Well, I just joined after I was looking at the posts on RLS. I notice it has been a while since anyone posted in this category. just wanted to give a quick history lesson on RLS, which surprises me.
RLS is a very real problem, and I can assure anyone who doubts it that there is a ton of info on the internet about it these days. Back when I started researching it, we barely knew what it was called. It was named RLS in the 40's by a Dr. Ekbom, so it
is also called Ekbom's syndrome for those of you who do not like the RLS name. Whatever it is called it is not a disease made up by the drug companies to sell drugs. I swear I hear that so much I could scream, and do sometimes! LOL It was written about in the 1600's and I am quite sure that there were no drug ads on tV back then, or in the 40's for that matter. And the Mayo Clinic, or the New England Journal of Medicine, the Atlanta Sleep Clinic, Johns Hopkins and lots more did not make it up either.
It can leas to severe sleep deprivation, which can lead to heart disease, stroke and high blood pressure, and many other diseases.
if you think you have RLS, check out a reliable web site such as
WEB MD, the RLS Foundation, and read the diagnostic criteria.In RLS land we usually say that Fibro gets worse as the lack of restorative sleep caused by RLS wears you down. RLS causes lack of sleep, it is not a result of lack of sleep. Yo can also have PLMD, whcih is leg movements in your sleep that you are not usually aware of. Your sleep partner may be very aware of getting kicked by you however. LOL RLS is when you are awake, and you cannot lay or sit still, so falling alseep is impossible at that point. The feeling is that you have to move to make it feel better. If you have to move all night, or walk, we call that being a "nightwalker". so, if you have to walk all night, obviously you are not going to get any sleep. One should get a sleep study done to see if PLMD or sleep apnea is present.
RLS can be idiopathic (no known cause by elimination tests), it can be cased by a low Ferritin level score. This is how your body stores iron, so it is a diffferet test than just a regular iron test. You have to make sure that the lab is going to run a ferritin score on you. Pregnancy can bring on RLS, and disappear when you have given birth, although with some people it sticks around permanently after birth, too. there have also been a gene
mutation that proves it can be hereditary. In my family I have it, my two sisters, my 3 nieces, and many cousins. So, we are fairly sure (LOL) that it runs in families. There are several ongoing studies involving some large families with RLS.
We all react differnet to the same meds, so no med works for everyone. It is a trial and error scenario as far as finding what meds and coping techniques work for you. Some only have mild RLS, and then others have it 24/7. it is brutal. Exercise is good, but too much will excite your legs. We need t make sure that we do not exercise too close to bed time, as that brings up your core temperature, and we need pur bodies to cool down in order to fall asleep. and yes, stress can definitely make RLS worse, as it can the pain of Fibro.
There are a lot of people with RLS always looking for support.
The yahoo online support groups are great for support. I moderate and own several groups with people from all over the world. the biggest one has 1277 members, and has been going since 1998.
Some people have very good luck with natural treatments, who are usually the ones with a milder case. There are several medications that are approved for RLS, which d ot workmfor everyone, or the side effects are too mjuch. I cannot take them, so my RLS is controlled the best with low dose opiates, which also help with my fibro, and chronic pain disabilty issues. so, am killing 3 birds with one stone. Nothing works all the time, every day. There are some days when nothing will work, and then that is when we have to develop very good coping skills. Eventually, after much trial and error most people can find something that will help; some others never find anything that helps, whether it be prescription meds, or herbals, which have to be considered as meds, too.
there arec several fraudulent web sites out there that advertise a cure (there is none) or promise your RLS will disappear immediately, 100% guaranteed, etc. I advise anyone desperate enough to try any of these "magic" web sites t save their money.
these are just greedy people trying to take your money out of eesperation for sleep. So, I just wanted to go over the RLS picture to give a clear and factual account of, some issues that surround RLS. It is very real and very miserable, and gets worse with age. That is also a fact. It can go into a sort of "remission" at times, but especially if you have the gene, it does not go away. There are also many meds that can exacerbate
RLS terribly like certain anti-depressants in the classes of SSRI's (paxil) and tricyclics (Elavil).BellaOnline ALERT: Raw URLs are not allowed in these forums for security reasons. Please use UBB code. If you don't know how to do UBB code just post here for help - we will help out!
