RLS - RLC - RLM Should we change the name?

[barried]

My History

I started getting RLS at the age of 8 but of course was not aware of what it was in those days, I am now 63. It was joked that I must have 'Saint Vitus Dance' or I had 'Growing Pains'. I hated the heat and loved the snow/cold surfaces which was the only real relief. It was only four years ago that I found out about RLS and unofficially tried a friends 'Tramadol' tablets, luckily they worked immediately - the 'pain' and 'jerking' I had put up with for 50 years was gone. I also had it in both arms along with both legs which was physically difficult to deal with - rubbing/massaging both legs with both hands can be done but to rub/massage both arms at the same time is impossible.

We need a name that better describes the areas of the body which are/can be affected by RLS. We have enough feedback from Members that legs, feet, hands and arms can all be the limbs affected yet we only specify 'legs'. It is very important that a unified truthful description is formulated and used exclusively when reporting or referring to this health condition on the internet, in speach and in print.

I think the name should be officially changed to 'Restless Limbs Syndrome' or better still 'Restless Limbs Complex' or 'Restless Limbs Malady'.

Whether it is Syndrome, Complex, Malady or any other describing word at the end is very much up to discussion but I would favour 'Malady'.

Noun: malady ma-lu-dee

1. Any unwholesome or desperate condition "what maladies afflict our bodies?"

2. Impairment of normal physiological function affecting part or all of an organism

Upon changing the name it would be quite ethical to send details of the change along with a vivid updated description of the symptoms to Newsdesks, Radio and TV Stations, Newspapers, Magazines, Health depts, Universities, Teaching Hospitals, Doctors/Nursing Associations and any other interested parties throughout the UK. Much needed publicity.

Members views would be welcome. Barried

[Hidden]

This will be a difficult one, as we will ALL have different ideas on a different name. As you may know or not know the RLS Foundation in the USA has just changed their name to WED Foundation. WED, stands for Willis.Ekbom Disease. The names of the men who first described and first named this as RLS. We are told all other organisations and such will follow suit. I personally do not like the name WED, as the word Ekbom can be mistaken for another syndrome, Ekbom Syndrome means people really think they have bugs crawling in they body.

I personally like the name Restless Body Disease, as alot of people suffer with the symptoms in other parts of their body...so RBD.

Will be interesting to what others think..

Members will be given a survey on the name change in a few weeks or more. Either to change the name to WED or keep it as RLS. Out of the two options i prefer RLS.

[peterk in reply to Hidden]

Hello Elise. I am very unhappy with the name Restless Legs Syndrome and WED, as you have pointed out can be mistaken for another syndrome which is psychiatric. It's neurological and we have all for years been trying to get away from any diagnosis associated with a psychiatric illness. I like the name you have suggested although I don't know what but I would like something that at least acknowledges the severe pain that this condition can cause in many.

[nightdancer in reply to Hidden]

The most popular suggestions when we were "polled" in The US about a new name 2 years ago was Restless Limb Disease. syndrome is only a "collection" of symptoms, whereas Disease gives it an identity unto itself. Let's just say that WED is very controversial. The main objective should be to have GLOBALLY one name. Right now the different names are flying all over. I have always objected to any name that contains Ekbom, unless they change the Ekbom's Syndrome to a different name. RLSer's do not want anything to do with the psychosis, as we are constantly being told by somebody that "it's all in your head". As long as the name Ekbom is used in part of the name (again only in US and Canada right now, and barely there) that is a problem. So, there are many sides and long storied to the name thing. I know my people liked Restless Limb Disease the best, and that was bout 86% in my poll I did.

[thedragon]

I honestly don't care what they call it....I just wish they would do more research and figure the thing out!!!!!!

[Hidden in reply to thedragon]

Hi, one of the reasons for changing the name is supposed to get the condition taken more seriously and then more research will get done... My opinion for what its worth is, it still makes the condition the same, that dont change...so whatever they call it, no more research will get done than what gets done right now...

[Hidden in reply to thedragon]

me to dragon !! but i think Disease would get us more research done

[kathyrose in reply to thedragon]

I also have rls. but since taking 10,000 mcg vitamin b12 I have had big relief. It won't hurt you, your body will excrete what it doesn't use.Just take 2 5000 mcg vitamin b12 sublingual in morning. It worked for me after only 3 weeks.No more requip or repinirole 4mg. Please try it!

[Hidden]

Yes I look forward to survey.

WED

Yes do something already...

[thedragon]

Dragon to Tallulah....agreed!!!!

[Hidden in reply to thedragon]

ok ok ,no need to shout !!!

[thedragon in reply to Hidden]

I didn't.....I roared, cos I'm a dragon!!!!

[thedragon in reply to thedragon]

Although I do seem to have posted it twice!!!

[thedragon]

Dragon to Tallulah....agreed!!!!

[CathyS]

I'm sticking with Super Horrific Insane Twitching. The acronym more adequately describes it than RLS or WED Seriously though, I do agree that the use of "restless" minimizes the reality of it, and "legs" doesn't begin to cover it!! While we're at it, I'd like to see the drug advertising stop making it sound so trivial. It's right up there with "have a happy period" in my opinion. My neurologist admitted that research is minimal because "nobody actually DIES from it".

Mostly, I also would like to see a CURE.

Enjoyed your thought provoking writing Barried.

[Hidden]

For us over here in the UK, we never have adverts for the RLS meds. so i dont think we get as much stick from people who see them like you all do across the pond.

I agree with your neuro,he is right on that unfortunately.

I also still love your acronym, but cant see them wanting to use that one....LOL.

[Hidden]

o good heavens Cathy, i dont think they would let us use that one, alltho i love it, and nope we dont get the ads for drugs over here, thank goodness for that

[Dollis]

I think people read/hear the word "restless" and dismiss it as something trivial. It's certainly time it became known everywhere by something which reflects the gravity of an incurable condition with such debilitating symptoms. Incidentally, not all of us jerk or twitch.

[barried]

Thanks everyone for your thoughts on my thoughts!

There does seem a certain amount of agreement that change is needed.but who has the authority to make a change such as this? I would assume that a working party of the RLS UK Charity Members would be appointed by the 'Chair' and report back to it's Members and to this site when a decision had been made. I say 'this site' as I live in France so can not be a Member unless/until an 'Associate Membership' is created in the Charity's 'Articles' accepting overseas Members. I am sure there will be a quite a number of International Associate Members if the possibility comes to fruition.

Getting back to 'Name Change'. I am now in two minds between 'Limbs' and 'Body' (Body, because there appear to be many who suffer back, neck and shoulder pain). The last desciptive word (Syndrome) needs to reflect what category of illness it comes under. See:

medical-dictionary.thefreed... RLS not noted!

I like 'Disease' but to me it implies 'contagious' which it is not. See:

medical-dictionary.thefreed...

Others include: Disorder - Chronic ????? - Complex

As for the first word - Restless! - Painful - Traumatic - Torturouse - Excruciating. ???

e.g. : Chronic Body Pain Disorder

There is scope for lots of possible new names.

There were a number of 'Answers' that basically said sort of 'What is the point, it is not going to get medics to study RLS to find a cure' - I do not think that is the case, I believe that the more medical personnel, medical students and medical teaching entities are made aware of RLS and kept informed of it's persistance to affect more and more of the general public the greater the need for a cure is perceived leading the way to studies, clinical trials of cures and better understanding of sufferers needs.

As can be seen from the latest question by Daragh, Chair RLS-UK - Urgent - UPDATED: Newspaper Case Studies needed - there are many organisations and entities from all walks of life who want 'information' and 'news'. They want to know about RLS. Many will hear or read about the symptoms of RLS and I am sure that there will be many like me who on reading about RLS for the first time was at last able to say' So THAT is what I have been unknowingly sufferring from for the past 50 years' and to take positive action to alleviate that pain and very importantly, to communicate to fellow sufferers as I am doing now. Thanks Daragh!

[Retren]

On one occasion I had it in my head as well as everywhere else my spouse was appalled and had given me quinine which has caffeine like properties I was convinced I was going berserk I have no notion how I manage to put up with it and dread a repeat At the time I was convinced it was from bread rolls on a flight.bleached flour in retrospect I think a combination of bleach and gluten caused a double whammy.