Restless Legs Syndrome Foundation Blog

New Connection between Restless Legs Syndrome and Changes in Brain Structure

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

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

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

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

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

The original Neurology article is available for purchase online.

New Support Group Leader in Texas

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

Lisa Marie Smith (Brazoria County, Texas)

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

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

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

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

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

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

Restless Legs Syndrome Blues

A Song by Bjorn Fredrickson

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

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

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

The Use of Essential Oils for Sleep

By Norma G. Cuellar, PhD, RN, FAAN

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

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

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

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

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

Reported Benefits

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

The following have been used to promote relaxation and sleep:

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

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

Potential Side Effects

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

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

Aromatherapy and RLS

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

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

Opioid Study Still Seeking Participants

Lewis Phelps is current chair of the RLS Foundation Board of Directors. He is a strategic public relations consultant with Sitrick And Company, a Los Angeles-based firm that specializes in handling crisis situations. Previously, Phelps was head of the public relations function for the nation’s second largest electric utility and for two major U.S. rail transportation companies. Early in his career he was a staff reporter for the Wall Street Journal for 10 years.

Phelps has extensive non-profit board experience in addition to a prior six-year term on the RLS Foundation board. He has chaired United Way campaigns in two cities, co-founded an anti-litter organization in Roanoke, Virginia, was on the board and executive committee of the California Science Center for 15 years, and has served as chair of the board of Pasadena Heritage, one of the nation’s leading local historic preservation organizations.

I encourage members of the RLS community to participate in the National RLS Opioid Registry, an important new study that has been funded by the RLS Foundation and is being conducted by John Weyl Winkelman, MD, PhD, and Chief of the Sleep Disorders Clinical Research Program at Massachusetts General Hospital. He is an internationally leading RLS researcher and long-standing member of the Foundation’s Scientific and Medical Advisory Board.

The study seeks to track up to 200 RLS patients who are currently being treated with an opioid medication, and who formerly were treated with a dopamine enhancing drug such as Mirapex or Requip. As of early March 2018, the study is more than halfway toward its enrollment goal.

There’s no monetary payment for participants, but the psychic rewards are large. By joining the study, you can help to significantly increase the body of scientific information that is available on the effectiveness of low dose opioids to treat RLS and the potential side effects. You can also learn how your personal experience with opioids compares with other RLS patients.

While some solid scientific studies address these questions, the Mass General study will expand our knowledge about the efficacy and safety of opioids to treat RLS. Such information will be valuable in coming months and years as the RLS Foundation grapples with the challenges that RLS patients are facing due to growing restrictions on use of opioids.

Addiction is obviously a huge and growing problem in the US. However, available clinical data suggest that using low doses of opioids to treat RLS will not contribute meaningfully to the addiction epidemic.

I can speak from personal experience in saying that participation in the RLS Registry is not difficult, time consuming, or unpleasant; I have become one of the study’s subjects. When you enroll, a researcher will conduct a 45-minute telephone interview with you, at a convenient time. They will ask about your current and former medications used to treat RLS, and your experience with them. The researcher who conducts the interviews is courteous, professional, and pleasant.

Following the initial interview, you will be asked to complete an online survey that takes about 20 minutes, and then you will be asked to complete a similar online survey every six months for up to five years. Your answers to the questions are completely confidential, and all information is kept on a secure hospital database that is only accessible by Dr. Winkelman and his research coordinator.

Each year of the study, you will receive a personal report about the overall results of the study to date, as well as a comparison of your own experience with opioids compared with the study group overall. For example, you will be informed whether your RLS symptoms are controlled better, worse, or about the same as the study group overall.

If you have RLS and are currently being treated with opioids, please do yourself and everyone else who has RLS a favor by joining the study. To do so, simply send an email to rlsregistry@partners.org, in which you identify yourself, provide contact information (email and phone number) and indicate that you wish to volunteer as a study subject.

Thanks,

Lew Phelps, Chair of the RLS Foundation Board of Directors