Restless Legs Syndrome Foundation Blog

New Support Group Leader in Pennsylvania

The RLS Foundation is pleased to welcome John Alexanderson as the new support group leader in Doylestown, Pennsylvania. Thank you, John, and welcome!

John Alexanderson (Doylestown, Pennsylvania)

I was a Prudential employee in New Jersey for 30 years, and also worked as a school bus driver in Hunterdon County, New Jersey, and Bucks County, Pennsylvania for 10 years. I am currently a radio DJ (Swing and Oldies) on WRDV in Hatboro, Pennsylvania, and WOVV in Ocracoke, North Carolina. My wife and I have two daughters and two granddaughters so far. I am up at 5:20 am most days to swim laps at the YMCA in Doylestown.

I have had restless legs syndrome at least since college, more than 50 years ago. But, like many of us with RLS, I didn't know what it was until about 10 years ago. I found that others are amazingly uninformed about RLS, and I want to spread the word and empower others in the "club" to activism, education, and assurance. I refuse to suffer from RLS, but I realize what a burdensome personal issue RLS can be for we the "Chosen."

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!

An Introduction to Yoga: An RLS Coping Strategy with Many Health Benefits

This is an excerpt from the summer 2017 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!

In 2016, a study conducted by the Yoga Journal and Yoga Alliance found that 36.7 million Americans practice yoga – an 80 percent increase from 2012. Of these individuals, 74 percent have been practicing for five years or less (1). Yoga is an ancient discipline that focuses on meditation, concentrated breathing and body postures. The health benefits of yoga are many. A sustained practice can lead to lower blood pressure, improved lung capacity, relief from chronic neck and back pain, and decreased anxiety.

For those with RLS, stretching can be an important tool in alleviating symptoms. Many RLS patients find that 30 minutes of mild to moderate exercise per day can help keep their RLS at bay. (Note: Avoid intense exercising before bedtime, as that has been known to exacerbate RLS symptoms.) (2) Yoga incorporates both stretching and exercise, and can be a valuable coping strategy to add to one's RLS tool kit.

Yoga has increased in popularity in recent years, making it more accessible than ever. There are now YouTube channels (the above channel, Yoga with Adriene, is just one option of many to choose from) dedicated to providing free online classes – a cheaper and convenient alternative for those with busy lifestyles and a limited budget. However, for the beginner, it is a good idea to initially attend a few in-person classes. This will give you a feel for how you should approach your home practice, and ensure that you are doing the poses properly to avoid injury. Remember to always listen to your body. Everyone is unique and may react differently to various types of stretching. Be particularly careful if you have a chronic condition or injury. You should always consult with your physician before beginning a new fitness regimen, including yoga.

Each individual’s practice is as unique as the person, and can be altered to fit their needs and wants – therein lies the beauty of yoga. Thus, many yogis end their practices with a calming word: "Namaste" – “The light in me acknowledges the light in you.”

For more lifestyle considerations for your RLS, visit our website.

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1. Yoga Journal and Yoga Alliance. January 2016. “2016 Yoga in America Study.”

2. Aukerman MM, et al., 2006. “Exercise and restless legs syndrome: a randomized controlled trial.” J Am Board Fam Med. 19(5): 487–93

New Support Group Leader in Ohio

The RLS Foundation is pleased to welcome Rosemary Stader as the new support group leader in Columbus, Ohio. Thank you, Rosemary, and welcome!

Rosemary Stader (Columbus, Ohio)

My father suffered from restless legs syndrome for a long time. Unfortunately, years ago I did not understand the disease like I do now.

I first experienced RLS in my late 40s. For about eight years it was managed very well by pramipexole (Mirapex). When it started to get worse, I went to several physicians who kept increasing my dosage of pramipexole. No one, including me, knew that I was experiencing augmentation. I was on a high dose of medication, and my RLS was out-of-control. Finally, I found a physician who understood augmentation and knew how to treat me. My symptoms are now about 95 percent under control, and that is good enough for me!

I decided to become an RLS support group leader to advocate for the use of opioids to treat severe cases of RLS and to help educate others about the disease. Everyone with RLS should read the information and listen to the webinars available on the RLS Foundation website at www.rls.org. We must be our own advocates because so many people do not understand the disease.

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!

Giving You A Voice in Washington

On February 22 and 23, members of the RLS Foundation staff and leadership team traveled to Washington, DC, to advocate on behalf of the RLS community.

The delegation met with staff at the National Institutes of Health (NIH), US Food and Drug Administration (FDA), and Congress. Their goals were two-fold: to educate policy makers about RLS and the need to ensure that RLS patients continue to have access to opioid therapies; and to promote funding for RLS research that will advance better treatments and a cure.

"We are focused on making our collective voice heard in Washington to help ensure continued access to opioids as a treatment for individuals with severe cases of RLS," Executive Director Karla Dzienkowski, RN, BSN, said. "We hope to enhance and expand our advocacy efforts so that no one in our community is denied access to this critical treatment option."

For the millions of people in the US who have chronic, unrelenting, nightly RLS symptoms, opioids may offer the only hope for long-term relief, when all other treatment options have failed. If these patients lose access to opioids, they will lose the ability to manage their symptoms so that they can function in their work and social lives.

During the visit to Washington, the Foundation’s partner, the Health and Medicine Counsel of Washington (HMCW) -- a government relations organization that works with nonprofit organizations and companies in the healthcare industry -- organized opportunities for the RLS Foundation to dialogue with lawmakers, policy makers and others who influence regulations related to opioids and biomedical research.

Day 1: Meetings with NIH and FDA

On February 22, the RLS Foundation hit the ground running. Led by Dzienkowski, the RLS Foundation team included Ronald Barrett, treasurer of the Board of Directors; Dr. Christopher Earley, chair of the Foundation's Scientific and Medical Advisory Board (SMAB); Dr. Michael Silber, SMAB member and head of the Opiate Committee; Kris Schanilec, RLS Foundation communications consultant; Peter Herzog, HMCW legislative associate; and Dale Dirks, HMCW president.

"Our role here is to advocate for an open-minded view on the value of opiates in treating RLS," Dr. Earley said. "It is an important treatment option that needs to be continued and maintained, such that patients with severe RLS, if they need to use these vital medications, are not restricted in any way."

Day one included meetings with leaders of the National Heart, Lung, and Blood Institute (NHLBI), the National Institute of Neurological Disorders and Stroke (NINDS), and the program staff at the FDA.

During meetings with the NHLBI and NINDS (both are institutions within the NIH), the RLSF team discussed ways to increase funding for RLS research and explored possible areas for collaboration. The NIH staff were supportive of the Foundation’s goals and offered many suggestions to explore in follow-up. “The fact that you've taken the time to network with us is a powerful statement," said Dr. Nina Schor, who is deputy director of the NINDS. “RLSF has provided vital input to NINDS in our efforts to support research that will decrease the burden of neurological illness.”

The Foundation shared the challenges of RLS patients who face limited treatment options, and the specific areas where research is needed to discover and test new therapies. The team also stressed the need for both clinical trials of opioid medications and long-term studies on their safety and effectiveness for treating severe RLS.

These meetings were important to building new relationships with individuals at the NIH who can champion the RLS cause and influence decisions about RLS research funding at the NHLBI, NINDS and other institutes within the NIH.

At the FDA, the RLS Foundation met with the office of Public Affairs and Stakeholder Engagement (PASE) at the Center for Drug Evaluation and Research (CDER) to discuss the importance of low total daily dose opioids as an RLS treatment option. The Foundation shared stories of individuals in the RLS patient community who have been taking opioid medications for decades and are encountering barriers to accessing their prescriptions. After highlighting information on new opioid treatment guidelines for patients with RLS, the team stressed the importance of safeguarding access to these medications for RLS patients who genuinely need them.

"The FDA members that we met with recognized the possibility of unintended consequences of heavy-handed restrictions on legitimate opioid use and the potential impact on RLS sufferers,” Barrett said. “Hopefully there will be positive outcomes from our meeting."

Day 2: Championing RLS on the Hill

On February 23, the RLS Foundation team met with Congressional representatives on both sides of the political aisle in 16 Senate and House offices. Meetings included staff members from the offices of Senator Joni Ernst (R-IA), Senator John Cornyn (R-TX), Senator Tina Smith (D-MN), Senator Ted Cruz (R-TX), Representative Rod Blum (R-IA), Representative Tim Walz (D-MN), Representative Roger Williams (R-TX), Representative Mike McCaul (R-TX), Senator Dianne Feinstein (D-CA), Senator Kamala Harris (D-CA), Senator Chris Van Hollen (D-MD), Senator Ben Cardin (D-MD), Representative Judy Chu (D-CA), Representative John Sarbanes (D-MD), and Representative Anna Eshoo (D-CA).

In these meetings, the RLS Foundation delegation explained the specifics of RLS and its devastating effects on the daily lives of millions of Americans. The team delivered nearly 100 letters written by RLS Foundation members, and shared stories that they hear from the RLS community about everyday struggles and increasing issues with access to opioid medications. They stressed the limitations of current treatment options, and that there is no cure for this debilitating disease.

In turn, the RLS Foundation asked that the Congressional representatives support the full $36 billion for NIH funding in fiscal year 2018 so that funds will be available for RLS research and related areas. The Foundation also encouraged the inclusion of “sleep research” as a condition eligible for research grants from the Department of Defense, so that RLS researchers will continue to be eligible for funding through this channel.

Finally, the Foundation pointed to the need for a safe harbor for RLS in any upcoming opioid-related legislation, regulations and policies, so that people with severe RLS who genuinely need opioids to manage their symptoms can continue to access these medications.

These talks were a first step in building relationships with each of the Congressional representatives, and an especially strong connection was sparked with one staffer who has a family member with RLS. The Foundation team will continue to contact these representatives in the coming months to educate them about RLS and the needs of the community.

"It was a very productive visit, and it's just the beginning of our advocacy outreach," Dzienkowski said.

This advocacy trip was an enormous stride for the RLS community and an important milestone in the Foundation’s advocacy initiative. And the fight is far from over. With the help of HMCW, the Foundation will continue to increase awareness among policy makers about the serious nature of RLS, the need for individuals with severe RLS to have access to opioids when they are the best treatment option, and the need for more funding for research that will help identify better treatments and a find cure for RLS.

Your US senators and representatives want to hear from you – their constituent. They are there to represent you. Meeting them is not difficult – it is straightforward and simply a matter of telling your story, sharing your experience and asking them to take your needs into consideration. Want to get involved? Visit the advocacy page of the RLS Foundation website to find out how you can take action now!

Managing Your Magnesium

By Norma G. Cuellar, PhD, RN, FAAN

This is an excerpt from the spring 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.

Many persons with RLS ask about the use of magnesium (Mg) to help with symptoms. While research in this area is scant, magnesium can certainly affect other health conditions, thereby affecting RLS symptoms.

What is magnesium?

Magnesium is an element found throughout the body in blood, bones and soft tissues. Magnesium works with over 300 enzymes that regulate protein synthesis, muscle and nerve function, blood glucose control and blood pressure. It plays an important role in hydration, muscle relaxation, energy production and, crucially, the deactivation of adrenaline. In addition, magnesium plays a role in the transport of calcium and potassium across cell membranes, which is imperative in nerve impulse conduction, muscle contraction and normal heart conduction.

What are the symptoms of low magnesium?

Deficiency of magnesium can cause a variety of health issues. Early signs may include loss of appetite, nausea, vomiting, fatigue or weakness. As hypomagnesemia (low magnesium levels in the blood) worsens, signs include numbness, tingling, muscle twitching, cramps and muscle soreness. More serious symptoms include abnormal heart rhythms, coronary spasms (remember, the heart is a muscle) and seizures. Magnesium has a direct effect on calcium and potassium levels, so people who take magnesium should have these electrolytes monitored by a healthcare provider through blood testing.

Low magnesium can result from a variety of causes, including chronic diseases, medication use, poor nutrition, lifestyle choices and pregnancy. Older adults are at added risk because of decreased absorption of magnesium with age and renal insufficiency.

How does magnesium affect sleep?

Magnesium is essential for every stage of sleep because of its neuroprotective effect of slowing the metabolic process, lowering brain temperature, and regulating hormones responsible for sleep onset. Magnesium is also known to cause muscular relaxation, which may help with falling asleep.

There are two hormones that are affected by magnesium levels: cortisol (known as the stress hormone) and melatonin (which helps regulate sleep patterns). Magnesium has been reported to decrease cortisol, thereby promoting relaxation and sleep. Magnesium is vital for the function of gamma aminobutyric acid (GABA) receptors in the brain, which initiate sleep. Sufficient magnesium is required to regulate all hormones in the body. With age, the natural decline of these hormones worsens if there is not enough magnesium.

Where can I find magnesium?

You can find magnesium in foods, some bottled water, dietary supplements and medications (antacids and laxatives). Green leafy vegetables, cereals and fortified foods are good sources of magnesium.

Foods containing fiber usually have some magnesium. Keep in mind that food processing removes magnesium. Many foods drain the body of magnesium and should be avoided, especially by people who have low magnesium levels. These foods include carbonated beverages, sugar, high-carb foods, caffeine and alcohol. Also, some medications will deplete the body of magnesium including diuretics, cardiac medications, asthma medications, birth control medications and estrogen. Calcium and magnesium have an inverse relationship, so if you take calcium supplements, then your magnesium level could be low.

An interesting study was published in 2015 on balneotherapy in older adults. Balneotherapy is the use of mineral water baths to improve health and is usually practiced at spas. After a 12-day balneotherapy program, 52 older adults from Spain showed significant improvement in sleep, mood and depression. The water at Balneario San Andrés was hypothermic (at or above 20 C, or 60 F) hard water of medium mineralization with bicarbonate, sulfate, sodium and magnesium as the dominant ions (Latorre-Román et al., 2015).

How much magnesium should I take?

The recommended dietary allowance (RDA) for magnesium varies by age. Dosing also depends on gender and whether a person is pregnant or breastfeeding. For adults, 400 mg daily is usually safe. If you are using magnesium to help with sleep, you may want to take this before bedtime. For some people, magnesium may be stimulating rather than calming. In this case, you should take magnesium in the morning.

Magnesium can be purchased over the counter. Make sure your healthcare provider knows you are taking magnesium, as it may affect other medications you take. If you take magnesium supplements, you should have your magnesium level checked routinely through blood tests. Magnesium can have significant impact on health outcomes and should be carefully monitored.

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References

Latorre-Román PÁ, Rentero-Blanco M, Laredo-Aguilera JA, García-Pinillos F. 2015. “Effect of a 12-day balneotherapy programme on pain, mood, sleep, and depression in healthy elderly people.” Psychogeriatrics (15): 14–19.

Magnesium Fact Sheet: ods.od.nih.gov/factsheets/Magnesium-Consumer

New Support Group Leader in North Carolina

The RLS Foundation is pleased to welcome Erika Hallerman as the new support group leader in Cary, North Carolina. Thank you, Erika, and welcome!

Erika Hallerman (Cary, North Carolina)

Restless legs syndrome began to chronically affect my life just over three years ago. Confirming a diagnosis was a laborious process that required a great deal of patience and persistence. It is easy to become a victim of this neurological disease. I’ve lost count of the number of sleepless nights and have spent many days wondering why I was chosen to suffer in such a way.

There is currently no cure for RLS, so I knew that learning to live with it was my only option. I tried to find a support group along the way but was unsuccessful. The battle to live a better quality of life was much more difficult than I anticipated. After finally discovering the resources embedded in the RLS Foundation, I decided to start a support group in North Carolina.

The focus of my life has been to find a way to live a more comfortable life and help those who suffer with this condition during the process. Most days are hard work for me, but at the end of the day, the struggle is worth the challenge. I hope to share my strength with those who suffer from RLS.

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!

Dopamine Agonists and the Worsening of RLS Symptoms

Augmentation, as many with restless legs syndrome know, is one of the most common and least understood problems with current RLS treatment. This phenomenon occurs after a patient starts a dopaminergic medication to treat their RLS - and over time it can make symptoms much worse.

Unfortunately, many who initially start on dopaminergic medications say that it is extremely effective in alleviating symptoms, at first. It may take years for augmentation to kick in, or just mere months. Warning signs of augmentation include an increase in symptom intensity, a shorter period of rest or inactivity before symptoms begin, an appearance of symptoms earlier in the day, or a return to what symptoms were like prior to starting treatment (worsening of symptoms). Many also report experiencing RLS symptoms that spread to their arms, trunk or even the face.

"Augmentation is a condition where RLS symptoms start to worsen after initially improving, while on dopamine agonist treatments such as pramipexole, ropinirole, rotigotine, and levodopa," said Dr. William Ondo, director of the Houston Methodist Neurological Institute RLS Quality Care Center. "Since most patients with an urge to move initially respond to properly dosed dopaminergic medicines, augmentation is arguably the biggest practical impediment to successful chronic management of RLS."

In 2015, to combat this gap in information and awareness, the RLS Foundation rolled out a far-reaching "Year of Augmentation" awareness and education program. This included distributing and promoting an augmentation consensus white paper, a collaboration between the International Restless Legs Study Group, the European Restless Legs Study Group and the RLS Foundation. The white paper was distributed by the RLS Foundation to nearly 50,000 US healthcare providers. Foundation volunteer support group leaders were provided with informational "augmentation toolkits" for their meetings. The RLS Foundation also released its first ever long-form video, RLS and Augmentation , which has been viewed by over 10,000 people.

If you think you may be experiencing augmentation, there is help. The Foundation's free What is Augmentation? handout discusses several approaches used to manage augmentation. Prior to making any changes in your treatment plan, it is important consult your healthcare provider to determine if you have augmentation and the treatment approach best suited for you. If you think that your doctor may lack an understanding of RLS, you can find an RLS Quality Care Center or RLS healthcare provider near you. You can also view and share the "Prevention and Treatment of Augmentation" webinar, presented by Dr. Mark Buchfuhrer of Stanford Sleep Medicine Center (an RLS Quality Care Center), from the Foundation's 2017 Webinar Series, available for free on our YouTube channel.

In the days since augmentation first surfaced, significant strides have been made. In 2016, Dr. William Ondo was awarded a $37,000 grant from the RLS Foundation's Research Grant Program to study a new treatment modality for RLS patients who are augmenting. His research team is currently recruiting subjects in Houston, Texas, to study the effectiveness of a new therapy specifically to RLS patients who are currently suffering from augmentation while still taking dopamine agonist medications. Learn more about how to participate here.

If you need additional information on augmentation, please call the RLS Foundation at 512-366-9109 or email info@rls.org and we will be happy to assist you. You are not alone!