RLS - is the name one of our biggest problems?

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Aiken
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Joined: Thu Jul 14, 2005 6:53 am

RLS - is the name one of our biggest problems?

Post by Aiken »

Hey folks,

I inadvertantly set off a little firestorm in another thread that was discussing a useful subject, and as a result it was locked. (If you'd like to cuss me out about that, please let's do it in PM, as we've been advised not to continue in public.) I want to revive the original topic of that thread, or at least one of the directions it was headed in.

Nearly as long as I've had RLS, I've felt like the name is one of the biggest symptoms I have had to deal with. Any of you who have seen the various sarcastic videos and stories we've run across lately will know what I mean. How can we be taken seriously when we explain our mood, our energy level, or our schedule with a phrase that evokes ridiculous mental images and laughter?

I guess my question is... how do we go about getting the community, the healthcare industry, the researchers, etc., to call it something else? And what do we want them to call it?

I'm dead serious, and I know it's an immense task that we'd have a heck of a time pulling off, but I think most of you would agree with me that it would be worth whatever investment is required, both for us and future generations. I just don't know where to start. I guess square one is... what do we really want to call it? I personally don't know, and I worry that we won't get a name that will stick until someone really understands what the underlying problem is. The current name is just a description of one symptom of the syndrome, but it's hardly a meaningful description of the problem.

It may be that we need to recruit people from several fields to accomplish this. Maybe Dr. B could help. I'm not sure if he'd be interested, but I expect he has a sufficiently high profile position in the RLS world to be heard if he were to speak out on the subject.

Anyone have thoughts on this?
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

sardsy75
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Post by sardsy75 »

Hey Aiken

Whenever I've had to tell people who AREN'T doctors (and this includes, nurses, operating theatre staff, aneathetists, dentists ... oh and useless Cops ... need I say more?) that I have Restless Legs Sydrome I usually wish I had my camera with me to take a photo of the "WTF???" look on their faces.

Restless Legs Syndrome has had the mickey taken out of it so much I refer to it as Eckbom Syndrome ... coz that gets more attention. Come to think of it, that's the name the UK site uses, not RLS. Food for thought?

Technically it ain't Restless LEGS Syndrome coz it doesn't just affect legs in a lot of cases, so whoever thought up the RLS name needs a boot up the caboose for that.

Yes we do need a high profile "someone" to get the general hoo-ha public who think we're a bunch of idiots complaining about nothing.

Searching way back into the dusty and cobweb-filled depths of whats left of my memory, there IS someone in a high-profile position who HAS RLS ... Vincent D'Onofrio (Det. Robert Goren from Law & Order: Criminal Intent). Why not start there ... ?

If Michael J Fox can do what he's done for Parkinson's ... why can't we start with Mr D'Onofrio? Surely, considering the sheer number of people in the USA alone, there is SOMEONE with a profile a lil bigger than ours who can help our cause? Just a polite letter from the foundation, and/or some of our members ... just a passing thought.

I could always do what I did back in '04 and annoy every single RLS Group Leader who's email I could get my hands on in the US, Australia and World Wide and all the other RLS related websited, when we started our "Quality of Life" statements. I'm pretty good at trodding on toes ... nicely 8)

Anyway, that's my two cents.

Gotta go ... my legs just went skitz kitz on me ... I DO hope it's just rain coming and not something else.

Lovin ya & leavin ya for now to go raid the "extra's box".
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

pedrime
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Post by pedrime »

Aiken, I'm glad you started this firestorm. I agree, the name is one of our biggest (if not THE biggest) problems. After reading this I personally will refer to it as Eckbom when discussing with any MDs. A high-profile spokesperson might help. Jon Stewart is another RLS sufferer but who knows if he'd get involved.

I wonder what Dr. B. will say.

Anyway thanks for getting this going.

Meg

becat
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Post by becat »

Thank you Aiken.

There are several celebs that have this I know of 3 that come to mind.

Keith Obberman (sp?) Of MSNBC or was?

Brit Hume of Fox News

Corben Bersen and his wife, and they both have seen and worked with Dr. B. on media and it went no where. Took me forever to even find the interview.

I'm not sure if any of the PR firms I've worked with have tried to go with that, celebs I mean, even when I bring it up. So I am not sure if anyone is interested in helping, but that could change.

One problem is that Dr. B. is sorta alone in how he treats his RLS patients, in that he does not mind giving the meds you need or might need. I only know this from those, that I know, who see him. He's not like most of our expert docs that shy away from meds., as much as possible. So while he is a champion of our cause and truly seems to understand the ebb and flow of this disorder, not all docs see it that way.

And yes, while I have been involved for 4+ yrs, we have gotten the "list of symptoms" expanded to include other parts of the body, making it a whole body issue for some, and painful RLS, to be included as well.
Yup, I said WE did that and we did.
I'm so proud, :D anyone that stood together in the Quality of Life statements can stand proud that we did bring change. That was cool.

I do have to say that we need a name that covers us all and the many to follow. I do use Ekbom Syndrome when possible, when I do not have to explain.
However, sadly it is still not enough to cover what damage is really done.

Or is it?

Lynne

sardsy75
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Location: Queensland, Australia

Post by sardsy75 »

What was that old motto of mine?

One step at a time ... one day at a time ... and stay positive!

Our first step might just be the use of "Ekbom Syndrome" and go/grow from there.

Already there's at least four high profile people been named ... maybe that's the next step ... not an out there in your face step ... but a "would you mind being a part of our mission?" It would be ludicrous to think that they would not also be at least a lil miffed at RLS being treated with such shocking publicity.

Putting the onus on Dr B would be unfair. Yes, he's held the flag high for our cause, but we need more doc's like him. There's nearly 2000 members on this forum ... surely we could get people who have been blessed with finding Dr's like Dr B, to ask their Sleep Doc, Neuro, GateKeeper if they'd mind getting behind our cause ... Just a thought.

I'm off back to bed. Worn out from skitz kitz legs last night and tryin to shove Ms Hyde back in her box.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

SquirmingSusan
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Post by SquirmingSusan »

I believe that "Eckbom Syndrom" refers to another disorder, something to do with hallucinations of insects crawling on the body or some such. It actually doesn't sound much different from RLS.

The technical name for RLS is "Wittmaack-Eckbom Syndrome." (sp?) I do wish it were simply "Eckbom" because that could actually catch on. But add the Witmaack in from of the other, and it gets to be a mouthful. Unless we abbreviate it, WES.

Maybe a new abbreviation that stands for a few really technical and dire sounding medical terms? Some terms that more accurately describe the condition.
Susan

Neco
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Post by Neco »

I've seen conflicting results for Eckbom Syndrome, some leaving off the Wittmack and refering to is as RLS... So I dunno.. isn't helping I guess

Rubyslipper
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Post by Rubyslipper »

Going out on a limb here...

So why do people think the name Restless Legs Syndrome is funny? It describes what it is. Yes, I know that it doesn't FULLY describe what it is or does. We now know that it can affect more than just the legs.

What about St. Vitus' Dance, Hashimoto hyperthyroidism, Goodpastures's Syndrome, Pyronies' Disease, scurvy, diverticulitis, gout...all valid problems. Is/has the media made fun of these? Possibly at some time but not with the intensity they have with RLS.

I don't feel it is the name as much as the picture the name brings up, which is what we have. Many have restless arm, restless body etc.. but it all comes down to this; we have to move to gain comfort. Restless, you bet. Please do not get me wrong, I am not knocking anyone's thoughts or opinions.

If we change the name now, I think it would just tend to cancel out any of the advances we have made. "Look it's can't be too bad, they've run and hid."

And maybe I'm wrong. Wouldn't be the first time.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Aiken
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Post by Aiken »

I think what makes the image funny is this notion of a person's limbs sort of moving of their own accord, flopping about without the person's permission. Even I have to agree that it's a somewhat amusing mental image if well-choreographed in your head, using good comedic timing, and so on.

Of course, it's not funny at all if you have PLMD, or Parkinson's, or numerous other twitchy disorders. I've only experienced a few weeks' worth of PLMD, but I have to say it was one of the most distressing things I've ever experienced, above and beyond the aggravations of regular creepy-wiggly RLS. So, even though I consider myself pretty empathetic to movement disorders, here's still a big chunk of my brain that breaks rank and tries to see humor when I don't want to. I dunno do what to do about, except to suppress it. I'm not sure what I can realistically expect from a person who's never had personal experience with it.

There's also the fact that people instinctively make jokes about things they don't understand, or worse, can't verify. It's just part of being human.

So, what I'm thinking is, something memorable, yet dry. Something that people would recognize after a while, but have no possible associations or preconceptions. On that level, Wittmaack-Ekbom is fine, except I'd also like for there to be something descriptive of the dysfunction itself, some tidbit people could remember about it without remembering a (funny) mental image of the symptoms the dysfunction produces.

I dunno. It's tough. Like I said, it may be difficult to name it while it's still a syndrome, by which I mean a collection of symptoms, rather than a disease with at least moderately-understood causes.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

dogeyed
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Post by dogeyed »

I have found it helpful when telling people what's wrong with me, I say, "I've got bad legs." This takes care of it. But of course for me, I've also got a broken back from a car wreck, too, several forms of insanity, a limp, fatty liver, etc., etc., so most of the time I just refer to my bad back, which is what triggered almost everything else that's wrong with me anyway. "Restless legs" without "syndrome" is how it's usually said.

Ekbom's syndrome is what is was originally called, and I suppose you could get some backing from various experts, and maybe do a petition, and then write a letter to all the major medical universities that says some patients prefer Ekbom's, I don't know.

Then you could also refer to it as a form of epilepsy, which there's no scientific proof of that, but then you run the risk of having people who have epilepsy wanting to engage in conversation with you. And you certainly couldn't put that in an application for disability. As it's named now, I have found plenty of people who either have it or know about it, and like to talk about it, that I might not otherwise have been able to talk with if I hadn't called it Restless Legs.

If you are thinking giving it a more proper name might say more about the seriousness of the condition, the effects of RLS vary with people. Some have the severe kind, which the doc who first diagnosed me said that, and some just have it intermittently, some have had a mild form all their lives, some developed it more recently. I have a relative who cannot understand how come I am so bothered by it, when her type is much less annoying than mine. So, while a name change might give the condition more "heft," the reality of its seriousness will still depend on the person.

I wish you the best in finding a better label for our condition, as it is poorly understood, but until they figure out what in the world this really is and what causes it, I imagine it's gonna stay in the lexicon of health people like it is for a long time. At least most people aren't referring to it as a "sleeping disorder" anymore, which is putting the cart before the horse, which can lead to incorrect diagnosis, which is a REAL problem.

runner1
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Post by runner1 »

hi

Rls can be referred to as ekbom-syndrome after the 8 patients he studied in 1942.
However,there is some evidence that a doctor,thomas willis in 1652 treated patients with rls,he called it the'watching evil'. :twisted:
He was an emminent graduate of oxford uni.

I agree that sometimes,the use of rls tends to minimise the nature of what we have to deal with.
I have yet to hear negative things about this disorder here in the uk,or maybe i just dont give a stuff if it has so hve not bothered to listen,not sure,but i dont think the term rls does cover enough of our symptoms.

mackjergens
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Post by mackjergens »

When I use the term Restless legs, I always follow it up by saying its a Neuro problem, and at times will go into a little about how people with rls have a problem with the exchange of iron in our brains.

That seems to be just enough explanation not to get those weird looks I use to get when I explained by saying I had these creepy crawley feelings in legs that were so bad I had to get up and walk the floor all night.

IF they ask more questions I then tell them that at present lots of research is being done for rls, and that many people are now donating their brains upon death to the RLS research, and they have now found the gene that is the cause for rls.

If I continue and go into details about how horrid it is and how I use to never sleep and how that affected my life, most seem to start loosing interest in rls.
So for me I simply keep it straight forward and simple as possible.

I noticed in the Sunday paper magazine, that RLS was listed as the second sleep depriving problem with apnea as the first. So I think progress is being made even with the name being Restless Legs. personally I think we have come too far now to even think about changing the name.

ViewsAskew
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Post by ViewsAskew »

mack, my response is similar to yours. I start by saying I have a movement disorder that is neurological. That it affects my body and legs. When they press for more info, I tell them about the iron. By the time they press me enough for (some people do, some don't) or guess the name, RLS, they seem to look at it differently than if I'd simply said, oh I have RLS.

What's interesting to me is that many of us have adapted a way to describe it so that we take the negative perception out of the name.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Post by Polar Bear »

Yeah, I'm inclined to use the term movement disorder.

I had previously found that when I said rls, I found myself almost being apologetic, i.e. trying to justify my condition by saying the symptoms are much more distressing that the term rls would suggest.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Neco
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Post by Neco »

I kind of do the same, starting off by saying I have a neurological disorder/condition, and then the name.. or saying I have Restless Legs Syndrome and then immediately adding "it's a neurological disorder" before they can say anything.


But going back to why people think it sounds "funny"... it just does, and not totally haha funny but that is in there too.. Going back to that stupid Consumer Reports video, and various celebrities.. That's basically what pops into most peoples mind from my reckoning, even without them having been exposed to negative press or preconceptions..

It just sounds flaky- and there's nothing wrong with that, it's just that way it is... But its always going to be a hurdle to overcome when explaining to people because of simple human nature.

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