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Restless Legs Syndrome/Willis-Ekbom Disease

Updated on December 16, 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.

About This Article on Restless Legs Syndrom/Willis-Ekbom Disease

This article describes the disease commonly known as Restless Legs Syndrome and why the name was changed to Willis-Ekbom Disease.

Willis-Ekbom Disease, formerly Restless Legs Syndrome
Willis-Ekbom Disease, formerly Restless Legs Syndrome | Source

A Personal Note

I have personally suffered with the disease formerly known as Restless Legs Syndrome and now known as Willis-Ekbom Disease since my earliest memories as a child. Throughout my life, I have endured being misunderstood by my parents, physicians and employers. I have published two other articles about Restless Legs Syndrome / Willis Ekbom Disease and invite you to read them as well.

Restless Legs Syndrome: living with RLS

Restless Legs Syndrome: description and treatments

The Name Change

Restless Legs Syndrome has recently completed the lengthy process of having a much needed name change. From now on, the disease will be known as Willis-Ekbom Disease (WED or WED/RLS). The Restless Legs Syndrome Foundation, located in Rochester, Minnesota, recently announced its own name change to coincide with that of the disease. Read more about the disease and name change on the Willis-Ekbom Disease Foundation website.


About the Disease

It is estimated that seven to ten percent of the world’s population has Willis-Ekbom disease, including seven million in the United States and Canada. Willis-Ekbom disease is associated with a strong urge to move the legs or other parts of the body as a result of an uncomfortable and often intense neurologic sensation. The sensations are most active when the person is at rest, such as sitting for long periods or in bed.

The majority of people who are affected by Willis-Ekbom Disease have a mild case, which can be treated by lifestyle changes including exercise and better sleep habits. Many others are seriously impacted by WED, causing disruptions of sleep which can affect their personal, social and vocational lives. Various medications have been approved by the FDA for the treatment of WED which can reduce symptoms dramatically.

Reasons for the Name Change

  • To Drop Incorrect Descriptors. WED can affect not only the legs, but the arms and other body parts as well.
  • To Enhance Universal Recognition. Translation into other languages is simplified.
  • To Increase Disease Awareness. The name change will provide opportunity to further educate clinicians, research funders and the public about Willis-Ekbom Disease.
  • To Move Away From Negative Connotations. Similar steps were taken when changing the name senile dementia to Alzheimer Disease and mongolism to Down Syndrome.
  • To Decrease Trivialization and Ridicule in the media.
  • Proper Acknowledgement: The new name acknowledges the first known description by Sir Thomas Willis in 1672 and the first detailed clinical description by Dr. Karl Axel Ekbom in 1945.

Proper Recognition

Over the past several years, Willis-Ekbom Disease / Restless Legs Syndrome has finally received much needed attention and is today recognized as the potentially serious disease that it has always been.


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    • cam8510 profile imageAUTHOR

      Chris Mills 

      21 months ago from Green Bay, Wisconsin...for now

      Belinda, I am able to empathize with you about your condition. My symptoms are also in my legs, arms, as well as my lips and gums. There are alternatives to opioids. I suggest you see your doctor as soon as possible and if you are not already seeing a neurologist, have your primary care physician refer you to one. Talk to the neurologist about Ropinirole, pramipexole, and rotigotine which belong to the class of drugs called dopamine agonists. I also suggest you avoid Pramipexole if at all possible. It works very well, but if you read about the side effects, you will understand why I caution against its use. I personally take Pramipexole. You will find relief this way. You and I suffer from an advanced condition of RLS. You may also wish to try some of the alternative treatments. The web address for the RLS Foundation is Join this group and you will find a great deal of support from people who understand. Good luck.

    • profile image

      Belinda Bailey 

      21 months ago

      I've had this condition ever since I can remember and I'm 62 now and I'm on pain medication. The only symptoms I have are terrible aches in both of my legs or sections of my legs at one time and now it's in my arms and the only relief I get are from opioids. I only take them when the pain starts and I don't know what to do if I'm not able to take these anymore due to the National attention of people that overdose on opioids.

    • cam8510 profile imageAUTHOR

      Chris Mills 

      6 years ago from Green Bay, Wisconsin...for now

      Sallybea, thank you for taking time to read and comment. Sorry to hear about your friend. There is treatment available and I am happy to be able to help spread the word.

    • sallybea profile image

      Sally Gulbrandsen 

      6 years ago from Norfolk

      Someone I knew suffered with this disease whilst I was living in South Africa. The person subsequently died though I am not sure if their death was related to this condition. This is the first time I have come across such a detailed explanation of the disease. Very informative, thank you.

    • cam8510 profile imageAUTHOR

      Chris Mills 

      7 years ago from Green Bay, Wisconsin...for now

      Gary, I've tried several homeopathic treatments and they just don't work for me. My lifelong condition was intensified by many times in 2003 due to narcotic meds for shoulder surgery. Since then, without pramipexole, I would not sleep a wink. I am taking the bare minimum to keep it under control.

    • Emanate Presence profile image

      Gary R. Smith 

      7 years ago from the Head to the Heart

      Very interesting, Chris. Kati and I both have had severe leg cramps and restless legs. Years ago I took quinine until it was removed from the market by the FDA. Then I found a homeopathic remedy which contains quinine and it helps, but is not available in Germany where all American supplements and remedies are verboten. Here, I found a homeopathic with calcium and magnesium which helps if I take enough of it. Thanks for the good information and best to you.

    • cam8510 profile imageAUTHOR

      Chris Mills 

      7 years ago from Green Bay, Wisconsin...for now

      This one has been waiting to be taken seriously since 1672. WED has been proven to be caused by abnormal brain chemistry and has specific genetic elements. If it can't even get a serious name, how will it get grant money for research so a cure can be found?

    • ib radmasters profile image

      ib radmasters 

      7 years ago from Southern California

      Since the cure for polio in the 1950s, there has been a death of medical cures for diseases, but a huge list of naming diseases.

      I would like to see diseases cured rather than named.


    • cam8510 profile imageAUTHOR

      Chris Mills 

      7 years ago from Green Bay, Wisconsin...for now

      Rolly and Michael, Thank you for reading and for the comments and votes. I am personally so thankful for the research and development by the drug companies. I take a Parkinson's Disease medication daily which keeps the symptoms down. Without that medication, normal life for me would be impossible.

    • Michael-Milec profile image


      7 years ago

      Hi Chris.


      You're amazing writer . Following you lead me in type of he world which I didn't know before existed. Never heard abot" WED " , it's surely cruel as any other affliction. ( Thank you you Adam .) Living healthy whole my life, ( my wife had an interval between two visits to a physician over thirty years ) , now we have to have " regular " check - ups ( ? ).

      You told me what to do , " ... Can be treated by lifestyle changes, including excersise and better sleep habits ..." There are a few more of every individuals " special requirements : we are obliged to study/ know/ listen to our body and to treat it accordingly. To apply " preventive " measures starts on a solid foundation simply named " discipline ."

      This little I know, the rest I'm learning.

      Up and useful.

      Stay blessed.

    • Rolly A Chabot profile image

      Rolly A Chabot 

      7 years ago from Alberta Canada

      Hi cam8510... very informative and a well written article. Over the years I have talked to a few with this. It does make it hard for people to get the rest they need especially when their sleep is subconsciously broken.

      Well written, and voted up for certain...

      Blessings from Canada

    • cam8510 profile imageAUTHOR

      Chris Mills 

      7 years ago from Green Bay, Wisconsin...for now

      Deb, it can be a miserable existence if the condition is moderate to severe and untreated. If you did have it at one time, you are fortunate now to be free of it. I take a Parkinsons disease drug every day which enables me to live normally.

    • aviannovice profile image

      Deb Hirt 

      7 years ago from Stillwater, OK

      I thought I had this for a while, but it seems to have subsided tremendously. I had an accident many years ago, which disrupted a number of nerves in my legs. They are still a bit problematic, but nothing like what it used to be.

    • cam8510 profile imageAUTHOR

      Chris Mills 

      7 years ago from Green Bay, Wisconsin...for now

      aikikenjitsu, You are right about that. I have two more articles on this subject, but I would recommend the WED Foundation Website as a place to find medical information. It is a very thorough site which includes forums and chat rooms to discuss your situation.

      My articles are listed after the first paragraph of this article. Thanks for visiting. Good luck to you and your wife.

    • aikikenjitsu profile image

      Robert Mc Dowell 

      7 years ago from Puyallup, WA

      Being a senior with a wife with a barrel of medical conditions, this is very interesting. This is an indication that the medical community is taking this affliction as a real medical problem that needs medical or other attention.

    • cam8510 profile imageAUTHOR

      Chris Mills 

      7 years ago from Green Bay, Wisconsin...for now

      Pamela, Thank you for reading my hub. I like to get the word out about this disorder because it is so misunderstood. I appreciate your interest.

    • Pamela99 profile image

      Pamela Oglesby 

      7 years ago from Sunny Florida

      I was glad to see they changed the name as it is definitely more fitting for this disorder. This is a very informative hub.


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