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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Wednesday, January 9, 2013

Restless Leg Syndrome vs. Myoclonus



There are two symptoms of fibromyalgia which are quite common: Restless Leg Syndrome (RLS) and myoclonus.  These two symptoms of fibromyalgia are extremely easy to confuse; in fact, many patients (as well as doctors) are confused by the two terms and use them interchangeably.  However, there is a huge distinction. 

But first: the commonality of the two phenomena: they both interfere with sleep. Yippee!  Just what we fibro's need, right?  (Not!)

Now to the differences:

Restless Leg Syndrome is basically defined as a "disorder in which there is an urge or need to move the legs to stop unpleasant sensations."  It's usually felt in the lower legs, between the knee and the ankle, which makes you feel as if your legs are moving but when you look down, there is no movement there.  It feels quite uncomfortable, indeed so unpleasant, that it feels as if it'll drive you mad.  It often feels as if the legs have bugs or worms underneath the skin and so the legs feel as if they are trying to get rid of them.

Furthermore, the following are characteristic of RLS, as defined by several sources as:
  • usually occurring at night when you lie down, or sometimes during the day when you sit for long periods of time
  • may be described as creeping, crawling, aching, pulling, searing, tingling, bubbling, or crawling 
  • frequently occurring in the upper leg, feet, or arms. 
Usually, you'll want to move around and even walk and this really helps to relieve the awful sensations.  As mentioned above, they usually occur during sleep hours, which the NIH calls "periodic limb movement disorder" (PLMD) and that they annoyingly disturb sleep, that Holy Grail we fibro's crave (of course!).

The symptoms tend to worsen when you're flying or traveling by car, in class or at a meeting.  In other words, at those times when you're basically still.   All symptoms are believed to worsen during stress and emotional "upset." (Huh! What isn't?)  And yet the NIH site says "no one knows what causes RLS."  Talk about talking out of both sides of their mouths!  
Watch that psychological/psychiatric wastebasket voodooism!  There's supposedly a genetic component to RLS. (Yeah, yeah, blame the parents if you don't know what causes it? Haha!)


RLS is often treated by Requip (ropinirole) and Mirapex (pramipexole).  Low dose narcotics are also used effectively in many cases.  (For more on RLS, the NIH site is here.)

Myonclonus, perhaps the "cousin" of Restless Leg Syndrome for our purposes, is defined as "a neurological condition characterized by sudden, abrupt, brief, INVOLUNTARY, jerk-like contractions of a muscle or muscle group."  In other words, the body DOES move, involuntarily, in the case of myonclonus.   

Mine, for example, is so bad that the entire body used to jerk up into the air, off the bed, plank-like, 4 feet up, and then boom, down.  It used to wake hubs up when I hit the bed like a cannon-ball.  Other times, my head is involved, as well as one shoulder or the other, jerking from being overtired, with a Tourette Syndrome-like look about it.  When I was at the "major medical center" with my sick daughter and had done too much work or gone too long without medication, the myoclonus would come roaring back and we knew it was time for another family member to relieve me for at least 12 hours of rest.

Myonclonus is often treated with Klonopin (clonazepam), though doctors are under a lot of pressure (from the insurance companies, peer pressure, the medical board, etc.) to avoid using benzodiazepines like Klonopin because it is a controlled substance in the valium family. 

However, there is a caveat that should be included here. The FDA has approved Requip for use in RLS.  On the other hand, the FDA has not approved Klonopin for treating myclonus.  Why should you care?

You should be concerned because the insurance companies have a huge say in your care.  Because the FDA has not given its OK for the use of Klonopin for the treatment of myonclonus, your insurance company may use that as an excuse to not reimburse you for Klonopin.  It's only "off label use," at the discretion of the doctor, and many knowledgeable doctors prefer Klonopin  - until they hear which insurance you have.  Rather than have a fight on their hands, they may very well cave in and go along with the FDA, an agency, I wholeheartedly admit I have no fondness for, for many legitimate reasons.  (Viagra, and it's sudden OK comes to mind; Vioxx being taken off the market for dubious reasons yet Lyrica and Lipitor remain on the market...but that's a topic for another conversation!)

So, there you have it, the differences between Restless Leg Syndrome and myoclonus.

A big BTW: since both conditions contribute to insomnia, both medications have a sedating effect on most patients.  Therefore, it's wise to use them at night when you're ready to go to sleep.  In fact, I take ANY meds which may possibly have a sedating effect, at night.  I try to get the sleep wherever I can find it - legitimately, of course - and after discussing all with my team of doctors.

Basically, it all comes down to this: Restless Leg, you want to move your legs; myonclonus,  you have no control.  Now isn't that easier to understand than the BS the NIH and the FDA send out?

And in the meanwhile, I hope all are doing their best, only better.  Ciao and paka!
Nervous System Pathways



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9 comments:

  1. I never knew what the name was of that sudden jerk thing that happened to me all the time. Now I know! Makes perfect sense now too.

    I probably have RLS, never being dx'd for it, I don't know. I certainly get that squirmy nerve feeling in my knees or hips often enough. Almost always when I'm overly stressed or over tired (insomnia phase).

    The same is true for the Myoclonus then. No dx (diagnosis) but now that I've read the explanation I know I have it. That stupid uncontrollable sudden jerk happens often enough, but again moreso when I'm overtired or stressed.

    No fun at all!!

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    1. Sharon, talk to your doctor about it next time you see him/her. It's good to discuss and then figure out if something should be done about it. And it's also good to have it in your chart, documented. Take care! xx

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    2. So sorry. I wrote Sharon when I meant Shannon! Shame on me! xx

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  2. I thought RLS is bad enough already but now i am afraid of what if. I haven't diagnosed yet but I think i do have one or the other. Great informative and scary information. Thanks.

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    1. Hope you get help soon, Jasmin. Let me know how it goes. Thanks for writing in! xx

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  3. Myoclonus: Tourette's-like, involuntary, 1 leg
    Restless legs: voluntary, 2 legs

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  4. Thank you Irene for speaking out. I have been diagnosed with both. Nocturnal Myoclonus and RLS. It has been 13 years now. I have literally seen every natural, non-natural, you name it I`ve seen it...and unfortunately the only darn thing that works and allows me to stay sane with some form of sleep, is the very paradoxical Clonazepam. I know many call it the evil pill, but I tried not taking it for 2 years and almost died from no sleep. Ain`t doin`that again. What keepe me going way more than that is my Lord and Savior and like you Irene,....laughter!!!! :) laughter is the medicine of the heart. I have gone through every step of the phases...anger, sadness, self-pity, suicidal...now I`m leaving it all to the One who knows All things. Until then, I do the best I can to stay above. I have terrible days and I have not so bad days, and thank God, I have some good days, even though I always chronically feel like something is foreign in my body....I`ve noticed what helps me personally is Selenium, Magnesium, and lemon balm tea, and another tea forget the name...but I can`t take those teas too close to my meds...or it has the counter effect...iron is a big one as well...hope it helps someone here.
    God bless you all.

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  5. Oh yeah, and Ginko Biloba tea....helps with spasms.
    And Irene...you are ultimately blessed to have a family who supports you....in this day and age...you tell people you have health issues or have to take a pill to stay on top...they sort of pull away, as if you`re contagious or something...it`s like people expect perfection in every way to even consider going out with a person...kind of sad...oh well, at least I`ll know the person who chooses me will take me with all that I am , and I will do the same with the other person...this condition has brought me to a greater place of compassion for others who suffer chronic ailments.
    Peace.

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  6. I have suffered with the jerks in my legs for years. It first started in the legs (between the knee and ankle), now I have it in my arms. I always get it when I rest, but mostly as I am falling asleep. I have the feeling of no circulation in my legs and arms, yet I am very active and do not have a sedentary job. My family see my jerks if I fall asleep in the chair and think I'm weird. But I would trade with them anyday. I often think could this be linked with fibramialger? Does any one know?

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