A rose by another name........

Hi all. I was wondering why is RLS called RLS and not WED?

I have 'RLS' through my body so it cannot be Restless Legs Syndrome, at the very least it is Restless Legs, Body and Arms Syndrome - or Hateful Life Limiting Body Spasm and Pain Disorder - but HLLBSPD isn't quite as snappy as either RLS or WED

There is a thread about the term being changed from RLS to WED and then back again in the US with people in nighdancers survey against it but no reasons as to why:

healthunlocked.com/rlsuk/po...

I think calling it RLS completely minimises the suffering most/all of us experience. People hear 'Restless Legs' and equate it with the very mild and usual urge to stretch/move after being in the one position for some time. I've lost count of the number of people have told me they get a touch of RLS when sitting on long distance flights! That maddens me even more than the soap!

What's the view of the good people here? Also, for those knowledgeable on the subject can you enlighten me to the rationale of the thinking on the name please?

Many thanks for your time.

[Pippins2]

From what I can gather it was RLS sufferers themselves who didn't take to the term WED .I ddon't know why but for whatever reason after taking polls /surveys the RLS Foundation in the States did a u turn and changed the terminology back to RLS (reportedly costing alot of dollars as lots of stuff /advertising of the new name had already been typed up etc ).

Pippins2 x

[Hidden in reply to Pippins2]

I don't get it, though! I wonder why they were against calling it something else?

[nightdancer in reply to Hidden]

Also, "Ekbom Syndrome" is/was known as a psychosis, so did not further our cause that RLS is NOT "all in our heads".

[Mopsy1950]

Hi raffs know what you mean about the amount of people that say ,I have FUNNY FEELING in my legs now and again ,,how I wish it was now and again

[Kaarina Administrator in reply to Mopsy1950]

Hi Mopsy, you get a similar reaction from quite a few people if you mention you suffer with osteoarthritis. They continue to let you know they suffer with that now and again and what you should do/take to make it magically disappear.

There are over 100 different types of arthritis under the umbrella of "Arthritis".

[Mopsy1950 in reply to Kaarina]

Hi Kaarina. Bit like the soap in the bed trick that keeps coming up

[Hidden]

Originally the RLSFoundation decided to change the name to WED. Their idea was that with that name more money would come forth with a better sounding name and more research would be done and also the drug companies would come up with more meds for RLS. None of that happened, which most of us knew it wouldnt happen. The Foundation was the only people who used the name and only could use it for their website/fb page. for business they still had to use RLSFoundation. And thats because no one can just change a disease's name just like that. The foundation hasnt got that much clout that they could officially change the name of a condition as they liked, It takes alot of channels to go through to get that done. So, after spending gawd knows how many $$$ they gave up and reverted back to RLSF. The discussion on their fb page went on for ever, they ASKED people what name they would suggest it be changed to, of course there were many names put forward. including RBS, restless body syndrome as some people suffer all over RLS. But they ignored all names put forward and came up with their own, based on the two Dr.'s who one first noticed and wrote about it. and the second who named it RLS. And that was Sir Thomas Willis, and that was back in 1600's and Dr. Karl Ekbom. who named it RLS in the 1940's. Hence WED, Willis,Ekbom Disease. The RLS-UK charity did a survery asking everyone if they wanted it to stay as RLS or change it to WED like the Foundation, people wanted it to stay as RLS. Mostly people i think that changing the name would mean starting all over to explain what WED meant. and they had spent years and years and time and effort trying to get RLS taken seriously. AND if you were to tell people i have got WED, they would think you had got married.

[Hidden in reply to Hidden]

Thanks for the info.

Mind you no matter what way you are WED there is going to be suffering, well so my Mrs says

Still think we have done a disservice to ourselves by sticking with RLS. I think society at large and DRs look at RLS as something not as serious due in part to ignorance and in part to the name. I mean iyou wouldn't call cancer cell replication disorder!!!

[nightdancer in reply to Hidden]

We went through YEARS of this name change thing. There are several main issues to this. ALL literature (that was not changed) says RLS. All the medical books say RLS, and to change ALL of that would have been monumental. Another issue was the cost, which Elisse explained VERY well. Another was the fact that the US RLS Foundation were the ONLY ones using the new name, or trying to use the new name. Legally WED is a wedding magazine, and there were issues with copyright. I dare you to just google WED and see what pops up.......oh! wedding planners and magazines! Not good. There were polls taken, and even though the majority said "Do not change the name" they tried it. But, no one else in the entire world ( except the Canadian Foundation, which is connected to the US one) was going to use that name. We NEED a universal name, or all awareness work would be down the toilet. Elisse mentioned RBS, we also suggested Restless Limb Syndrome, so the RLS would stay the same. nope! We fought this for 3 years and so did a lot of people, and it went back to RLS. ONE reason why donations went down, and not up for the RLSF/US. They made up all new T-shirts, and other things to buy that said WED. Lots of money spent there. Then, the switch BACK to RLS, the new staff, etc. It was all a nightmare if you were dealing with it like we were and know what was going on. I have lots of info in my head that I can never say on a "public" forum, but trust me, it was a fiasco, and ONE foundation cannot decide for the entire world that they are going to change the name of an established disease, which has had this name since the 40's. Have you ever had to explain what WED stands for??? it took years off my life and my brain, along with my team. I could keep going, but you get the idea. It was not legal is the bottom line.

[Hidden in reply to nightdancer]

Thanks nightdancer. In my opinion its a bit of a pity it didn't take, as said I might not hear so much sh1te from others about their legs if it was WED.

[Pippins2]

Interestingly the NHS website says Restless legs syndrome also known as Willis Ekbom disease x

[Hidden in reply to Pippins2]

Yeah a lot of places use RLS/WED. And if you Google symptoms WED you get RLS stuff up.

[nightdancer in reply to Pippins2]

Some sites do say "also known as" because of the fiasco a few years back.

[nightdancer in reply to Pippins2]

A lot of web sites say "also known as Willis Ekbom Disease, but it is just "known as". That was the issue, legally. "also known as" was added in early days, because the neurologist Thomas Willis, from the 1600's, was the first to even describe RLS. "flailing limbs, etc, when taking to the bed". There is a lot more than that. lol And, then Dr. Ekbom was the doctor who named it RLS in the 40's and did the mother load of research on it. It was not continued until after Ekbom's death, until the 770's when Dr. Wayne Hening, may he RIP, picked up the research, and that is when it really got going. So, Dr. Ekbom named it, and out of respect to him, it should stay the same, as also expressed by many of our current day RLS experts and researchers. LOTS of them did not want the name changed either, but were kind of forced to use it for a few months, then it went back to RLS from WED. WED was never an official name globally, and like I said before, all the awareness work was going down the toilet and we would have had to start WED awareness work, I can speak from the experts that I know, and also for about 6,000 RLSer's, MOST of whom did NOT want the new WED to be used, and it never could be. So, we really do not need to discuss it any further, because legally it cannot be done. At least WED cannot legally be used for financials, awareness, copryrights, etc. Yes, you will get some RLS stuff NOW under WED, because they pushed so hard on it. But, when we were TOLD it was going to be WED back then, you could not find ONE thing on RLS by googling WED. Some people actually mistook it for WEED.

[Hidden in reply to nightdancer]

Interesting to know, thanks nightdancer for that.

[Hidden]

But its always RLS first then WED secondly. Probably websites cant be ar*ed to take the WED back out after the cost it took to add it.

[nightdancer in reply to Hidden]

Precisely, Elisse. People were going NUTS.

[99selkies]

I started telling people I have Willis Ekbom Disease as an experiment When they said they had never heard of it and asked what it was I explained it as a neurological problem affecting the nerves in my legs mainly at night and for me anyway, to a lesser extent my upper body. I also added It's treated initially with dopamine which brings it's own problems. People were very impressed and sympathetic One or two even saying ' oh it sounds like a more severe version of that RLS thingy'

[funnyfennel]

First you have RLS, which when explained is "just a kind of fidgity thing!" and then we take "dopamine" which sounds like Dope ie drugs, and/or is known to effect ones"rewards and pleasure" therefore we are depressed..??? This dis ease (ie. lack of ease) has not got the celebrity status of say "Cancer" when everyone sighs in sympathy, no matter how serious or not. We can often be viewed as grumpy, antisocial, dozey (like me) characters who sometimes even take painkillers .......And sometimes (like me) end up without a bed partner !!??

Not a club many people would choose to join.....is it ???!!! But here we are.

[restlessinlondon]

Hi, I heard that some people were not happy with 'Ekbom's Disease' as it relates to cutaneous delusional disorders (see mdedge.com). There are enough people who think it's all in our mind as it is!!

[nightdancer in reply to restlessinlondon]

Exactly, restlessinlondon!! Ekbom disease is a different thing from WED or RLS. It is connected with an old "delusional" disorder from centuries ago.

[John_naylor]

I call it Restless Limb Syndrome so at least it sounds twice as bad!😊

[nightdancer in reply to John_naylor]

That is what my team was pushing for, Restless Limb Syndrome. The whole idea, supposedly, as explained to us by the "powers that be" was that RLS is "more than legs". Well we KNOW that, so we fought for Restless LIMB to include all, and then could keep the RLS. At least we got the RLS back. From an awareness point of view, which I do that kind of work all the time, we were going to get set back decades, and I, for one, was not going to have it.

[Bajatom]

I call it Restless Lucifer Syndrome because sometimes it seems the devil is on the loose and stiring up trouble. Sometimes it seems I wrestle with the dude half the night.

[nightdancer in reply to Bajatom]

RBS- Restless Beast Syndrome!

[sparker3003]

U have lots of time on your hands

[Pippins2 in reply to sparker3003]

Who are you referring to sparker? Who are has alot of time on their hands?

[Graham3196]

why does anyone expend any energy on such a useless subject?

[Hidden in reply to Graham3196]

Why do you think this is a useless subject?

[Graham3196 in reply to Hidden]

Why do you think changing the name will help? Isnt it hard enough to get doctors to recognise RLS without trying to teach them that RLS is spelt WED? If you can see an advantage in the change then you should campaign for it I suppose but there must be more fun things to do with that time and energy. Find a beach to walk on or get a dog. I love dogs.

[Hidden in reply to Graham3196]

I mentioned why in the first post and in others! I can't walk nor travel far due to my health - unless you want to come and carry me?

[Hidden in reply to Graham3196]

Graham your comment to raffs on if he has that much time and energy he can campaign or go for a walk. We dont always know what a else a member has going on health wise or how they have to spend their day. So your comment was some what rude.

[Hidden in reply to Hidden]

At the moment getting my health problems viewed and addressed properly is my main concern, everything else has a back seat at the moment.

And I agree with Elisse your comment was closer to trolling that debating.

It actually is very silly replying to a thread that you think isn't worth starting in the first place!!!

[nightdancer in reply to Graham3196]

Well, we were forced into this discussion years ago, and a lot of you may not realize what a fight it was. We worked HARD, especially in 2009, for RLS awareness, when most of the jokes were flying around. We stopped most of those, and we were actually getting some respect, instead of the jokes, so changing the name only brought on MORE jokes, and it was nuts. RLS is what it is, and it will stay that way. At least in our life time, it will stay that way.

[nightdancer in reply to Graham3196]

He cannot go out and campaign, you have no idea what raff's issues are, so let's not get ugly here. I already know WHY THEY could not change the name, so sorry to say, this is an OLD subject, but I do understand why it comes up once in a while. ONE foundation cannot change it for the whole world. And, the rest of the world, and most of us, said NO. But, do not criticize someone for asking the question. it never goes away.

[Graham3196 in reply to nightdancer]

Sorry I must have been in a bad mood or something.

I didn't accuse Raffs of being rude or anything and I certainly didn't mean to be insulting. I wasn't aware of the history of this naming issue.

[Hidden in reply to Graham3196]

You made a common mistake - you thought your opinion was fact!

[Pippins2]

This forum is open to anything concerning RLS so Raffs is quite within his rights to open a discussion on any aspect including the name RLS. So long as a member is not being rude /using bad language etc (Raffs was doing neither ) they have as much right as anyone else to post whatever they wish. If you don't like it Graham then scroll on by!

[nightdancer in reply to Pippins2]

Exactly, there are a lot of sides to this discussion, and at no time was raffs being rude, etc. It IS a valid question, it is just that we have already been down the "name change" road, and it took years to deal with it, Makes my head spin when I think back to that time. So, be nice. It is always a valid question, except it has been tried and was an epic fail.