just a thought...
just a thought...
I wish the name for this condition was not Restless Leg Syndrome, because our legs are restless as a result of the torturous sensations running throughout our bodies. It would be an entirely different thing if the only symptom was leg movement, but that is what everyone thinks it is. Some people move their legs to stay alert, and many would think that restless leg syndrome would be the diagnosis, because it fits the name. I can't think of a better name for this condition, but I wish whoever names these things would find a name that didn't minimize this condition. Tina
RLS, SLE (Lupus) and Asthma
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Guest
yeah lately i've been developing the same sensations in my hands that have plagued my feet my whole life. and for me, i've never had a problem with my legs-- it's always just been the bottoms of my feet (and now the palms of my hands) that are affected.
so i've also thought that the name is a little misleading.... but at this point it just can't be changed, right? think of all the hard work and progress that has been made in bringing RLS into the light... changing the name of it would surely set that all back a bit as it would create more confusion.
so i've also thought that the name is a little misleading.... but at this point it just can't be changed, right? think of all the hard work and progress that has been made in bringing RLS into the light... changing the name of it would surely set that all back a bit as it would create more confusion.
Hey Darling
Hello Miss Tina,
No Way, No regrets..........It's not something we hadn't all thought of before. I have a friend that ask how my "shaky Leg thing" is going all the time......LOL
Anyway, never regret sharing your thoughts and feelings with us. We all need to be able to say things here......More times than not we all understand.
Hug to you(((((((((Tina))))))))) Much love to ya. And a big "you go girl" for saying it out loud.
No Way, No regrets..........It's not something we hadn't all thought of before. I have a friend that ask how my "shaky Leg thing" is going all the time......LOL
Anyway, never regret sharing your thoughts and feelings with us. We all need to be able to say things here......More times than not we all understand.
Hug to you(((((((((Tina))))))))) Much love to ya. And a big "you go girl" for saying it out loud.
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ViewsAskew
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If my brain is working this morning, many conditions and diseases have had name changes and most of them were helpful. Restless legs does NOT adequately convey what this condition entails. I'd be happier with Ekbom's name (the guy who wrote about it and described it) or something related to what actually happens in the brain, or a made up but official sounding latin phrase 
. Since they now have more information about it, it will have to have a name change - it's not a syndrome anymore, right? Syndromes have no known etiology. RLS know does. They don't know the whole course of action, but they know where it originates.
Maybe we should have a name changing contest to go with the little pins that show our bodies with little electrical bolts going through various body parts.
We could submit our results to We Move, RLS Foundation, and all of the doctors that are researching it.
Ann
. Since they now have more information about it, it will have to have a name change - it's not a syndrome anymore, right? Syndromes have no known etiology. RLS know does. They don't know the whole course of action, but they know where it originates.
Maybe we should have a name changing contest to go with the little pins that show our bodies with little electrical bolts going through various body parts.
We could submit our results to We Move, RLS Foundation, and all of the doctors that are researching it.
Ann
Interesting idea and discussion.
It'll be interesting to see in our lifetimes if it IS reclassified/renamed.
But I guess, Tina, I think you're actually completely right... what name COULD we come up with that would de-trivialize this? that would make anyone who's not experienced it appreciate the severity of it? that would sufficiently encompass the impacts it has on the lives of it's victims?
It's definitely one of those things that folks DON'T get unless they've walked a mile in our mocassins.
Now, I DID rack my brain about this a bit, but I'm not sure how practical a name it would be. Howabouts something like....
The Any Part of the Body Creepy-Crawly, Electric, White Noise, Pain, Achy, Joint and Muscle, Keep Your Feet Away From Mine in Bed, No Driving, No Movies, No Couch-Cuddling, Make You Want To Cry and Scream, No Relief in Sight, Iron Deficient, Tossing and Turning, Sleeplessness and Hopelessness Disorder.
APBCCEWNPAJMKYFAFMBNDNMNCCMYWTCSNRSIDTTSHD
Trips right off your tongue, right?
Hang in there guys. You know if we couldn't laugh, we'd only be able to cry. Can't have that.
And seriously, Tina, I agree with Ann and Bect... it was WELL worth saying and discussing!!!!!!
Sara
It'll be interesting to see in our lifetimes if it IS reclassified/renamed.
But I guess, Tina, I think you're actually completely right... what name COULD we come up with that would de-trivialize this? that would make anyone who's not experienced it appreciate the severity of it? that would sufficiently encompass the impacts it has on the lives of it's victims?
It's definitely one of those things that folks DON'T get unless they've walked a mile in our mocassins.
Now, I DID rack my brain about this a bit, but I'm not sure how practical a name it would be. Howabouts something like....
The Any Part of the Body Creepy-Crawly, Electric, White Noise, Pain, Achy, Joint and Muscle, Keep Your Feet Away From Mine in Bed, No Driving, No Movies, No Couch-Cuddling, Make You Want To Cry and Scream, No Relief in Sight, Iron Deficient, Tossing and Turning, Sleeplessness and Hopelessness Disorder.
APBCCEWNPAJMKYFAFMBNDNMNCCMYWTCSNRSIDTTSHD
Trips right off your tongue, right?
Hang in there guys. You know if we couldn't laugh, we'd only be able to cry. Can't have that.
And seriously, Tina, I agree with Ann and Bect... it was WELL worth saying and discussing!!!!!!
Sara
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Penguinrocks
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maybe a copyright thingy, but there's always the "Electric Slide", "Frankenstein's coming to life moment", "Boot Scootin' Boogie", "Jumpin' Jacks", "Shake, Rattle n Roll" , "Achey Breaky Legs",
"I stepped on a rusty nail all the way up to my head",
Ooo, how 'bout, "Dracula Disorder"? Can't sleep at night, and the light of day makes you feel like you wanna die? One more day come with out sleep.
I'm not making light of our situation, but sometimes ya gotta laugh or like me, all you'll do is cry.
Love you
Penguin
"I stepped on a rusty nail all the way up to my head",
Ooo, how 'bout, "Dracula Disorder"? Can't sleep at night, and the light of day makes you feel like you wanna die? One more day come with out sleep.
I'm not making light of our situation, but sometimes ya gotta laugh or like me, all you'll do is cry.
Love you
Penguin
Beware the Penguin
Hi, Dawn--
You could probably dodge copyright prohibitions for one like Achey-Breaky Legs... and that guy's written songs about VietNam vets and such (bless me, I just spaced out on his name). If we sent him a pile of those Q of L statements we sent "Bect" (sorry about that typo, honey!
), he might sympathize and give us his stamp of approval.
Your were definitely more "manageable" than mine, but they do convey a lot of the essential "heart" of our struggles.
Sara (who is about to go do her own version of the Boot-Scootin' Boogie to alleviate some morning RLS. 
)
You could probably dodge copyright prohibitions for one like Achey-Breaky Legs... and that guy's written songs about VietNam vets and such (bless me, I just spaced out on his name). If we sent him a pile of those Q of L statements we sent "Bect" (sorry about that typo, honey!
), he might sympathize and give us his stamp of approval.
Your were definitely more "manageable" than mine, but they do convey a lot of the essential "heart" of our struggles.
Sara
(who is about to go do her own version of the Boot-Scootin' Boogie to alleviate some morning RLS. )-
Penguinrocks
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Billy Ray Cyrus.
Darn, my hubby and I have been trying to remember that for an hour! Then I remembered it was three names, but couldn't come up with the right combination of three.
Scootin' okay, but still really have the heebie-jeebies in one calf/knee/foot anytime I'm still. Going to go paint one of our bathroom doors; having my mind busy will help, as well as being on my feet, I hope.
Take care!
Sara
Darn, my hubby and I have been trying to remember that for an hour!
Then I remembered it was three names, but couldn't come up with the right combination of three.
Scootin' okay, but still really have the heebie-jeebies in one calf/knee/foot anytime I'm still. Going to go paint one of our bathroom doors; having my mind busy will help, as well as being on my feet, I hope.
Take care!
Sara
YES!
YES!
When I've made it to bed lately or stayed in bed...........My side of the bed is torn up like there's been a fight. Poor Hubby stays as far away as he can.......LOL I do get lots of room that way though.
Tell your sister "wiggles" are still on!
When I've made it to bed lately or stayed in bed...........My side of the bed is torn up like there's been a fight. Poor Hubby stays as far away as he can.......LOL I do get lots of room that way though.
Tell your sister "wiggles" are still on!
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IanFraughton
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I also thought the name should be changed as it makes us sound like we're all bored or something. I'm not dissing the people who came up with it or anything but we do need a better name. A bunch come to mind but I don't want to be banned...
I call my pacing the "Waltz of the Damned". Anyone care to dance...?