Restless Legs Syndrome Support Group

HI, Sue,
I am brand new to this site, but certainly not new to RLS. I moderate 3 online support groups for RLS and Insomnia. have had RLS since i was 14 and broke my back. Out of over 1500 people that I talk bto on a regular basis, not many can control RLS without medication, especially if it is refractory and occurs 24/7. i learned a long time ago that I was going to put up with some side effects, because if i did not get some sleep I would go insane-seriously.
There are several meds that help different people- all classes of meds.
there are also meds to stay away from, because they will actually make your RLS worse. Tricyclic antidepressants is one that will drive most RLSer's to suicide from the bad effects from these drugs. i am not syaing the drugs themselves are bad, but most anti depressants will amke your RLS worse.
if you really want to resist the drug route, www.rlsrebel.com is a wonderful web site by a long time memeber of one of my groups. She has a book out, too, but it is all on the web site for free.
If anyone here wants to read about drugs and foods to avoid go to www.rlshelp.org
That is a web site thaqt si run by a doctor who treats nothing but RLS, and is on the board of the RLS Foundation. just some ideas.
I, personally besides my meds, love the hot baths, also take magnesium,use heating pads, sports cream (don't use too much!), Tension Tamer Tea, herbals (yes, they are drugs, too) like kava kava which promotes relaxation, and Valerien Root which helps promote sleep. if you have any liver function issues, stay away from kava. I get my liver function checked every 3 months.
The big thing that I have not seen anyone mention yet is iron. You need to ask your doctor for a Ferritin test, not just an iron level. The Ferritin test tells you if your body is receiving the iron and storing it. The lab # for RLSer's for Ferritin is a level of 50, at least.
RLS can be exacerbated by so many things. That is why it is good to do your research.
i would never jusdt put up with it! There are things you can do, and meds that won't make you feel like a guinea pig. I could not take Mirapex or Requip (approved for RLS) be ause the side effects were justn too intense for me, like nausea, dizziness bad enough ton put me in the ER. And, I lost 30 lbs!! Not a good way to lose weight. LOL I take my meds for chronic pain issues, which are time released morphine every 12 hrs, and Vicodin 4x a day. The idea is to quell the symptoms before they start. once you are in the middle of an "attack", for lack of a better word, it is very hard to stop it with meds, walking, or any other tricks you may come up with for yourself.
One person mentioned dancing and alcohol.
The dancing will help keep the RLS at bay, but not so much the alcohol. but, we aqre all different; I just don't recommend it, and neither does the RLS Foundation, Mayo Clinic, WEBMD, and other sites. I have been doing all the research and reading I can for the last 12 yrs, since I found out what RLS is. It is not easy, for sure, but doing nothing is not going to help either.
just my 2 and 1/2 cents. ;o)

I forgot to add that www.health.com has a good section on RLS, with patient videos, and some of my members were interviewed.
"What Restless Legs Feels Like" is a good place to start. It will take you to video stories and print stories. Click on the one with the girl with the dark hair/Donna. She was the one that was interviewed the most extensively.
Trish

I would also like to add that if you see an ad for somewthing that promises to CURE
RLS, skip it, and save your money!
I have every one of these sitting on my desk gathering dust. I always ask for free samples, so have not put out much money for them.
Oh, and about the Ferritin test. don't start taking iron on your own, because
too much can be a bad thing, too. Iron only works for about half the people that are tested, though.
Ok, I am done! LOL
Time to get up and take a walk!

I used Dr Ho's tens machine today and it helped alot... I still have to discuss dx with pdoc... he said some of what I was feeling was RLS awhile ago but its gotten worse... I find muscle relaxants help me .. ie flexeril and otd robax.... I hope you feel better soon...((hugs)) polar

I was doing some research and one site said RLS could be due to dopamine deficiency, any-one else heard of that?

Hi,
RLS is not necessarily a dopamine deficiency, But, Parkinson's is. Many
places and people tend to mix the two up, since there are Parkinson's meds used for treating RLS- Mirapex and Requip used to just be PD meds, but are now approved for use of RLS. This does not mean that if you have RLS you will develop Parkinson's. Works the other way around,
though. These meds only treat SOME people and their RLS. There are many that are not helped by these dopamine agonists at all. That is why we cannot sy yet what one thing certainnly causes RLS. We are a long way away from that, unfortunately! RLS, can also be connected
with low Ferritin stores (how iron is stored), taking the wrong meds, too much sugar, caffeine, artificial sweeteners, , too much exercise, too little exercise, and on and on. It will be nice to narrow it down some day! It can also be inherited. There have been sevearl genes isolated that prove that it runs in families in a lot of cases. You could have RLS just because you have the gene and no other reason.