Restless Legs Syndrome (RLS) Discussion Board

Hello,
For some reason I was watching TV yesterday and an Ad came on and I was shocked. I was born in 67 and I have suffered since I can remember....docters thought I was nuts. Even certain meds would make it worse.
Thank you
Kat

Dear Kat,

Hopefully through awareness and education campaigns, and medical ads, more and more people will find relief for their *problems*.

It takes such a physical and mental toll on RLS sufferers, include me in this, for years of trying to explain, doctors not understanding, self medication ...

Read the New to RLS section, especially medications which can cause worsening of RLS symptoms, and the Mayo Clinic algrothim... take this information to your physician.

We are all here to help support you in achieving the quality of life you deserve. Do not give up, if this doctor is unable to help, we will support you in any way we can in your journey for help.

All of us here have been at one time or another where you are, it is truly a wonderful forum, ask any questions you may have, rant and rave when you are frustrated, share your sorrows and joy, we are here for you.

**********Positive Energy**************

My husband came home a year ago July saying he had heard me described on a NPR program discussing RLS. It was the beginning, the journey to find a doctor who was willing to work with me was not easy, yet with the support and encouragement I received from the people here, I have come a long way!

((((((((BIG HUG)))))))))))

Hazel

Hello all. I'm new here, and I've been reading/scanning a lot of the previous comments from everyone.

My experience is RLS for the last 4 years or so. I got on Requip a few months ago, taking up to 4 mg per night as needed. I have it in both legs, sometimes even in my arms and face. It physically exhausts me and I usually end up calling off work the next day. Thanks Bill Clinton for the FMLA or I'd have -0- leave time and be out lots of pay.

I think I've experienced "sleep paralysis" sometimes because of RLS. There are mornings I wake up after having a bout and I literally can't move. I can THINK about moving, I can TELL myself to get up, but my body absolutely will NOT move. I need more info on that condition.

I also have Fibromyalgia, which seems to sort of be tied into RLS. Diagnosed with Fibro in 1997. I swear this RLS has happened because of the computer age: we sit all day long at a computer so our body doesn't get any exercise, then at night our legs are "restless" and need some activity, so they take it upon themselves to "exercise" by shaking all night. If it were only so simple.

Anyway - I'm reading as much info as I can from all of you and it's terrific to be part of a group that understands this incredible malfunction of the body!! I get these "yea, sure" looks from my boss when I call off work from having RLS the night before. I need to print some of this stuff and show them - people don't believe this thing can be so debilitating!!

I have lots of ailments, but if I could get rid of JUST ONE, this would be it.

Dear Steelergal78
I am so sorry to hear that you have rls. I am glad that you are reading alot of the posts. Also there is alot of wonderful information on the forum on New
to RLs. I read alot of the older posts and have gotten alot of information which has helped me. I do not have fibromyalgia but know someone in this group will answer your questions on that. I have had rls for 15+ yrs and just started taking Requip this year. Have you seen a neurologist regarding your symptoms? This is a wonderful and supportive group and know you will receive alot of help. Welcome to this group and please keep in contact and let us know how you are doing.

Hi.
I was just diagnosed with RLS. They seem to think it's from too many injuries. I grew up showing and riding jumping horses and let's just say I spent more then my fair share of time in the E.R. lol.
I read where decrease in caffiene and nicotine can lessen the symptoms. I was wondering if this works? They want to prescribe meds, but I really don't want to take that route. Any suggestion are greatly appreciated.
JT

Hi Wolfishone
I am sorry to hear that you have rls, but you came to the right place to get the answers that you are asking for. Look in the forum called "New to RLS' and see the post "A good place to start "Managing RLS". It will tell you exactly what you are asking about. If you do not have to take any meds that will be wonderful. What works for one does not necessarily work for another. Keep in touch and let us know how you are doing. This is a wonderful group and very supportive. Welcome.

Just Googled it.

JC - sorry I missed your post before. There are some good threads about people newly diagnosed or just determining what to do about the RLS.

Getting educated is probably your best bet. Start with the "sticky" posts in this section (and others). They really can help. You can take some printouts with you to the doc - the Mayo Clinic Algorithm (link in the sticky) will help you and your doc decide how to manage the RLS.

Sorry you had to find us, but hope you can get some info and support here to help you on your way.

Hi JC, I am so sorry that you have all the symptons of rls. What Ann said is so true about getting educated is your best bet. I have read alot of the old posts and there is a fountain of knowledge. This is a wonderful and supportive group and know that alot of people out there will help you. Welcome to this group.

Good evening,

Found this site while searching the web for info on RLS, had been here in the past, but never logged in. I have been putting up with RLS for 26 years, since age 23, seems to be getting worse with age. I am hesitant to use any drugs that treat parkinsons, or requip (?sp). I just drug myself at night with 0.5mg of Klonapin, and sleep on the floor, so I don't beat up my wife. I am lucky enough to get a fair amount of sleep, however i am told that my leg keeps jumping most of the night. I just wish I could sit still in the evening to read, etc.

I'm reading a book called Restless Legs Syndrome by Robert H. Yoakum and in it mentions the rls.org website and talks about support groups.. So I looked around and didn't find any support groups in my area but did find this forum deal. Thought I'd see how everyone else is living with this. Nice to meet you all.

I'm new to the discussion board, not new to RLS. Have visited the rls.org site before. I can't believe all the new info out there now, haven't looked into treatments in a while. I first noticed RLS in college, thought I wasn't getting enough sleep with all the all-night studying, full time work, etc. It continued and worsened after college, I thought I was losing it. Sitting in the recliner watching tv, and my leg would drive me and my husband (BF at the time) nuts! I didn't go to a doctor, thought I was imagining it, til I saw a story on Dateline (would've been late 90's). I thought, OMG, there's a name for this?! One relief - it was real. Problem - wasn't much known about it or relief for it. So, I just lived with it, mine wasn't as bad as the people they profiled in the story, and weird thing - it's only in my right leg. I've never seen anyone else mention that but would be interested to hear if others have one-sided RLS. I may have had a handful of very mild bouts in my left leg along with the right, but my right leg seems overwhelmingly affected. I will stretch, rotate my ankle, etc til I fell asleep, I think out of exhaustion. I've also had migraines for years. When they suddenly worsened in 2003 I was put on Neurontin. After a month I realized - my RLS was gone! That's when I found it worked for others. In 2005 I started taking B vitamin complex for asthma and fatigue, and in the meantime stopped taking the neurontin. I have had only an occasional migraine, and my RLS is very infrequent and less severe when it happens. I also take a multivitamin more regularly so I believe the B and multi have both helped me. When I get it, it goes in spells it seems and I plan to track those spells to try to find a correlation with anything.

Although my RLS is not as bad now, I would still like to "keep up" with the latest should it return. Also am interested in familial links, ethnic, etc. I don't know of anyone in my family who has it though I've never asked (my husband and a couple of close friends are the only ones who know I have RLS). My maternal grandfather did have Parkinson's though, and I keep seeing relationships there. My ethnic background on that side is Hungarian and Italian.

~ smithwest

Welcome Smithwest, Jen, and Basswipe. I know it's like an oxymoron to welcome anyone to RLS, but I'm not, really. Just welcoming you to the board. We all know that we wouldn't willingly welcome RLS on anyone. . .OK, well, maybe some of the idiot doctors I had - just for a few minutes (or at least one lost night of read, TV, a movie, dinner, and a little sleep).

As Basswipe has found by reading old posts, there is a LOT of info on this board in the old posts. To start, the "sticky" posts are great. They have lots of links to other sites, research, etc. Much of this can be printed and taken to doctors, too. The posts themselves describe the many ways we experience RLS and find relief. Mostly, though, they show our compassion and concern for all those out there that need some help.

Hope something here is helpful for you. Please feel welcome to pipe up in any thread, old or new.

i googled too!

dee

glad i did too!!!