iron treatment, and if you are an appropriate candidate, can refer you to a hematology center or RLS program that provides iron treatments for RLS.

Iron supplements should only be taken under the supervision and care of a physician to ensure proper monitoring and help prevent iron overload.

Learn more

To learn more about iron and RLS, please view the webcast “Iron and RLS” or see the handout Understanding Iron and Restless Legs Syndrome, available in the Member Portal at www.rls.org.

JULY 21, 2018

By Kris Schanilec

If you have RLS, you know the relentless leg discomfort that can drive you out of bed at night.

Chances are, you also have two other symptoms: periodic limb movements in sleep (PLMS) – 80 percent of those suffering from RLS display this symptom; and constant wakefulness or “hyperarousal” – people with RLS typically are not sleepy during the day, even if they don’t sleep well at night.

Now, scientists have gained new insight into what causes these symptoms – and new avenues to investigate for treatment.
In 2014 and 2015, Sergi Ferré, MD, PhD, of the National Institute on Drug Abuse (Intramural Research Program) received grants from the RLS Foundation to more closely examine how dopamine and glutamate work in the brain.

Dr. Ferré has found that low levels of receptors of adenosine, a chemical in the brain that regulates neurochemicals, lead to abnormally high levels of glutamate and dopamine. This may be the underlying cause of both PLMS and hyperarousal in RLS. The researchers have also pinpointed a subtype of receptor in the brain – the dopamine D4 receptor – as a new and better target for dopamine drug development.

These findings are the culmination of a four-year study funded by the RLS Foundation, and were recently published in Annals of Neurology¹ and Frontiers in Neuroscience.²

Building on decades of RLS research

Dr. Ferré’s research into RLS builds on decades of science by others on the roles of dopamine and glutamate in the brain for those who suffer from RLS.

It has long been believed that RLS is related to a malfunction in the way the brain uses dopamine. Dopamine is a neurotransmitter (a brain chemical that sends messages) associated with muscle activity and movement. Dopamine medications for RLS act by decreasing the amount of dopamine produced by neurons (brain cells). This has the effect of reducing PLMS. However, use of dopamine medications is limited by the serious side effect of augmentation.

In 2013, scientists at Johns Hopkins identified the involvement of another neurotransmitter – glutamate, which is associated with arousal (wakefulness). Researchers found elevated levels of glutamate in the brains of people who had RLS. The extra glutamate is thought to contribute to PLMS – and to hyperarousal. Many RLS patients take alpha-2-delta medications to control their symptoms by reducing glutamate levels.

In the current study, Dr. Ferré’s laboratory used its first RLS Foundation grant to create an animal model that will help develop and test new RLS treatments. A rodent was fed an iron-deficient diet to mirror the brain iron deficiency found in people with RLS. The researchers invented a method that combines optogenetics and microdialysis. They attached a light-activated protein to specific neurons between the cortex and striatum in the brain of the rodent. When they shone a light on the neurons, this triggered the release of glutamate – which was greater in the animals with iron-deficiency than in animals fed a regular diet.

“The first finding was to show that in the rodent with brain iron deficiency, a well-accepted pathogenetic model of RLS, we were able to show that brain iron deficiency produces increased sensitivity of the cortico-striatal terminals to release glutamate,” says Dr. Ferré. Recently, Dr. Ferré’s team tested this animal model with several RLS drugs: the dopamine agonists pramipexole and ropinirole, and the alpha-2-delta drug gabapentin. The researchers validated that these medications work by counteracting the release of glutamate.

In the process, the team also pinpointed a specific type of protein, called the dopamine D4 receptor, that controls the transmission of glutamate in these cells. This protein may be an effective target for future dopamine medications. “Thanks to this mechanism, we were able to find which subtype of dopamine receptor needs to be targeted,” says Dr. Ferré. “I believe that augmentation is acting on other subtypes. That opens up new hope for therapeutic approaches that probably will have less secondary problems like augmentation and will be more successful.”

Uncovering a new player: Adenosine

If RLS medications work by reversing unusually high dopamine and glutamate levels, how could these high levels be prevented in the first place?

That is the scientific question – and Dr. Ferré feels he may have found an answer in adenosine. Adenosine is a neurotransmitter that regulates the levels of other chemicals; it acts as a brake for the dopamine and glutamate systems in the brain.

Using the animal model, Dr. Ferré’s team found that when there are fewer adenosine receptors (specifically of the A1 subtype), there is increased dopamine and glutamate. This links adenosine to PLMS symptoms.

But there’s more. “Adenosine by the way, regulates the sleepiness associated with prolonged wakefulness,” explains Dr. Ferré. In the cortex, thalamus and other areas of the brain, adenosine modulates homeostatic sleep. Low levels of adenosine receptors could explain the hyperarousal of RLS. “The beauty of the adenosine story is that it connects the hyperarousal symptoms with movement [PLMS],” he says.

“What is really important about our story is that maybe we have found a mechanism – the adenosine system – that links brain iron deficiency to hyperglutamatergic and hyperdopaminergic states.”

This insight can be used to potentially develop RLS treatments that increase the concentration of adenosine to prevent both PLMS and hyperarousal. One such drug is already available clinically: dipyridamole, an antiplatelet drug that protects against stroke and heart attack.

Dr. Ferré’s team validated dipyridamole using the animal model. He also collaborated with Diego García-Borreguero, MD, PhD, director of the Sleep Research Institute in Madrid, to trial the drug in a small group of RLS patients – with promising results. As a next step, Dr. García- Borreguero will coordinate a larger clinical trial in Europe.

Dr. Ferré is also working with several research laboratories to pursue drugs similar to dipyridamole that are more potent and can more easily cross the blood-brain barrier.

“The story now reaches the clinical level,” says Dr. Ferré. “Anything else that could modify the release of glutamate by those terminals could theoretically be good therapeutically for RLS. That’s the case with dipyridamole. We just got results that validate once more our animal model and, in fact, dipyridamole decreases glutamate release by cortico- striatal neuronal terminals.”

Study Results At a Glance

• Using a rodent model of RLS, the researchers showed that people with RLS may have an increased sensitivity in specific brain cells to release dopamine and glutamate.
• They also found that a decrease in the concentration of receptors for adenosine in the brain may cause higher levels of dopamine and glutamate, explaining movement-related RLS symptoms – namely, PLMS.
• Since adenosine also regulates sleep, the low concentration of adenosine may also explain the hyperarousal symptom in RLS.
• Therapies that increase adenosine may help with RLS. Dipyridamole may be one, and others can be developed.
• The researchers also pinpointed a subtype of protein in the brain that can be targeted by dopamine medications, potentially without augmentation as a side effect.

Thanks to the RLS Foundation

Dr. Ferré credits the RLS Foundation with making the last four years of progress in his laboratory possible. “The RLS Foundation research grant has made what we’ve done so far possible. Above all, it has made it possible for a scientist on our team, Gabriel Yepes, to devote his time entirely to this project. And it has been a complete success.”

He also points to the Foundation’s role in cultivating a community of scientists dedicated to solving the mysteries of RLS who support each other’s work. Forty-four researchers have received grants from the RLS Foundation since 1997, and nine have served on the Foundation’s advisory board. Their work spans several continents and many disciplines. “Thanks to the RLS Foundation, I can connect to different specialties quickly and get their input right away,” says Dr. Ferré.

“We are much closer to understanding the mechanisms of RLS. If you understand the mechanisms, that directs your research,” he adds. “We are very close to getting new approaches – not just new molecules that are acting the same way. We are discovering new mechanisms, and that should open a line to new approaches. To hope.”

¹Yepes G, Guitart X, Rea W, Newman AH, Allen RP, Earley CJ, Quiroz C, Ferré S. Dec 2017. “Targeting hypersensitive corticostriatal terminals in restless legs syndrome.” Ann Neurol 82(6): 951–60. doi:10.1002/ana.25104.
²Ferré S, Quiroz C, Guitart X, Rea W, Seyedian A, Moreno E, Casadó-Anguera V, Díaz-Ríos M, Casadó V, Clemens S, Allen RP, Earley CJ, García-Borreguero D. 2018. “Pivotal Role of Adenosine Neurotransmission in Restless Legs Syndrome.” Front Neurosci 11: 722. doi:10.3389/fnins.2017.00722.

JULY 15, 2018

In June, the RLS Foundation visited Washington for a second round of meetings to advocate for research funding and for continued patient access to opioid medications to treat severe RLS.

Led by Executive Director Karla Dzienkowski, the Foundation team met with members of Congress who are on key legislative committees that have jurisdiction over health policy, and with two groups at the National Institutes of Health (NIH).

“Our meetings at Congress and the NIH were very important to moving our advocacy program forward,” Dzienkowski says. “We had the opportunity to meet with Congressional staff who are directly involved in opioid-related legislation. We are also excited to be deepening our relationships at the NIH and taking meaningful steps to advance RLS research.”

The Foundation team met with staff in the offices of Sen. Sheldon Whitehouse, D (RI); Sen. Bob Casey, D (PA); Sen. Elizabeth Warren, D (MA); Rep. Markwayne Mullin, R (OK); Rep. Conor Lamb, D (PA); Rep. Katherine Clark, D (MA); and Rep. Michael Burgess, R (TX).

The discussions centered on the need for a safe harbor for RLS in any upcoming legislation or policy that might restrict access to opioid medications. “Staffers shared that over 50 opioid bills are under consideration,” says Dzienkowski. For the millions of Americans who have chronic, unrelenting RLS, opioid medications taken in low total daily doses can be very effective for controlling symptoms.

The Foundation team also asked legislators to support two research priorities: $2 billion in increased funding for the NIH in fiscal year 2019; and continued inclusion of “sleep disorders” as a category eligible for grants by the Department of Defense.

At the NIH, John Winkelman, MD, PhD, gave a presentation on behalf of the Foundation to the Sleep Disorders Research Advisory Board (SDRAB) of the National Heart, Lung, and Blood Institute. Dr. Winkelman is director of the RLS Quality Care Center at Massachusetts General Hospital and a member of the Foundation’s Scientific and Medical Advisory Board.

The SDRAB is a federal advisory committee that sets the strategy for sleep disorders research at the NIH, and the meeting was an opportunity to highlight the unmet needs of RLS patients. RLS Foundation Board member Linda Secretan is one of two patient advocates on the SDRAB.

In his presentation, Dr. Winkelman discussed limitations of RLS treatments and the importance of research, including his current study to evaluate the long-term use of opioids to treat RLS.

“We had a very positive discussion,” Dr. Winkelman says. “It was important to describe the existing landscape of RLS treatment options, particularly as not everyone at the table was fully aware that many people with RLS continue to suffer for a variety of reasons, such as augmentation. It was equally important to raise awareness about the effectiveness of low total daily doses of opioid medications as a therapy for severe RLS.”

The Foundation also visited the National Institute on Drug Abuse and met with members of the Division of Neuroscience and Behavior, which supports research on drug use and addiction. Dr. Winkelman led a lively discussion on the neuroscience of RLS and how new drug therapies might be developed to treat the disease.

“We’re always looking for new ways to intervene to prevent or treat RLS,” Dr. Winkelman says. “We discussed what we already know about what causes RLS in the brain, and the various ways we might learn more about the neurological pathways involved. We came away with new ideas to explore for research.”

The meetings were coordinated by the Health and Medicine Counsel of Washington (HMCW), a government relations organization with nonprofit and healthcare industry expertise that is partnering with the RLS Foundation to guide its advocacy efforts. In addition to Dzienkowski and Dr. Winkelman, the delegation included Kris Schanilec, RLS Foundation communications; and Dane Christiansen, Dale Dirks and Peter Herzog of HMCW.

How You Can Take Action

The RLS Foundation is working hard to advocate on behalf of the RLS community. The Foundation needs you, an RLS patient or family member, to amplify these efforts by meeting with your legislators. You can meet with your members of Congress at offices in your home state or in Washington. Elected officials want to hear directly from their constituents, and sharing your personal experiences is the best way to educate them about the needs of RLS patients.

The Foundation has resources to help you get started. Contact Peter Herzog at herzog@hmcw.org or visit www.rls.org to learn more.

RLS Advocacy: Our Progress

Since October 2017, the RLS Foundation and its partners at HMCW have:

• Delivered letters to members of Congress from 200+ individuals who responded to a request for personal stories about opioid medications and RLS. 
• Attended Congressional meetings and hand-delivered position letters to committees that are crafting legislation related to opioid medications and/or biomedical research funding. These efforts helped support passage of the FY2018 appropriations bill, securing a $3 billion increase in funding to the NIH. 
• Delivered 40 letters to members of the Senate Defense Appropriations Subcommittee from RLS Foundation members who responded to an Action Alert to support inclusion of “sleep disorders” on the Department of Defense Peer Reviewed Medical Research Program in FY2019. 
• Met with 23 Congressional offices, three NIH institutes, the NIH Sleep Disorders Research Advisory Board, and the U.S. Food and Drug Administration (FDA). 
• Coordinated or supported meetings by the RLS Foundation team and Foundation members with US senators and representatives of 13 states.

Why Are Opioids Needed for RLS?

About 1 in 33 Americans – 3 percent of the US population – has RLS that is severe enough to need daily medical treatment. Unfortunately, treatment options are limited, and FDA-approved medications for RLS often have serious, long-term side effects.

When all other options have failed, opioids at low total daily doses are an established, highly effective treatment option for people with RLS. Clinical experience among experts has not shown the degree of drug misuse, dependency or addiction commonly associated with opioid use to treat chronic pain. The RLS Foundation actively conducts educational outreach to help ensure that healthcare providers know how to diagnose and treat RLS, including appropriate use of opioid medications. For more information, visit www.rls.org.

JULY 12, 2018

Ode to RLS/PLMD

A Poem by Isabella Horsky

Isabella has been an RLS Foundation member since 1998.
I'm sitting in the concert hall, the show will soon begin.
The orchestra is tuning up - the horns and first violin.
They finish the first movement of a Haydn symphony,
When I start feeling tickles, and I know the augury:
Before the measure ends, my leg involuntarily
Jerks upward in a spasm that the person next to me
Can't help but notice. And when twenty seconds pass and then,
In spite of my best efforts, that leg levitates again,
He looks at me as if he thinks that I might be contagious.
To cope with my embarrassment I find it's advantageous
To get a seat right by the aisle. And that is just in case
My PLMD gets so bad, I have to leave the place.
Now Haydn is concluded and they're playing Bach or Lizst,
And I'm outside, lamenting all the music that I've missed.

It's not much different on a plane. Soon after we depart
I feel the same sensations in one leg. It soon will start
To jump and jerk for several seconds, twenty then of respite
Before the next. Whate'er I try, I never can arrest it.
But now I can't get up and stretch. I have to stay and sit,
Because my legs don't understand the seat belt sign is lit.
My neighbor notices my twitch. With look of trepidation
She wonders if, when she gets home, she'll need inoculation.
She looks away, uncomfortable, and then she starts to doze.
I wish my legs would follow suit and grant me some repose,
I eat a snack, recline my seat and try hard to relax.
To no avail. Just then a leg maliciously attacks,
Providing for my body even greater turbulence
Than pilots flying through a wind storm might experience.

So now let's say I stay at home. I have some time that's free.
I'd like to knit, do puzzles or compose some poetry.
But if I want to just be still, to read a book or pray,
My legs soon start to twitch as if they want to run away.
And if, by chance, I think I'd like to take a little nap -
You guessed it: Pretty soon a leg begins to tense, then flap
And jerk. It acts as if it were an independent thinker.
And if I had some booze, I might become a heavy drinker.
I shuffle pillows, toss and turn, then lie this way and that.
The dog jumps off my bed and slinks forlornly to his mat.

Then after supper in the evening is the time I dread
Because I know the old routine when I must go to bed.
I read a gentle novel or I listen to some Bach.
I make a point of never looking over at my clock
To see how many minutes of that twitching might have passed.
I wonder if each spasm will turn out to be the last.

So now of sleep I've been deprived for over 40 years.
The thought could very soon engender bitterness or tears
Of helplessness, frustration. Truth to tell, I can't conceive
Of life without PLMD, but somehow I believe
There is a loving God who will continue to provide
The energy that comes from rest, of which I've been denied.
If daily He did not help me to grow in this conviction,
I'd find it quite impossible to deal with my affliction.
Besides which, spending every day in scowling, grumpy mood
Will use up far more energy than simple gratitude.

Take Action This Summer!

During the summer, elected officials in Washington break for recess and return to their home states. This is an excellent time to meet with and educate them about RLS, how opioid restrictions are affecting access to necessary treatment, and why more RLS research is needed to find a cure.
The Foundation needs you, a valued and essential member of the RLS community, to join in this important work. Your representatives need to hear your personal story about the struggles of living with RLS. These personal anecdotes put a face to the disease and are crucial to share so that legislators are fully aware of the needs of the RLS community when making legislative decisions.
Not sure where to start? It's easier than you think. The RLS Foundation’s advocacy partners at the Health and Medicine Counsel of Washington (HMCW) are available to assist you in planning and implementing these meetings with your representatives. Contact Peter Herzog at herzog@hmcw.org, or keep reading for information on how to get started.

First Steps

Find out who your representatives are. Each US citizen has three representatives in Congress: Two in the Senate, and one in the House of Representatives. You can find out who they are at www.senate.gov and www.house.gov. Just enter your zip code into the search bar in the top right-hand corner of the page to bring up their names. Many of these officials have offices both in Washington and locally, so select the office closest to you.
Reach out to HMCW. Contact Peter Herzog at herzog@hmcw.org, and he will provide you with talking points, a prep packet and other information to help with the meetings. He may also be able to help schedule meetings.
Make an appointment. Call the office of each representative and request an appointment to discuss issues that you and others with RLS are facing. You will likely be given an appointment with a staff member. Keep in mind that you will be meeting as an individual in the community and not as a representative of the RLS Foundation. If you are a Foundation member, please share this during your meeting.
Strength in numbers. You are not alone! Get a group of friends, family members or other RLS patients to go with you to the meeting. You can also find others who have RLS via the Foundation's Discussion Board, support groups and social media channels.

Resources

While you may have many items that you wish to discuss with your representatives, focusing these particular meetings on issues related to RLS will help make the most impact. The goal is to educate your representatives about RLS, how opioid-related legislation affects you and the RLS community, and why more research funding is needed. The Foundation has a variety of resources to help you accomplish this.
Webinar recordings. The Foundation and HMCW have presented two RLS advocacy webinars, available for free viewing in the "Get Involved" section at www.rls.org. These webinars contain excellent introductory information to RLS advocacy efforts and provide an overview of how you can get involved.
“Statement of Principles.” This document (provided in your prep packet) will be your "North Star" during the meetings and help guide your discussion. While you do not need to memorize all of this information, it will provide the basics about RLS, why more research is needed and why opioid therapies are necessary for patients with severe cases of RLS. Available for free download in the "Get Involved" section at www.rls.org.
HMCW. The Foundation has engaged HMCW staff to guide and focus advocacy efforts on behalf of the RLS community. They are available to help! Email Peter at herzog@hmcw.org with any questions or if you need additional information.

During the Meeting

What to expect. Congressional staff should be friendly and courteous. Remember, they work for you! Their goal is to help you in any way they can, and your “asks” will give them an opportunity to do so. You should arrive 15 minutes early for your meeting and dress in business casual attire. Make sure to print the leave-behind materials beforehand (provided by HMCW or available for download at www.rls.org), as you will be giving them to staff members during your meetings. Keep in mind that you will have 15–20 minutes to make your case, so be ready to start right in with the discussion.
Introductions. Start by thanking the staff member for meeting with you. Introduce yourself and talk about where you are from, then introduce everyone in the group. Be sure to keep the introductions brief so that most of your time is spent educating the representative about the needs of the RLS community. Give the staff member the leave-behind materials to reference during your discussion.
Defining RLS. The person you meet with may not know about restless legs syndrome, so it is important to define what it is. Here is a suggested explanation: “Restless legs syndrome (RLS) is a serious and chronic neurological disease. It causes unpleasant or uncomfortable sensations in the legs, together with an uncontrollable urge to move them. These symptoms can cause severe sleep loss, which can be devastating to a person’s health and well-being, and interfere with work, family and social life. There is no cure for RLS, and treatments are limited.”
Tell your RLS story. How do RLS symptoms impact you day-to-day? What challenges does RLS pose for your work, social life and family relationships? Do you have issues accessing medical care? Everyone's RLS is unique, and it's important to focus on your own experience and how RLS impacts your life.
Introduce the “asks.” Your prep packet provided by HMCW will include a sample meeting outline with specific requests, or “asks,” to make of your legislator. Make sure to review these materials before your meeting. You may want to write down some key points on a note card for reference. In the meeting, state the “asks” clearly and concisely, or read them from the document. Staffers will want to learn how their office can help you, and these “asks” are the best way for them to do so.
Responding to questions. The person you are meeting with may have some questions. If you are asked a complex question that you do not know the answer to, that is okay! Be honest. Let the staff person know that you will find the information and get back to them in a follow-up email.
In the event that you are pressed about RLS patients taking opioids, or you feel that someone is questioning or delegitimizing your struggles with RLS, remain calm and respectful. This will be rare, but it is always good to be prepared. RLS is an underdiagnosed condition, and many people are unaware of its prevalence and severity. Remind the staff person that opioid medications are a last resort for patients suffering from RLS, and that guidelines are available for physicians to prescribe them appropriately. Ask that the staff person review the written materials in the leave-behind packet, which includes the clinical guidelines (“The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome”).
Conclusion. Thank the staff member for taking the time to meet with you. The staff member will most likely give you a business card, so be sure to hang onto it for future inquiries. Consider this a relationship-building activity, and plan to follow up with the office a few times a year moving forward. If you brought a camera or phone, ask if you can step outside the office to take a picture together in front of your legislator’s nameplate, to share with the Foundation or on social media. Have fun with it!

After the Meeting

You’ve met with your legislator’s staffer, educated them about RLS, and asked them to support the needs of RLS patients. Give yourself a pat on the back for a job well done!
Make a note in your calendar to follow up by phone or email within two weeks. You can thank the staff person again for meeting with you and provide any follow-up answers to questions. This would also be a great time to plug the Foundation's website at www.rls.org, or share a clip from the Foundation’s YouTube series, My RLS Journey. You can also contact Peter Herzog at herzog@hmcw.org for help with your follow-up messages.


To read more about the Foundation's advocacy efforts, accomplishments, and how you can get involved, visit www.rls.org.

Excerpts from the Q&A

In April 2018, the RLS Foundation hosted the webinar “Legislative Update and Opportunities for Congressional Outreach,” presented by Dane Christiansen, MBA, vice president of the Health and Medicine Counsel of Washington. Mr. Christiansen has worked in government relations since 2004, and specializes in advancing medical research, treatment development, and patient access related policy goals for communities impacted by rare, chronic, and life-threatening medical conditions.

The following questions and answers are based on the webinar. Visit the online Member Portal or the Advocacy page of the Foundation's website to view the full presentation. To see a listing of all of the Foundation's upcoming webinars, visit www.rls.org.

Q: How can I monitor what legislation is being considered in Florida (and other states) and with the federal government?

A: That’s a very good question. If you are looking at what the federal government is doing, there is something called the Congressional Record that you can Google and sign up for that will tell you whenever a bill is introduced or whenever Congress is making a statement on something. But you might feel like that’s drinking from a firehose in terms of how much information you’re getting. There’s also a website called congress.gov which lists all of the bills that get introduced.

Every state is different, and every state has a different process. But the same way that we said that there is a house.gov and there is a senate.gov, where you can find your members of Congress, I know for a fact that that the Florida legislator has a floridasenate.gov and a floridahouse.gov. So, there is a Florida version of that on the local level, and you can similarly use that to identify your local members of Congress. I would encourage anybody to think about approaching their local members of Congress the same way that they would approach their national members of Congress. If the Florida legislator is considering approaching anything, rather than analyzing every bill that comes out, why not take time to write them a letter or send the local office or local state senator an email and say, “I just wanted you to know about RLS and how RLS patients use opioid-based mediations.” The same thing that you do for your members of Congress and your senators, would definitely similarly apply to your state senator and state representative no matter what state you’re in.

Q: What is the most effective form of communication with legislators? A mailed letter, a meeting, a phone call, or an email?

A: Some of you may recall if you did a letter in the past that HMCW helped with, we asked folks to mail those letters to us, and then we would hand-deliver them to Capitol Hill. The reason we asked you to send your letters to us is because you can’t send mail directly to Capitol Hill. Ever since there was the anthrax scare over a decade ago, mail goes to a processing facility in Ohio where it is radiated for a month. If you send your member of Congress a letter, it’s going to show up six weeks later and it’s going to be falling apart. So, if you send it to us, we can hand-deliver it directly to them. Of course, how things go nowadays, calling the office and also emailing the office is by far the easiest way to communicate with these folks. They don’t tend to hand out a lot of staff emails, but if you have that first meeting with the office in the spring or summer, you’re going to get a business card from that person. I would encourage you to occasionally email them to follow up. If you ever wanted to get information to them, or if you ever wanted to send them a letter, an email would be the easiest way to get a hold of them.

Q: To what extent can federal legislation override state laws, or is there a need to also be monitoring state efforts?

A: This is something that interestingly comes up more often these days. Federal law supersedes state law. The states can do as they see fit, but if the federal government passes something, it supersedes anything the state has done. The federal law is the primary law of the land.

Just to give an example, if the states said, “We’re not going to prescribe opioids to anyone,” and the federal government said, “You must prescribe to whomever the doctor thinks the right person to get it,” then the state would have no ability to not prescribe opioids or to advance that rule. The area where this becomes a little more murky is that the states do have latitude to do things wherever the federal government is not clear. So, if the government says, “This is our criteria for regulating prescribing,” there is nothing that would stop a state from adding additional rules on top of that, provided that they didn’t contravene or contradict what the federal government laid out. Anywhere the government is not specifically doing something, the state is allowed to take some form of action.

It is important to stay vigilant and to monitor what your states are doing, but right now a lot of the eyes are on the federal government in terms of what is going to take place with opioid coverage and access policy.

Q: How do you go about scheduling an appointment with a legislator? Do I organize it myself for the meeting and is it best to go as a group?

A: It’s better to go as a group. If you want to personally go into an office, that’s great. We definitely want the office to see somebody from the community. If you have an online support group that you work with, if there are others that the Foundation can connect you with that are local, it is very much in your interest to do this together. There might be a case, where they are four of you and you are from a particular area, like Philadelphia, but each of you may have a different congressperson even though you live near each other. Why don’t all four of you go and visit each those four offices together? That would be the ideal way to do it.

Q: Do you need to have specific proposed regulations to reference when you when you visit your legislator?

A: No, and this is why I would refer you back to the Statement of Principles document. The key thing would be to say, “Hey, we know that there are a lot of competing proposals right now. We know that Congress is taking a very broad look at this. There are many different ideas about how to move forward. We just want you to have facts from the RLS community. This is our Statement of Principles, and we ask you that anything that is moving through the legislative process aligns with these principles so it does not harm the RLS community.” That’s the value of having the North Star of the Statement of Principles document.

Q: Do you really think a carve-out for RLS in opioid legislation is possible?

A: Yes, but it’s very likely that the language will a little bit broader than mentioning a specific condition. For example, we already know that there is a potential carve out now for chronic pain, but they don’t list different conditions that might cause chronic pain. They just say “chronic pain.” Similarly, they will probably have a broader phrase, something like “neurological disorders,” that will capture RLS and also potentially other communities that use opioids in the same way – low-dose, chronic use to disrupt signals coming from within the brain itself. So, definitely yes on a carve out, but probably with the caveat that they might not mention the condition specifically, but instead an overall class of disorders that will capture our community.

Q: Is opioid treatment of RLS becoming more or less accepted by treatment providers?

A: I would say definitely more accepted. The scientific literature is pretty clear on this. One of the reasons that we talk about the importance of funding medical research is that we want a cure, we want better treatment options. But for right now, there is a growing awareness of what the proper treatment protocols are. Part of that is that these scientists read these medical journals and they get continuing education. There have been many journal publications recently and much research put out about how this is the proper care for RLS patients.

Just as an example, when we were doing meetings for Hilde, there was an office that said, “Is this true? Do they really give RLS patients methadone? I don’t know about this.” They said they were going to look at our information. The next day the American Academy of Neurology came to visit them, and Hilde asked, “Is it true that RLS patients take methadone? Is this the right way to do it?” And all of the doctors that were there with the American Academy of Neurology said, “Oh, absolutely. That is the clinical judgment, and that is the way it is currently done.”

So, while there is more scrutiny on opioid prescribing these days because of the tremendous amount of sensitivity to what is going on in the country, in terms of healthcare professionals, there is a growing awareness that this is a proper standard of care.

Q: Do you foresee that additional opioid lobbying in FY 2019 will be necessary to keep opioids as a treatment options for severe cases of RLS?

A: Yes, and I would go back to the “at the table or on the menu” phrase. If we aren’t advocating and we aren’t speaking out, I do believe that there is a real chance that Congress could do something that’s arbitrary or restrictive or harmful. They did already take a step and carve out chronic pain. They have not taken a similar step for RLS, but they need to. And we should have every expectation that they will if we make our voices heard, educate them, and tell them what is needed.

New Connection between Restless Legs Syndrome and Changes in Brain Structure

In a new study published in an online issue of Neurology, researchers at Pennsylvania State University revealed a connection between patients with restless legs syndrome and changes in brain structure, specifically parts of the brain that process sensory information.

"These structural changes make it even more convincing that restless legs syndrome symptoms are stemming from unique changes in the brain, and provide a new area of focus to understand the syndrome and possibly develop new therapies," said study author Byeong-Yeul Lee, PhD, who worked on the research team while at Pennsylvania State University before moving onto The University of Minnesota in Minneapolis. James R. Connor, RLS Foundation Scientific and Medical Advisory Board member, is also an author on this work.

During the study, MRI brain scans were performed on 28 people with severe RLS (who had the disorder for an average of 13 years) and a control group of 51 people without RLS. These scans showed that patients with RLS had an average of 7.5 percent less tissue thickness in the somatosensory cortex, the area of the brain that processes thing like touch, pain, movement, position and temperature.

Interestingly, the RLS patient group also had a decrease in the brain where nerve fibers connect the two hemispheres of the brain. While this study does not prove causation, it does provide a new piece to the puzzle about where to focus RLS research and treatments.

“I think the work is important at two levels,” Dr. Connor said. “The data continue to support that there are differences in the RLS brain --- these types of studies continue to hammer home the idea to the general public and health professional communities and funding agencies that RLS is a biological disorder and not anxiety or something without a biological basis. Additionally, this study is important because it ties imaging to the area of the brain that involves processing sensory information. We don’t know if the RLS symptoms start at this area of the brain or elsewhere in the brain, but for the first time there is a clear change in the brain that interprets sensory input.”

The original Neurology article is available for purchase online.

New Support Group Leader in Texas

The RLS Foundation is pleased to welcome Lisa Marie Smith as the new support group leader in Brazoria County, Texas. Thank you, Lisa, and welcome!

Lisa Marie Smith (Brazoria County, Texas)

Looking back over the years, I realize that restless legs syndrome has been a part of my life since I was a young girl. Simple, every day activities such as car rides, going to the movies, sitting in class, or lying in bed trying to sleep were challenging for me.

I didn’t understand what was happening, why I felt like I wanted to jump out of my skin, why I couldn’t just be still, why no one around me seemed to have these same problems.

Through the years, the RLS slowly progressed to the point that I am now taking medication three times a day just to cope with the symptoms.

There have been times I felt like no one in the world could possibly understand what I was feeling, but through the RLS Foundation I have learned that there are others who suffer just as much, others who understand what I’m going through. I want to help those who are struggling with RLS by providing information, guidance, and resources to help them cope. I want to be an encourager and a support that they can turn to.

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

Interested in becoming a volunteer RLS Foundation support group leader? Visit our website to learn more about the role and how to apply!

Restless Legs Syndrome Blues

A Song by Bjorn Fredrickson

I've been making music with computer software for a long time. I became interested in the blues a couple of years ago, especially the traditional twelve bar blues style. Since I don't have the typical problems described in most blues songs (my baby done left me, ain't got no money and the rent is due, etc.) I went for my main issue, restless legs syndrome, which really does qualify as something to be blue about. So, I wrote this song. And I sang it, even though I'm not much of a singer. All the instruments are sampled instruments which I "played" within the software.

The name of this song sounds like a joke. It's not. I have RLS and the lyrics pretty much describe my life before I finally was put on a medication to control the symptoms.

Click here to listen to Bjorn's original song about his experience with restless legs syndrome.

Can't sleep
Got the creeps
In my legs in my arms
Can't sleep

Can't sleep
Got the creeps
In my legs in my arms
Can't sleep

Starts about a quarter to nine
Lets me be at a quarter to three
Can't sleep
Just can't sleep

Out of bed
And I head
Down the stairs
Walk around all night

Living room
Dining room
I just walk through the house
All night

Gotta keep moving
Gotta keep on moving til
A quarter to three
A quarter to three

Worn out
I'm so worn out
I'm dead tired
All day long
Couldn't sleep

Worn out
I'm so worn out
I can't take this any longer
Can't sleep

Got to take a nap you know
But the boss man he says, "No"
Worn out
I'm so worn out

Got the squirms
Toss and turn
Restless legs
It won't leave me alone

Got the squirms
Toss and turn
Every night all night long
All night

Restless legs syndrome
You say ain't no big thing
You don't know
Man you don't know

The Use of Essential Oils for Sleep

By Norma G. Cuellar, PhD, RN, FAAN

This is an excerpt from the fall 2016 edition of NightWalkers, the Foundation's quarterly magazine. To get your subscription to NightWalkers and to enjoy other benefits, become a member of the Restless Legs Syndrome Foundation today!

Individuals suspecting they may have RLS should consult a qualified healthcare provider. Literature posted by the RLS Foundation, including this blog post, is offered for informational purposes only and should not be considered a substitute for the advice of a healthcare provider. Prior to making any changes to your treatment plan, please discuss treatment options with your healthcare provider.

Aromatherapy is considered an intervention by the National Center for Complementary and Integrative Health and has increased in popularity over the last years.

Use of essential oils is a form of aromatherapy. The National Association for Holistic Aromatherapy has adapted the definition of “essential oil” from the International Organization for Standardization (ISO). ISO, in its Vocabulary of Natural Materials, defines an essential oil as “a product made by distillation with either water or steam or by mechanical processing of citrus rinds or by dry distillation of natural materials. Following the distillation, the essential oil is physically separated from the water phase.” There are other terms synonymously used for essential oils including volatile oils, ethereal oils, aetherolea, and oil of the plant. Since the oil comes from the plant’s fragrance, it is considered “essential.”

In the history of medicine, oils have been used to treat health conditions for thousands of years. A variety of essential oils exist – for example, eucalyptus, juniper, agathosma, menthol, capsaicin, anise and campho. There is no federally approved use of these interventions for a specific illness.

Reported Benefits

Each essential oil has a unique mechanism of action and can be used for different health concerns. Essential oils have been reported to relieve pain, improve mood and promote relaxation. Many research studies have been published on aromatherapy, but the health benefits remain inconclusive. In these research studies, specific compounds that are found in the essential oils have been examined – for example, methyl salicylate, which is found in oil of wintergreen.

The following have been used to promote relaxation and sleep:

• lavender
• bergamot
• vetiver
• sandalwood
• Roman chamomile
• marjoram
• Ylang Ylang
• cedarwood

Used as aromatherapy, essential oils are diffused in the air, heated over a candle flame, or burned as incense to smell. Essential oils can also be used topically and are massaged on the skin. This is another route of delivery of the essential oil and constitutes a different degree of interaction with the body than aromatherapy.

Potential Side Effects

Side effects of essential oils vary. If applied to the skin, contact dermatitis or allergic reactions may occur. Essential oils should never be taken orally because they have high concentrations of active compound and may cause negative side effects like gastrointestinal disturbance. If taken internally, an allergic reaction may occur.

Long-term use of essential oils can affect the liver. Menthol and some others produce a feeling of cold followed by a sense of burning. This is caused by its effect on heat-sensing nerve endings. The use of certain essential oils may result in sensitivity to the sun. Essential oil therapies are essentially low risk, but everyone should be aware of possible side effects.

Aromatherapy and RLS

It is uncertain whether aromatherapy is helpful for treating insomnia, because rigorous research has not been done on this topic. As well, any research on RLS and aromatherapy is limited. Aromatherapy is touted to be beneficial for relaxation, so in that perspective, it might help with symptoms of RLS, but this is not known.

As usual, the use of alternative interventions does not always have the research to identify evidence, but if you are using essential oils and they are working for you with safe health outcomes, then you should continue what is best for you.

Excerpts from the Q&A

In March 2018, the RLS Foundation hosted the webinar “Medications for RLS,” presented by Michael Silber, MB, ChB, a board certified neurologist and sleep specialist at the Center for Sleep Medicine at Mayo Clinic in Rochester, Minnesota, an RLS Quality Care Center. Dr. Silber is an active member of the RLS Foundation's Scientific and Medical Advisory Board, and the current chair of its Opiates Committee.

The following questions and answers are based on the webinar. Visit the online Member Portal to view the full presentation. To see a listing of all of the Foundation's upcoming webinars, visit www.rls.org.

Individuals suspecting they may have RLS should consult a qualified healthcare provider. Literature and webinars by the RLS Foundation, including this blog post, are offered for informational purposes only and should not be considered a substitute for the advice of a healthcare provider. Prior to making any changes to your treatment plan, please discuss treatment options with your healthcare provider.

Q: How can I tell the difference between augmentation and normal, mild, continuing symptoms of medicated RLS (on pramipexole)?

A: It can be difficult to do that, especially if the restless legs are worsening for some other reason, such as an anti-depressant use or iron levels are dropping. With augmentation, symptoms usually move to earlier in the day, and the restless legs recur at night. And usually, if the dose increases, it gets worse rather than better. Those would be the essential characteristics. But yes, it can be a little difficult and sometimes it needs an expert who has worked with lots of restless legs patients to be sure that it really is augmentation, rather than the disorder worsening for some other reason. If RLS worsens with therapy, consult with the provider who is prescribing the drug.

Q: What is the best medication in terms of little chance of developing augmentation?

A: I’m assuming the question concerns people with chronic restless legs who are going to need daily medication. If you want to have the lowest risk of augmentation, it would be one of the alpha 2-delta ligands (gabapentin, gabapentin enacarbil, or pregabalin). I should mention that gabapentin and pregabalin are off-label uses for restless legs and only gabapentin enacarbil has been approved by the FDA for RLS treatment. There may be reasons not to use those drugs – for example, people who are markedly obese or who have active depression. But if your only consideration is what is the lowest risk for augmentation, those are the drugs to use rather than the dopamine agonists. But each patient is different, and we have to balance the different side effects of each category of drug.

Q: What effect, if any, do opioids have on sleep disruption associated with RLS?

A: Opioids can be very effective for sleep disruption associated with RLS. I always ask people when they come back, “Have you got sleepy during the day? Are you okay driving?” And most patients who have had a good response will say, “Doctor, it’s wonderful. I couldn’t sleep at all with restless legs. I’m much more alert taking opioids at night than I was before I took them.” This surprises some physicians because they’re expecting their patients to have severe day-time side effects. With low doses at night, most people will have very nice sleep because we are eliminating restless legs, and opioids are somewhat sedating. Of course, opioids should only be used for RLS refractory to other drug treatments.

Q: What options are there for treating insomnia that don't either lead to dependence or exacerbate RLS symptoms?

A: I presume the question relates to insomnia unrelated to restless legs – patients who have both psychophysiological insomnia (learned insomnia) and restless legs. Our approach to chronic insomnia disorder today would first be to identify contributing causes, such as anxiety, depression, restless legs, chronic pain, sleep apnea, etc. If there are no obvious contributing factors which can better be addressed, then our approach today is cognitive behavioral therapy for insomnia rather than medications. So, we would generally recommend cognitive behavioral therapy, which can be administered by any knowledgeable health provider, including nurses, physicians or psychologists. Today, what’s nice is that it can also be done online. There are various reputable online self-help programs available. For chronic insomnia, we are tending to avoid medications as much as possible.

Q: Is there particular opioid that you prefer to use for patients that don’t get relief from other remedies?

A: There are various choices on the market. It really depends on individual providers and what they are familiar with. For instance, at Johns Hopkins, where they’ve had probably more experience with opioids than anywhere else, methadone is their drug of choice. We’ve tended to start with oxycodone, often in the long-acting form. Controlled release morphine has also been used. I think it depends on what each provider is familiar with. I don’t think that there is a specific rule.

Q: How long (and at what dosages) can an RLS sufferer use an opioid without becoming addicted?

A: The majority of our patients don’t develop long-term addiction, and there are patients that have used them for ten or more years without problems. The dose might slightly increase. Addiction can occur in a small minority of patients, sometimes fairly quickly. However, it’s rare in the low doses we use, especially with taking reasonable precautions.

Q: Is it possible for your whole body to be affected by RLS symptoms?

A: We’ve seen augmentation spread not just to the arms but to the trunk, as well. There are some unusual people with restless legs, who even from the beginning experience it in the back or the pubic area, or sometimes the arms more than the legs. So, yes, it can affect different areas of the body. The vast majority of patients, before augmentation develops, will have it in the legs. If, from the beginning, it’s entirely in some other area of the body, I’m very careful to be sure it is restless legs and not some other disorder mimicking restless legs.

To view the webinar, visit the Member Portal at www.rls.org. If you are not a member of the RLS Foundation, join us! Scholarship memberships are available. Email info@rls.org for more information.