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I posted here 2 yrs ago, (moderator of several online support groups for RLS) I had a freind that used to give me the "eye roll" whenever the subject of RLS came up. Then she got pregnant, and developed RLS to thye point that she was absolutely desperate for sleep. She has had the baby, and now does not have RLS any more. However, the point I wnat to make is, after reading some of the comments here, I feel that I have to point out that there are various
levels of severity of RLS. Some people can exercise it into submission. Others need to have hrs of very "quiet time" to calm the legs (and arms) dwon before bed time. Excercise needs to be done at LEAST 4 hrs before bed, RLS or not. IT raises your body's core temperature, which needs to be lower for better sleep. The word "suffer" can be very aptly used for most of us who have PRIMARY RLS. There is secondary RLS, such as is caused by something like pregnancy, or a low Ferritin level, or other underlying factors. Then, there is primary RLS, which seems to have no underlying cause except that it is hereditary. There are gene mutations that have been discovered in large families that do prove that the gene can be passed down. Also, someone above mentione iron supplements. The key here is to ask your doctor for a Ferritin level test, not a regular iron serum test. Ferritin levels show how your body stores the iron. YOu can take iron supplements until the cows come home, and they will do nothing for you if your body is not storing the iron right. Two totally different blood tests. An RLSer should have a Ferritin score of at least 50. A person without RLS can have a much lower score, and it is considered normal. Just had to "educate" my GP on that issue a few weeks ago. Also, someone who was 16 yrs old said that they are uncomfortable with medicating something that is only an "irritation" in their life. As you get older, RLS usually tends to get worse, and then the word suffer comes into play. Severe sleep deprivation IS dangerous, and can cause all kinds of other sleep issues, high blood pressure, heart problems, etc. So, for the doctor on here that says that RLS is not dangerous, I really beg to differ. IT really can take ovedr your life when it is severe, ruin relationships, people lose jobs, severe daytime drowsiness so that it is impossible to drive, etc. And, the medications that are appproved for RLS certainly leave a lot to be desired for the many people who have to try them to get any relief. MIrapex and Requip have all kinds of side effects that can cause us not to be able to take them, so other drugs need to be tried off for off label uses. Mine started after I broke my back at 14, and I have always assoiciated RLS with my spine. That is not a ludicrous assumption, as I just read some studies that say that RLSer's have "more excitability" in the spinal fluid during sleep studies than people without RLS. There are way too many reasons why RLS can occur, and there is not one definitive answer anywhere. I have read every study, every book, every web site that I can find, and the only factor that continues on thru all of them is that theer could be several different causes, what works for one person does not work for the next, and that the symptoms range from "mildly irritating"
to "extremely severe", therefore severely limiting the life styles of people who deal with this and SUFFER fro it every day, 24/7.
ALSO, the web site address for the RLS Foundation in this article is NOT www.RLSF.org, it is www.rls.org

November 11, 2010 - 2:58pm


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