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Restless Legs Syndrome/Willis-Ekbom Disease: description and treatments

Updated on December 21, 2017
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Chris spent 10 years learning how to support his wife in her battle with breast cancer. He shares openly about his successes and failures.

Willis-Ekbom Disease/Restless Legs Syndrome

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Willis-Ekbom Disease/Restless Legs Syndrome: a personal account

"My legs bother me." "I want to put my feet on the floor." "What is wrong with my legs?" These were things going through my mind as a child at the earliest age I can remember. I thought these thoughts while sitting in church as a child. My parents were frustrated because I was squirming and wiggling. All I wanted to do was to put my feet on the floor so my legs would feel better. At night I lay in bed, moving my legs to try to get that strange feeling to go away, but it would only go away if I got up and walked. Riding in the car was hard too. Fortunately that was before seat belt laws, so I could get my feet on the floor.

What I was experiencing as a child has continued into my adult life. Today I have a name for these symptoms. It is called Willis-Ekbom Disease/Restless Legs Syndrome and it has haunted me my whole life.

The Strange Sensation of WED/RLS

The old name of this disorder, Restless Legs Syndrome seemed to cause some misunderstanding. I found that most people who had even heard of it thought it was an involuntary movement of the legs. Nothing could be more untrue though. The movement is quite on purpose.

So what is this symptom of Willis-Ekbom Disease/Restless Legs Syndrome? It is a sensation, usually in the lower legs, that is very difficult to describe. Therein lies a problem. If it can't be described, it may not be real. Right? Maybe it is just in the mind of the person experiencing it. Try googling "Restless Legs Syndrome psychosomatic" and see all the sites that say it is in our minds. I want to relate how this sensation feels, but I am at a loss. It is deep, and feels like my nerves have been laid bare and are being stimulated in a way that causes a growing discomfort that can only be relieved by getting on my feet. That may not sound serious, but if I add the word "distressing", does it help to see that this is a horrible condition?

The Causes of WED/RLS

The WED Foundation website says "that WED/RLS involves abnormal dopamine activity in the brain. "It is our basic hypothesis that the low brain iron causes the dopamine problems in the brain, which in turn cause RLS." Also found on the WED/RLS Foundation website is the following explanation: "We think restless legs syndrome may be due to a number of clinical factors, but we also believe that there is a strong genetic component to the disorder," says the study's lead investigator, Carles Vilariño-Güell, Ph.D., a neuroscientist at Mayo Clinic, Jacksonville." Yes, a mutated gene has been found. A syndrome is a collection of symptoms due to an unknown cause. A disease is something more. While not all genetic mutations can be considered diseases, those that lead to further adverse outcomes are increasingly being referred to as diseases. Restless Legs Syndrome is often a condition that continues to worsen with age and causes serious physical issues for those who suffer with it.

Because of this new genetic information, Restless Legs Syndrome has undergone a name change. It is now known as Willis-Ekbom Disease . The new name is founded on the names of Sir Thomas Willis (1621-1675) and Dr. Karl Axel Ekbom (1907-1977).

Certain Medications Can Cause/aggravate WED

I still suffer with this disease, and it has gotten much worse over the years. In 2003 I had surgery on my right shoulder for rotator cuff repair. My WED/RLS got much worse at this time. After doing some research, I found that RLS, while often genetic, can also be caused, or worsened by certain medications. This proved to be the case with me. WED/RLS went from being an annoyance for the first forty-six years of my life to being a horrible, life changing scourge for the past nine years.

The worse thing about this disease is how it has affected my sleep. In turn, the lack of sleep affects other aspects of my life such as my work and social life.

I am sharing all of this personal information for two reasons. First, I want those who do not suffer with this disease to be able to understand if they encounter someone who does have RLS. Second, I want to help educate the public so that those who are experiencing these symptoms, but don't know what it is, can seek medical help. There is help available.

Medical Treatments for Restless Legs Syndrome

There are two things a person who suffers from these symptoms can do. First, visit www.rls.org (The RLS Foundation website) and begin educating yourself about this condition. Second, make an appointment with your doctor to discuss the symptoms. Don't be afraid to take information you find on the Foundation website to share with your doctor. Ask to be referred to a neurologist who has experience treating RLS patients. Ask about dopamine agonist treatments such as Ropinirole, Mirapex and Neupro.

There are also non-drug treatments which can be found by following this link, http://www.rls.org/page.aspx?pid=543#5

Non-medical Treatments for RLS/WED

1. Diet

  • Eat foods high in iron.
  • Consider an iron supplement, but seek the advice of your doctor first.

2. Exercise

  • Yoga
  • Stretching

Now Is the Time to Seek Help

Willis-Ekbom Disease is a serious condition. If you or someone you know, suffers with the symptoms I have described in this article, now is as good a time as any to begin taking advantage of the help which is available. Visit the Willis-Ekbom Disease Foundation website, make an appointment with your doctor. WED will not likely improve on its own, but it can be treated. The sooner you begin, the better for you.

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    • profile image

      cam8510 

      6 years ago

      the sensation with RLS, for me at least, is more general throughout the lower leg and is centered in the feet. I'm not saying that this does not vary from person to person. Does it go away when you are on your feet and start again when sitting or lying down? That is a good test. good luck and thanks for reading and commenting.

    • profile image

      Anon 

      6 years ago

      Wow, I am currently having difficulty sleeping because of this weird feeling in my leg (which is why I'm searching rls on my iPod). I actually am not sure if it is rls. There is always this weird feeling on the left side of the back of my knee, and it has been bothering me since yesterday. I just hope that this won't evolve into a serious syndrome. Best of luck to you too!

    • cam8510 profile imageAUTHOR

      Chris Mills 

      6 years ago from Hartford, CT

      Bobski606, Thank you for reading my hub. I work in a hospital laboratory, so I have a basic understanding of DVT. I would guess that anticoagulants are your friends. Good luck to you. Thanks for commenting.

      Chris

    • Bobski606 profile image

      Bobby 

      6 years ago from U.K

      I didn't know about this disease until now. I can empathize with the genetic mutation as I suffer from Heterozygous Factor V mutation (I basically have issues breaking down clots) and that has left me with an extensive DVT from my IVC to left ankle. Thank you for sharing this information, I look forward to reading more of your hubs.

    • cam8510 profile imageAUTHOR

      Chris Mills 

      6 years ago from Hartford, CT

      justateacher, does your periodic limb movement involve the irritating sensation in the legs that is associated with RLS. I know that some only have the movement, but it still interupts sleep. Good luck. Are you still a teacher.....and what's this nick name, "justateacher"? My late wife was a teacher. Teachers are great....a good one, irreplacable.

    • ananceleste profile image

      Anan Celeste 

      6 years ago from California

      Unfortunally I had to put aside my career because of many health issues that became impossible to hide. I haven't taken meds for it. Believe me is the least of my worries. The lack of sleep is the bi-product of two of my conditions. So I am used to it. take care.

    • justateacher profile image

      LaDena Campbell 

      6 years ago from Somewhere Over The Rainbow - Near Oz...

      I have the same sort of thing, but only at night. My doctor told me it was periodic limb movement disorder. So far, mine just affects my sleep (and only one of the problems that cause me to have trouble sleeping!) and my doctor doesn't want me to have any medication for it right now. I have had this since I was a little kid and my sisters hit me because they thought I was doing it on purpose...I am glad to hear there are medications that help.

    • cam8510 profile imageAUTHOR

      Chris Mills 

      6 years ago from Hartford, CT

      ananceleste, thank you for reading and for the vote. Did you stop nursing because of RLS? That would be a shame. My heart goes out to you. FYI, unless you already know of course, the FDA has approved a new med for RLS. It is called Neupro and is in transdermal patch form. My neurologist is very excited about getting me on it and off Mirapex. Good luck to you.

    • ananceleste profile image

      Anan Celeste 

      6 years ago from California

      Believe you me, I know what you are talking about. It is a nightmare. It affects everything! Sometimes I can't even sit for more than a couple of minutes. Is true I am only at ease when I am walking. For years I even have to eat walking or pacing. People around me find it distressing. I was an ER nurse for a couple of years, while doing rounds and walking around I was fine, but the second i had to sit down to do the charts and other stuff it was frustrating. Voted up!

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