Restless Legs Syndrome Foundation Blog

RLSF Board Chair, Lewis Phelps receives Ekbom Award

The RLS Foundation has named Lewis Phelps as recipient of the 2018 Ekbom Award. This prestigious award honors individuals who have enhanced the lives of people with RLS and made significant contributions to the RLS Foundation. Phelps, who is currently chair of the Board of Directors, has served for a total of 10 years on the board, including two terms as chair, in 2006–2008 and 2016–present.

“We are very grateful for Lew’s years of service to the Foundation and to the RLS community,” says Christopher J. Earley, MB, BCh, PhD, FRCPI, who presented the Ekbom Award to Phelps on Sept. 28 at the Board of Directors annual meeting. Dr. Earley is chair of the RLS Foundation Scientific and Medical Advisory Board. “During Lew’s tenure on the Board of Directors, he has guided the organization through important milestones such as the Opioid Advocacy Initiative, led the restructuring of the organization and built a reserve to ensure adequate funding for research and future organizational needs.”

The RLS Foundation established the Ekbom Award in 1998. The award is named for Swedish neurologist Karl-Axel Ekbom, MD, who published early reports on the disease and first named it restless legs syndrome.

Past recipients include Dr. Christopher Earley (2017), Roberta Kittredge (2016), Dr. Michael Silber (2014), Pickett Guthrie (2008), Dr. Wayne Henning, posthumously (2008), Robert Waterman (2007), Sheila Connolly (2005), Robert Balkam (2003), Cate Murray (2001), Dr. Richard Allen (2000) and Dr. Arthur Walters (1999).

The RLS Foundation is grateful to the Ekbom family for allowing their name to be used for this distinguished award in honor of Dr. Ekbom and his work.

“The Foundation has benefitted greatly from Lew’s two tenures as chair of the board. The early 2000s were a time of economic difficulty in the United States, and Lew’s communications and public relations background helped to guide the organization through key strategic planning. Under his leadership, the board instituted a reserve to ensure adequate resources to fund the Research Grant Program and RLS Quality Care Centers, while maintaining sufficient resources for operational expenses. As executive director of the Foundation, I have worked closely with Lew to reorganize the financial reporting of the organization, reinvigorate our Research Grant Program and expand our network of certified RLS Quality Care Centers. In 2015, the Foundation committed to a Year of Augmentation to raise awareness in the patient, physician and public realms about augmentation, a common, underdiagnosed side effect of dopaminergic therapy. The huge success of this educational outreach led to a second-year expansion of this program. Under Lew’s leadership, in 2017 the Foundation and the RLS community began an awareness and advocacy campaign to ensure access to opioids for severe cases of RLS and to increase federal funding for RLS research.” – Karla Dzienkowski, RLS Foundation Executive Director

“Congratulations, Lew, on this well-deserved award! I feel privileged to have worked alongside you as you advocated for more global awareness of RLS. Your years of service to the Foundation have been an inspiration to all of us. You have been a mentor to me, and I have been grateful for your continued leadership in helping others as we search for a cure.” – Bobbie Kittredge, RLS Foundation support group leader, former board member, and Ekbom Award recipient

“Congratulations to Lew. Over the years, your steady leadership, wisdom, patience, ability to bring people together, sense of humor and gracious demeanor all helped make the RLS Foundation board a strong, functioning group. It was a privilege to work with you during your first tenure as board chair. I especially remember you as a calm, experienced leader who guided us toward a safe resolution when faced with a challenge. This award demonstrates how much we all appreciate the generosity with which you have shared your time and talent.” – Pickett Guthrie, RLS Foundation founding member, former executive director, and Ekbom Award recipient

October 27, 2018

Help, Hope and Treatment

By Brian B. Koo, MD

This is an excerpt from the fall 2018 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.

As anyone who has restless legs syndrome (RLS) knows, RLS can be incredibly disabling, especially when it is severe. Chronic sleeplessness and the recurring need to battle against RLS, night after night, can leave a person feeling helpless.

Helplessness and sentiments that the battle cannot be won, may then lead to hopelessness. Helplessness and hopelessness are both cardinal features of major depressive disorder, so it is no surprise that depression is quite common among those with RLS. In fact, between 40 and 60 percent of people with RLS suffer from a major depressive episode within their lifetime –more than three times the rate for people without RLS. Other anxiety and mood disorders are also common for people with RLS, including panic disorder, generalized anxiety disorder, and dysthymia, a type of near-constant, low-level depression.

If you are suffering from both RLS and depression, there is hope – both are treatable conditions. One possible key to treating your depression is to effectively treat your RLS. If your RLS symptoms are severe or uncontrolled, it is important to seek the care of a healthcare provider who is experienced in treating RLS. In short, this care includes:

• Eliminating factors that trigger RLS, such as alcohol, caffeine and certain over-the-counter and prescribed medications (for a comprehensive list, see the handout RLS Triggers, available at www.rls.org)
• Checking blood iron and ferritin levels, and offering iron therapy if appropriate
• Ensuring proper sleep hygiene
• Assessing for sleep apnea, which is critical if there are symptoms of snoring or breathing irregularities
• Treating RLS with medication

Of course, if depression is severe or persists even if RLS is controlled, it will be important to treat the depression with medication and/or psychotherapy. An experienced and qualified provider, preferably a psychiatrist, should provide this treatment. Simplistically, depression can be treated in three main paths: 1) healthy lifestyle, 2) psychotherapy and 3) pharmacotherapy (drug therapy).

A healthy lifestyle is essential for good mental health. This includes getting adequate aerobic exercise, eating a sensible diet, and engaging in regular social activity. Psychotherapy, whether from a psychiatrist, trained psychologist, social worker or simply someone with a good caring ear, is of utmost importance. Depression is very isolating, and sharing this experience with another person is an important step to ease the burden of isolation.

Finally, pharmacotherapy can also be extremely helpful. It should be noted, however, that pharmacotherapy will be most effective when combined with both psychotherapy and a healthy lifestyle. Medicine is by no means a silver bullet for treating depression, just as it is not a silver bullet for treating RLS.

Each of the potential therapies for depression requires active participation Brian B. Koo, MD from the patient. In addition to getting to the gym and out to social events, the patient should make the effort to find a psychotherapist, psychiatrist or someone with a good caring ear.

Choosing the right medicine to treat depression when one has RLS can be tricky, as many, if not most antidepressant medications can worsen RLS symptoms. This largely occurs through two different pharmacologic mechanisms: 1) by increasing serotonin levels and 2) by blocking histamine receptors.

Most antidepressant medications work by increasing availability of certain brain chemicals called neurotransmitters –particularly serotonin. Unfortunately, increasing serotonin worsens symptoms of RLS. One antidepressant, bupropion (Wellbutrin), works by increasing availability of the neurotransmitters dopamine and norepinephrine but not serotonin, so this antidepressant may be the first thing to try for treating depression in someone who has RLS. Of course, all medicines have side effects, and not all people with RLS will respond to bupropion or be free of side effects. It may be essential to try another antidepressant, even if it increases serotonin and has the potential to worsen RLS.

In general, histamine blockade medications, or antihistamines, are well known to make RLS worse. The prototypical medicine in this class is diphenhydramine (Benadryl). Many antidepressant medicines also have antihistamine-like qualities and should be avoided. These include mirtazapine (Remeron), doxepin (Silenor), amitriptyline (Elavil) and most other tricyclic antidepressants, with the exception of desipramine. These antidepressants are sedating; thus, a provider inexperienced in treating RLS may offer them unsuspectingly to the RLS patient, thinking that they will aid with sleep.

What I tell my patients is, if you are very depressed, even if a medicine may worsen your RLS symptoms, it is very important to treat your depression and try the medication if you’ve already explored nondrug treatments. You should not worry about whether or not the medicine will worsen your RLS. The selective serotonin reuptake inhibitors, or SSRIs, are commonly used antidepressants and can be very helpful, even for people who have RLS. The SSRIs sertraline (Zoloft) and citalopram (Celexa) may be a good start and are less activating, or stimulating, than fluoxetine (Prozac) or venlafaxine (Effexor), which may cause anxiety. In the end, individuals will have very different responses to different antidepressants, so you may need to try more than one medicine to find one that works for you.

When treating RLS with medications, another very important fact to keep in mind is that any medicine that blocks dopamine, particularly antipsychotic medications, should be avoided. Antipsychotic medications are often used by psychiatrists in addition to antidepressants, especially when a patient has insomnia, as antipsychotics are often sedating. These medications worsen RLS, so they should not be used to treat depression or sleeplessness when patients have RLS.

Both RLS and depression are treatable. Unfortunately for some, proper treatment steps are not taken because of problems with healthcare access or other issues. The most serious consequences of the undertreatment of depression are suicidal thoughts and of course, suicide itself. In a recent research study, “Suicidal Thought and Behavior in Individuals with Restless Legs Syndrome,” which was completed at Yale University and will be published in the journal Sleep Medicine, researchers found that 27.1 percent of people with RLS had either suicide plans or attempts over their lifetimes, compared to just 7.1 percent of age-, sex- and socioeconomically matched individuals without RLS (the control group).

The increased suicidal tendencies were not accounted for completely by the higher lifetime rate of depression, which was 65 percent in the RLS group and 23 percent in the control group. This suggests that there is likely something inherent to RLS that predisposes people to thoughts about and attempts at suicide. It should be noted that RLS was severe or very severe in about two-thirds of the RLS group, so this increase in suicidal thoughts and behavior may not apply to all people with RLS, especially if RLS is mild to moderate.

Most people in the RLS group who participated in the study are members of the RLS Foundation. I am very grateful to this community for your commitment to RLS research, and at the same time I have the utmost empathy for those of you who are indeed suffering with both depression and RLS.

Luckily, you have the RLS Foundation as a resource. If your RLS symptoms are not controlled, and especially if you are experiencing depression, please give real consideration to visiting the RLS Foundation Quality Care Center nearest to you. Controlling your RLS symptoms will go a long way toward improving mental health.

For those of you who are suffering with depression and suicidal thoughts, please seek psychiatric and psychotherapeutic care. If you are having thoughts of attempting suicide, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (1-800-273-8255). You are not alone.

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No article written for general distribution can take into account individual differences or circumstances. Readers are encouraged to share this article with their health care providers and discuss any steps taking individual circumstances into account.

OCTOBER 25, 2018

First Patient Meeting in Over a Decade

By Kris Schanilec

Everyone’s RLS is different, there are many ways to relieve symptoms, and medical help is available for those who need it.

These themes and more were on the program at the RLS Patient Symposium on Sept. 29–30, 2018. More than 150 RLS patients, spouses, partners, family members and medical experts gathered in La Jolla, California, for two days of learning about a wide range of topics in RLS treatment and research.

Attendees came from 22 US states and Canada to listen and learn from presentations by top RLS clinicians and researchers. “There was a tremendous exchange of information, and also a surge of connectivity. People who attended were able to meet others like them who live with RLS,” says Karla Dzienkowski, executive director of the RLS Foundation. “There is a great need for knowledge regarding RLS diagnosis, treatment and coping strategies. Attendees came away better informed about the spectrum of treatment options available, and learned practical ways to best cope with the disease and not let RLS stand in the way of doing things that they enjoy.”
The symposium included question-and-answer sessions with the speakers, and a “Dine with the Experts” event. Throughout the symposium, attendees used an app on their tablets or smartphones to ask questions, participate in polls, discuss topics, share photos and connect with each other.

RLS diagnosis and treatment: Every case is different

Many people with RLS share the experience of having suffered for years before receiving a diagnosis. At the conference, J. Steven Poceta, M.D., of the Scripps Clinic Viterbi Family Sleep Medicine Center (a certified RLS Quality Care Center) gave an overview of RLS and the process of diagnosing patients. Dr. Poceta explained that about 90 percent of people with RLS also have periodic limb movements in sleep (PLMS). He also noted that for some individuals, RLS has an underlying cause such as low iron stores in the brain, renal failure, pregnancy, medications or neurological lesions.

RLS often starts in childhood, and many adults who have RLS recall having their early symptoms being misdiagnosed as “growing pains” when they were young. “Growing pains is RLS,” explained Shalini Paruthi, MD, of Saint Louis University, in a presentation on RLS in specific populations. RLS in children may also be mistaken for attention deficit hyperactivity disorder, and kids may not have the language to report their symptoms. About 70 percent of children have significant PLMS. Dr. Paruthi outlined the special considerations for diagnosing and treating RLS in children. She also discussed RLS in pregnant women, people with kidney failure, and people who have depression.

Brian Koo, M.D., director of the Yale Center for Restless Legs Syndrome (a certified RLS Quality Care Center) gave an overview of the approach for RLS treatment in adults. The first step is to make sure the individual is using good sleep practices (sleep hygiene) and to reduce any obvious RLS triggers. If medication is needed, then providers can follow the step-by-step approach provided in the RLS Medical Bulletin (see page 23). Dr. Koo emphasized the importance of keeping an open mind if a physician suggests trying a medication that wasn’t effective in the past. “Just because you’ve tried a medication before and didn’t get a response, does not mean that this medicine does not work to treat your RLS. Other factors may have changed,” said Dr. Koo. In a separate talk, Dr. Koo presented information about PLMS, which occurs in 80–90 percent of RLS patients. The good news, said Dr. Koo, is that many RLS medications are likely to effectively treat PLMS at the same time.

When drug treatments are needed, the mainstay are medications in two classes: dopaminergic agents and alpha-2-delta ligands. Mark Buchfuhrer, MD, of Stanford Sleep Medicine Center (a certified RLS Quality Care Center) gave a comprehensive description of how these medications work in the body, recommended dosages, and side effects such as impulse control disorder. In particular, he described how to prevent and diagnose augmentation, a common side effect of dopaminergic drugs. These medications may at first be very effective for treating RLS, but over time they cause symptoms to occur earlier in the day and spread to other body parts. Healthcare providers and patients alike must be aware of this devastating side effect and prepared to adjust treatment immediately if symptoms change. “Whenever a patient who has been on a stable treatment for at least six months requests more medication, it is augmentation unless proven otherwise,” said Dr. Buchfuhrer.

If patients have tried all other RLS medications and their symptoms are severe and uncontrolled, then opioid medications should be considered. Opioids, despite any stigma they may hold, are very effective for RLS when used in small total daily doses. Christopher J. Earley, MB, BCh, PhD, FRCPI, of the Johns Hopkins Center for Restless Legs Syndrome (a certified RLS Quality Care Center), discussed the types of opioid medications available, how they work in the brain, and their appropriate use in very small doses to treat severe RLS.

Iron therapy, nonmedical treatments, and technology

Several presenters discussed the role of iron in the brain and the importance of addressing low iron stores as a way to improve RLS symptoms. Richard P. Allen, PhD, of the Johns Hopkins Center for Restless Legs Syndrome, walked through the research studies that have demonstrated iron deficiency in the RLS brain. “It is very clear that it is brain iron, not peripheral iron, that is low in RLS patients,” he summarized.

For some people, iron supplements taken orally or by IV infusion can help lessen RLS symptoms. William Ondo, MD, of the Houston Methodist Neurological Institute (a certified RLS Quality Care Center), gave an in-depth presentation on the process of iron regulation in the body. Iron therapy aims to increase iron concentration in the blood so that some iron can be transported to the brain. Dr. Ondo described the types of iron that can be taken for RLS, including a comparison of the different IV iron formulations available.

RLS patients can also look to a variety of alternative therapies. The key is for each individual to identify what triggers their RLS, and what makes their symptoms more tolerable, explained Jacquelyn Bainbridge, PharmD, of the University of Colorado. Examples of triggers include caffeine, nicotine, alcohol, lack of exercise, lack of sleep, extended sitting during long flights or meetings, low iron stores, and certain medications. On the other hand, things that may relieve RLS include stretching, moderate exercise, yoga, massage and other nondrug interventions. Individuals should work with their healthcare providers to explore strategies that may work for them. Dr. Bainbridge emphasized the importance of moderate exercise and nutrition in any RLS treatment strategy. Finally, she provided a comprehensive overview of medical marijuana as a strategy. Her message: more research is needed to optimize the potential use of medical marijuana for RLS.

Jeffrey Durmer, MD, PhD, of Georgia State University, discussed the use of technology to help RLS patients – for example, cognitive behavioral therapy for insomnia (see page 12) and counterstimulation devices. Also, many apps are available that may help improve sleep by calming the mind and relaxing the body. Other technology devices can help create a cool and quiet environment in the bedroom, or enhance circulation in the body. Just as importantly, people must consider the negative effect of technology on sleep. Light-emitting devices reduce melatonin in the body, stimulating wakefulness. These devices should be kept out of the bedroom and should not be used within an hour before sleep, according to Dr. Durmer.

Foundational research in brain chemistry and genetics

Research has shown that several systems in the brain play a role in RLS. Dr. Earley explained the complex interactions that take place in brain cells, or neurons, that involve the neurotransmitters dopamine, glutamate and adenosine. Neurotransmitters are chemicals in the brain that act as messengers to transmit information from one neuron to another, sending the signals to areas of the body. Research has shown that in RLS, these systems are imbalanced. Common RLS medications are designed to work on the dopamine system (ropinirole, pramipexole, rotigotine) or glutamate system (gabapentin, gabapentin enacarbil, pregabalin). Many of these drugs are also used to treat Parkinson’s disease, where these systems are damaged, but the brain chemistry of RLS is different. In RLS, these neurotransmitters systems are imbalanced, and medications aim to correct this imbalance.

In addition, opioid medications such as methadone and hydrocodone act on the morphine system. Recent findings on RLS and the neurotransmitter adenosine has sparked research into a potential new class of drugs to treat RLS by acting on the adenosine system.

Genetics have been found a significant factor in RLS, according to a presentation by Dr. Ondo. He described what is known about genetic patterns in RLS, and the findings of various research studies. In 2007 an RLS Foundation-funded study by David Rye, MD, PhD, at Emory University School of Medicine uncovered the first genetic variant for RLS; as of today, 19 genes have been identified as associated with RLS. While this information does not currently help with diagnosing or predicting RLS, it has helped scientists better understand RLS and provides information for researchers who are working to develop an RLS animal model that could be used to test new potential RLS medications in the future.

A third primary area of focus for RLS research is the role of iron in the brain. James Connor, PhD, of The Pennsylvania College of Medicine took a deep dive into the topic. According to Dr. Connor, it is believed that the RLS brain has plenty of dopaminergic cells, but they are not storing iron as they should. He described what is currently known about how the body transports iron from the blood into the brain, which occurs during iron therapy, and questions that scientists are exploring to better understand this process.

Dr. Earley summarized that the three primary areas of RLS research –neurotransmitter, genetics and iron deficiency – are a starting point for future research. “We’ve made major strides in understanding the pathophysiology of RLS,” said Dr. Earley. “We’ve come an awful long way, and we’ve generated some good foundations for future research.”

Stepping up: The ‘magic secret’ of continuing the RLS Foundation’s progress

The symposium opened with Dzienkowski sharing the organization’s history – from its origins around a kitchen table in 1989, to the 5,000+ membership of today. Lew Phelps, chair of the Board of Directors, closed by stressing the importance of ongoing support for the RLS Foundation’s work in education, treatments and research. “This is a membership organization, and membership is the life-blood of the Foundation,” said Phelps. He encouraged attendees to reach out to anyone with RLS who is not yet a member of the Foundation to invite them to join. The annual fee is only $35 (“a trip to McDonald’s, ” he said), and the Foundation offers scholarships to those who need financial assistance.

Phelps described the Foundation’s advocacy initiative to increase federal funding for RLS research and ensure that people with severe RLS continue to have access to opioid medications for treatment. The Foundation has held two series of meetings this year with members of Congress, the National Institutes of Health and the US Food and Drug Administration. The Foundation has also mobilized a grassroots campaign of letters and visits with elected officials; and in partnership with the Health and Medical Council of Washington, provided input on key legislation. Phelps noted that additional support is needed for this work to continue in the next fiscal year; the “magic secret” of the Foundation’s overall budget is members who step up and make additional contributions. “If you have the means, now is the time,” said Phelps. To make a gift to the RLS Foundation, visit www.rls.org or call 512-366-9109.

October 12, 2018

Thank You for all your support!

RLS Awareness Day on Sept. 23, 2018 was a great success! At the Foundation, all of our social media channels were flooded with the hashtag #MakeADifference4RLS. Photos poured in from across the country of people holding the latest NightWalkers magazine cover with its eye-catching RLS awareness graphic. We invite you to view these images in the Awareness Day 2018 photo album on the Foundation’s Facebook page. Here is a staff favorite!

Many members of the RLS community acted on our “10 Ways to Raise Awareness” list, while some created ways of their own to spread RLS awareness. The Foundation emailed an Awareness Day media packet to support group leaders that included a press release, media talking points, public service announcement and RLS fact sheet. One of our long-time volunteer support group leaders, Mary Lou Mennona, emailed our press release to a number of Florida newspapers to spread the word about RLS. The chair of our Board of Directors, Lew Phelps, shared RLS information and resources through a neighborhood social networking channel. The child of a Foundation member wrote a report about RLS for school and shared a photo of himself holding NightWalkers magazine on Facebook. These are just a few of the many ways our community banded together to educate others about how RLS is a serious but treatable condition. Thank you to all who participated!

Awareness and education are so important. At least 10 million people in the US have RLS, yet only about 5,000 have joined the RLS Foundation as members. It is our hope that by spreading awareness during September – and throughout the year – we can reach people who don’t yet know about the Foundation, and offer them the information and support they need.

Although Awareness Day has passed, each of us can do our part and continue to spread the word: You are not alone! Help is available for those with even the most severe cases of RLS, which includes those experiencing augmentation. And the RLS Foundation offers hope, through programs to raise awareness, improve treatments, and fund research to find a cure. Learn more at www.rls.org.

October 4, 2018

Know Your Triggers

A trigger is a stimulus that causes a worsening of your RLS. Certain foods, beverages, medicines, excessive stress or exercise can be the source of a trigger. Triggers can vary from one person to another and even among members of the same family. For example, caffeine may be a trigger for one person but not another. All individuals with RLS can benefit from learning what triggers their RLS in order to avoid these substances.

Some common RLS triggers reported by individuals with RLS include:

Caffeine
Smoking
Alcohol
Carbohydrates and refined sugars
Foods high in sodium
Extreme exercise
Emotional stress
Supplements
Over-the-counter medications
Prescribed medications

Sleep Habits

Sleep deprivation is known to worsen RLS symptoms. Good sleep habits such as maintaining a cool, dark sleeping environment, removing electronics from the bedroom to limit exposure to blue light and adhering to a schedule of bed and wake times are key to a restful night’s sleep.

Medications

It is important to be knowledgeable about medications that are acceptable for use and those best avoided by individuals with RLS. Many prescribed and over-the-counter medications are known to aggravate RLS symptoms. The RLS Foundation Medical Alert Card lists important information about these medications on a small card that fits into your wallet so you can easily share it with your doctor, hospital and family members. Diphenhydramine (Benadryl) is an antihistamine commonly found in cold remedies and sleep aids; any over-the-counter medication containing diphenhydramine should be avoided. Decongestants like pseudoephedrine (Sudafed) can severely disrupt sleep for those with RLS. Contrary to popular belief, melatonin may worsen symptoms because of the serotonergic properties (serotonin regulates sleep, mood and appetite) found in the medication. St. John’s Wort, an herbal supplement believed to help with depressive symptoms, can cause a flare up of RLS symptoms in some individuals.

Drugs in the antipsychotic (haldol and seroquel), anti-nausea (phenergan and compazine) and antidepressant (mirtazapine) medication classes are often the culprit for a worsening case of RLS. You should never discontinue use of a medication without consulting your healthcare provider, the RLS Foundation’s Medical Bulletin contains suggestions for safe alternatives to these medications to share with your physician. If you have an upcoming surgery, it is helpful to alert your surgical team to which medications they should avoid so they are prepared.

Although certain medications may be hard to avoid, it is crucial to be vigilant about the ingredients in any of the medications you take. No one knows your RLS triggers better than you; not even your healthcare provider. When you are knowledgeable about your own triggers, you can avoid those substances before they worsen your RLS!