Restless Legs Syndrome Foundation Blog

“Always just beyond the edge of consciousness . . . like electricity. Toes. Ankles. Calves that have to move. RLS, a tailgater crowding my rearview mirror, a bully breathing down my neck, a whiff of something rotting just behind the wall. Always there. Always ready to twist a moment of peace and relaxation into a kicking, screaming fight to make the feeling leave.”

I teach people how to make artistic things that help them flourish. My own struggles with RLS have convinced me that communities affected by RLS could also benefit from developing habits of life-giving creativity.

My journey, resulting in this conviction, began in a village in the Democratic Republic of Congo. My wife and I helped start a project to translate the Bible into a language called Mono, encouraging speakers to integrate the new Scripture into their lives through their own types of singing, dancing, poetry, proverbs, storytelling, carving and so on. I eventually earned a PhD in ethnomusicology at UCLA and founded the Center for Excellence in World Arts (CEWA) at Dallas International University.

Along the way, I became more and more aware of the infinite range of suffering in the world, and saw how arts have often brought relief, soothing people’s anguish. So, I started studying music, dance, visual and other arts therapies, integrating their insights into our training, inviting experts to teach at the CEWA. Our students now spark healing creativity in communities in the US and around the world, to increase others’ well-being.

Two diseases forced me to take my own medicine. First, I learned that I have Huntington’s Disease (HD) — neurodegenerative, incurable — and started making songs, T-shirts, jokes, schticks and a snarky virtual alter ego to express and undermine my despair and fear. Everyone with HD eventually loses control of their movements in a way that makes them look drunk. (I’m not there yet.) Police kept accusing a woman in our HD support group of public inebriation, so I wrote the song, “HD Blues,” and made a T-shirt with “No sir, officer, I am not drunk…” on the front and a description of HD on the back. Protection and education neatly nestled on a bed of 100% cotton.

Then came RLS — in my humble opinion, Ridiculously Labeled Sickness. I was often awake all night. Exhaustion and hopelessness led to the excerpt from a longer lament at the beginning of this column. And its neurological roots and medications made me unable to take most of the antidepressants I need for HD’s emotional symptoms. RLS forced me to choose between sleep or sadness, rest or rage. You who have it bad can relate to this sampling of pleas from an RLS discussion board post: “Scared, appreciate any help;” “a living nightmare;” “suicidal now;” “am I in hell?” and “HELP!”

Despite these diseases — sometimes because of them — I found that it’s possible to craft a new normal life, one that even includes moments of purpose, joy and satisfaction.

Along with care from medical personnel and support groups, the arts can play a pivotal role. Expressive arts therapy experts Stephen Levine, PhD, DSSc, and Ellen Levine, PhD, MSW, write that “the therapeutic power of art rests not in its elimination of suffering but rather in its capacity to hold us in the midst of that suffering so that we can bear the chaos without denial or flight.”

That’s deep and mostly true. But I’ve seen things that arts can cure.

They can spark hope out of despair. Nurture community where there was loneliness. Replace ignorance with knowledge. Swap pacing or crumpled exhaustion on the floor with dancing. Exchange emotional and physical trauma with contentment.

Making, giving and experiencing artistry at any skill level can increase well-being. Your legs may still disobey, but with hope, pleasure, catharsis, understanding and community, it’s possible not just to endure, but to thrive.

Two possible action points: First, make something for yourself or someone else that feels good — some of you already do this. Everyone has a creative spark, and what you make doesn’t have to be seen or heard by anyone else. Try something. Embrace imperfection. Second, you can help build a virtual collection of arts produced by people affected by RLS, gathering songs, poems, stories, dances, paintings, jewelry, quilts, films, video games and many other forms. Email info@rls.org if you’d like to be part of getting this collection off the ground.

Let’s start an RLS Arts-Making Movement.

‘Cause sometimes pacing turns to dancing Sometimes lonely points to loved
And sometimes endless dark night brightens into hope'

Brian Schrag is a senior arts consultant with SIL International. For more, explore www.BrianAtPlay.com/restless-legs-syndrome.

Recognizing Sleep Issues in Childhood

In the 2013 Patient Odyssey Survey conducted by the RLS Foundation, nearly half (45%) of survey respondents reported the appearance of RLS symptoms before the age of 30. Recognizing sleep issues in childhood is important to prevent development of adverse mood, emotions, social skills, behavior and overall school performance in children and adolescents.

Restless sleep disorder (RSD) is a potential new sleep diagnosis for children and adolescents (ages 6 to 18). RSD represents a constellation of characteristics of disordered and disrupted sleep and often, impaired daytime function (tiredness, behavioral issues, poor school performance, etc.). Pediatric sleep researchers have developed eight criteria for a diagnosis of RSD:

1. Parent, caregiver, bed partner or patient gives accounts of “restless sleep.”
2. Movements of large muscle groups occur throughout the body and can include any combination of head and limb movements.
3. Movements take place during sleep or apparent sleep.
4. Five or more movements are observed during each hour of sleep.
5. Restless sleep is observed three or more times each week.
6. The patient exhibits restless sleep for a minimum of three months.
7. Restless sleep substantially impairs the patient’s life activities, including social, emotional, academic or occupational performance. Other effects include changes in emotional state, short attention span, tiredness, inattentiveness or lack of impulse control.
8. All behavioral, medical or sleep disorders have been eliminated as possible causes of the disrupted sleep, including a review of the patient’s current medications and dietary behaviors to determine whether the disrupted sleep may have another underlying cause.

All eight criteria must be present for a diagnosis of RSD. Restless sleep can co-occur with other disorders such as obstructive sleep apnea, asthma or eczema, so it is important to include screening for those disorders in the consideration of an RSD diagnosis.

Restless legs syndrome (RLS) shares similar features with RSD, such as difficulty falling asleep and staying asleep. Video polysomnography (videorecording of sleep studies) provides a visual picture that helps to differentiate RLS from RSD. In children with RLS, the primary visual feature is an increase in periodic leg movements; whereas in children with RSD, large body movements and repositioning that repeat throughout the night are highlighted on video. More importantly, in RLS, a verbalized “need to move” the legs while awake by the child or adolescent is the key diagnostic feature that is not characteristic of RSD.

In a 2018 study in the scientific journal Sleep, children with RSD were found to have low ferritin levels (lower than those found in pediatric RLS patients), and another study in 2021 showed RSD symptoms respond to oral or intravenous iron. Additional studies will further the understanding of this phenomenon and its possible relationship to the development of RLS.

Many adults with RLS report the emergence of RLS symptoms in their youth. RSD may account for some of these early symptoms that were part of their childhood and adolescence. If you suspect a child has a sleep disorder, a comprehensive medical evaluation by a pediatric sleep specialist will help to identify any potential sleep conditions that may be responsible for disrupting a restful night’s sleep.

References:

DelRosso LM, Bruni O, Ferri R. Restless sleep disorder in children: a pilot study on a tentative new diagnostic category. Sleep. 2018;41.

DelRosso LM, Ferri R, Allen RP, Bruni O, Garcia-Borreguero D, Kotagal S et al. Consensus diagnostic criteria for a newly defined pediatric sleep disorder: restless sleep disorder (RSD). Sleep Med. 2020;75:335-40.

DelRosso LM, Picchietti DL, Ferri R. Comparison between oral ferrous sulfate and intravenous ferric carboxymaltose in children with restless sleep disorder. Sleep. 2021;44.