Restless Legs Syndrome Foundation Blog

April 24, 2023

Help! I Think I Have Augmentation and Don’t Know What to Do!

Each day at the RLS Foundation we receive calls from individuals seeking support, information and help with augmentation, a distressing challenge to their RLS treatment.

The good news is that, thanks to ongoing research, augmentation is manageable and treatment options are available. This article provides an overview of augmentation that will help you to understand this unfortunate side effect of treatment and the available strategies to manage it.

What is Augmentation?

Augmentation is a worsening of RLS symptoms that occurs after starting a medication that increases dopamine levels in the brain. These dopaminergic medications include levodopa/carbidopa, ropinirole, pramipexole and the rotigotine patch. At first, medications in this category are very effective, but over time, in a period from six months to several years, RLS symptoms worsen from what they were prior to initiating therapy. The rate of augmentation in people taking dopamine drugs for RLS is 5%- 10% per year; in eight years nearly half of individuals taking dopaminergic medication will experience augmentation.

If an individual with RLS notices symptoms progressively worsening after starting treatment with a dopaminergic drug, then augmentation may be occurring. Simply put, the treatment initially prescribed to alleviate symptoms is worsening the disease.

What are the Symptoms of Augmentation?

Augmentation is an insidious process, and symptoms often go unnoticed. The first indication of an underlying problem is when a patient feels the need to request an increase in medication dose.

All individuals with RLS should recognize the symptoms of augmentation, which include:

• Earlier onset of symptoms, beginning in the afternoon and evening, rather than at bedtime
• Increase in the intensity of symptoms compared to their level prior to starting treatment
• Spread of symptoms to other body parts (trunk, arms or face), rather than being limited solely to the legs
• Shorter period of rest or inactivity before symptoms begin, and treatment medication is not working as long as it did previously
• Loss of effectiveness of the medication at the dose that previously managed symptoms
• Paradoxical response to the medication; in other words, the prescribed medication triggers symptoms rather than alleviating them

Three factors predispose an individual with RLS to developing augmentation:

• Daily administration of carbidopa/levodopa to treat RLS
• Exceeding the maximum dosages approved by the Food and Drug Administration (FDA) for dopaminergic drugs used to treat RLS
• Low body iron stores as measured by a laboratory test of serum ferritin

When someone is experiencing augmentation, aggressive iron supplementation is extremely important. Intravenous formulations effective in raising blood iron storage levels in RLS patients include: Ferumoxytol (Feraheme); low molecular iron dextran (INFeD); ferric derisomaltose (Monoferric) and ferric carboxymaltose (Injectafer). Ferrous sulfate 365 mg pills taken once daily can be used for ferritin levels higher than 75–100 mcg/L or transferrin saturation less than 20%. However, RLS patients with deteriorating symptoms need rapid iron repletion, and oral iron takes months to improve iron status.

If you, as a patient, suspect augmentation, the first course of action is to make an appointment with your healthcare provider; do not stop taking the medications, as prescribed, to manage your RLS.

How is Augmentation Diagnosed?

Before a diagnosis of augmentation can be made, the first step is to schedule an appointment with your RLS healthcare provider for a thorough medical examination to rule out any underlying medical conditions that can exacerbate RLS symptoms. Two additional aspects of RLS that are often confused with augmentation are night-to-night variability of symptoms and exacerbation of symptoms for several days; neither is indicative of augmentation.

Factors that can worsen RLS include the use of sedating antihistamines; all antidepressants except for bupropion or trazadone; low body iron stores or unexpected blood loss due to surgery or undiagnosed gastrointestinal bleeding (ulcers, polyps); commonly reported triggers of symptoms such as caffeine, alcohol, sugar, salt or nicotine; a secondary undiagnosed sleep disorder such as sleep apnea; or rebound (the prescribed medication is not lasting as long as it did previously and disrupts sleep at the end of the sleep cycle in the early morning hours). Two additional factors that can cause an increase in RLS symptoms are stress and changes in activity level, such as immobility due to surgery or changes in exercise, activity or routines.

Augmentation Diagnosis: What’s Next?

RLS is a chronic progressive disease, and it is often difficult to distinguish between disease progression (natural worsening of the disease) and augmentation. Healthcare providers need to be aware of the key indicators of augmentation, which include:

• The patient requests a dose increase of a dopaminergic medication.
• The prescribed dose currently exceeds FDA maximums for the dopaminergic medication.
• The patient reports breakthrough RLS symptoms with an accompanying increase in symptom intensity.
• The RLS involves other body parts (trunk, arms, face).
• Symptoms occur 24/7.
• Symptoms previously appearing only in the evening or nighttime now present earlier in the day, and the patient requests additional medication doses earlier in the day.

There is no test for the diagnosis of RLS augmentation. A thorough medical examination by your healthcare provider who reviews current medications (over-the-counter medications, supplements, prescriptions) to look for drugs that can worsen RLS symptoms, along with a comprehensive history of symptom progression, will help to determine if augmentation is present.

How is Augmentation Managed?

There are four treatment strategies to manage RLS augmentation. Working with your doctor you can determine the approach that best works for you.

The first approach involves changing the dosing schedule to “split-dose” the dopaminergic medication. Half the dose of the medication is given earlier in the day, and the second half is given at the regularly scheduled time; the total dose is not to exceed FDA maximums. If this approach does not resolve symptoms, a second medication from another medication class is added to the treatment regimen. Alpha-2-delta ligand drugs such as gabapentin, gabapentin enacarbil, and pregabalin are added to the treatment plan while reducing the dose of the dopaminergic agent. This approach may be effective, but the alpha-2-delta ligands may not be sufficient to control RLS symptoms in the absence of the dopaminergic agents.

A second treatment option to manage augmentation is to switch from a short-acting dopamine agonist to a long-acting one, but this approach is not recommended by RLS experts. The FDA approved the Neupro (rotigotine) patch for the treatment of RLS, and the oral medications pramipexole ER and ropinirole XL are also available. There are no studies to determine if the change to a long-acting dopamine agonist will reduce or mask RLS symptoms. RLS experts have found that tapering off long- acting dopamine agonists with preexisting augmentation is considerably more difficult. Although symptoms improve in the short term, the underlying augmentation remains, and in time symptoms will return.

The third approach involves adding an opioid medication such as buprenorphine, suboxone, methadone or oxycodone to the dopamine agonist, then tapering down the dopamine agonist. Once the transition from dopamine agonist to opioids has occurred, the dose of the opioid is reduced. If symptoms persist, an alpha-2-delta ligand can be added to the treatment protocol, or it can be used to decrease the dose of opioid used.

The final approach to address augmentation is to slowly decrease the dose of the dopamine medication, without any other RLS treatment, followed by 12 drug-free nights before reassessing the need for further treatment. The RLS Foundation handout Drug Holidays and RLS provides a thorough outline of this approach to the treatment of augmentation.

For patients with severe augmentation who have taken high dopamine medication doses, it may be difficult to completely eliminate these drugs, due to the worsening of RLS upon withdrawal. A small dose of a dopamine drug in combination with an alpha-2-delta ligand and/or opioid may be necessary to manage symptoms. However, it is important to note that, once a dopamine drug is successfully discontinued, reintroducing any drug in the dopamine class will lead to a rapid reappearance of augmentation. In other words, all drugs in the dopamine class are no longer a treatment option.

How Do I Find a Provider to Manage RLS Augmentation?

A provider who is knowledgeable and experienced in treating RLS can be found at an RLS Foundation Quality Care Center. The doctors who practice at these centers are certified RLS providers who treat patients with augmentation and are familiar with the available treatment options. There are 10 RLS Foundation Quality Care Centers in the United States and two in Europe; travel to receive expert care is an option available to individuals with RLS, though not all patients can afford to do so. For a list of RLS Foundation Quality Care Centers, visit www.rls.org/QCC or contact the Foundation.

A second option is to work with the healthcare provider managing your RLS treatment. You will want to determine that they have experience in managing augmentation and are willing to work with you through the entire process. Finding a treatment plan to manage your RLS augmentation is not a one- size-fits-all approach, so finding a provider who is willing to work with you is essential.

The RLS Foundation maintains a list of providers who have expressed an interest in treating RLS, and this may be an option for you. To view this list, visit www.rls.org/Find-a-doc or contact the Foundation. However, these healthcare providers are not certified RLS experts like those practicing at an RLS Quality Care Center.

I Think I Have Augmentation. What Can I Do to Help Myself?

You can do several things before an appointment with your healthcare provider that will give them insight into the state of your RLS. Below is a helpful checklist of items to prepare you for your appointment:

1. Resist the urge to make any changes to your current treatment plan. Your healthcare provider needs to get a clear picture of your RLS symptoms under your current treatment plan; any changes could make this more difficult.
2. Schedule an appointment with your healthcare provider as soon as possible. Because scheduling delays are common, ask whether your name can be added to a cancellation list when you book your appointment. That way, if there is a cancellation, you may be called to fill the slot in the schedule.
3. Make a list of all medications that you currently take (prescriptions, over-the-counter medications, supplements).
4. Make a chronological list of all medications that you have taken in the past for RLS and note why you stopped taking them.
5. Gather copies of all laboratory test results for iron, and any other recent laboratory test results for your provider to review.
6. Complete an RLS Sleep Diary, included in this issue of NightWalkers. The Sleep Diary will provide your healthcare provider with an overview of your sleep patterns and RLS symptoms.
7. Make and bring copies of the following open-access articles from Mayo Clinic Proceedings: “The Management of Restless Legs Syndrome: An Updated Algorithm” (2021) and “The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome” (2018). For copies of these articles, visit www.mayoclinicproceedings.org or contact the Foundation.

For more information about augmentation and RLS, visit the RLS Foundation’s Member Portal on www.rls.org to find educational resource materials. We invite you to attend the Foundation’s monthly webinar series presented by RLS experts and to watch past webinars online to become more knowledgeable about RLS. The Foundation also sponsors four monthly online Virtual Support Group Meetings, so you can connect with others in the RLS community for support, tips and helpful information.

January 25, 2023

My Experience with Iron Infusion

I was 12 years old in the summer of 2002 when I began having trouble sleeping. I would wake up in the middle of the night with creepy, crawly feelings in my legs and an immediate urge to get up and move around. I would walk downstairs to my parents’ bedroom to explain what was happening, only to have the symptoms stop when I got to their room. These episodes occurred throughout the night and led to exhaustion, daytime sleepiness and poor grades at school.

I was evaluated by six doctors in six medical specialty areas who could not pinpoint what was causing my sleep problems – or even give it a name. I was told multiple times that I was experiencing “growing pains” that would eventually go away. Finally, I was diagnosed with restless legs syndrome (RLS), and my family’s primary focus became finding a treatment plan to manage my symptoms. When one person’s sleep is affected, the whole family feels the impact of nightly sleep disruptions.

I tried several conventional RLS treatments, however, none thoroughly relieved my symptoms. My ferritin level was tested and found to be considerably low. Because I was so young at the time, intravenous (IV) iron wasn’t an easily accessible option for me. So, I began a course of oral iron to see if I could raise my ferritin level. For about 14 years, I tried several different oral iron preparations, combinations of oral iron, and different dosages and times of administration, but tests confirmed that none of these treatment strategies was effective in raising my ferritin level above the 75–100 mcg/L target range for individuals with RLS.

My RLS doctor tracked and plotted my ferritin level with successive iron tests. Despite my adherence to oral iron administration guidelines, I eventually reached a point where the iron stores in my body would not meet or exceed mid-level values for ferritin. At that point, my RLS doctor discussed with me the risks and benefits of IV iron, coordinated my care with a hematologist, and provided instructions for IV iron administration for me as an RLS patient.

In 2016, I found a hematologist to administer IV iron as a way to increase my ferritin level. For my first iron infusion, I received low-molecular-weight iron dextran (INFeD). Other formulations of IV iron were used in subsequent infusions.

Iron infusions are relatively easy procedures that, from start to finish, take about two to six hours, depending on the type of iron formulation approved by your insurance company. First, the nurse checks your vital signs and sets up equipment to monitor your pulse and blood pressure. Second, an IV is started, and a test dose of the iron preparation is administered by IV. This is followed by an observation period of up to one hour. During the observation period, the nurse watches to make sure there aren’t any allergic reactions to the test dose. If you do not experience any allergic reactions, the nurse administers the full IV iron dose via a pump to ensure a controlled rate of infusion. Throughout the infusion period, the nurse continues to monitor your vital signs and check to see if you are having any unusual feelings that may indicate a side effect of the therapy. Once the iron infusion is complete, the IV cannula is removed, vital signs are checked for the last time and you are allowed to go home.

Since my first iron infusion, I’ve received this treatment about once every two years. I’ve noticed two main symptoms that usually indicate my ferritin levels are low: feeling more tired during the day and restless feelings in my legs. That means it’s time for another iron infusion.

For me, iron infusions have made a significant difference in helping to increase my ferritin levels, which in turn make my RLS more manageable. I still limit my caffeine intake, exercise daily, and maintain a normal sleep schedule by trying to go to bed and wake up around the same times each day. However, I know that my increased ferritin levels, resulting from iron infusion therapy, have led to a significant decrease in the restless sensations that would otherwise keep me awake at night and seriously affect my quality of life.

For more information see 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.

July 26, 2022

The drug ecopipam shows promise for bringing relief to RLS patients who develop augmentation, a common side effect of dopamine medications.

Stefan Clemens, PhD, HdR, a professor of physiology at East Carolina University, is a member of the RLS Foundation’s Scientific and Medical Advisory Board, and chair of the Foundation’s Research Grant Committee. Regarding the worsening of RLS symptoms known as augmentation, Clemens developed the hypothesis, “Augmentation may be a consequence of increased D1-receptor activation in the nervous system” and that “identifying a new pharmacological target that specifically tackles the long-term side effects of standard dopaminergic treatments in RLS may keep the treatments effective for a longer time or avoid augmentation altogether.”

In other words, a dopamine-1 (D1)-receptor antagonist medication might be a new way to treat RLS and the symptoms of augmentation.

This new concept was first presented by Clemens and his group at the 2015 meeting of the International Restless Legs Syndrome Study Group. In 2016, a small pilot study funded by the RLS Foundation and performed by William Ondo, MD, suggested a positive clinical outcome when patients with RLS augmentation took ecopipam, a D1- receptor antagonist drug.

Clemens obtained a US patent for ecopipam to treat RLS augmentation, and East Carolina University has entered into a licensing agreement with Emalex Biosciences to study this first-in-class medication.

Many regular readers of NightWalkers know the basic facts about RLS treatments and the risks of augmentation, but a bit of history is useful to understand the importance of the new approach. For the 7% to 8% of the adult US population affected by RLS, some 3% need regular daily medication to control their symptoms. The Food and Drug Administration (FDA) has approved three dopaminergic drugs (pramipexole, ropinirole and rotigotine patch) for the treatment of RLS, and for decades these medications were considered first-line therapies for RLS.

Unfortunately, recent research has shown that of the patients on dopaminergic drugs, 7-8% per year develop augmentation so that by 10 years, almost 80% will be augmented and will experience a worsening of their symptoms caused by the drugs themselves. Augmentation typically includes an earlier onset of symptoms, an increase in intensity, a shorter period of rest or inactivity before symptoms start, and the involvement of other body parts (arms, torso or face). There are no FDA-approved medications for the treatment of RLS augmentation.

New clinical guidelines published in 2021 in the Mayo Clinic Proceedings no longer recommend dopaminergic drugs, but rather name iron and alpha-2 delta-ligands, such as gabapentin, first–line treatments for RLS. When a patient’s RLS becomes unresponsive to first- or second–line therapies due to augmentation or other side effects, it is considered refractory (resistant to treatment), and a low-total-daily-dose opioid therapy is the only option currently available. That is why new approaches and new drug therapies are urgently needed.

According to Clemens, ecopipam works by selectively blocking the dopamine D1-receptor subtype, whereas other dopaminergic medications that are used to treat RLS activate other dopamine receptor classes, in particular D3 and D2 subtypes. D3 and D2 receptors mediate inhibitory actions in the nervous system, meaning that they reduce excitability and thus reduce RLS symptoms. Over time, however, those effects wane and the nervous system responds with an upregulation of the D1-receptor subtype, the target of this new drug. In contrast to D3 and D2 receptor-mediated actions, the D1- receptor subtype mediates excitatory action in the nervous system, thus increasing its excitability and increasing the severity of the symptoms. The new drug, ecopipam, is thought to reduce the activation of the D1 receptor and in turn decrease the severity of augmentation symptoms.

The RLS Foundation’s executive director, Karla Dzienkowski says, “RLS augmentation is an untoward side effect of dopaminergic therapy. The potential for a new treatment for this side effect gives hope for the future for those living with the daily impacts of RLS augmentation. It could be a game changer.”

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.

August 18, 2021

The Buchfuhrers — Celebrating Father’s Day as Doctor Team

By Rich Archbold

When Julia Buchfuhrer was growing up, she had a special bond with her father, Mark Buchfuhrer, but, hard as he tried, he could not persuade her to become a doctor like he was.

‘No way, no way,” she told her dad. She was interested in other things, like maybe being a marine biologist. But her dad persisted.

He finally got his wish when his daughter decided to go to medical school and become a doctor, but that wasn’t the end of the story. Julia Buchfuhrer graduated from med school at Western University of Health Sciences, did her residency at UC Irvine and is finishing her fellowship training at the University of Arizona this month to become a specialist in rheumatology.

She then had to make another big decision: Where to work after finishing her fellowship training? She decided to open up her own practice in Downey next month with — guess who — her father, who has been a doctor for almost 40 years and is nationally known for his work with restless legs syndrome.

Julia Buchfuhrer will open the JB Arthritis and Rheumatology Center at her father’s office, 11480 Brookshire Ave., in Downey.

“I am extremely excited to be working side by side with my father,” she said in an interview at his house on the east side of Long Beach last week.

“It’s the best Father’s Day present I could get,” her father said. “She is going to do great work and help a lot of people.”

Julia Buchfuhrer will be the third doctor in her family. Her mother, Laurie Buchfuhrer, practiced family medicine and was an addiction medicine specialist. She worked at Kaiser Permanente and Long Beach Memorial Medical Center. She got leukemia, though, when her daughter was 6 and retired early. Julia Buchfuhrer said her mom would always tell her to select a career she would enjoy.

“I think she was secretly proud that I followed in her footsteps,” Julia Buchfuhrer said. “When I made the Dean’s list in medical school, she told me how proud she was that I was doing medicine and doing it so well.”

Julia Buchfuhrer said she can’t wait to start working with her father. “I have so much respect for him and what he has done in his career,” she said. “I will be learning so much from him.”

Her father, though, sees it as a two-way street. “We will be learning from each other,” he said, sitting next to her in his home.

Mark Buchfuhrer was born on July 11, 1952, in Montreal, Canada. His parents were survivors of the Holocaust. His father, Norbert Buchfuhrer, was born in Poland and was a teenager when the Nazis sent him to a concentration camp in Warsaw. He escaped when he was 22 when he got on Oskar Schindler’s now-famed list. Schindler was a German businessman who saved more than a thousand Polish-Jewish refugees from the Holocaust by employing them in his factories during World War II.

Mark Buchfuhrer’s mother, Rose Katz, meanwhile, spent a year in a concentration camp in Hungary at the end of World War II and was saved. She met Norbert Buchfuhrer, her husband-to-be, on a boat going to Canada. She was a cashier in a hat design company in Hungary, but when she was asked her job skill in Canada, she said she was a hat designer — even though she had never actually designed hats, her son said. “But it turned out she had a skill in hat design and became very well known for her hat designs,” he said. She and her husband married in 1948 and had two children, Mark and his sister, Stephanie, who lives in Montreal.

Norbert Buchfuhrer died when he was 73, his wife died when she was 93.

“My mother used to tell me, ‘I’m going to live a long life to show you that you can, too,’” her son said. In high school, Mark Buchfuhrer said he wanted to be a scientist. “But my mother kept telling me to be a doctor, a doctor, a doctor. She said I could be successful as a doctor and take that skill anywhere and not be restricted to one place. She told me that 10,000 times.”

He finally listened and went to medical school at the University of Ottawa, graduating in 1977 and becoming the first in his family to become a doctor. He became a specialist in pulmonary medicine, treating diseases of the respiratory system. “My mom was overjoyed,” he said. He did his residency in Toronto where he met his wife-to-be, who was in her fourth year at medical school. They got married on June 22, 1980. They spent their honeymoon on an eight-day drive from Toronto to the Harbor-UCLA Medical Center in Torrance, where Mark had a fellowship in pulmonary medicine.

The couple spent a weekend in Seal Beach and liked the area so much they decided to live in Long Beach; they bought a condo in Marina Pacifica in Long Beach before buying a house on the east side near Long Beach State University, where they have lived for 37 years.

They have three children: David Buchfuhrer, 37, a software engineer; Michael Buchfuhrer, 35, a business owner; and Julia Buchfuhrer, 32. Mark Buchfuhrer was on the attending staff at various places, including Stanford University Medical Center, Harbor City; Downey Community Hospital (now PIH Health, Downey); USC Medical Center, Long Beach Community Hospital, and Good Samaritan Hospital, Los Angeles. He opened up his private practice in Downey in 2001 with his office now at 11480 Brookshire Ave. He became an expert, one of the few in the United States, in treating restless legs syndrome, which is a disorder causing pain and sleepless nights. The primary symptom of RLS, he said, is an urge to move one’s legs when trying to rest or relax. “This urge is often so compelling that RLS sufferers may have to walk, shake their legs, ride a bicycle, massage their legs, or stretch to alleviate their discomfort,” he wrote in a clinician’s manual on RLS. He has become beloved by his patients. “There isn’t a week that goes by without a patient telling me how my treatment has saved or changed their life,” he said.

Meanwhile, his sons and daughter were growing up. Julia Buchfuhrer graduated from Hill Middle School, which has since been converted to the Sato Academy of Math and Science, before attending Poly High School where she became an outstanding student. In eighth grade, she won first place in the Press-Telegram Halloween Scary Story Contest.

She also became an excellent soccer player and was a member of the Belmont Shore Women’s Rugby team. “I got injured a lot playing rugby, but that’s where I saw how doctors could help people get better,” she said. “I liked the idea of helping people medically.”

She also became a huge fan of bike riding, which her father also liked. “We cycled together all the time,” she said. “We rode with a group in Irvine called the Orange County Rebel Riders. “We went on mountain rides and on past Father’s Days, we would go cycling for miles and come home for a family get-together.”

Julia Buchfuhrer had a scare one time when her bike hit a rock on an 8- mile trail in Rock Creek, 30 miles south of Mammoth Lakes. “I got thrown off my bike and suffered a nasty gash in my forehead,” she said. “Blood was gushing all over. Vultures were even circling in the sky. My dad bandaged me up, and hikers came by who helped us.” She still has a visible scar above her left eye.

And when she was 30, she got breast cancer, and she had a double mastectomy and reconstructive surgery. But she is a fighter. “The hardest part was enduring three-to-four months of chemotherapy, but I missed only two-to-three days of training,” she said.

Julia Buchfuhrer said she loves doing things with her father and listening to him tell stories. “He is a great storyteller. We have become great friends.”

“She’s my buddy,” her father said, putting his arm around her. “I’m so happy she’s here for Father’s Day.”

Julia Buchfuhrer said she will fly back to Arizona this afternoon, Sunday, June 20, to finish her medical training and won’t have time to do her traditional Father’s Day bike ride with her dad. But she will celebrate Father’s Day at a family get-together.

She is also already planning a few weekend trips to Mammoth Lakes in August to hike and make up for some lost bike rides. “Since we are both our own bosses, we can schedule as many of these trips together as we like,” she said with a grin.

Reprinted with permission from Rich Archbold, Press-Telegram. All rights reserved. Visit rarchbold@scng.com for more information.

https://www.presstelegram.com/2021/06/20/rich-archbold-the- buchfuhrers-celebrating-fathers-day-as-doctor-team/

May 5, 2021

By Stefan Clemens, PhD, HdR, Chair, Research Committee, RLS Foundation Scientific and Medical Advisory Board

The RLS Foundation’s Research Grant Program is a return-on-investment initiative; member contributions lead to advances in the understanding of RLS and to potential improvements in treatment options. The RLS Foundation established the Research Grant Program in 1997 under the leadership of Bob Waterman (Board of Directors member with two terms as Board Chair, 1995–2005 and 2011–2019). The idea was to award small research grants seed funding to provide the critical data necessary to secure additional research grants from national and international agencies.

The first research grant was awarded in 1999. Since then, an average of about two projects per year have been funded. To date, 48 grants have been supported by the RLS Foundation, totaling nearly $2 million in research funding. These 48 projects were carried out by 41 clinicians and researchers. Their findings have led to over 25 publications in a wide range of neurological and neurobiological journals and books. More importantly, the seed-funding grants provided by the RLS Foundation have led to over $10 million in additional grant support from other sources, thereby further strengthening research in the field of RLS.

Research grant applications are first reviewed by the RLS Foundation’s Scientific and Medical Advisory Board (SMAB); details about its members can be found at www.rls.org/SMAB. The SMAB consists of both clinicians and basic science researchers who are responsible for monitoring RLS medical and scientific research issues and bringing their respective expertise to the grant review sessions. In addition to reviewing research grant applications, the SMAB reviews all Foundation publications and advises the RLS Foundation’s Board of Directors on issues of medical or scientific interest and importance. A group of external specialists approved by the SMAB has agreed to serve as grant reviewers to strengthen the rigor of the research supported by the RLS Foundation and to provide additional guidance. Research grant proposals that receive a favorable decision by the SMAB are then presented to the RLS Foundation’s Board of Directors for funding consideration.

Since its inception, the grant program has focused on specific areas of study: genetics, epidemiology, iron regulation, neurophysiology, the development of novel treatment options and RLS animal models. Based on the findings of research in these areas, the SMAB recently developed new guidelines and funding priorities for future grant proposals that are summarized here:

Brain Iron Homeostasis: RLS is regularly associated with changes in brain iron function.

• Research Target: Elucidate the biological factors that contribute to RLS-relevant alterations in iron homeostasis in the nervous system.

Genetic/Epigenetic Factors: Multiple studies have underscored the role of specific genetic and epigenetic factors in the development of RLS. Genetic factors refer to factors that stem from familial heredity or gene mutations; epigenetic factors refer to changes in a person’s genome as a function of, for example, exposure to environmental factors.

• Research Target: Identify genetic and epigenetic factors and their interactions in RLS patients and develop animal models in which these interactions can be better explored in mechanistic detail.

Comorbidities: RLS is often associated with a wide range of other neurological and non-neurological diseases. What is the impact of RLS on other ailments such as cardiovascular disease, sleep apnea or Parkinson’s disease?

• Research Target: Identify any possible causal links between RLS and these other diseases.

Neurobiological Interactions: A variety of signaling molecules have been identified in the nervous system that are changed with RLS. It is often unclear, however, if the changes in these signaling molecules are themselves causing RLS symptoms or if they are a result of other changes.

• Research Target: Identify RLS-relevant neurotransmitters and neural pathways that may be implicated in RLS.

Therapeutics, Pharmacological Treatments and Therapeutic Responsiveness: A wide range of medications is used to treat RLS, and many of these compounds can lead to unwanted side effects, such as tolerance or augmentation.

• Research Target: Explain the pharmacology of existing RLS medications, develop novel approaches that show better efficacy or fewer side effects, and generally advance knowledge toward development of better treatments of RLS.

Nonpharmacological Treatments: In addition to current pharmacological treatment options, RLS patients may find benefit from nonpharmacological approaches. These include, but are not limited to: transcranial or spinal magnetic or electric stimulation; transcranial direct current stimulation; cognitive behavioral therapy; and intermittent compression of the lower limbs.

• Research Target: Describe the mechanisms in nonpharmacological treatments that lead to the improvement of RLS symptoms.

Novel Diagnostic Markers: Identifying RLS relies on the subjective feedback of a patient to their clinician.

• Research Target: Develop better assessment techniques or devices that will provide improved outcome measures for clinical research.

The RLS Foundation plans to open a new series of biannual calls for submissions of research grant applications with rotating main themes, in which submissions will be prioritized around the above-listed research areas. The RLS Foundation will also be seeking grant submissions from specialists in these respective areas, to increase the scientific depth and widen the breadth in RLS-related research. Additionally, the RLS Foundation has set aside funds for one predoctoral or postdoctoral fellowship grant per year to attract promising young investigators to the field. To contribute directly to that fund, go to www.rls.org/AllenFund.

These changes to the RLS Foundation’s Research Grant Program will improve our understanding of RLS in the clinic, spearhead new approaches and treatments in the lab, identify new and emerging drugs and technologies, and improve patient outcomes by engaging an increasing number of clinicians and researchers dedicated to finding a cure for RLS.

July 17, 2020

Compelled to Act

By Stephen Smith, RLS Foundation member and volunteer

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

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

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

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

A Welcome Reception

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

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

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

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

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

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

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

April 23, 2020

Diet Makes a Difference

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

April 21, 2020

Speaking Out During “Stay at Home” Orders

COVID-19 may keep us apart, but we can all stand together to let Congress know that nearly 12 million Americans live with RLS and we must be heard. Our original plans for RLS advocates to travel to Washington, DC for “RLS Hill Day” have changed due to “stay at home” orders.

This unique situation provides each of us in the RLS community the opportunity to participate in this day of virtual advocacy by calling or emailing our representatives to educate them about RLS and to ask for their support in specific policies and legislation. We’re calling it Virtual RLS Advocacy Day and we are looking for anyone with RLS, and anyone who loves and cares for someone with RLS, to join in this campaign on Friday, April 24th, to let lawmakers know what the RLS community needs in order to manage this misunderstood disease.

What Makes this Day Different?

The RLS Foundation has partnered with the Health and Medicine Counsel of Washington (HMCW) for over three years to coordinate and direct our advocacy efforts. Working together, we have coordinated multiple trips to Washington DC to meet with key legislators in person to discuss our concerns and ask for their support in specific legislation and policy. What we have learned is that your representative wants to hear YOUR story. You can make a difference. You, the constituent, must reach out to your representatives with your personal RLS story and let them know how they can effect change in your life with our priority legislation.

What are the Priorities

We have narrowed down our requests to the following four areas currently under consideration in Congress. We all need to ask our representatives to support these initiatives on our behalf:

• Increase funding at the National Institutes of Health—$44.7 billion in the FY 2021 Labor-HHS-Education Appropriations bill to fund critical research to find treatments and a cure for RLS.
• Continue to include “sleep disorders” as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) in the FY 2021 Defense Appropriations Bill.
• Protect the needs of RLS patients who depend on appropriate access to low-total daily dose opioid therapy to manage the most severe forms of the disease when all other treatment options have proved ineffective. Ensure that RLS patients retain access to physician-directed care and treatment using opioids in any legislation, policy or regulations.
• Support provider education to minimize misdiagnosis and incorrect treatment of this misunderstood disease. The CDC’s National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) supports several programs that work to increase public awareness and improve professional education. Please provide $5 million for the National Neurological Conditions Surveillance System (NNCSS) and $5 million for a Chronic Diseases Education and Awareness Program.

Why Contact your Representatives?

Hearing from constituents can make a powerful difference in how legislators view and vote on issues. Making a phone call or sending an email allows you to tell your RLS story. When you explain how RLS affects your everyday life—impacts your job, curbs your ability to travel, makes it impossible to get a full night’s sleep—you put a face on this misunderstood disease and gain support from our lawmakers.

How YOU Can Make a Difference

We want this to be as easy as possible for everyone to join us on this first Virtual RLS Advocacy Day on Friday, April 24. We have gathered all the information you need to make phone calls or send emails, or both!

• Before Friday, download the Prep packet from the Advocacy page on our website (www.rls.org). There you will find instructions on how to contact your members of Congress. We have provided an email template and a call script – you simply add your personal RLS story.
• Watch the recorded webinar “How to Prepare: Virtual RLS Advocacy Day” or download the webinar slides to find out what you need to know before you make your calls or send emails.
• Read the RLS Foundation’s legislative priorities if you want more details on each issue.
• If you prefer to make phone calls, you will likely be directed to the staffer that handles health issues (Health Legislative Assistant or HLA). We have a partial list of the HLAs in the Prep packet. Check to see if your member of Congress is listed for their phone number and HLA.
• Finally, after you have completed your calls or emails, please let us know who you contacted and if they requested additional information so that the Foundation can follow up with this request. It helps to know which members of Congress have been contacted to determine the effectiveness of this campaign and to identify potential RLS champions in Congress. Complete this short survey after your contacts.
• If you have any questions before or during Virtual RLS Advocacy Day please give us a call at 512.366.9109 or email amber@rls.org.

April 14, 2020

If RLS has left you unable to work, you may want to consider applying for government disability benefits. The Social Security Administration (SSA) offers monthly financial support to people with serious illnesses whose conditions prevent them from working. While not everyone with RLS will qualify, you may be eligible for aid if you have a severe case of RLS.

Medical Qualifications and Disability Benefits

The SSA uses its own medical guide (the “Blue Book,” which may be viewed online) to evaluate applications for disability benefits. You must have one of the listed impairments or an equivalent combination of impairments to qualify for benefits.

Although RLS is not specifically listed in the Blue Book, you still may qualify if symptoms listed under other conditions accurately describe your symptoms. For example, many people with RLS may have depression and exhaustion due to the condition. To qualify for Social Security benefits with depression, you must prove you experience any five of the following:

• Depressed mood
• Diminished interest in nearly all activities
• Change in weight
• Difficulty sleeping
• Noticeable physical agitation
• Less energy
• Feelings of guilt or worthlessness
• Difficulty concentrating
• Thoughts of death or suicide

In addition, you must have challenges in at least one of the following areas:

• Understanding, remembering, or applying new information
• Interacting with others in the workplace
• Concentrating and completing tasks
• “Adapting” oneself, (i.e., controlling your emotions in the workplace)

Other examples of RLS-related conditions included in the Blue Book are other mood disorders, heart disease, and vision problems.

Medical Evidence Needed to Qualify

In addition to having a collection of symptoms listed in the Blue Book, the condition must make it impossible for you to earn a living (currently defined as making less than $1,260 per month).

If you feel that your RLS symptoms might qualify you to receive disability benefits, you should ask your doctor to fill out the Residual Functional Capacity (RFC) form on your behalf. The RFC is available on the Social Security Administration website. After you apply, your physician also may be asked to submit relevant medical records.

The RFC describes exactly how much physical labor you’re able to do, from lifting weights to standing for extended periods of time. The physician’s assessment is given weight in making the determination. Factors considered may include:

• Any medications you’re taking and their side effects
• The jobs you’ve had in the past and the exact physical
activities you can no longer perform
• How long you’ve been undergoing treatment for RLS
• Any other conditions you have that contribute to your inability to work
• If you perform sedentary/desk work, a physician’s statement describing the limitation on this type of job

Starting Your Application

Although most people will find it convenient to apply online, you can also make an appointment for a face-to-face meeting at any of the more than 1,300 Social Security Administration offices in your community.

While approval rates are low, especially for conditions that are not listed in the Blue Book, a thorough appeals process is available for any denied claimants. Once you are approved for disability, you can focus on what’s important: your health.

Resources

• RLS Foundation
• National Sleep Foundation
• Social Security Administration

Article courtesy of Disability Benefits Center. The RLS Foundation does not endorse or sponsor any products or services, nor is it qualified to provide legal advice as to potential benefits. To learn more or apply for disability benefits, please contact the Social Security Administration.

November 22, 2019

By Amber Arellano

RLS Safety Net

Do you consider yourself a caregiver for your spouse or partner? By definition, a caregiver is a person who provides direct care to the elderly, a child, a spouse or a partner. An estimated 39.8 million caregivers in the US provide assistance to another adult age 18 and up, according to a report by AARP. The degree of caregiving varies – from 24-hour care, to asking if a spouse took their medicine that day.

Caregiving can be a source of marital or familial strain; it can cause caregiver frustration and fatigue, as well as disagreements within a household. In the RLS Foundation’s 2013 Patient Odyssey Survey, spouses/partners reported the following were impacted by RLS: relationships (20%), the ability to travel/leisure activities (25%) and sleep (24%). Here are some tips for caregivers to strengthen relationships, manage travel and leisure activities, and improve sleep.

Strengthen your relationship

According to the Patient Odyssey Survey, 45% of RLS patients wish their family and friends were more supportive and understanding of their experience with RLS.

Caregivers may feel powerless over their loved ones’ RLS if they don’t understand it. It’s important to educate yourself. Watch the Foundation webinar “What is RLS” by Dr. William Ondo, request RLS Foundation literature or download publications from the member portal at www.rls.org. Don’t be afraid to share your struggles and listen to your loved one’s experiences in return.

If you are uncomfortable broaching the topic of RLS, then make time to talk. Ask your spouse or partner to describe what RLS means to them, go on a date together, or attend a support group meeting. As social researcher Brené Brown says “Vulnerability sounds like truth and feels like courage.” Have courage, and be bold. The effects of family support, collaboration, and control of RLS will have positive health benefits for all in your household.

Travel and leisure: Be flexible and creative

Gregory Stader, whose wife Rosemary has RLS, says that their family is aware of Rosemary’s symptoms and makes a few adjustments to work together and quell her symptoms. “We have set timers using [Amazon] Alexa as a reminder to take her meds on time,” says Stader. “[For trips] we try to travel together, and when driving we allow extra time for stops if needed.” Stader says he is now driving a majority of the time, and they keep Rosemary’s mind occupied with devices – iPads and cell phones – to allow her to stay connected, read email or order products.

RLS Foundation Executive Director Karla Dzienkowski talks about traveling with her daughter who has RLS. “Flexibility is key. As a family, we make plans to travel only in the morning or afternoon hours. If it’s not a good day, we change plans,” Dzienkowski says. If someone in your family has RLS, don’t let RLS stop you from traveling and doing other things that you enjoy. Find ways to make accommodations and be flexible with travel plans. Travel at a time of the day that is best for your family member with RLS, and consider modes of travel that will allow them to move when necessary – for example, by train, boat or RV. Find ways to keep their mind busy with activities such as Sudoku, crossword puzzles or podcasts.

According to AARP, couples bond more closely when they do new, innovative activities together. Pick up your local newspaper and find a new event to attend, take a dance class, or join a club. If you have an outdoor theater or concert nearby with options to stand or even dance, take advantage of venues that allow you to move. Travel and leisure activities are out there – go find yours!

Optimize your sleep

In the Foundation’s survey, 65% of patients and 24% of spouses/partners report a restful night’s sleep as the area of their lives most affected by RLS. Encourage your loved one with RLS to be aware of their triggers, use the Foundation’s RLS symptom diary, and establish a daily schedule to prepare for a restful night. Work together, and keep your channels of communication bright and open. Go outside or do something physical for at least 30 minutes a day to also aid sleep.

Loss of sleep can have a negative effect on mood, productivity and happiness. The Global Council on Brain Health, a collaborative from AARP, recommends people age 50-plus should aim to get about seven to eight hours of sleep in a 24-hour period. If the sleep needs of the RLS patient or caregiver are not met, don’t be afraid to try sleeping apart. In the Foundation’s survey, 36% of partners reported sleeping in separate beds due to RLS. Sleeping apart can be beneficial for both parties; the caregiver can get a full night’s rest, and the RLS patient will be less distressed throughout the night.

Caregivers, remember to be positive, patient and understanding when your loved one is experiencing severe RLS symptoms. Know that your loved one appreciates all that you do for them; you are their safety net when things get tough. As a community, patients, caregivers, families and friends can make a difference in each other’s lives. You are not alone!

November 14, 2019

What's Really under the Bun?

The Impossible Burger is a plant-based burger that has been widely praised for looking, smelling and – luckily for burger lovers – tasting just like the real thing. But if you have RLS and low iron stores, you may be wondering: Can it boost your iron?

Iron is essential for all living cells in the body. One of its main roles is as a component of hemoglobin (heme), the molecule in red blood cells that carries oxygen throughout the body. Iron deficiency is a known contributing factor to RLS, so maintaining a healthy iron level is especially important for those with the disease.*

According to a 2018 Gallup poll, 5% of Americans report they are vegetarian, and another 3% are vegan. (Vegetarians don’t eat meat; vegans don’t eat any animal products.) Individuals choose to limit their diet for a variety of reasons, but no matter why, removing meat from one’s diet can drastically reduce iron intake. To combat this iron deficiency, vegetarians have to work to fit other high-iron food choices (such as tofu, lentils and beans into their diets. Could the Impossible Burger be an iron-rich choice for vegetarians and vegans alike?

The Impossible Burger is a nationwide phenomenon. This 100% plant-based burger is known to taste like the real thing and even bleed. But how can a burger bleed if it isn’t meat? Scientists at Impossible Foods claim that heme is the molecule that makes meat taste and bleed like meat. The company genetically engineers yeast to make heme for the Impossible Burger.

However, the burger’s benefit as a source of dietary iron is up for debate. James Connor, PhD, a member of the RLS Foundation Scientific and Medical Advisory Board and a leading expert in brain iron metabolism, says that although the Impossible Burger contains heme iron, it is not clear to experts if this genetically altered molecule acts the same in the body as regular heme.

Additionally, Connor explains that soy protein actually inhibits iron absorption. Since the heme in the Impossible Burger is fermented in a soy plant, it is unlikely that any iron in the burger is absorbed into the body, according to Connor.

Overall, the Impossible Burger may be a tasty option for vegetarians or vegans who are craving a burger. Also, Impossible Foods states its main goal is “to reduce humanity’s destructive impact on the global environment by replacing the use of animals as food production technology.” However, choosing an Impossible Burger over a regular burger is probably not going to have much impact on your iron level.

The moral of the story is to do your research as a consumer. With so many products on the market and so much information on the internet and social media, it is sometimes hard to know if a product or service will provide the benefits you are expecting. Whether it is a new diet, a new drug or a new RLS treatment, make sure you understand the details and consult with your doctor before making any changes to your treatment plan.

Editor’s note: James Connor, PhD, is founder and chair of the board of Sidero Science, a competing specialty biotechnology company with an iron- based medical food product under development.

October 11, 2019

One Man’s Advocacy Journey to Make an Impact

By Stephen Smith

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

Two years ago, when the Foundation announced its advocacy program, I knew that this was something that I had to do. My RLS requires the use of opioids for treatment, yet the political climate where I live is such that almost none of the doctors in town is willing to prescribe them for any reason other than surgery. Everyone says that "someone should do something," and I knew that in this case, "someone" had to be me.

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

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

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

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

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

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

To enact change in legislation that affects millions of individuals with RLS, each of us can play a role – whether that is participating in letter-writing campaign coordinated by the RLS Foundation, visiting with your legislators' local offices, attending RLS Advocacy Day on the Hill or donating to the Foundation’s advocacy program so we can all maintain a presence in Washington. These efforts reinforce our goals of increased funding for RLS research at the National Institutes of Health, provider education at the Centers for Disease Control, and access to opioid therapies for severe RLS. If we each step forward to do our individual part, our combined effort will allow us to achieve these goals that are so important to every one of us. So, what is your contribution going to be?

August 1, 2019

CBT-I Just Might Help

By Régis Langelier, PhD

As many of you know, those of us who are “NightWalkers” have not only RLS, but also the insomnia that comes with it. All who endure RLS have some learned coping expertise; however, we also need new ways of thinking and strategizing for revitalization!

Now there is something proven to help: cognitive behavioral therapy for insomnia (CBT-I) – a treatment primarily given by specialized, doctoral-level psychologists. In 2016, the American College of Physicians finally recommended CBT-I as a first-line therapy for chronic insomnia,¹ officially endorsing the combined finding of data from multiple studies (meta-analysis).² CBT-I is proven to be the best treatment for chronic insomnia disorder, works as well as sleep medications and has the added benefit of fewer or no adverse effects. I use CBT-I every day, and so can you.

RLS and insomnia pose daily challenges to well-being

RLS is a complex, neurological and torturous affliction. Just by itself, it creates fragmented and diminished sleep; constant fatigue (often an RLS trigger); sometimes an inability to relax during the day; disruption of life’s pleasurable activities; impaired behavioral, emotional and cognitive functioning; and trouble with common activities such as driving, or attending a play or movie.

Insomnia is associated with one or more of the following symptoms: difficulty initiating sleep; difficulty maintaining sleep (characterized by frequent awakenings, or problems returning to sleep after awakenings); and early morning awakening with the inability to return to sleep. In chronic insomnia, sleep disturbance causes clinically significant distress or impairment in important areas of functioning, occurs at least three nights per week, and is present for at least three months. Chronic insomnia is linked to an increased risk of developing a number of physical and mental disorders, including but not limited to high blood pressure, heart disease, diabetes, chronic pain, work-related accidents, major depression, alcohol and substance abuse, and trouble with memory, concentration and performance.

Population-based estimates indicate that in general, about one-third of adults report insomnia symptoms³; in comparison, the prevalence in people with RLS is much higher (48–60 percent).⁴ Regardless of whether their RLS symptoms are relieved by medication, many patients continue to have sleep issues and other health problems. They also may be plagued by anxiety and depression, plus suffer from a sense of despair. RLS is invisible to our friends and others, as is insomnia. Often such unseen maladies contribute to feelings of isolation, to overwhelming stress, to chronic relaxation problems and to unique or quaint (soap under your pillow as a placebo?) coping strategies. Medications are not proven to be a universal answer. Coping and improvement are usually best achieved by medical evaluation and creating an individually tailored strategy that may include drug and/or nondrug treatments.

Poor sleep is partly learned and partly inherited. Factors known to contribute to sleep issues are age, pain, medical conditions, drugs, substance abuse, fear, financial insecurity, difficult work/living conditions, trauma, poverty and relationship problems –to name just a few common culprits. RLS and insomnia combined pose a much greater daily challenge to living well, and to achieving happiness!

Something proven to help: CBT-I

CBT-I is a set of strategies that helps modify thoughts, beliefs and behaviors that interfere with sleep and life. Although this therapy doesn’t work as quickly as sleep aids (which remain the most popular treatment for insomnia, despite publicized concerns about safety and efficacy), CBT-I is an evidence-based therapy that can be effective and enduring, especially by increasing shuteye time in stages 3 and 4 of sleep (slow wave sleep, and deep sleep). CBT-I improves mood and is particularly effective in mitigating excessive sleep effort – the common tendency to try too hard to make sleep happen. (Who hasn’t experienced this?)

CBT-I typically involves a sequence of eight or fewer sessions with a trained psychologist, and includes the following elements:

Sleep Assessment. The provider conducts a comprehensive evaluation and history of sleep problems, physical and mental health issues, substance use (including caffeine), daily sleep diary profiles, the Insomnia Severity Index score (mild to severe), and the Sleep Efficiency Index result (total time in bed actually spent asleep).

Sleep Education and Sleep Hygiene. This part of CBT-I addresses normal sleep and its stages, sleep regulators such as circadian processes, arousals from sleep, environmental conditions, and sleep hygiene recommendations. Screen time, Starbucks stops, and the nightly wine or beer are also added up on the “sleep trouble” scale.

Stimulus Control and Sleep Restriction Therapy.⁵ These strategies aim to strengthen cues for sleep, reduce cues that interfere with sleep, reduce the amount of time spent awake in bed each night, and associate one’s bed with falling asleep quickly. Stimulus control instructions are:

• Lie down intending to go to sleep only when you are sleepy.
• Do not use your bed for anything except sleep and intimacy.
• If you are unable to fall asleep within 20 minutes, then get up, go to another room and return to the bedroom when you are sleepy again. Do this as often as necessary throughout the night.
• Get up at the same time every morning, regardless of how much sleep you had during the night. This will help the body acquire a consistent sleep rhythm.
• Keep active during the day and avoid naps (except for a limit of 30 minutes when sleepiness might cause harm).

Sleep restriction is designed to increase the drive for sleep (i.e., tiredness) and is used in combination with stimulus control instructions and cognitive therapy. If you never fall asleep before midnight, but your bedtime is 10 pm, then go to sleep at 11:45 pm. This will limit or restrict the time you are “trying” to fall asleep. Also set up a wake-up time. This is typically seven to eight hours after your bedtime, even if you have a terrible night’s sleep.

Relaxation Training. This training reduces physical arousal and muscle tension, slows down the heart rate and breathing, and slows a racing mind. Approaches might include diaphragmatic breathing, visual imagery, and mindfulness-based stress reduction.

Cognitive Techniques, or cognitive restructuring. This therapy addresses misconceptions about the causes and consequences of insomnia, unrealistic sleep expectations, and negative automatic and sometimes catastrophic thoughts about sleep. It is important to challenge those thoughts and beliefs by identifying more realistic substitutes for them. In this therapy, negative thoughts (make your own list) such as “I am never going to fall asleep” or “I won’t cope tomorrow” or “I have no control over this racing mind” are treated, challenged and restructured by realistic thoughts: “I always fall asleep eventually” or “I will be tired tomorrow but will get through it as always” or “I am not alone – at least two in five people with RLS have sleep trouble.” Time is scheduled during the day to address anticipated worrisome bedtime thoughts and to practice relaxation. CBT-I providers typically provide handouts on cognitive techniques for patients to take home with them.

CBT-I considerations

A combination of CBT-I and RLS medication might be necessary to address the sleep disturbances and severe RLS symptoms. This combination can make the difference between frustrating torture, and some measure of success. With conditions such as depression, studies2 show that compared with antidepressant medication alone, CBT-I in conjunction with these medications can significantly reduce depressive symptoms and increase insomnia remission rates.

Sleep restriction therapy has been found effective for older adults (not for children) but is contraindicated for specific types of depression (e.g., bipolar disorder) and may at first increase anxiety. For this reason, sleep restriction therapy is optional for individuals who have post-traumatic stress disorder. Skip sleep restriction therapy if it doesn’t seem right for you.

Finally, although CBT-I can be conducted in groups or online, research to date on CBT-I outcomes has focused on in-person treatment.² However, time demands, health issues and transportation issues encourage remote consults (telepsychology) by specialized psychologists to treat RLS and insomnia.

In summary, CBT-I offers an effective, evidence-based protocol to improve sleep profiles for children and adults who have RLS. If you would like to explore this therapy, talk with your health care provider about whether this treatment may be right for you.

_________________________________________________

Régis Langelier, PhD, is a practicing, licensed psychologist in southern Maine offering CBT-I in-person and by remote consults. He is a behavioral medicine specialist, and a past clinical associate professor of psychiatry at the University of Vermont, Burlington. Langelier formerly served as treasurer of the RLS Foundation Board of Directors, was a support group leader for 10 years, and currently volunteers as an RLS support contact.

¹ Qaseem A. “Management of Chronic Insomnia Disorder in Adults: A Clinical Practice Guideline from the American College of Physicians.” Annals of Internal Medicine, July 19, 2016.
² DeAngelis T. “Behavioral Therapy Works Best for Insomnia.” Monitor in Psychology Vol 47, No 9, October 2016.
³ DSM-5 Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, American Psychiatric Association, Washington, DC, 2013.
⁴ Lee HB, Buchfurer MJ, Allen R, Hening WA. Clinical Management of Restless Legs Syndrome, Second Edition, Professional Communications, Inc., NY, 2013.
⁵ Bootzin RR, Epstein DR. “Understanding and Treating Insomnia.” Annual Review of Clinical Psychology 7, 11.1–11.24, 2011.