Just found this Forum

BartSr · Post by **BartSr** » Mon Feb 19, 2007 10:00 pm

I seem to h ave RLS. Have had it since a teen-ager but didn't know it.
It was confirmed during a CPAP sleep study.
Apparently taking Calcium+Magnesium helps a bit but
takes about 1/2 hour before results.
Also, it does not show up everyday, lately it has been delayed for
several days at a time.

Paul Barton (named Bart Senior by my son's friends who call him Bart).

ctravel12 · Post by **ctravel12** » Mon Feb 19, 2007 11:13 pm

Hi Bart Sr and welcome to this board. I am glad that you are finding relief and thank you for sharing that with us. I hope that it continuers.

Please keep us posted on how you are doing. You have found a wonderful and caring group and we are here for you anytime.

daveldson · Post by **daveldson** » Tue Mar 20, 2007 5:39 am

Hi, I just found this forum.

It has gotten so frustrating trying to explain my circumstance, my problem to the medical world. It has been and is so tiring, exasperating, frustrating and nonproductive. Sometimes I just can't imagine doing this the rest of my life.

I have had RLS since I was 7 years old when I first remember the feeling of electricity running through my legs at night. I developed a fear of the night which continues to this day. I had a reprieve from RLS during my childbearing years and now that I am menopausal this curse is back with a vengeance. I have been from my GP who sent me to a psychologist, who has sent me to a neurologist then back to the GP to start all over again. I have taken relaxation classes, listened to relaxation tapes. I’ve tried yoga, mantras, stretching, pacing, exercising, NOT exercising anything else I hear about. I have tried hot, cold compresses, I have been given and tried Klonopin, Xanax, mirapex, Trazadone, Valium, Cyclobenzaprine and recently Requip which I SO wish I could say worked but doesn’t.

I keep a journal in the hopes that when I am once again sent to a new “doctor” I might, just might not have to start from the very beginning again. I catch everything that goes around do to the lack of sleep, my resistance is low. My poor husband has been so kind it just makes me feel worse. The first time I found this site it was in the dead of night. Thats when I feel so alone all I do is just cry and wait for morning.

Thank you for being here and listening! ~Dee :shock:

SquirmingSusan · Post by **SquirmingSusan** » Tue Mar 20, 2007 9:51 am

Hi Dee, welcome to this forum. So sorry you have been suffering with this crazy disease for so long. Many of us also have tried just about everything. Some of us find that we need opiods (Vicodin, oxycodone, methadone) to control our RLS symptoms. And many doctors are afraid of those drugs. Hydrocodone (Vicodin, Norco) is the ONLY thing that has worked for my RLS since taking Requip and having augmentation. But you may still have other options.

There is a support forum for Southern California. It's run by Dr. Michael Buchfuhrer, and if you read the patient letters, he answers them all personally. He's one of the top doctors in the field, and is a co-author of the Mayo Clinic Algorithm, and an author of a book on RLS. Here's a link to his site:

http://www.rlshelp.org/

I don't know how far his practice is from where you live in So. Cal., but it might be worth it to make an appointment with him. You can bypass a lot of clueless doctors that way.

You can also find a link to the Mayo Clinic Algorithm in this section in one of the stickies on top of the page. Be sure and read that - it will answer a lot of questions about what works and what doesn't work.

Susan

SquirmingSusan · Post by **SquirmingSusan** » Tue Mar 20, 2007 9:54 am

Oh, and I wanted to mention that for me, relaxation exercises are absolutely no help at all. It seems the more relaxed I am, the worse the creepy- crawlies get. I'm going to a workshop in a couple weeks, and there will be lots of meditation stuff - "relax, breathe, feel into the body" kinds of stuff. I'll need to bring extra Vicodin for that. Can't relax into my body with the RLS stuff happening.

Susan

cmunroe · Post by **cmunroe** » Tue Mar 20, 2007 6:54 pm

Hi, i am new to this forum. I was diagonosed with RLS a few years ago. My RLS remains inactive as long as I take a Vitamin B6/B12 and Folic Acid supplement. I have been doing this for three years and feel fine. The only time I notice my symptoms returning is if I run out of Folic Acid and don't get it right away. If I go about a week without it I will notice twitching and jumping at night and the inability to keep my legs still. This is the answer for me. I started this routine after my friend read an incerpt to me from a medical reference book about problems with legs and circultion often being related to these vitamins. I realize this may not work for others, but I think its important to share any info that could help. Also, some people cannot absorb Vitamin B6/12 and Folic Acid through supplements and need shots, so supplements would show no improvement. I hope there is someone out there that can benefit from this info. It changed my life.
Connie

daveldson · Post by **daveldson** » Tue Mar 20, 2007 7:02 pm

SquirmingSusan wrote:Oh, and I wanted to mention that for me, relaxation exercises are absolutely no help at all. It seems the more relaxed I am, the worse the creepy- crawlies get. I'm going to a workshop in a couple weeks, and there will be lots of meditation stuff - "relax, breathe, feel into the body" kinds of stuff. I'll need to bring extra Vicodin for that. Can't relax into my body with the RLS stuff happening.

Susan

I found the same thing with the relaxation. It's just that I tried everything the doctors suggested. Tells you how much this doctor knows about RLS...
Just relax... he says. pffff!

~Dee

Post by **Polar Bear** » Tue Mar 20, 2007 8:43 pm

Connie, what dosage vit b2/12 and folic acid do you take, ta, Betty

ctravel12 · Post by **ctravel12** » Tue Mar 20, 2007 10:47 pm

Hi Dee and welcome to this board. I am so sorry that you are having such a rough time and the meds are not evening helping.

The Mayo Clinic Algorithm that Susan was talking about is "Managing RLS" It is an excellent article and may be worth your while to print it out and give it to your dr.

If you just want to talk, vent or whatever, we are here for you and believe me we understand about being alone and crying. I have done alot of that. This board has literally saved my life. At one time the thought of just sitting , lying, etc. was something that I could not even bear to even think of.

I hope that you are able to find some type of med or meds that can help you. I have my rls under control and sure hope that it stays that way.

Please keep us posted on how you are doing.

Hi Connie and welcome to this board. I am so glad that you have found relief for your rls and thank you for sharing your story with us. Even if you help just one person, it is a good feeling.

Have a good day and again welcome.