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Willis-Eckbom Disease/Restless Legs Syndrom: my life with this disorder

Updated on November 24, 2017
cam8510 profile image

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

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About Restless Legs Syndrome

I'm sitting here at my computer at 2:33AM writing this hub. I am supposed to leave for work in an hour and a half. I haven't slept. I suffer with a severe case of Restless Legs Syndrome. I have found that most people do not have any idea what RLS really is or how it can affect the life of one who suffers with it. In this hub, I want to simply tell some of my experiences with RLS.

Before I share some of my experiences, let me explain a little more about Restless Legs Syndrome. RLS is often confused with another disorder known as Periodic Limb Movement Disorder (PLMD). The two are similar in that there is movement of the limbs. They are different in that limb movement with RLS is voluntary (when awake). Movement helps to relieve a very uncomfortable, even distressing physical sensation. With PLMD, movement is involuntary and does not include the sensation associated with RLS. The only way to get relief from the sensation in the legs with Restless Legs Syndrome is to get up and move.

The name Restless Legs Syndrome is unfortunate because it is misleading. It puts the emphasis on leg movement and doesn't reference the distressing sensation which causes leg movement. Also, legs are not the only parts of the body that are involved. Arms, the trunk and even the mouth can be affected by the sensation of RLS.

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My Experiences With RLS

My first memories of Restless Legs Syndrome, though I didn't know the name then, were of being in church with my parents. From their perspective, I was wiggling, squirming, trying to stand up and being generally disruptive to the church service. From my perspective, my legs felt weird and I knew from experience that if I could stand up, the weird feeling would go away. My parents would routinely take me out of the service and spank me. Remember, this was in the late fifties and early sixties when spanking was not frowned upon. At night, I would be forced by Restless Legs Syndreme to get out of bed to gain relief. I don't remember ever trying to explain the physical sensation in my legs to my parents until I was well into adulthood. If I were a child today, I suppose I would be diagnosed as ADHD.

As I got older, my RLS (still undiagnosed at the time) was only a minor, occasional occurrence. It would affect me in bed or when on long drives in the car. By that time I had simply accepted it. One time, as an adult, I asked my doctor about this strange sensation. That was in the 1980s and my doctor had no clue what I was talking about. I dropped the subject.

Prescription Drugs Can Cause WED/RLS

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Drugs that can CAUSE RLS

In 2003, I had shoulder surgery and was prescribed narcotic pain medication. My RLS got many times worse and never got better even when I stopped taking the medications. I have learned since 2003 that taking certain medications is a common way for RLS to either start or to get worse. Since then, RLS has been a major, disrupting factor in my life. Due to lack of sleep, I am not as mentally sharp at my job and I am usually fatigued which can affect my family and social life. Drugs which can be prescribed for the treatment of RLS.

I will end with this humorous story. A friend and I recently went to see the comedian Red Green (of NPR and duct tape fame). Because of my RLS, I try to arrange to sit on the aisle so that I can get up and move around if my legs start bothering me. We looked for our seats at the show and found them in the middle of the row. I looked right and left, only to see dozens of legs blocking my way. As the show got underway and Red Green was hamming it up on stage, my legs were hamming it up, RLS style, in the cramped space. I was stretching, rubbing, squirming and really looking forward to intermission. That is when Red Green, bless his heart, broke into a multi-joke segment on the humor of the name Restless Legs Syndrome. There I was, resisting the urge to kick the back of the seat in front of me, while Red Green talked about a man who had gotten pulled over by a police officer. While standing outside with the officer, the offender kicks the cop's car. The officer objects and the man says "hey, I can't help it. I have Restless Legs Syndrome." Then he kicks the car again. After intermission, Red Green began the next session with more jokes about RLS. I have to admit, I was laughing along with everyone else.

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    • Laura Pierce Case profile image

      Laura Pierce Case 

      14 months ago

      I have suffered with RLS since I was 26. I am currently 64. My symptoms have gotten worse through the years as my doctor told me they would. I take Lyrica and Temazapam to get to sleep at night then awaken with my whole body literally ringing with RLS three to four hours later. Through the years I have run the gamut of drugs. Mirapex worked great for awhile but you guys need to beware. Mirapex will augment your condition so that you will need higher and higher doses and then you will start having severe daytime symptoms. My experience with Mirapex and then the resulting nightmare of withdrawing from it compels me to warn you to get off of it ASAP! And for those who haven't used it yet, please don't start it. All that being said, I am looking and searching for ANYTHING that will relieve my middle of the night symptoms. I am writing this at 3 in the morning which is a typical awake and suffering time for me. I am currently trying CBD oil taken orally. It seems to calm my system in an hour or so so that I can lay back down for a couple more hours of rest. Has anyone had experience with CBD (this is hemp based oil with the THC taken out so that it is legal even in states where medical marijuana is illegal). Yes, those of us with severe RLS are few and far between. We have to be our own advocates because frankly the drugs that relieve symptoms will only work for so long and then quit working after some months or years. I refuse to give up hope that there is something that will become the savior to those of us who need relief. God bless all of you in your own quests. Let's share what we have individually found so that we can help one another!

    • jlpark profile image

      Jacqui 

      3 years ago from New Zealand

      Best of luck, if you choose to try it - I'd be curious to know how it goes.

      Ropin has the same effects, thankfully I've not noticed any compulsive behaviour in myself, nor have family.

      Mag seems to help as well, so I figure it should to something for you.

      Thanks for sharing.

    • cam8510 profile imageAUTHOR

      Chris Mills 

      3 years ago from Flagstaff, AZ

      Jacqui, the side effects would be my main reason for stopping mirapex. I tried ropinirole and it didn't work for me, although I know it does for you and many others. Mirapex can cause compulsive behavior. Some people go crazy at the casino as a result of taking it. I can't see any compulsive behavior in myself, although I may not be objective enough to see it. I just know it works on the RLS symptoms, and that makes it worth a lot to me. I suppose if the magnesium and fish oil work just as well, I'd be inclined to go that route. Also, when I left the mirapex behind when going to Portland, the withdraws were pretty severe. I'll post here if anything significant happens.

    • jlpark profile image

      Jacqui 

      3 years ago from New Zealand

      I guess knowing what you're in for if it doesn't work would make anyone hesitate. Let us know how it goes if you do try it - but if mirapex is working...why change? I only changed cause of the effect Ropin has on a foetus.

    • cam8510 profile imageAUTHOR

      Chris Mills 

      3 years ago from Flagstaff, AZ

      Jacqui, you are the only other person I have met who has symptoms like mine. Yes, up to my chin, gums and tongue. I am on mirapex, but my chiropractor wants me to try magnesium and fish oil for a few months and then try going off the mirapex. I don't know why I'm hesitating, but I haven't tried it yet. I went to Portland, OR once to visit my son and forgot my meds. It took far to long to get them sent to me, and it was several days and nights of misery. It is a debilitating disease, that few understand. Thanks for reading my article and for commenting. I appreciate the visit.

      From one 'wiggler' to another!

    • jlpark profile image

      Jacqui 

      3 years ago from New Zealand

      I also have RLS - except that the L in RLS for me is Limb, not just Legs. I've been a 'wriggler' since I was a child, but it started getting worse around 25yrs of age. My legs are worst affected, and I'll know if I'm in for a night of it with the sensation starting in my feet and calves. But if I forget my medication, I can be struck with a full body version (pretty much everything from my chin down) on occasion...particularly in hot weather, or humid climates - worst one was forgetting meds one night in Malaysia...ended up in the bathroom, pacing and wiggling, reading a book...until the Ropin kicked in.

      I've found that Tramadol also works - as I needed to stop the Ropinerole whilst pregnant with my daughter and RLS gets worse in pregnancy (some without RLS can get RLS in 3rd trimester but only in pregnancy). Now, with daily dose of magnesium, and Ropinerole - I've had one attack in the last month, but nothing like I used to, and seems to help the daytime wiggles too.

      Thanks for sharing this hub...from one 'wiggler' to another!

    • cam8510 profile imageAUTHOR

      Chris Mills 

      6 years ago from Flagstaff, AZ

      Miss1magination, Yes, I have heard of people doing what you did when you were younger. In fact, I still bang my feet on the floor, stomp, walk on gravel. That is all really bizarre to those who haven't been exposed to RLS before. I am glad you found relief with Mg. Has your boyfriend tried Mg? My condition has gotten worse so that I now have the sensations in my arms, trunk and face. But it is controlled pretty well with medication. Thanks for reading and commenting.

    • miss1magination profile image

      miss1magination 

      6 years ago

      My boyfriend suffers from Restless legs he can't sit in one spot for a long time otherwise he gets the urge to move he's legs. When I was younger I used to sleep on my stomach, hitting my legs continually onto the bed it seemed to relieve me? have you heard of this. I read this was a sleep disorder or restless legs but I don't seem to do this anymore since taking Magnesium which now helps.

    • tonie2weeks profile image

      tonie2weeks 

      6 years ago

      I have this and it is a nightmare.. you literally have to get up and walk .. I spend many nights up and down with it and to get it on a plane train or automobile.. clearly causes extreme distress.. I still never know when its going to come on....

    • cam8510 profile imageAUTHOR

      Chris Mills 

      6 years ago from Flagstaff, AZ

      Iamsam, care to elaborate? Right now i'm not sure if it's my writing or this disease that is strange.

    • Iamsam profile image

      Helna 

      6 years ago

      Very strange???

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