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.
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nightdancer
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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. ;(
'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.
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.
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.
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.
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 .
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.
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?
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