Restless Legs Syndrome

by Donna
(Vermont)

I would like to comment on your RLS section. I have heard of the soap, known many, many people who have seriously tried it, and it has not done a thing for us. I am talking about a support group of over 1200 people that have been together since 1998 on yahoo groups. I AM a strong believer in the placebo effect, and at least the soap will make your sheets smell clean! The problem that I have with your statements is that you are lumping leg cramps and charlie horses and RLS together. IT is not true, and you should do a little more research about it. RLS is neurological, and leg cramps are a totally diffrent thing. I hate when there is misinformation out there. The soap is for LEG CRAMPS, if at all, and RLS has not a thing to do with leg cramps. RLS is the strong urge to move when at rest, not a muscle cramping up into a ball like Grandpa's charlie horses. I moderate over 2,000 people in several groups. I live and breathe RLS, and mine is very severe. Yes, I tried the soap when I was desperate
years ago. YOU make it sound as if it will just take everyone's RLS away, and that is just not so! I have hundreds of very passionate people and doctors looking for RLS answers, and this is not the place to get them.
Get your info straight please. It is rather insulting after all the work we have done for you to intimate that soap is a cure for a very debilitating condition that costs people their jobs, relationships, and is generally a living nightmare in most cases.
LIke I said, the placebo effect can be a very strong thing, and there is nothing wrong with that, but your info on RLS facts is just not correct, and you are making a common mistake witn the leg cramps reference.
I DO want to say however, that you have some great ideas here, just not happy about the RLS section.

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Nov 06, 2010
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starstarstarstarstar 		Let's start over :o)
by: Donna

And, I appreciate that you wrote back to me so quickly!
RLS is an extremely frustrating condition to deal with, and I have been researching it since 1998.
Any questions that you may have, I will gladly answer. I am very passionate about it, as you have seen, so I get kind of thin skinned, too. I look up anything and everything about RLS, and the rule for RLS is is that there is no rule for treatment. What works great for one person, may not work at all for the next person. It is frustrating for patients, and extremely frustrating for doctors also. In medical school, they only spend about 4 hrs on all sleep disorders if the medical student is not specializing in that particular field.
So, truce? I really never meant to cause you any distress, but also really need to make sure that the information that comes out is accurate, as many doctors do not have a clue how to treat it, and we sometimes go through many doctors until we can find one that will help. We are already very frustrated by the time we actually seek out a doctor, are afraid of being labled hypchondriacs, and are treated as such many times.
So, I would be perfectly willing to help out any way that I can. I first saw a reference to your web site on someone's RLS Facebook page, and that is how I found you.
Thanks for understanding the issues that we deal with, and will be recommending your web site, also. I really AM a nice person.
I do understand bout the "no control over the ads". On my support group pages, Yahoo also places ads on my pages and groups advertising fraudulet cures for RLS, and there is no cure. It drives me crazy, and am constantly having to tell people to please ignore them. I do not need the ads to pay for my Yahoo groups as they are free to use for us, but it is so annoying to have them pop up. I have managed to get the worst ones removed, but it is a constant battle.
Thank you, and hope to talk with you again soon.
Nov 06, 2010
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starstarstarstarstar 		Let's Start Over :)
by: Grandma

Hello Donna,

It's hard for me to find the words to let you know how much I appreciate you taking the time to write back to me and explain to me in more detail why you wrote to me the other day. I really didn't mean to get so defensive. Sometime I feel that I'm just too thin skinned to have a website, especially a website that deals with health issues. I realize that sometimes I try to keep things too simple and I may seem a bit flip at times, but I really don't mean to offend anybody, especially someone that is frustrated with a disorder that they can't find solutions to. My only goal when building my website was for people to have a friendly place to visit, feel comfortable, and hopefully find a home or herbal remedy they can try and possibly relieve their discomfort without dealing with dangerous side effects.

Also, I've been allowing Google and Infolinks to place ads on my website for several years now. This helps me cover the expense of owning a website and keeps me from needing to find a job to supplement my social security. I have no control on what ads they place on my website, although they try very hard to place ads that match what the subject is about. I'm not allowed to click on those ads to see what is being advertised because I get paid per click, not per sale.

I will find the time in the next few days to go back and edit my page on RLS and try make clear that RLS and charly horses have nothing in common. And I will also try to let people know that even though it helps some people it don't help everybody. Thank you for letting me know how important it is to point these things out

I'm so sorry for the frustration you are going through with RLS. I will keep you and your support group in my thoughts and prayers and if I ever hear of more information I think may help I'll be sure to write about it, but I just might ask your opinion first, if you don't mind. :)

Grandma
Nov 06, 2010
Rating
starstarstarstarstar 		RLS and leg cramps/bizzare soap remedy
by: Donna

I am sorry for the "tone" of my previous comments, but would like to clarify a couple of things. In your original article you say that once someone tries this remedy and that it works , you do not know why we would not tell everyone about it. You do go immediately from RLS to leg cramps,with no explanation that they are different. I reread the whole thing again, and you do not say that that you do not know anyone with RLS. My concernis that people who are desperate for answers will get leg cramps and RLS mixed up. It happens all the time. When we first heard about soap for RLS, more than a decade ago, the kind of soap to use kept changing.
I also made it very clear that I believe in the placebo effect, and that it can be a very strong influence. I NEVER said that you were trying to sell anything, but do see a couple of ads on your web site from questionable sources. I will make no further comment on those. Even if you did not mean to lump RLS and cramps together, the article flows seamnlessly from one to the other. I am NOT speaking for my whole support group, and did not mean to word it that way. RLS can cause severe sleep deprivation, and with that, our cognitive understanding of things may get skewed. I know several people who commented on your web site to me, and that is why I wrote. I only wanted to make the difference very clear.
So, I may have misunderstood what you said, and you may have misunderstood my point. I could have worded it better .I read testimonials every day. I do believe that the people who think the soap works really do believe in it. Years ago when I was totally desperate for sleep, and did not have a name yet to describe the torture that I was going through, I tried the soap. The opinion is split on whether it works or not, but that you make it sound so simple, and the way you word it, it makes it sound like it would work 100% of the time. 8-15% of people in the U.S. have RLS, so it is more common than people think. I am very grateful, even if it does not seem it, that you treat it like a real thing, so I thank you for that.
I apologize for my "tone", but there is so much misunderstanding about RLS. I probably did not say it in the best way.
I hope that this clears up what I was thinking when I wrote it.
Nov 03, 2010
Rating
starstarstarstarstar 		Soap Remedy
by: Grandma

Hello Donna,

After reading your submission I had to go back and reread the article I wrote on Restless Leg Syndrome and try to figure out what on earth I could have written that offended you and your RLS support group so much that you would feel the need to write to me in that tone.

The first thing I want to point out here is the soap remedy isn't something I dreamt about or suddenly had a light bulb moment with some hair-brain idea. This came from several articles I read on the subject of RLS and one was written by a respected group of people at the People's Pharmacy. In every article I read there were testimonies from people that suffer from RLS and tried the soap remedy and had wonderful results. I doubt if they were cured but from what I read they did get relief and a good nights sleep.

I never once implied that leg cramps are in the same category as RLS. I was just trying to talk about my personal experience using the soap and since I don't know anybody that suffers from RLS I wrote about Grandpa's leg cramps, because it worked, gave him relief, and showed me that it isn't nonsense. Here are a few quotes from my article.

"People that has never suffered from this disorder can't possibly understand how awful it is to go through sleepless nights of walking and trying to shake this weird feeling off."

"It's a strange treatment and it sounds like nonsense."

The next thing I'd like to point out here is, I haven't tried to sell some miracle drug to people with RLS and I didn't suggest you do some kind of weird exercises or sell some contraption that I swore was going to work, plus I never charged anybody a dime to read this article. Nobody got hurt or ripped off. All I did was pass on a bit of information I read and was impressed with. I said it seemed bizarre to me but who am I to hold back information that might help someone suffering from such a tormenting disorder? I can't see where this would hurt anybody to give it a try. Like I said in the article if it don't help then use the soap to bath with. Last but not least, I never once approached your RLS support group to come to my website and read what I wrote, in fact I don't even mingle with social networks. It's your choice to read it, it's your choice to try it. It's as simple as that.

The one quote I have admired and live by is: "You can please some of the people some of the time, but you can't please all of the people all of the time."

Grandma

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