Lets use the right language and be our best advocate

[auntiesioux]

Hi all my fellow friends. I have posted something like this before, now will be more direct . RLS is very very common. Apparently the etiology (the cause) is not understood as there have been so many scientific studies stating this is the absolute etiology. So to for starts, lets elevate this disease by calling it by the correct name:

Willis-Eikbon Disease (WED). Don't referrer to your moving arms and legs as 'restless', use the word 'seizures'. People can not relate to 'restless' but take notice to the word 'seizures.' Unless you have a doctor with the same debilitating WED as you do, most likely will just be on a pill quest for you. Be your own best advocate and best researcher. If you find something such as coffee in the middle of the night actually helps some people, which has been stated on this site several times, print it out and take it or send it to your doctor. If possible, have someone else with you when you visit your doctor. Also, every time you visit the doctor, ask for printed out notes of that visit. Read them and make sure they are accurate. If not, have the doctor be accountable and have them corrected. I have done than more times than I can remember. In the last three years I augmented so badly, I really did think I was going to die. Not to bore you and not sure why, something changed. I am back on a very low dose of requip and have very few but minor episodes of leg seizures. When that happens I do all the non medical things that I know help me. Bottom line:

1. We are on this site talking and seeking because we have Willis-Eikbon Disease.

2. We have leg and/or arm seizures

3. We do our own research and take copies to the doctor

4. Eat the best diet you can and keep your body healthy as possible, no sugar.

5. Visit doctors with an advocate

6. Get written copies of all visits and review and correct if needed.

7. Save everything in a notebook, your research, your doctor's notes, what works, what doesn't

8. No one has reach their "hail Mary" no matter what the doctor says. We are still here, so DON'T GIVE UP.

9. DO NOT GIVE UP...there are too many of us with this same disease and there is a reason, even though not obvious yet. Actually may be more than one.

10. Lastly, don't be reluctant to try alternative treatments and natural remedies.

11. Thank you

[Kaarina Administrator]

I have only ever seen it written as Willis-Ekbom Disease (WED) – first acknowledged by neurologist Dr. Thomas Willis in 1685 and later described as a syndrome by Dr. Karl Ekbom in 1944.

[nightdancer in reply to Kaarina]

And, Willis Ekbom Disease was used in the 40's until Dr. Ekbom himself named it RLS, in the 40's. Dr, Wayne Hening, may he RIP, picked up Ekbom's studies in the 70's, and he called it RLS. There is a lot of history to it.

[Hidden]

On this forum, the correct name is Restless Legs Syndrome. When the RLS foundation decided to change the the to WED, this forum took a vote on whether to keep RLS as the name or change to WED, the vote was to remain as Restless Legs Syndrome. The name WED is just added on at the end of websites to say also known as WED. The RLS foundation then decided to change it back to RLS. The reason why is no one can change a name of disease just like that because they dont like the original name. Second reason because they couldnt legally change the name, they still had to do business using the name RLS. I am not saying you cant call it WED or anyone else. I am saying we use the name RLS here in the UK.

[nightdancer in reply to Hidden]

yep! MANY polls were taken. WED is the "also known as" name, as Elisse has said. In NO way is it the official name, it cannot legally be the official name ever. AND, many many people HERE and in MY groups can tell you what happened when we TRIED to explain the attempted name change. I can safely say MOST people, no matter the country, got the eyeroll from their doctors. I spent 14 years educating my doctor on RLS, and it is not going to change now.

[Hidden in reply to nightdancer]

What a fiasco that all was, at that time.

[nightdancer in reply to Hidden]

OMG, 2 years out of our lives that we will NEVER get back! Yes, it was a complete fiasco. lol

[nightdancer]

Well, first, as far as the NAME, it was the old staff at the US RLS Foundation that tired to change the name. The ONLY other ones who went along with this was Canada. NO other country agreed with this ever. I was directly involved in the name change controversy. I did a poll of 2,000 people, 4% liked the "new name". It was then found out that the US RLS Foundation could not legally do business as WED, copyright issues with a wedding magazine, etc. So, they have ALWAYS been DBA as the RLS Foundation, and the RLS-UK was never going to use it as well as anyone else. After 2 years, the US Foundation gave it up. LEGALLY it is RLS, and can add also known as WED. I CAN tell you what my doctors did when I told them the name MIGHT be changing and I got the expected eyerolls. Do you know how much Literature and studies, etc that would have to be changed? I do and it was daunting and was never going to happen Google WED and see what you get Wedding planners and magazines. So actually the REAL LEGAL name is RLS and it is going to stay that way. AND, using the word "seizures" does not effectively use the official diagnostic criteria, of which there are 5, all include the URGE to MOVE that you cannot ignore. I had seizures when I was younger up to about the age of 24, and RLS is NOTHING like a seizure and that only mucks up the picture if we say it is "leg seizures". That will make the doctor who is not sure prescribe an anti seizure med, which are used for RLS in a lot of people, but they also do nothing for me, or a LOT of people. I have a great relationship with my doctor. The description of RLS that got her attention years ago was mine "When it is in your thighs and you cannot stop moving, I pound on my thighs to distract from the awful URGE to MOVE. You do not do that when you are having a seizure. I have to respectfully disagree with those 2 things you said. Because I was directly involved with the attempted name change, as were a few in this group, the official name is now and STILL RLS. The attempted name change was a huge waste of funds that could have been used to actually help people. Again, I am ONLY speaking about the RLS-US Foundation here in this post to make it REALLY clear.

[Pluto46 in reply to nightdancer]

Agree completely, not least about the diagnostic criteria.

Chris

[Hidden]

Sorry Sioux, but have to go with nightdancer on this one. The points she brings up are solid.

[auntiesioux]

Oh my everyone, was not trying to cause such a flurry or invert the legal system. I was just attempting to make a point. When I personally talk to people and say I have Restless Leg Syndrome, I am never taken seriously, unless they suffer from the same or worse. I know we are not having leg seizures, my apologies to you Night Dancer. I use the word "seizures" when dialoguing outside of this forum to the uninformed. I usually say, "It is like having leg seizures which I can not control." Ok friends, I stand down. I truly am just trying every way I can to be an advocate for all of us who suffer. The doctors, even when I went to Johns Hopkins Hospital this past year are so uninformed....just want to treat with

another drug. I will read more about the original research, if I can find it from Willis and Eikbom. I actually find it funny how the more elusive and non-descriptive name is not used when Restless Leg Syndrome is so dismissed. Thank you all for your input and feed back, I well now communicate with everyone using the words, RLS. Nice work everyone, Auntie Sioux

[nightdancer in reply to auntiesioux]

Did you go to the RLS Quality Care Center at Johns Hopkins??? Dr Christopher Earley is one of the most well known names in RLS research, especially on ferritin and opioids. There are a couple of other doctors, whose names escape me that also have written papers, etc. That surprises me.

[olgamarie in reply to nightdancer]

Nightdancer, I have read through the years a few of your comments and explanation to RLS. I am writing to you out of desperation in the hopes you could give me some advice. I have been or tried every medicine for RLS. Many, I am allergic to. I have just spent three months of "hell" trying Lyrica and Neupro. I am now weaning off of the Neupro. My Dr. at Mayo has decided that I should have an infusion done as my ferritin level was 19 and is now up to 24. I have RLS 24 hours a day, 7 days a week. I am desperate for any information. Life is too hard like this. I sometimes eat standing up and hardly sit. Have you read of any good results with CBD usage. I am so unfamiliar with this. I am sorry to bother you. I have not used this format much, trying to survive the challenges

I face. Thank you for your time.

[Carlief in reply to olgamarie]

Watch the documentary called Root Cause as soon as you can. All dental work involving roots canals, crowns and teeth removal have proven infections festering underneath spot that will stay forever until cleaned out by a dentist. Causes a multitude of ailments one being RLS.

[nightdancer in reply to olgamarie]

HI, found your question here. Well, as you can see from reading comments on this forum, no one thing works for everyone. Sadly that is still the truest thing of all. As for MY personal experience with CBD, I have not yet tried it. Are you in the UK or the US? I manage many RLS and pain groups, and The CBD thing is really up in the air. Also, depends on where you are if it is legal, or if the BEST kind is legal. From what I have observed thru the years, the CBD with THC works the best, and usually as an "add on" to other meds. I would suggest you put up a NEW post , asking your CBD question in the title, and also tell us where you are from, the country only, and then I might be able to give more specific answers, and others here who have tried CBD can help also. You did not mention trying any other meds besides Lyrica and Neupro. Sorry you are having such a horrid time.

[Carlief in reply to nightdancer]

I’m in US. Had this curse since 15 or so I think. I haven’t slept a full night in almost 10 days and I’m in the middle of bar prep of all time for this to kick up!! I posted the latest teeth thing and I still maintain my stance on inquiring about all and anything that seems plausible at this point. Thank you so much for posting the advice bc I do have the oil. In all fairness I can’t opine to the effectiveness of it bc my symptoms were minuet compared to the severity I’m feeling now. One thing we all can agree to say is this thing gets worse with age. I will try the oil tonight. Other then that I have never been on any of medications suggested as that always seems to be the main question in the majority of these post. I have taken muscle relaxer and it seemed to help. The side effects from pills big Pharma pushes as I already said does scares me bc I don’t need another ailment that could come out of that. We hear about the permanent effects only after hundreds suffer from it and their all stuck with it.

Can you explain to anyone that reads your salty response to me, why your concerned I’m sharing that movie with others? I find it disheartening that any true sufferer of rls that’s forced to live with this curse would denounce new information even remotely plausible as to be a cause. What’s the harm in looking into all of it. I just don’t get it.

[Pluto46 in reply to auntiesioux]

Although having said that, I've also always felt that Restless Legs Syndrome is a bit of a lame name. Too easily associated with normal feelings of restlessness, which of course the average bloke or lady in the street will not feel particularly bothered about, nor people in the medical profession for that matter. Wonder what it is in Latin, Inquietum Crura Syndrome

Chris

[Hidden in reply to Pluto46]

I agree. Restless legs just doesn't catch it for so very many of you that also deal with pain. I can't imagine... And really, "restless", as you say, doesn't convey the frantic mess this throws you into. Having been up half the night, I'm rather cocked and primed for this one. Restless indeed.

[nightdancer in reply to Pluto46]

Back in 1996 when I started my first email support group for RLS on Yahoo, we railed against that name, comedians made jokes about it for about 2 years, we buried a bunch of them, and they lost interest in it. the name has always been an issue, but it has been called this since the 40's and the amount of literature and studies, etc, it's a little late to try and change the name now. A lot of us would prefer Restless BODY Syndrome. But, after all these years, it is what it is, and it is our job to advocate and make people/doctors/family members/friends etc understand it.

[FLAME43 in reply to auntiesioux]

i AGREE WITH YOUR EFFORT TO GIVE IMPACT TO THE PEOPLE WHO DONT UNDERSTAND THIS. AND AARE NOT ONE BIT IMPRESSED WITH RLS, ITS LIKE RIGHT MOVE ON DONT GIVE UP, YOUR EFFORT IS NOBLE, I KNOW NOT WHY PEOPLE ARE STIRRED IN THE WRONG DIRECTION. ITS sEMANTICS, ONE THAT HAS MORE IMPACT THAN THE OTHER

[Hidden in reply to FLAME43]

Hi Flame - Please no caps - it gives the impression that your are screaming at people. Thanks

[FLAME43 in reply to Hidden]

never knew that learnig lots of things today, forgive me, screaming at people last thing i would do, a 75 year old granny, thats not our way. can i ask that next time when correcdting me, you catch me doing something right, i actually come on here for advice (most appreciated that i get it)

[Hidden in reply to FLAME43]

Hi Flame43 - Sorry - It's an internet protocol thing - nothing serious, just a little hard to read. Kind of like the folks that never use punctuation.. I will work on the catching you doing the right things although not sure that I would be the best judge of that..

[rls_optimist in reply to auntiesioux]

What medication(s) are you taking now, and how much per day? What other medication(s) did the Johns Hopkins doctor prescribe or suggest?

Also, you imply that there is no medical consensus in the literature about the cause of RLS. Not true. There is a strong consensus now that iron disregulation in the brain is a highly likely cause. This leads to low brain iron (ferritin) levels. Thus, oral or intravenous iron therapy are now usually recommended as a first-line therapy. Have you had your blood ferritin levels checked? If so, don't go by the standard "normal" levels. Those of us with RLS need to get our ferritin level above 100, and for some of us! Up to 300 or more. It really helps in many cases, including my own. And get rchecked periodically, because (for reasons not fully understood), ferritin levels decreaes over time much faster in those with RLS. There's evidence that multiple IV iron infusions can stabilize that and reduce the decrease rate. If you want a link to the RLS experts' paper on this, let me know. Good luck.

[JakeRLS in reply to rls_optimist]

There may be consensus that low Ferritin levels are the cause for SOME sufferers. But I for one have the condition and high Ferratin levels. It's the "one size doesn't not fit all" situation.

[rls_optimist in reply to JakeRLS]

Fair enough, I stand corrected. May I ask what your ferritin level is?

[rkatt]

Okay so the name can’t be changed. But it’s silly. It’s why some people laugh at us. It de-emphasises our agony and distress, making us appear neurotic snowflakes.

What? You have ‘an urge to move your legs’? Can’t get a handle on that one, mate. An urge! That’s daft.

Surely in most cases freaking unbearable sensations precede restlessness. There is no restlessness, in fact. Our movements are palliative, they’re to alleviate intolerable sensations.

‘RLS’ in no way describes the convulsions, electric shocks, muscle twisting, needle jabs or dog bite sensations which may afflict me in to 1000 times a night unless I’m medicated or stoned or otherwise zombied out.

Good post auntiesioux.

[FLAME43]

THANK YOU INDEED FOR A POST THAT GIVES CREDENCE TO THE TERRIBLE MALADY WE SUFFER. YOUR ADVICE IS INDEED SAGE, AS ARE YOU. I HAVE COPIED THIS ONTO WORD, AND WILL BE STARTING A RECORD AS PER YOUR ADVICE. THANK YOU THANK YOU THANK YOU

[Hidden]

So, one difference I would offer is that I don't have an urge to move my legs. I have an imperative to move my legs. They demand that I move them and not just a little, but sometimes enough to get up and walk. It is really hard for me to sleep when I am standing up - at least safely...

[Hidden]

I agree with all that says the name Restless Legs Syndrome doesnt cut it , but its the name that is official and thats what i was explaining. For me, its more like RBS, Restless Body Syndrome, as it can affect for some all over body symptoms. But the official name we are stuck with. CaerylUSA, i agree the NEED to move my legs, results in me not being able to sit, i HAVE to get up either from the sofa or in the night out of bed to pace. There is no way i can sit or stay laying down. I think that is for most of us.

[Woody4]

Personally I don't really are what you call it. Just help me find relief from it. I'm tired of sleepless nights and pacing the floor, then sleeping the next day.

[Peterdh2u]

Funny, I remember having a eureka moment when I discovered this dreadful affliction was recognised and actually had a name... but was very disappointed at what a poor name it was. RLS sounds like a minor inconvenience rather that something that can drive you to dispair!!!

However, thanks to the efforts of the RLS groups that have so successfully raised its profile, it would be bonkers to change the name now that it is so widely recognised.