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Health September 2014

Are You a NightWalker?

By Anna Russell

We NightWalkers know the value of motion. For example, rather than thrashing among sheets and blankets, we roam the house or walk in the moonlight. We play board games with ourselves and do deep knee bends.

In the office chair, do you swing your legs or tap your feet? Or twist in the seat at the movies or stand up during a meeting? Or squirm in the church pew? Or grasp for threads of concentration while writing? Are you blue and moody?

You might be a NightWalker; we are everywhere.

One in ten people have Willis-Ekbom disease, Restless Legs Syndrome (WED/RLS), a hereditary involuntary movement disorder. We NightWalkers know the value of motion. For example, rather than thrashing among sheets and blankets, we roam the house or walk in the moonlight. We play board games with ourselves and do deep knee bends.

For people with an undeniable need to move, RLS.org is an excellent resource. Many people do not get the disturbing symptoms of WED/RLS until later in life but no matter the age, WED/RLS is unpleasant yet often undiagnosed.

 

Why Should You Know?

To be informed is to improve the quality of your life. To know resources can, at least, somewhat restore restful sleep. With your knowing you can plan your lifestyle and dietary considerations to improve your quandary.

 

Who Should Know?

You, your medical providers, and your family.

First, you as a sufferer, need to dispel the unspoken notion or fear that you are crazy – unlike any other “normal” person. You need all the information possible. When you understand the cause of your misery, essential treatment can follow.

Next, enlist the support of your family members as you explain why you stand at unusual times, why you walk the floors during the night, and why you avoid night-time activities. Disrespect has no part in your behavior; rather you are merely relieving misery so as to stay with your loved ones. They will embrace you. Also, trust family members who see what you don’t and record their observations. For example, “Mom, do you know that while you napped on my floor, your legs moved every 17 seconds?” At your next doctor’s visit, share that data.

Although it’s up to your physician to treat you, only you can advocate with authority about what you experience. Only you can enlist the aid of an understanding primary care physician (PCP) or specialist. Only you can make the strange requests, such as the extra precaution suggested by the Restless Legs Foundation: have a red label attached on the outside of your medical chart to signal providers you have special needs.

 

Who Makes the Diagnosis?

You and a medical team.

WED/RLS is often misdiagnosed or not diagnosed, so you can do much to speed things along. For instance, visiting rls.org and answering the Cambridge-Hopkins Short Form Diagnostic Questionnaire for RLS, a survey prepared by Dr. Richard Allen, will assure you – or not – what you are dealing with. Another way is to use the diagnostic acronym URGE: Urge to move limbs, usually accompanied or caused by uncomfortable and unpleasant feelings in the limbs; rest worsens or inactivity precipitates symptoms; getting up or moving improves the urge to move. If either of these sources ring true for you, a sleep specialist is the next step.

Before visiting any medical providers: use the Symptom Diary found at RLS.org. Not all medical administrators are aware of or have information about this disease so take with you other pamphlets provided by RLS Foundation.

 

What Causes WED/RLS?

My husband would say, “…it’s in your head…” Indeed it is: at the midsection of my skull in the brain stem which coordinates motor control signals.  According to Doctors Ye-Ming J. Sun, Teresa Hong, Judith A. Neubauer, and Arthur S. Walters, iron deficiency causes damage and cell death in the substantia nigra.  Sleep specialists imply that the interruption of oxygen to the brain caused by sleep apnea episodes also contributes to WED/RLS. 

 

What Can Be Done?

Medications specific to WED/RLS are available. Some patients respond to Requip or Senimet (often used for Parkinson’s disease) while others are prescribed Mirapex and Clonazpam. Your PCP or specialist can help determine which pharmaceutical is best for you.

Also needed: attention to diet and exercise and good sleep hygiene.

 

Management of WED/RLS

Recognize your biological clock and listen to your body’s promptings. Employ distractions to minimize symptoms.

Every person is unique. Thus what ignites WED/RLS in you might not in someone else. However, certain dietary ingredients are suspect. Some have found the food dyes problematic. Did you know hot dogs contain red dye?

The time of night you take your medication and eat are important. The window of  opportunity for less distress seems to be 6 - 7 p.m. You are wise not eat an evening meal after 6:30 p.m. but do take medication with the meal. For this author, medication at 6:45 p.m. leaves only about an hour of activity before medication kicks in. Rather than fight against the effects of the pills, I must be in bed at 8 p.m. or sooner.

And your bladder matters. When uneasiness or wiggles commence, a visit to the restroom helps.

 

Advice from a NightWalker

Don’t panic. Rather redirect your mind. Allow about 15 minutes to determine if your distress subsides. When it persists, walk, work a puzzle, bake, bike, swim, write in your journal, take a bath, etc.  To panic is to open the door for desperation.

Use popcorn and peanuts when in confined settings (air planes, vehicles, movies). By eating one piece – only one at a time – may bring relief. The chewing can be a distraction to the wiggles.

WED/ RLS is a complex disease with many contributing agents. As NightWalkers search for a good night’s sleep, they must become a detective to identify culprits that destroy the quality of their lives. 

 

Anna L. Russell can be reached at This email address is being protected from spambots. You need JavaScript enabled to view it. .

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