Restless Legs Syndrome Foundation Blog

Thank You to All of Our Volunteers!

On behalf of the RLS Foundation boards and staff, we want to thank each of our volunteers for all the contributions they have made in supporting the community of RLS sufferers. The compassion and hope they provide has resulted in positive feedback, and we are incredibly fortunate to provide this volunteer program to those who are looking for help, hope, and sometimes just an ear.

The RLS Foundation currently has over 70 support groups and a network of remote support contacts throughout the United States and Canada, not to mention a group of dedicated volunteer discussion board moderators. All of these individuals contribute to achieving our goal of spreading RLS awareness and providing support to those suffering with this disease.

"Spreading the word is crucial to increasing the awareness of this often misunderstood yet complex disease suffered by so many," Southern California RLS Support Group Leader Susan Schlichting said. "This awareness will aid in furthering the Foundation's goal of finding a cure. Volunteering is a way for me to take personal responsibility for my health while facilitating others to do the same."

We are always looking to expand our volunteer network, and to provide integral support and counsel to those in underserved areas. If you are interested in applying to become a support group leader, here are the steps:

1. Learn more about the role by viewing the support group leader description.  
2. Submit an application! 
3. The Foundation will send references a brief questionnaire.
4. Once reference questionnaires are returned, a volunteer manual is provided and a phone interview is scheduled.
5. You then plan your first meeting with the support from the Foundation!

Please submit your completed volunteer application through the volunteer page on our website, by email, or send to:

Restless Legs Syndrome Foundation

Attn: Chiara Corey

3006 Bee Caves Road, Suite D206

Austin, Texas

78746

Click here to find a support group near you. Stay up to date with upcoming meetings in the "Find Support" section of our website, or on our Facebook page.

Practice What You Preach

Submitted By: Mary Lou Mennona, support group leader for Kingsport, Tennessee, and contact for Treasurecoast, Florida

Every time someone calls me regarding RLS, one of the things I always tell them that I have learned from the RLS Foundation research is: Stay away from alcohol, caffeine and sugar after 6 pm and especially before bed. Having these things will make RLS worse.*

So, [we] went on a vacation cruise recently and I got caught up in the fun of the evening. At dinner I shared a glass of wine with others – the one and only I had – I usually don’t drink at all, and then had a luscious, sweet dessert because everything on the ship menu looked so good!

I completely forgot to practice what I preached to others about these things being a “no-no” to RLS victims, and sure enough, I had a miserable night even WITH taking my meds... In fact, it ran right into the next day as we tried to watch a matinee movie on the ship. I usually don’t need my meds during the day, but I was so jumpy and felt like a wound-up spring ready to explode, that I knew I bothered the people near me, so I left the theater and walked and took AN EXTRA med.

Not only that, but I felt horrible all over. Even my hair was tingling and I just didn’t want to do anything! Depression can set in. My nerves throughout my body were vibrating all over and would not rest. Be careful! What the Foundation teaches us through all the research is so true!

I couldn’t believe that I had ignored my own advice! I never have this kind of trouble because I always keep a close eye on what I eat, my exercises, etc.

For those with RLS, don’t ever forget the debilitating effects of sugar, alcohol and/or caffeine, and learn from the information in [the Foundation's] wonderful quarterly newsletter, NightWalkers!

* For more information on what may exacerbate RLS symptoms, read our RLS Triggers publication in the Member Portal of our website.

Had a similar experience? Share it with us on our Facebook page or on the Foundation's discussion board. You are not alone!

An excerpt from the Summer 2016 edition of NightWalkers the Foundation's quarterly magazine. This piece is from the reoccurring column "In the News" by Lynn Marie Trotti, MD, MSc

Restless legs syndrome & depression: effect mediation by disturbed sleep and periodic limb movements.

Koo BB, et al. American Journal of Geriatric Psychiatry. April 2016.

Background:

Prior studies have shown that RLS and depression are associated, such that people with RLS are twice as likely as people without RLS to have depression at some point in their lives. The reason behind this relationship is not known, but a number of theories have been proposed (which are not mutually exclusive): 1) RLS and depression could share a common underlying cause; 2) depression medications may trigger RLS symptoms (which, in a cross-sectional study, could explain an association between depression and RLS); 3) sleep disruption from RLS could cause depression; or 4) periodic limb movements in sleep (PLMS) could cause depression. This study was designed to evaluate the latter three possibilities.

Research:

The researchers used data from the large Osteoporotic Fractures in Men (MrOS) study of elderly men, which has been used in multiple prior RLS studies. Included participants were evaluated for RLS and depression. Measures of PLMS and estimates of sleep quality were performed with in-home sleep studies and wrist actigraphy (a measure of activity), respectively. RLS was present in 17 percent of the 982 men. Those with moderate to severe RLS were most likely to be depressed, took the longest amount of time to fall asleep, had the most disrupted sleep, and had the greatest PLMS. The presence of moderate to severe RLS increased the likelihood of depression by about three times. Disrupted sleep accounted for some, but far from all, of the relationship between RLS and depression. Periodic limb movements moderated the depression-RLS relationship, such that people with RLS and PLMS had more depressive symptoms than those without RLS, but this effect was not seen in those with RLS without PLMS. People with RLS who were taking antidepressants had fewer depressive symptoms than people with RLS and depression who were not on medications.

Bottom Line:

The relationship between depression and RLS is mediated, in part but not exclusively, by the sleep disruption that accompanies RLS. The relationship between RLS and depression is apparent in those with PLMS, but not in those without PLMS. In people who are depressed, antidepressants are associated with fewer depression symptoms despite the presence of RLS (that is, having RLS does not appear to prevent an antidepressant benefit of medications).

New Questions:

Given that sleep disruption only partially explains the RLS depression relationship, what other factors are important?

Genetic Connections Discovered Between Sleep and Some Medical Disorders

A recent study in December 2016 by a team of American and British researchers unearthed genetic connections between sleep disturbance and a range of medical disorders.

For the very first time, areas of the genome that are associated with sleep disturbance (like insomnia, excessive daytime sleepiness and restless legs syndrome) were identified, while also discovering new genetic links with several medical conditions, including RLS, schizophrenia and obesity.

How did they do it? Researchers studied the health and life history of more than 112,000 individuals taking part in the UK Biobank study. Participants reported their sleep duration, the degree of insomnia/daytime sleepiness, and then had their genes mapped. Health information including weight and disease diagnoses was also included. Researchers then compared the biological controllers of sleep duration, insomnia and excessive daytime sleepiness, and how these linked to the surveyed individuals.

These researchers discovered eight genes that may contribute to sleep issues - the first to be specifically linked to insomnia. Their findings revealed that a portion of the genes that are most strongly linked to sleep disturbances were also linked to RLS, insulin resistance, depression, schizophrenia and obesity.

This marks the first time that sleep disorders and these conditions have been connected at a molecular level, increasing our understanding of the relationship between biology and sleep.

The paper that resulted from the study, "Genome-wide association analyses of sleep disturbance traits identify new loci and highlight shared genetics with neuropsychiatric and metabolic traits," was published in the scientific journal Nature Genetics. The article is available for purchase.

Read the HealthCanal article to learn more about this groundbreaking discovery!

Karla Dzienkowski Celebrates Three Years at Foundation

This year Karla Dzienkowski, RN, BSN, celebrates her third year as executive director of the RLS Foundation. Since taking on the role, Karla has brought the Foundation into a new era, developing programs and nurturing relationships that make significant strides in spreading awareness, providing support, and finding a cure for RLS.

Karla first began her relationship with the Foundation in the early 2000s, becoming a member and supporter of the Foundation after her daughter was diagnosed with severe RLS. As soon as she finally heard the diagnosis, Karla set three goals for her daughter: 1) To become knowledgeable about the disease, 2) to learn how to manage her symptoms, and 3) to advocate for herself. Fortunately, the RLS Foundation provided information to get the help that she and her family needed. Even today as executive director, Karla has made it a personal goal to support children impacted by RLS, developing publications so that kids can better understand this disease and take charge of their symptoms.

Eventually, Karla served for six years as a member of the Foundation's Board of Directors. Karla spent several months in Rochester, Minnesota, the Foundation headquarters, to train and transfer knowledge from the retiring staff to the newly recruited staff. The new and old team packed up the office for relocation, and Karla and her husband then drove a moving truck over 1,000 miles to the Foundation's new home in Austin, Texas.

Karla is a registered nurse, and has extensive nonprofit and volunteer experience. In addition to her years on the Foundation's Board of Directors, Dzienkowski also served as board president of an Austin, Texas chapter of the National Charity League, Inc., a mother-daughter philanthropic organization committed to community service, leadership development and cultural experiences. Karla has a passion for cooking (keeping everyone at the Foundation office well-fed!) and is a dedicated Pittsburgh Steelers football fan and eternal optimist. She spent many years as a school nurse while her daughters were in school, but her role as mother and wife have always been her first priority. She works tirelessly for the Foundation because Karla is truly dedicated to its mission.

"Karla possesses an energy that radiates throughout the office and infects us all," Membership Coordinator Faith Duncan says. "She leads a trifecta of boards, constituents and staff, and does so with relative ease. One might find it difficult to manage business executives, renowned physicians, Foundation staff & RLS sufferers (each requiring a different 'touch'), but Karla quite competently wears many hats and accomplishes this like a true champ."

Karla's drive to find a cure, in addition to her personal experience with RLS, is what makes her a distinguished leader who inspires all she works with. She is selfless, consistently leading with extreme dedication and passion, and always puts her constituents first. When any person calls or writes in with stories of frustration, often at wit’s end, Karla takes the time to reach out to each individual, listen with sincere compassion, and assist them in outlining steps to a solution.

On behalf of the Foundation and the RLS community, we thank you Karla!