Restless Legs Syndrome Foundation Blog

Finding Hope

I’ve tried to describe emotional aspects of having severe or refractory RLS. The word “refractory” in medicine means “not treatable” or “resistant to treatment.” Those of us in this RLS category have horrible symptoms at any time of day OR night. The symptoms and pain will disturb any facet of daily living. RLS does not discriminate. I’ve had feelings of not “fitting in” in social settings, especially knowing that I could have an uncontrollable bout of restlessness. Or worse yet, my sheer terror of having an episode of RLS just when I have to be calm and quiet -- I’ve lied to get out of such situations. I feel very angry at being powerless over such an invasive illness. RLS is a monster that is all-consuming. I came to realize that I had lost the power of choice physically, and was close to losing the one most valuable of feelings: hope. Realizing that hope is a huge part of living happily, I aggressively sought help.

In one year, three neurologists and four more attempts at medication adjustments resulted in three visits to emergency rooms and two calls to “crises on-call” telephone services, as I was having horrible medication reactions. I was exhausting all avenues for relief from RLS insanity. There are several RLS Quality Care Centers and it seemed to make sense to contact one and hope for admission. There was one neurologist I wanted to contact as I had seen him years ago regarding a medication. Why see him now? I didn’t know, but it was significant. No, it was life-changing. My physician, it turns out, is very familiar with RLS and has treated refractory cases successfully. His knowledge and treatment skills are based on sound, demonstrated and practical RLS treatment protocols. And, he is a really great guy. Within two days after my first visit, I started my journey into wellness. That was three months ago.

Resignation is understandable. But, now I know that relief is possible. Basic things have changed in my life. It was just a month ago that I bought a book; A simple mystery novel written by an author that I loved to read when I could sit quietly, empty my mind, and enjoy fiction as fact without disturbances from my RLS. What a joy it was to go to a bookstore and actually feel like I had a purpose, a reason in being there! That was groundbreaking.

My RLS was an imposition on my wife. She would see me walk for hours during the night doing my “circle 8” in the kitchen, living room and dining room. And she felt it. She felt the pain of not going to movies or plays or concerts. Felt the pain of being uncertain about gatherings because “my legs hurt.” And she felt the pain of hopelessness, because that is what she saw at every failed attempt for a remedy. Two weeks ago we went to a movie that I would not have chosen because of content and appeal. I was able to sit through the movie, and was able to ask questions about it later sitting in our living room. Sitting. Quietly.

And now, there is the beauty of sleeping when I want to rather than reach the point of deathly exhaustion. I still have troublesome and unfortunate sleep behaviors learned over 25 years of illness that may not be corrected. I have already found the wonder of regular sleep versus desperation naps. A different world. So now, I’m positive I will be able to come close to experiencing a far better sense of being normal. It’s already started, and my accounts of health and really good rest are noticed by friends and family. I’m told that I look and sound different. Now, I again have hope. I have great hope that the rest of my life will be truly peaceful. I hope that at least one reader will try “just one more” physician or go to a recognized RLS Quality Care Center. There is a solution under some rock – don’t stop turning them over.

How to Manage Your Child's RLS in the Coming School Year

Restless legs syndrome (RLS) does not only affect adults. In the United States alone, RLS is believed to afflict an estimated 1.5 million children and adolescents.

Although most research has focused on adults, RLS symptoms often begin during childhood or adolescence. In fact, about 35 percent of patients report RLS onset prior to age 20, and one in ten report that the syndrome appeared during the first decade of life. Additionally, research has shown that RLS has a genetic component, which causes RLS to oftentimes run in families.

Like adults, children with RLS tend to seek relief from their discomfort by moving their legs — often by fidgeting, stretching, walking, running, rocking or changing position in bed. Parents or healthcare providers often mistakenly label the child’s discomfort as "growing pains." Unlike most adults with RLS, children with RLS often complain of sensations more during the day than at night. However, RLS still causes the quality and quantity of a child's sleep cycle to diminish. This sleep deprivation can result in moodiness, irritability, inattentiveness, fatigue or hyperactivity.

In the classroom setting, attempts to relieve the uncomfortable feelings of RLS may be interpreted as inattentiveness, hyperactivity or disruptive behavior. RLS, however, is a real medical condition that calls for proper evaluation, diagnosis and treatment. Here are some tips to ensure that your child has the resources he or she needs to manage their RLS, especially at school.

Young Children and Adolescents

1. Have an open dialogue among family members about your child's RLS

It is essential for your child to feel supported at home, especially when they are struggling with a disease that they may not understand. Educating your family and your child about RLS will help create a comforting and safe environment for them to discuss their symptoms. The Foundation has a number of resources to educate both parents and children about RLS.

Our newest children's publication, The Adventures of Patty Pillow, is a great tool for your child to learn how to monitor their symptoms, triggers and other patterns. There is a spread in this booklet that allows for your child to keep a "kid-friendly" journal of his or her sleeping patterns and to track symptoms.

2. Talk to your child's teacher

Make an appointment to speak with your child's teacher(s), school nurse and/or coach(es) about your child's RLS. By discussing this important aspect of your child's health, these individuals can help create a plan so he or she can stretch/stand during class when they need to. Applying ice or heating pads may also help your child during class while they are sitting at their desk. You can also give these educators Foundation handouts so that they can learn about this often misunderstood disease - they may have another student with RLS in the future!

3. Establish a routine

A solid bedtime routine will help your child fall asleep faster and for longer. Here are some good rules of thumb:

• Go to bed and wake up at the same time every day. Having a regular routine will make it easier for your child's body to shut off for sleep at night.
• Avoid large meals or snacks right before bed. Caffeine in soft drinks, energy drinks, and chocolate (chocolate milk, candy and ice cream) before bed will also make it difficult for your child to fall asleep. Note: Teach your child how to read labels for RLS triggers, like caffeine.
• No electronics before bed. Blue light from a computer, tablet or phone screen can make your child's body think it's time to wake up. Instead, encourage he or she to take a bath, read a book or do some other quiet activity to get their body ready for rest.
• Play! Getting outside in the sunshine and exercising every day will help your child have a healthy sleep-wake cycle.

Teens

Teens typically require about 9 hours of sleep per night. Staying up late doing homework can contribute to poor sleep quality and restlessness, and can have negative effects on waking life. Encouraging your teen to establish a routine will help them get a restorative night's sleep.

Additionally, see if your teen can schedule their physical education class (or something similar) around mid-day so that they can get a break from sitting at their desk. Alcohol and nicotine can also exacerbate RLS symptoms, so this is also important to discuss with your teen. Read our Teen Guide for more strategies on how your teen can cope with their RLS symptoms.

Want more information on RLS and your child? Email us and we will get you what you need!

Providing RLS Care in Southern Switzerland

Mauro Manconi, MD, PhD, a current member of the Foundation's Scientific and Medical Advisory Board, has devoted much of his career to sleep medicine. In 2016 he partnered with the RLS Foundation as director of the second European RLS Quality Care Center (QCC), the Sleep Center at the Neurocenter of Southern Switzerland.

"The fact that an international organization certified Sleep Center at the Neurocenter of Southern Switzerland is of great satisfaction to us," Manconi said. "It is an important recognition that comes at the end of a long period of clinical and research work by our team... This acknowledgment confirmed that we are on the right track and it further motivated us, but above all it explained to the general administration of our institute the importance of this disease and the need to face RLS with a competent and multidisciplinary team."

Manconi also teaches at the Master School of Medicine at Bern University, the Institute of Communication and Health at the Italian Swiss University of Lugano, as well as at the Professional University School of Italian Switzerland. His research focuses on sleep disorders, specifically sleep-related movement disorders like RLS and PLMS, and he currently serves on the Scientific Board of the European Restless Legs Syndrome Study Group. At the RLS Foundation, Manconi is an active member of the Medical Bulletin Committee.

"The RLS Foundation QCC in Lugano, Switzerland offers individuals with RLS living in Europe a centrally located clinic with access to experts who are specialists in the care and management of individuals with restless legs syndrome," RLS Foundation Executive Director Karla Dzienkowski, RN, BSN, said. "Finding a knowledgeable provider is an important first step leading to symptom control and improved quality of life."

At the Neurocenter of Southern Switzerland, RLS patients receive a complete diagnostic pathway that begins with clinical and laboratory assessments, using the most sophisticated neuroimaging and video-polysomnographic instrumental examinations when needed. This allows for the certified RLS healthcare providers to rule out secondary RLS or other diseases that enter differential diagnosis along with RLS. At the Sleep Center, each patient receives an individualized therapy, including the management of other possible internist, neurological or psychiatric comorbidity that are periodically discussed by a local multidisciplinary team.

"The Center is always updated on the latest treatment available, participating in clinical trials and research in order to offer a large spectrum of assistance to our patients," Manconi said.

You can find more information on the Sleep Center at the Neurocenter of Southern Switzerland below:

Sleep Center, Neurocenter of Southern Switzerland

Civic Hospital of Lugano

Via Tesserete 46

Lugano, Switzerland 6900

Phone: 0041 (0)91 811 6825

Certified Healthcare Providers:

• Mauro Manconi, MD, PhD (QCC Director)
• Sylvia Miano, MD, PhD
• Stephany Fulda, PhD
• Pietro-Luca Ratti, MD, PhD

What You Need to Know

Iron deficiency without anemia has been associated with increased fatigue, depression, cognitive impairment, decreased work capacity and restless legs syndrome (RLS). Prior to diagnosis, an RLS healthcare provider may check a patient's iron (ferritin) levels to see if they have low iron.

"Keeping iron levels mid-range (75mcg/L and above) correlates to RLS symptom improvement," RLS Foundation Executive Director Karla Dzienkowski, RN, BSN, said. "Every individual with RLS needs to know their ferritin level, as it is a key component in the management of RLS symptoms."

Iron is essential for all living cells in the body. It works with the oxygen in your body to produce energy for your cells. When an individual has low iron stores, the amount of iron going into the bone marrow increases. When someone is severely iron deficient, as much as 99 percent of the body's iron will go directly into bone marrow, effectively starving other organs, including the brain, of iron.

There are a number of ways for someone with RLS to ensure that they keep their iron stores up. Eating meat, fish and liver provide the most absorbable form of iron for the body. While leafy green vegetables also contain iron, it is not always broken down adequately by the human digestive tract. Thus, the same amount of iron in a vegetable may not deliver the same amount of iron as in meat or liver.

Additionally, many RLS sufferers turn to supplementation to assist with their iron intake. Iron pills should not be taken with food, milk, antacids, calcium supplements or medications used to treat acid reflux, as they drastically reduce iron's absorption into the body. Some individuals increase this absorption by taking their iron pills with either Vitamin C or orange juice. It is essential for someone with RLS to consult with their physician before taking any supplements or altering their current RLS treatment plan, as this helps ensure the proper monitoring of iron levels, as well as looking out for the development of iron overload known as hemochromatosis.

In severe cases, some individuals with RLS use intravenous iron infusions. Currently, there are five different formulations of IV iron available for use:

• iron dextran
• iron sucrose
• iron gluconate
• ferumoxytol
• ferric carboxymaltose

It is important to note that the low molecular iron formulations present a low risk for allergic reaction, and therefore IV iron usually only considered if iron pills fail to improve iron stores.

The Foundation has a number of publications available in the Member Portal that cover iron and RLS, including our brand new Medical Bulletin. Not a member but need information? Send us an email at info@rls.org and we'll get you what you need!