RLS, Willis Ekbom DISEASE and Ekbom SYNDROME

[nightdancer]

Ekbom syndrome is the psychosis that causes people to think REAL bugs are actually crawling under their skin. One reason I despise the "creepy crawley" description, and the "feels like ants in my legs". that just leads some doctors to draw the wrong conclusion, saying your RLS is "all in your head".

In the US and Canada ONLY, "they" want to change the name to Willis Ekbom disease, because they say RLS is not just "legs" any more. "they also say that legs are "supposed to move, so one "reason" for the name change. (only in the US and Canada) That is true, but legs are not SUPPOSED tgo mobve this way!!!! I find that statement made by a person in authority absolutely the most ridiculous thing I have heard so far. So, RLD would work better!! Restless Limb disease. GEt rid of the word SYNDROME to get us further away from the psychosis diagnosis. There are other reasons too that are too irritating to deal with here.

I know it is confusing, but this comes up once in a while and I saw wrong info posted under the questions, addressed it there, then am putting this blog up, so people wiil SEE it.

The RLS Wikipedia page has this explained in very plain English and a doctor of mine and I keep it straight on there because anyone can edit those pages. One reason I do NOT liike wikipedia, because we have to go in and edit the RLS page all the time, because some peope are just jerks.

So, just remember, that we want to not use EKBOM SYNDROME because that is the one that is the psychosis. Will post this every day if I have to, because this has been discussed at length many times all over.

[mmm66]

I agree with you. And it certainly is not a psychosis

[eileen49]

but would rather have a syndrome than a disease !

[nightdancer in reply to eileen49]

not really. Diseases are treated more serioulsy than syndromes. Depends on how you look at it. We ALL have diseases in one form or another.

[nightdancer in reply to nightdancer]

syndrome only means a "collection of symptoms". A disease is an entity unto itself.

[Hidden in reply to eileen49]

disease would make filing for disability much easier, I

would think..

I'm not going that route just yet even though I have RA

as well.. I want to put that off If I can so I can stay on

my current health insurance. (suffering though and

accident prone, so tired that my body is numb today)

My blood pressure, sugars are elevated because of lack

of sleep. (I eat healthy, exercise every day)

It's fair to say that RLS is an underlying cause of another

true disease that is showing it's ugly head... I have to

increase my blood pressure medication. = /, start

Metformin. = (.

[nightdancer in reply to Hidden]

When you get on disability in the states, you automatically get medicaid that pays for your meds with a very small co-pay, and after 2 yrs, you go on Medicare AND Medicaid. I arely have to pay out anything and nothing at any doctor's office. If you are thiking about it, you should at least look into it, because the average time for approval is 3 yrs. ;(

[nightdancer in reply to nightdancer]

I "barely" have to pay anything.

[stillwater]

'cuse my ignorance if has been explained before but my understanding of the word syndrome was merely 'a collection of related illnesses or symptoms' why would that link it to psychosis, which we all know all too well it isn't.

[nightdancer in reply to stillwater]

Yes, the word syndrome literally means a collection of symptoms. The actual name Ekbom syndrome is different than the other disease Dr. Ekbom named, RLS. He is very careful to explain about the one that is the psychosis. In NO WAY do I mean RLS is all in our heads, it is all semantics when it comes to the name. Look it up, and do some reading, remembering half of the web sites that are not too reputable have it wrong anyway. I cannot explain it clearer than that. that is hwy the name of this group and foundation was changed last year, because they do not want people to mix up the physical, neurological disease that IS RLS. Ekbom syndrome is the psychosis, so that si why it NEEDS to be dropped as quickly as possible, However I do not think we need to change the whole name, get all the awareness work that has bee done over the years. I am speaking from the US. UK will not be using the new name, Willis Ekbom Diseae, and neither will most of us RLSer's in the states and in Canada. It is a big ploy and a long battle that I and others on my side of the pond have been bashing our heads against the walls for over two years now, at leats since the USA RLS Foundation announced that fEB of 2013 the new name would be in use. Not of we can help it. besides me, and a few others aon this site that I know know this answer, how would you explain Willis Ekbom Disease and what it is, and how long would it take you? Doctors also need to spend more than 6 hrs on sleep disorders in medical school which is what they get unless they are specializing in sleep disorders. Herein lies a huge problem worldwide.

Safest web site and most accurate and easy to navigate is rlshelp.org, US based web site. I call it mandatory reading for anyone with RLS or anyone who knows someone with RLS. The treatment page is the place to go, but he will also explain all manner of things like name changes, which he is trying to stay out of. Remeber I said you do NOT have to worry about the name being changed in the UK or anywhere else in the world except US and Canada. It should be the same all the way around the world, like everyone knows what diabetes is and it has the same name everywhere. That is what makes sense to me. We cannot call RLS one thing in one country and another thing in all other separate countries. It is ridiculous at best.

[CathyS]

I've always taken offense to the use of "restless". It sounds too "cute" to me. The drug advertising makes it seem as aggravating as a hangnail. And people always think I'm nuts when I tell them I have Restless Legs in my arms and back too.

We definitely need a new and more descriptive name. I'm thinking Sudden Horrific Insane Torture. The acronym would be very appropriate.

OK. Maybe it needs work

Gotta keep a sense of humor amidst the agony.

[nightdancer in reply to CathyS]

Yes, more descriptive like I said, RLD or Restless Limb Disease, NOT Willis Ekbom Disease. LOTS of people think the name change only has to do with money (again in the US and Canada only) and getting new drugs approved faster that may or may not be a good thing. The faster the drug gets to market, more times than not, problems show up after years of use at a higher dose, and the big warning for Miarpex is "POSSIBLE heart failure". syndrome is not taken seriously in the medical world in general. BUT, and i agree, a lot of people inmy poll voted down that ridiculous Willis Ekbom Disease which requires a long explanation, and theb you asee the person's eyes start to glaze over. But, as I am trying to make this as clear as possible- Ekbom SYNDROME is the psychosis, and that si why your`own British RLS Foundation has change dit's name to RLS-UK , and taken the word Ekbom out of their official name, since they despise it as much as I do and it just causes MORE confusion. I have been dealing with this big time the last few years with the US Foundation, and their numbers that do not add up, and this name change thing is a huge headache. at all costs we have to try and stop this on my side`of the pond, so we are readying for "battle". It has already begun, trust me. But, Ekbom Syndrome is the psychosis, my whole reason for putting this up, because I saw all kinds of inaccurate information in answers here yesterday,. Keeping it real and honest. rlshelp.org will explain it all. And, I am writing a paper, so you hit me where my brain is "living" right now. I was invited to be a "patient RLS expert" on this new web site. When that gets up, I will let you guys know.

[nightdancer in reply to nightdancer]

That would be "patient expert on RLS". LOL good thing I have spell check everywhere. Wish we had it on this site, becaue I am OCD about it, no matter how tired I am. LOL But, sleep deprived people are supoosed to make typos .

[nightdancer in reply to nightdancer]

wow my typos are driving me nuts. LOL Sleep deprived or not, my fingers go to fast. LOL above "that is warning on Mirapex".

[bedith6]

That's the best description I've read in an age. Well done

[Hidden]

Great name to give it Cathy...love it...

[eileen49]

lol I have spent enough time getting everyone to remember the name RLS ! I aint changing it now !

[Hidden]

I could care less what the name goes by. Don't work on that...

Find a cure! It's part of a chain reaction for me..ending in a

bad way for me. (diabetes, elevated blood pressure)

I do not even bother anymore to explain to others what it is.

My oldest child is 24 yrs old. She falls into bed exhausted at 8pm. To

stay awake later than that is impossible for her. She wakes up at

11pm and stays awake until 4am. It's some kind of internal alarm.

Not one doctor will take her insomnia seriously. They don't want her

to depend on sleeping pills. They told her to take Benedryl...

no tv, no computer, no reading, no eating... she needs to sit in the

dark and out of her bedroom without any mental stimulation of any

kind. (it's been 2 yrs)

My point is that we are not the only ones who are not being taken

seriously. My daughter runs a business solo and her doctors are

well aware that she needs to be awake and alert for her daytime

job. The doctors told her that the body will eventually get tired

enough to fall asleep... ( I'm a bit upset by this!)

She is a married woman, college educated, well thought of in the

community..and pulls her own weight very strongly..

She changed her bed time to later but the same thing happened

from 11pm to 4 am... her body refused to sleep during those hours.

Karen ~USA (sorry if this is not relevant to RLS..I am blowing

off steam right now!

[nightdancer in reply to Hidden]

it's relevant, and sad.

[nightdancer]

We know we are not the only ones that are not taken seriously. If you want to write to someone about finding cures, since you are in the US start bugging the US RLSF, like the rest of us. The whle name change has come up because of them, and it is a war. Until that battle is over which will start in earnest next month, we have to take it a step at a time, and it will never go fast enough for us. The CAUSE has to be found first before we can find a cure, and "disease" is a "buzz" word that the FDA likes way better than Syndrome. It is all connected, even down to the name. It will be confusing because the US and Canada are the only 2 countries in on this name change, and it is too detailed to go into here all at once. It does make a difference what it is called, obviously, because of the Syndrome confusion. We may feel psychotic, but we are NOT.

[nightdancer]

Cancer patients are not taken seriously at times, so we have along battle.

[insect]

Disease usually has a basis, syndrome is usually a condition which has no known organic cause. I prefer syndrome. I looked in at the US-based web-site today and am less than impressed! Maybe they are searching for research Funding?