A Newbie!!! and searching for answers related to RLS

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
joyce_l
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Joined: Sat Jul 18, 2009 1:59 pm

Post by joyce_l »

wow, i see. thank you!

but how come this is such a rare condition. in spore no one know. :(

Neco
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Post by Neco »

It is rare in part because in the past people have been reluctant to ask about it with their doctor, and also because many doctors are uneducated about it, and some will tell people it is "in your head" or there is no treatment, etc.

Things are slowly changing because of the RLS foundation and other advocates who are starting to bring awareness to the problem though. There are no exact numbers, but many people believe that as much as 10% of the general population has RLS of some kind, to some degree..

The cases like ours where it is severe and every day, or 24 hours every day seem to be a smaller percentage also, so our sub-group of RLS sufferers has an extra hard time on top of everything else.

The best thing you can do is to take the Mayo Algorithm with you whenever you see a doctor to discuss RLS, and ask them to please do their own research and become familiar about it, so they can help other patients in the future. As it stands now we have many different treatments, and while no one treatment is guaranteed 100% (except for strong opiates) there are still many ways that it can be addressed.

I don't know if it is available over the counter where you are, or if it is a controlled substance, but I have read that in many Asian countries that Ultram (tramadol) is pretty easy to get. In the US it isn't a controlled substance, except in 1 state, so you only need a prescription to get it , and sometimes it can be really helpful for RLS versus trying to get more stronger and tightly controlled painkillers from doctors. Every medication has its risks of course, but if you not taking any anti-depressants and do not have a history of seizures or high risk of them, and it is easy to get some OTC or prescribed, then Tramadol might help you get the rest you need at night.

Again all the really good, possible treatments are in the Mayo Algorithm (link in my signature) so it is a good idea to print out a copy and read it all, and then take that copy with you to any doctor you try to get help from. The Mayo Clinic is a very well respected organization inside the USA (people come TO the USA from other countries to get Treatment from Mayo) and I would hope doctors around the world also know it is a good place.

ViewsAskew
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Post by ViewsAskew »

Because there appears to be a genetic component, it's much more common in people with European genes, particularly Northern European. The rate in Asian populations is much lower. In Japan, one study found it was less than 1 percent. Contrast that with some European countries with almost 15 percent.

Not sure of your genetic heritage, but being in Singapore means that few people do have it, all things considered. And, as Zach said, culturally these people may not have ever complained about it.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

joyce_l
Posts: 17
Joined: Sat Jul 18, 2009 1:59 pm

Post by joyce_l »

Since this is a neurological condition means it willl not affect our IQ. does that mean people who suffer this has high IQ level too? lol...just curious.

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Not related to IQ in any way as far as I know. Of course, I'd like to think everyone here is brilliant, lol.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

joyce_l
Posts: 17
Joined: Sat Jul 18, 2009 1:59 pm

Post by joyce_l »

yea. wondering why last time when i sit down, i dun get the feeling of something crawling in my legs...but now i feel it when i sit down for like 20 minutes..

Why is this so?

is it getting serious?

Neco
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Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
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Post by Neco »

RLS can come and go for some people. The only time you would be able to tell that it was getting "serious", is if it showed up one day, and then never stopped. Its possible you may be distracted sometimes and not notice it.

When I am checking Internet Forums and the like, I usually forget to take my medication, but after I'm done and have nothing to pay attention to, I remember I haven't taken it and can start feeling the RLS.

joyce_l
Posts: 17
Joined: Sat Jul 18, 2009 1:59 pm

Post by joyce_l »

i see. but zach, have u been taking medicine since u diagnose with RLS?

what will be the side effects if u dun take ur medicine?

Neco
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Post by Neco »

I have been taking opiates of one type or another, since I was diagnosed.. I'm probably NOT the best person to look at as an example of an easy to understand effect medicines can have on your body and your RLS, because I am a recovering opiate addict, through no fault of the medication - I just made poor choices.

But to answer, if I do not take my Methadone, I will start to feel my RLS symptoms, which can be pretty severe. I get RLS in my legs, arms, and torso when it is at the worst. But after a while if I was taking no medication, I would start to go through Methadone withdrawal, which can be extremely painful at first.

Some people worry about getting addicted to their medication, but in general that does not happen and I look at it like this: Until they find a cure I'm gonna need Methadone every day, because it helps RLS and helps keep me from using other less legal drugs to treat it, as no doctor would rightly prescribe me anything else ever again if they knew my history of abuse. So taking the Methadone keep my cravings away, and gets rid of my RLS for the whole day. It's win/win in my case.

There are many non-opiate treatments, but they are not all guaranteed to work, and some can actually make your RLS worse, plus stopping those medications when that does happen, also results in worse RLS for a few weeks(but doctors are supposed to give an opiate in that case, to ease the transition). It's all about choices. There are lots of treatments to read about, all with their pros and cons.

joyce_l
Posts: 17
Joined: Sat Jul 18, 2009 1:59 pm

Post by joyce_l »

does doing sports for u help?

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