WE'D/RLS name

[homergirl]

When you are speaking (not writing) how do you refer to our condition with the new name? Do you say "WED" like the word? Do you say the letters "double U EE Dee"? Or do you say the whole thing? "Willis -Ekbom Disease". I'm finding it a little cumbersome, and I don't know the proper reference.

Thanks!

[rthom]

Personally I say the letters individually but then I enevetibly end up saying the whole name pretty much right after. This is because of the blank stares I get whenever I say it--lol.

[ViewsAskew]

When you are speaking (not writing) how do you refer to our condition with the new name? Do you say "WED" like the word? Do you say the letters "double U EE Dee"? Or do you say the whole thing? "Willis -Ekbom Disease". I'm finding it a little cumbersome, and I don't know the proper reference.

Thanks!

At my last visit with Dr Buchfurher, we both said the same thing! It doesn't trip off your tongue.

I usually say the full name. Here at home, I usually say the word, lol. But, I'm presenting a webinar tomorrow and have been worried about it, lol. I think I might try saying the letters....

Clearly, I do not know the "right" way!

[jul2873]

I hope I don't annoy people with this opinion, but I have to say that I am sorry to see the name change from RLS to WED.

I understand, I think, that the change is an effort to gain respect for the condition. But I'm afraid that any respect gained is overwhelmed by the difficulty of remembering the name. Also, whereas "restless leg syndrome" is a descriptive term, "willis-ekbom" tells me nothing.

Also, my understanding is that the term "syndrome" is used when the cause of the cluster of symptoms is not known--or the symptoms are known to arise from different causes; whereas the term "disease" is used when we have some idea of the cause. Do we know the cause of RLS/WED? Again, my understanding is that there are various opinions. Perhaps it is a neurological dysfunction. Perhaps it's caused by too much glutamate--or not enough dopamine. Or something wrong with the way the brain regulates iron. Or many other possibilities.

This is not at all an effort at all to trivialize this condition. I just don't think we do ourselves any favor by using a name that baffles most people who hear it. Personally, I'd rather see an effort to get people to understand that restless leg syndrome is a spectrum disorder, with many manifestations and degrees of severity.

Just my two cents worth. Best to everyone.

Mary

[ViewsAskew]

I don't think there was a perfect solution. Indeed, we need some respect! There are many oddly named diseases out there, so I suppose that might give us hope that it will be OK. And, as I practice saying it, it does get easier.

Per the term syndrome, a syndrome is a collection of signs and symptoms known to frequently appear together but without a known cause.

A medical dictionary defines a disease thus:
A morbid entity characterized usually by at least two of these criteria:

Recognized etiologic agent (cause)
Identifiable group of signs and symptoms
Consistent anatomic alterations

We have found genes that are related only to it. We know that the brain functions are different in people with it from brain autopsies. So, we have an identifiable group of signs and symptoms and we have consistent anatomic alterations. We just don't know the cause. Hopefully, that will come soon, but it still qualifies as a disease. And, disease status is extremely important in funding research and changing doctors opinions. Shouldn't be true, but it is.

I don't think that we'll all ever agree on the name change. I am thrilled in some ways, and have misgivings in others. Ultimately, though, it doesn't matter - it's done. The doctors who suggested it have a lot of information about it at the International restless legs study group - http://irlssg.org/. I read it, thought they tried to do the best they could with the difficulties, and am doing my best to put it in my vocabulary.

[EeFall]

What about the guy named "Restless Leg", I bet he is pissed that they changed the name, isn't he the one it was actually named after?

[dogeyed]

^what was supposed to be up there?

Views, I vaguely recall perhaps in Wikipedia, but not sure where, that I first became aware of the proper name Willis-Ekbom Disease, and seems to me wherever I saw it, in the article they switched over to saying Ekbom Disease. I cannot even recall if Willis was a first name, or another last name. But if it's a first name, them Ekbom Disease might work, but only if someone can verify the name thing. I still say, "Restless Legs." People seem to recognize it to some degree that way, or can at least make out some idea of it from those words. But I also recall feeling uncomfortable saying it, as if it were like saying, "I get spasms in my legs," so I tried Ekbom Disease for a while, and gave up. Restless Legs is what I say.

[ViewsAskew]

That's part of the issue. In Europe, it was sometimes called Ekbom's Disease after Karl Ekbom, the guy in the the last century who researched it. He did his dissertation on it in the 1940s.

But, Ekbom's syndrome is a disease - delusional parasitosis - and there was a LOT of concern that naming it Ekbom's Disease would be too confusing.

Willis is the name of a guy who first wrote about WED several hundred years ago. Sir Thomas Willis, a physician, wrote the following in 1672:

"Wherefore to some, when being abed they betake themselves to sleep, presently in the arms and legs, leapings and contractions on the tendons, and so great a restlessness and tossings of other members ensue, that the diseased are no more able to sleep, than if they were in a place of the greatest torture."

My husband said he didn't like the new name because it wasn't descriptive and the old one was. I asked him how descriptive the names of his disease are - celiac? diabetes? alopecia? My guess is that very few diseases are descriptive. He mentioned it was hard to day. Willis Ekbom Disease is MUCH easier to say than Sjogrens, blepharochalasis, and glucocorticoid remediable aldosteronism!

I think we all have different wants and expectations related to this. If the new name keeps us from realizing what's important to us, we probably won't like it much. For me, it's less important that someone knows what it is than they take it seriously. I want it to have respect - that confers respect to my situation and hopefully dollars to research. I honestly am not sure that respect was ever going to happen, at least in the US, with the old name. Some syndromes get a lot of attention and respect. I don't think RLS was ever doing to. When I think about it, I get mad - Ekbom did a LOT of research in the 40s and 50s. And no one paid any attention to it. It wasn't in text books, doctors didn't learn about it.

Me? I'm not greedy (said tongue in cheek); I just I want the following:
-Researchers to research it
-Doctors to believe that it is real and can be severe (and too many still think it is "all in our heads")
-The cause to be found
-Medications to be developed specifically for it (every medication is really for something else - they just happen to help us to some degree)
-People to not dismiss me when I tell them what I have
-Doctors to know how to treat it

I honestly don't care what the new name is, now that I really think about it. I just want it to help us move the dialog in a new direction. Here's hoping that it does.

[Polar Bear]

Well..... I don't really care either what the name is.

But.... I do find myself when talking about it, trying to find anything to use except the term RLS/Restless Leg Syndrome. And that is to do with the respect issue that Views has mentioned. When using the term RLS I feel like a prat, like I am latching onto something of no consequence and in a way attention seeking.

In the past I have been so frustrated at being (not personally) the butt of jokes... and when Joe/Fred/Bert says '''O'h, I've got that'' .... No Joe/Fred/Bert, you haven't got it! You haven't got it physically and you haven't got the understanding of what it means.
For goodness sake,when someone is jiggling a toe when watching a movie and says ''I have RLS'' how can the general public be expected to in any way appreciate the true suffering of 'RLS'.

And so I generally say that I have a Neurological Movement Disorder and if pushed will say that for short it is known as ' Double U, Eeee, Deee' Disease. I will briefly if necessary describe the criteria in particular the need to move for relief, but I don't say RLS.

This perhaps is not helping folks to realise that WED is the new name of RLS ..... hmmmm.....sorry about that bit.

[jul2873]

Thanks, Ann, for all of the interesting info. Certainly if it needs to be called a disease to get attention and funding, then that's what it will have to be called. No question.

But I wish there was some way of signaling how varied the disease is. If you meet the criteria for diabetes, you have it. Period. And it's serious. Same, I think, with most diseases. But some people have only very mild rls, while others are severely disabled. And it seems to manifest itself in various ways, and to respond (or not respond) to a variety of treatments.

Anyway, I think all agree with Ann's wishes for respect, research, and treatment. I hope it is not too far in the future.

Mary

[ViewsAskew]

Thanks, Ann, for all of the interesting info. Certainly if it needs to be called a disease to get attention and funding, then that's what it will have to be called. No question.

But I wish there was some way of signaling how varied the disease is. If you meet the criteria for diabetes, you have it. Period. And it's serious. Same, I think, with most diseases. But some people have only very mild rls, while others are severely disabled. And it seems to manifest itself in various ways, and to respond (or not respond) to a variety of treatments.

Anyway, I think all agree with Ann's wishes for respect, research, and treatment. I hope it is not too far in the future.

Mary

You do have diabetes if you meet the criteria, but my 75 year old MIL controls her with diet and exercise. She has no complications from it. Sure, it's serious, but it my never get worse - hasn't in the last 5 years. My BIL? He is only 50 and has gone from one tablet of Metformin to injecting insulin after every meal, has been in a coma, has major complications with his feet (having another disorder I can't pronounce - Charcot foot, gout, and who knows what else. Very different.

I think that we're going to find that we've either different genetic variants of the disease (very likely) or that there is actually more than one disease, hence the wide variance. It could be that if you have certain gene combinations, you get different symptoms. Beth and I have commented more than once that our genetic variant is identical. There is almost no difference between how we feel about our symptoms, how the present, etc. My whole family - there are 7 of us - have it the same way. We do vary in how often we have symptoms - but as illustrated above, diseases do have progressions. That is likely to be one genetic variant or combination.

In terms of responding, I imagine that is related either to the genetic variant issue, or that other diseases do the same thing. Dopamine regulation is involved, so not surprising dopamine works. There is some evidence the endogenous opioid system is involved, so no surprise opioids work. Benzos? Dr B says he thinks it's because you sleep through the sensations and that it doesn't really stop them - I have no idea. Neuroton and similar - my guess is that these are a different variant that includes some type of neuropathic pain OR that the people have some kind or unidentified OTHER problem, like a new kind of neuropathy, that causes secondary WED or feelings like WED.

I'm totally speculating above! And, I'm not a doctor! My guess is that once they figure it out, we'll all look back and say, "Ah (or Oh)! That makes sense!"

[jul2873]

I hope they figure it out soon! Thanks, Ann.

[badnights]

Ann, you blow me away how clearly you can put things.

I too have trouble saying the new name. After experimenting with "wed", and "double-yoo eee dee", I have settled on "Willis-Ekbom". I will get used to it. I still am not comfortable saying it in front of my GP, but I will experiment next visit...