Resteless Leg or Restless Limb Syndrome?

[mgk_wales]

Having suffered from RLS for the past 12 months, like most people, my discomfort began in my legs only. To be precise, my left leg, then right leg followed by left arm and right arm in that order. Like many of you here, I have had the CT scan, full MRI, blood tests, etc. to rule out things like MS and Parkinsons but this is not just in the legs so why do we not change the name to something that reflects more accurately what it is?

[jumpylegs]

The RLS Foundation took steps regarding this some months ago and the new name of rls is Willis Ekbom Disease.

This link will take you tothe RLS Foundation and the article - Changing the Name of RLS.

rls.org/namechange

[mgk_wales in reply to jumpylegs]

Thanks Jumpylegs (great name and very apt might I say). I've had this for about a year now and only diagnosed in the last 2 months. Until I got referred to the neurologist the doc was adamant RLS didn't exist and that it was a cop out by other docs!

Can I ask another question as someone who has only had this a short time (although it feels like forever)? I seem to be getting progressively worse month on month. Legs followed by arms, the annoying sensations I get becoming stronger over time and more frequent. Is it normal to progress quickly and when does it even out or even get better?

A good nights sleep would be bliss!!

[Hidden]

well if it is definately RLS it doesnt have a cure yet, and you dont say if you have any meds for it.

RLS does gradually get worse though, so not good news for us, and a lot of doctors have that attitude to RLS, unfortunately, my doctors ok now, but we did fight a bit at first, now we look things up and talk about the treatments togeether, ive had rls for 43 years and counting.

Willis, and Ekbom, are two doctors who discovered this disease, and thats why its going back to the name they gave it really, dont quote me on it but i thnik it goes back a few centurys when it was first described by them, but over here in the UK, we still call it RLS...but whatever its called ...its flipping horrid to go through.

jean - Birmingham

[mgk_wales in reply to Hidden]

I have only just been given meds (previously only sleeping tablets which dont really work other than making you drowsy for 24hrs). What I have is 10mg Stilnox (Zolpidem) but doesn't seem to do an awful lot.

[nightdancer]

Oh, Gawd, the name change issue. I realize Restless "LEGS" does not cover it. But, hate the new name that will be implemented in 2013. You tell someone you have Willis Ekbom Disease, and it turns into an explanation that takes forever. Here we go. Dr. Thomas willis was a neuro back in the 17th century. He decribed RLS to a T, as well as restless "limbs" including the arms. Dr, Karl Ekbom was a neuro in the 40's (Swedish) who first coined the phrase Restless Legs Syndrome. I would rather just call it Restless BODY Syndrome. :o) so, you still then have to explain what RLS is. It will never be called WED everywhere like the RLS Foundation in the US would like. Nobody would know to look that up when they have no idea what it is, and they still have to find the "restless" part. It has been a fiasco of a process. I refuse to use WED;hate the initials. :o)

the main thing was to get Syndrome out of the name and get the word Disease in there. Easier to get meds approved that way. That is really the only reason, although you may hear reasons because of the name being ridiculed and made fun of by many. I have done 15 yrs of RLS AWARENESS ,not WED awareness, and that will not change for me. Remember, the main reason for the name change was to make the Federal Drug Administration (USA) feel better about approving new drugs, since it is officlally a disease. A syndrome is only a collection of symptoms, but not an actual disease. There are reasons for everything. ;o)

[jumpylegs]

I just say that I have a neurological movement disorder.

[Hidden]

I say i have a sleep disorder, than when someone asks what then i explain. I will never ever call RLS by the name WED. I think it will only be the Foundation which will use it. Its a stupid name, If you tell someone you have WED, they more than like think you have got married...pfff.

[harecatcher]

Agree with thoughts above on WED - i like restless LIMB disorder as I get it bad in my arms

Might start calling it that when I'm explaining it to others!

[wyllie929]

i don't care what they call it its horrible thing to have i have had it so long and nothing is going to get any better and the only thing i have had in all these years is paroven caps. not had any other treatment no scans nothing so doctors don't understand RSL . i have had to just live with it when it starts at night i get up and find things to do and its not always at night that it hits but i must say when it in my arms as well its at its worse

[Grumpyjumpy]

I'm usually glass half-empty and a bit cynical but find myself feeling quite a bit different about the name change. Bring it on!

There are many things I don't like. I don't like people making fun of RLS because of the name. I don't like doctors not learning about it or dismissing it because they think it's a silly syndrome instead of a disease. I don't like saying the words, "Restless Legs Syndrome" - makes me want to make fun of it and I have it!

I like the Foundation for caring about all of us and working hard to help this disease be taking seriously. Like wyllie929 I don't really care what they call it as long as they take it seriously. If this name change does that, I'm all for it.

[nightdancer]

Well, we have a long way to go for this new name to be accepted by all medical communities. Unless everyone uses the "new" name, we will and do get questions like, "Well, you could not get anywhere with the name RLS, you are changing it to get more respect?" Let me know when that happens, because on the British RLS-UK web site they state that they will never use the "term Ekbom" again. They changed their name in direct response to this new name. WED can stand for a million things, and i am not WED, as in married, nor is it a day of the week, etc, etc. I get these msgs every day. Like I say when everyone is using the new name, and I do like using the word disease instead of syndrome, but that is as far as it goes. use whatever web sites you like. YOu are obviously are from the US, since you use WED in every answer. I know a lot of people make fun of RLS, but we are getting the same questions from people who think it is being changed just to get more drugs approved?? I have gotten many msgs over the last few months saying that we are stretching the boundaries now, by using an unofficial name for a disease that was named in the 40's. All of this is on the internet for all to see. Whatever it is called it is misery, for sure, but my groups will never be called WED Support after all these years. And, my members would have it no other way from 29 different countries. my opinion, plus speaking for may others. just sayin'............................

[FAERFC]

How about tormented body?