RLS Foundation

i hear you lady and i know exatly what you are going through.
hopefully soon there will be more help for r l s in the near future..

Your worst fears are shared by many RLser's. That is why a lot of us have medical bracelets, medical ID cards that explain RLS. they are available form the RLS foundation. The cards explain you have RLS, what meds can NOT be given, and you should always have a list of your meds and what they are for with you, so someone can find them with your ... See MoreMedical Id card. And, very important, and certainly not last, is to have a copy of your living will on file and a copy with you if you are travelling. YOu need to have as many things on you as possible, so that rescue personnel can help you when you cannot speak for yourself. Everyone SHOULD have a living will, no matter what. It is one of my pet peeves after working with the Council on Aging. I AMAZED
at the # of well educated and smart people who do not have this done.

I'm new, what do you mean by "what meds can NOT be given??

welcome to my world. I have 3 kids, a loving wife, a very good job but RLS. I'm 45 and I survive. That's it. Only RLS-patients truly understand but even that doesn't help. I sympathise. Deeply. Koen

We do understand. when your RLS gets to this point where it is taking over your life, then it is time to try a few different meds. You may have a phobia, because one med did not work for you, or made you sick. But, being perfectly honest with you here, when it takes over your life and is getting worse, there has to be a point where you have to be ... See Morewilling to try some meds. I have been doing this for over a decade, as far as support groups and research on RLS, and in my big group which has 1277 members from all over the world, very few home remedies will work with any regularity. I ma not trying to be negative, but you sound like youare desperate. You need to talk to a doctor about this, and see if he has suggestions what you can try after that first med, whatever it was made you sick. There are all different kinds of classes of meds, and one could work for you. I am not pushing meds, but in some cases, you have to start considering the idea that you may have to rely on something to help you maintain sanity. http://www.rlsrebel.com is a web site by a long time member of one of my groups, who goes the non drug route. She speaks at some RLS conventions, too.
Stay in touch. Support is key, as well as knowledge.
Read, read, read. :o)

Yes, I saw it. Disgusting!

i wont ever go see anything with him in it, movie etc, hes a plain stupid person for sure.mmaybe he will get a taste of what it like

He did that a couple of years ago. The worst and latest would be Ann Coulter's remarks on the Bill O'Reilly show, saying that insurance premiums will skyricket if insurance companies have to pay for treatments for silly things like RLS.
On www.rls.org under "Take Action" you can get the email address, and see the video.
Or Henry Waxman's gaffe is ... See Moreon there, too, alsthough qwe got an apology out of him, becayse one of my group members went to Washington, met one of his staffers, and it wnet from there. he is the chairman of the helath Reform committee, and he made fun of RLS on political talk show.
We had a nice looong letter writing campaign over the summer, and you can read the apology on the Foundation's web site, also. He REALLY should have known better. LOL But, we got our msg across. I am a little more concerned about a remark like Ann Coulter's, and what it could mean for health care, if that kind of thinking takes wing.

I had a horrible experience with Requip -- fainting and vomiting. Recently, I heard the suggestion to suck on it like a TicTac and it won't cause the sick stomach. I disposed of my prescription, but you might want to try it and let us all know if it helps.

nah, no sucking like a tic-tac. I'll take the side effects over the torture of RLS. having suffered for so long there's no going back. instead of sucking like a tic tac, cut the pill in quarters and take gradually if it is that bad.

Much better idea, Rich. I had not noticed the trend of people saying their RLS got worse, starting 3 yrs ago? what do you mean by that? The trend I see, as people start getting older, like late 20's or early 30's is when RLS really starts kicking in, and that it gets worse as we get older.
most of the really desperate people I talk to these days ... See Moreare the ones who have not been using any meds, and they are fighting the time when they might have to. Half of the fight is accepting that one might have to take meds for the rest of our lives. That is totally fine with me, as long as I have meds that will work, and a doctor to prescribe them and understands rLS. Not so easy for some people to find. I wish some would look for help quicker, and get more knowledge of what is going on. Read and research.
I also agree that a few side effects from a med can be better than the hell of full blown rLS. some side effects are two difficult to deal with, but through trial and error we can find something. I could not take Mirapex or Requip. Waaaay too sick. I could not function. Opiates are what does it for me.
There ARE some people who never find a med that they can tolerate. I feel so sorry for them.

Mirapex works for me also but am up to 2 at night, not sure how many you can safely take. This disease is truly nightmare for those suffering from it. My heart goes out to all of you.

One thing to remember that what works for one, does not work for the next person. I am very jealous of people who can take mirapex, but there are a lot who cannot. :o) You should be asking your doctor what your safe dosage is, and if it is wise to up the dosage. You can bring on augmentation
by taking too high of a dose, ( it is individual), and then you are back at square one.

I have not seen many parents posting here, but I have seen a lot of parents on various places on the internet. I have members that have joined for their hubbies, fathers, wives mothers, and more and more with kids who have been dignosed.
On the Foundation's web site, there is a PDF file of the talk that a pediatrician that treats children with RLS... See More gave at the last RLS conference in Boston, which I attended. He name is Dr. Judith Owens, and she also has book out, available on amazon for one place. You should read what she says about treating children. :o)

http://www.rls.org is the Foundation web site.

Happy New Year to you ALL!

I have diabetes neuropothy. I have tingling, numb spots, and hurting in my feet. In fact, sometimes I feel like there's a piece of duck tape stuck to the bottom of my foot. My doctor prescribed Elavil. That definitely made the creepy crawlers come alive in my legs. Another RLS horror story.

Dr. Mark Buchfuhrer is a member of our Medical Advisory Board. He also acts as Medical Editor for the NightWalkers newsletter.

HI, MaryEllen,
Yes, Elavil is one of my RLS horror stories, too. Before I knew what RLS was my doc was prescribing it for prevention of migraines. That did not work, so he doubled the dose. That is why I was riding my exercise bike at 3 a.m. to keep from throwing myself out a window. That was some of my worse RLS ever. I will never forget it! I ... See Morestill have RLS, but Elavil, as a tricyclic anti-d is in one of the classes of meds that must be avoided by RLSer's. I have heard the worst stories over the years about that class of meds.