Friday, March 16, 2012

I'm Not saying You're Ignorant, But....

Let's face it--we have all come across some ignorant people during our time with RLS/WED. I'm not talking about the so-called comedians who have no problem making fun of everything and everyone. No, I'm talking about the general public; and sorry to say, about doctors, friends and family.

I came across a website that made fun of (Surprise!) RLS/WED. In it the author said there were two conditions for RLS:
1. You have legs
2. Sometimes they move

Now there is a difference in being ignorant but willing to learn, and being ignorant because you want to prove your point. The later people hear or see something that supports their idea of RLS and no amount of proof otherwise will ever change their little pea-brained minds.

However, here are some come-backs and information you might use or expand on--just in case you come across someone who shows a willingness to learn:

Using Google--there are 24,374,710 results when you type in RLS, Restless Leg Syndrome or Restless Legs Syndrome. That number represents a lot of people looking for answers. If you look up Parkinson's Disease (a well-documented disorder), you get 24,300,000.

Facebook now has 4249 friends and the RLS/WED Foundation Discussion Board has 3018 users. (I was the third person to join the discussion board back in 2004).

There aren't any conclusive tests that prove you have RLS.
There aren't any for the common headache either. So does that mean your headache doesn't exist?

RLS is a made-up disease so the pharamceutical companies can make money.
Sir Thomas Willis first wrote about this in 1672. Sound familiar?

Wherefore to some, when being a Bed
they betake themselves to sleep, presently
in the Arms and Leggs Leapings
and Contractions to the Tendons, and
so great a Restlessness and Tossing of
their Members ensue, that the diseased
are no more able to sleep, than if they
were in a Place of the greatest Torture.

The term Restless Legs Syndrome was first used medically in 1945--long before the pharma companies were producing medications for it.

No one heard of RLS before the pharma companies started advertising it. Now everyone thinks they have it.
Did you ever stop to think that maybe "everyone" didn't have a clue what was wrong with them until they saw the ads? I have heard from so many people who were so grateful to finally have a name to put with their problem.

I wrote in a previous blog about all the medical boards and associations that not only believe RLS exists but are doing research and support programs. If the National Institute of Health recognizes RLS/WED, then your ignorant cousin twice-removed should take heed.

There will always be ignorant people in this world that are hard to convince. Look how long it took to persuade people the earth wasn't flat! By becoming educated and talking to others about RLS/WED, you will find yourself better able to deal with them in a calm, rational way. The worst thing we can do is to rant and rave, insult or overwhelm someone we are trying to educate. That makes us look as bad as the worst of them.

Maybe we need to look into mass production of signs that say, "Beware, RLS Dummy". Then when we come across those who are informationally challenged we can hand it to them and say, "Here's your sign!"

**Postings are of my own opinions and may not reflect the opinions of the RLS Foundation**

Moon & Stars,


deedee j said...

kathy you post it in a much nicer way than i would have! but u know me!! i enjoyed it!

hangover cure said...

we are not ignorant.and just making a joke of RLS? it is a serious problem dude.

Welcome! said...

Those of us that have RLS/WED are certainly not dumb but sometimes we do become complaisant. There are just people in this world who make fun of things they know nothing about or they just don't care as long as they get a laugh.

It is up to us to set the record straight and not take any slighting comments without using that chance to educate.

Welcome! said...

Please believe this--I did not mean to say that those of us with RLS are dumb! I was aiming this at the willfully ignorant. Yes, it is up to those of us who suffer with RLS to set the record straight. In order to do that, we need to be as educated about the disease as we can be. If I was not clear on this I do apologize!

Anonymous said...

I have had this since i was 15 i am 28 now and have suffered in silence way to long.... The older i get the worse it seems to get. I have talked to many people alot of doctors included and have felt for a long time that the condition is not takin seriously. I crave for new information about this condition to educate myslef better on it because theres nothing the doctors can do. Its always effevted me but the last couple of weeks espically have been torture this is a truly debilatating condition!!!!

Welcome! said...

I have always stressed that you have to become educated about this disorder--learn everything you can about it. Not only for your knowledge but because you may have to educate your doctor and all those around you. Plus it helps you gain some control over it. Learn about coping strategies, life-style changes, new medications, where to go for the best information ( I wish you luck. Starting so young is truly hard.

Jeanne Lafferty said...

I'm a WEDF member and just discovered this blog. How great! I've been a victims of ignorant friends and family'. when I say victim, I mean seriously attacked on every level. Thank you for this. I'm thiinking of going public with my condition on Facebook.. I'll have to face my fears that others may also attack me. But some may come to understand, in that case it will be worth it.

rls sciencetist said...

It took me 3 years of research and trying everything out there in the market. finally I am cured of this horrible disease, not 100 percent though. But it is way way better then before. I still get urge but trust me I can feel in my legs that a combination of my daily dosage of pills are doing their magic in my leg muscles. Here is what I take on a weekly basis, 2(500 percent of dv)pills of iron 3 times a week. 2 ( 200 % of dv) pills of magnesium 5 times a week. 2 pills of d3 ( 10000iu) 5 times a week. Trust me it is working on me who has family full rls suffers then it should work on u as well. Don't be cheap and buy the best quality products, brand don't matter. Good luck

Marsha Goldberg said...

I have been suffering from RLS for about a year; however, since April it has become so severe I really can't take it. My doc started me on Mirapex (.125) which I really did not want to take because I had heard you had to keep increasing the dose and then it simply would not work anymore. Then the fun of withdrawl - no thanks. Even though I was only on it for 2 weeks, I still had to withdraw from it. Now I am on between 600 and 900 mg gabapentin at bedtime. It has caused me to have insomnia and takes hours to work. Tried taking it earlier in the evening and still have insomnia and some RLS while I am sitting up waiting to go to sleep. Tonight I have not slept at all and it is almost 6 am. My legs are moving, moving & I have taken the gabapentin, Ativan and a naproxin. So now what??
How do I function tomorrow with no sleep??? Anyone have any suggestions? Please!!!