Restless Legs Syndrome Support Group
Restless Legs Syndrome (RLS) may be described as uncontrollable urges to move the limbs in order to stop uncomfortable, painful or odd sensations in the body, most commonly in the legs. Often sufferers think they are the only ones to be afflicted by this peculiar condition and are relieved when they find out that many others also suffer from it.
I may not have RLS as bad as some people here, but it certainly was agony for me for years and years. I finally did learn how to control it -- on my own -- through dietary changes, and by avoiding meds that triggered it, and by compensating in other ways.
I still get it on occasion, mostly because I forget and eat some of the "forbidden fruits." And I stay up at night, too -- but I've always been a night owl. It's mostly at night, but not I've had it in the daytime, too. People who don't have it like to offer all sorts of "healthy sleep" suggestions and psychological conjecture, don' they? So annoying to be told by non-sufferers that people with RLS are making stuff up or just have insomnia. Not many believed I had a condition at all until Big Pharma was running commercials every day.
What I experience is the gnawing sensation that I need to get up and walk around, but I also get the periodic leg movement. That was so bizarre: When I would get it at night, right after I fell asleep -- shake, shake, shake... wait ... sleep ... shake, shake, shake. Every darn night. Every 20-45 seconds. For hours, and sometimes till it was time to go to work. It was terrible. I was exhausted and losing my mind, too. Late for work all the time, too, because I would fall asleep finally as the sun came up. I was really getting worried when it started happening when I was still awake, too. So, I just made up my mind that I'd get to the bottom of it, and after much trial and error, it worked out.
So, I think it can be controlled with specific, conscious effort. All the new pills make me wary. I'm really glad some people do well on them, even if only for a while. But I just didn't believe in being an medical experiment. There weren't any meds for so long, then there hope in a couple of extreme pills. Then the pharma-marketed ones.... I just never had any interest in taking daily doses of anything.
I know it's maddening, and will drive some people to utter hopelessness. I was there, unfortunately, but now I think the triggers can be found for most cases, but you have to keep at subtracting and adding things to your life. It's definitely work keeping track of it all, but worth it if you can lessen the severity or eliminate the RLS totally. I'm no doctor; just my thoughts.
I still get it on occasion, mostly because I forget and eat some of the "forbidden fruits." And I stay up at night, too -- but I've always been a night owl. It's mostly at night, but not I've had it in the daytime, too. People who don't have it like to offer all sorts of "healthy sleep" suggestions and psychological conjecture, don' they? So annoying to be told by non-sufferers that people with RLS are making stuff up or just have insomnia. Not many believed I had a condition at all until Big Pharma was running commercials every day.
What I experience is the gnawing sensation that I need to get up and walk around, but I also get the periodic leg movement. That was so bizarre: When I would get it at night, right after I fell asleep -- shake, shake, shake... wait ... sleep ... shake, shake, shake. Every darn night. Every 20-45 seconds. For hours, and sometimes till it was time to go to work. It was terrible. I was exhausted and losing my mind, too. Late for work all the time, too, because I would fall asleep finally as the sun came up. I was really getting worried when it started happening when I was still awake, too. So, I just made up my mind that I'd get to the bottom of it, and after much trial and error, it worked out.
So, I think it can be controlled with specific, conscious effort. All the new pills make me wary. I'm really glad some people do well on them, even if only for a while. But I just didn't believe in being an medical experiment. There weren't any meds for so long, then there hope in a couple of extreme pills. Then the pharma-marketed ones.... I just never had any interest in taking daily doses of anything.
I know it's maddening, and will drive some people to utter hopelessness. I was there, unfortunately, but now I think the triggers can be found for most cases, but you have to keep at subtracting and adding things to your life. It's definitely work keeping track of it all, but worth it if you can lessen the severity or eliminate the RLS totally. I'm no doctor; just my thoughts.
Unfortunately, a lot of triggers are from drugs that people have to take for medical conditions. That happened to me quite a few times. But I also encourage people to try eliminating foods and things to see if triggers can be identified.
The day after I wrote that, I got clobbered by a unexpected bout of RLS. And I can feel it tonight, too.
I've been stressed, so I'm not eating very smart, but I didn't think I had ingested anything that should set it off. I've been hitting the 7-Eleven across the street and maybe it's the honey roasted peanuts? The bananas? Or whatever is in Arizona beverages. Allergies are coming on and I was given Flonase/Fluticasone Propionate spray by my doctor, and I also dropped a Claratin/Loratadine.
It is often difficult to eliminate a source, because 1) It could be multiple things, 2) It could be something that's not labeled, 3) It could be something that you really don't expect.
This Arizona tea can says an ingredient is "Natural flavors" -- you never know what that is, do you? Often a misnomer for MSG, but why would they put monosodium glutamate in a beverage?
It also says "Sucralose" which I didn't realize.
And something called "Acesulfame potassium" -- looking that up now.... It says it is a sweetener.
I used to think I got RLS from caffeine, but caffeinated drinks don't all have the same negative effect. Whereas, some non-caffeinated diet drinks do give me RLS, and really bad. I didn't suspect them for a long time. But have given them up. But this "1/3 less calories tea/lemonade" drink is something I have only tried recently. Damn the interest in cutting back on calories.
Looking up a couple of other beverages brands now, There's two that give me the same reaction..... They both "Aspartame" but this tea doesn't.
But all three do have the same mysterious two ingredients:
ACESULFAME POTASSIUM
NATURAL FLAVORS
I may have just learned something new tonight.
I read labels just like you do. I try and stay away from as many additives and artificial things as possible, but it isn't always possible. But since I've started that kind of diet, my RLS is much less. I also find that caffeine in tea and coffee doesn't bother me. I don't have a lot though, usually 2 cups of tea or 1 cup of coffee.
One thing that triggers it for me is the spice ginger if i have a lot of it. I used to drink ginger tea a lot and also ate candied ginger a lot. It has the same effect on me as hot peppers and cayenne. If I have a tiny bit, I'm okay. A lot and RLS is through the roof.
I agree with you that there may be times when a combination of things are acting together -- making the discovery difficult. Hey, this condition is so awful, I'll do anything to put an end to it, even if it means becoming a scientist myself! :D
I looked into the Acesulfame potassium a little more, and now it's not as clear, because I drank Diet Pepsi for years, and Acesulfame K is an ingredient. I never seemed to get RLS from that, so I'm a bit perplexed as to why some drinks may or may not induce RLS.
1. Chocolate
2. Alcohol
3. Also certain soda drinks -- specific "diet" drinks
Those sites often link caffeine to RLS -- but my experience has been that caffeine makes me stay awake but doesn't induce RLS. I'm suspicios of artificial sweeteners and also MSG but have not got 100% proof to offer on these like the three I mentioned.
Also, antidepressants have strongly correlated to RLS for me so I won't even try them any more, but that's just my personal decision. I'm looking at antihistamines now. On the worst pollen days, though, I'm not anout to do without some help.
For you, give it a shot. First, assess how often you're getting RLS, so you can know after your changes whether there has been an effect or not. Research the topic a bit and make a list -- foods to avoid for restless legs. If you cut out some and your legs are better, than you have a positive result. Add them back one at a time, over a period of time, and see if the RLS comes back.
I'd definitely recommend kicking chocolate and alcohol first. Then, if you have a beverage habit, try moving toward drinking water only for a little while at least. (Caffeine withdrawal can be a monster though)
It's easier in concept than real life. As I said, I had more than one definite food trigger. So it took years and I'm still finding other surprises.
I accidentally took two in a 24-hour period and literally lost all sensation in my body WHILE I was driving. I called an ambulance because I had no idea what was happening. After an hour at the Emergency Room, I was getting better, but some mean guy was asking me what kind of drugs I was on and why I was trying to kill myself. Such a bad, confusing scene. Never again. I imagine it's like being on low-dose Ecstasy, but not particularly fun in any way.
Science is the best, but I'll wait till they actually do figure it out. I find life, not "easy," but "simpler" if I remove chemicals from my life rather than paying for one pill to make me taller and another to make me smaller. That's just me and my psychophysio make up. I only mentioned SSRIs because of my experience and having read many other people saying the same about SSRIs and RLS.