I think the biggest change has been my thinking about the whole thing. I've come to see it as a symptom of subconscious thoughts...usually thoughts about things I have to do, but can't really get moving on. If I have a ton of things going on, but can make progress....I'm fine. But when I know there are things coming up, or more to do than I can possibly get done, or something to do but I don't have control or the ability to do it, or I've just finished some projects and don't know what I'm going to do next...THAT is when I'm plagued by the RLS. I'd never given much thought to it in the past, but it's proving true, over and over. I'm beginning to wonder if this also explains why it gets worse in midlife, when we are wondering what to do with our empty nest, retirement, rest of our life, etc. Even though I have plenty of things to do, I know I'm struggling with what to do next.
With that in mind, this is how I visualize the cause of the RLS. Mostly, I use a theory of mine, that during an RLS episode, the mind is sending out electrical impulses that make the legs want to move. BUT, they aren't productive impulses, in that, we don't want to go anywhere...or we CAN'T go anywhere, for one reason or another. I noticed that we all deal with it by getting up and moving, or by concentrating hard on something else. So, I started using this "solution" aggressively, rather than as an escape mechanism. If moving or thinking hard about something works as an escape, let's use it as a therapy. If I concentrate HARD on something else, it's as if it overshadows the useless impulses to my legs...and, although I'm still aware of them...they don't prevent my reading or my sleep anymore.
Think of it as "drowning out the useless impulses". It really works for me. At first, it didn't always work, because before I could find something to think about, my panic set in, and I was up and walking around in a fit. But, I found some things to think about, that DO work, and now, just the beginning of the thoughts will do it. I've gotten to where I go to bed, feel the RLS starting, get MAD at it...and say, "DAMN IT!!!! If you're gonna shout at my body with useless stuff, then I can shout louder...here goes!" And with that, I concentrate REALLLY hard on something else. It's as if I turn my back on the RLS and ignore it 'til it goes away. Sounds crazy, but it works. And, it's different than just trying to ignore it by creating a void in your mind....or hoping that next wave of cramping won't happen. Think of it. If someone is yakking at you and you turn your back to them...you'll still hear them. If you stick your fingers in your ears...you'll still hear them. But if you scream louder than they are...and blast some music...you won't hear them. It's MUCH different than the way I dealt with it for 40 years. I used to try to "not think of it". Or I'd try to stay still. Yea, right. That's like trying not to cough when you have that dry tickle in your throat and don't want to wake your partner. It doesn't work.
If I'm reading the paper...I used to get RLS and panic and just read faster, finally giving up and putting the paper down. But now, when it starts, I force myself to read an article thoroughly, concentrating and imagining every word and scene and detail. It's as if skimming the paper makes it worse, but slowing down and really concentrating on one good article will over power the desire to move. Before long, I calm down, and can read the rest of it quietly. This takes great faith and determination. If I panic and don't believe it will work, it won't.
Watching TV....if it starts up, which it usually does....I used to panic and move around. Now, I say, "CONCENTRATE ON THE MOVIE!!!!!" I start watching the makeup on the actors, the movements, really listening to the conversation, guessing what will happen next. Before long, I realize my legs have relaxed.
Before going further....let me say, too...that it's VITAL that you don't let it go too far before trying this. You've got to start it the minute the RLS starts...otherwise...panic sets in. It's got to be a matter of "Oh wow...RLS...okay...let's concentrate!" And if you let it go too far, then the best thing is to get up and move, until it subsides a little, and then try concentrating, again.
In bed...I use earphones...play music with words..preferably fast and jazzy (sending impulses to my brain that are more jazzed than the useless impulses it's sending to my legs). It works best if I turn the volume low and make myself listen HARD to each word. Symphonic or relaxation music does NOT work. It's gotta be "busy" music. Note: I used this technique for the first two months...then...I started just thinking of something else. I haven't had to use the earphones for a month, and I haven't had the RLS keep me from falling asleep for that long. I've HAD RLS during this time...but I've still gotten to sleep.
I also have found a specific candle that is for aroma therapy. It says it's jasmine, but I've tried other jasmine candles and they don't work. This one has a VERY unique smell. Actually, I think it smells like plumerias...the flowers used to make leis in Hawaii. I can burn one, and after about 10 minutes of sitting by it...my legs not only settle down, but they feel GOOD! As if they've been massaged. I've even tried keeping a candle with me at a movie theater or in the car, and just smelling the wax (not burning). Something about it, quiets things down. Just inhaling the aroma, from the UNlit candle, or from a jar of the oil...and I feel my whole body relax. Maybe it's something from my childhood? I don't know...but it is sold as a therapy for anxiety. So, maybe there is something to it. I've also noticed that once I've sat by the candle for an evening, (often I light it by the computer...or by the couch while I"m watching TV or reading the paper)....after I've inhaled it for about a half hour....the calmness seems to last for days.
I've also cut way back on caffeine, at the insistence of another email group member. In January, when the pain started, we'd unintentionally started drinking fully caffinated coffee (for a couple weeks prior). Until then, we'd only had 50/50 blends. Since I cut back, it's been MUCH better. I still get the RLS sensations, but not the pain with it. It might VERY well have been aggravated by the caffeine. I used to pooh-pooh the suggestions of caffeine being a culprit for RLS, because I never saw the RLS escalate WHILE I was on the caffeine highs. But, I'm beginning to think it DOES escalate a few days later, and therefore, I never saw the correlation. Maybe, after excessive caffeine (like when I'm travelling and really overdoing the cokes and coffee in an effort to stay awake while I drive), maybe it slowly depletes your system of something important...like B vitamins???? Might explain it. So far, I haven't been willing to try the experiment...but one of these days I will. The experiment will be to overdose on caffeine, and then see if the RLS is more intense a few days later.
I've also finally found a way to use massage more successfully. It never worked before, but I think it wasn't being done right. My husband used to try light rubbing, Arghhh! Or using his finger tips or thumbs, Arghhhh more! But one night, I suggested I lie on my stomach and have him use the base of his hand and firmly press up and down my calves and thighs...as if it were a rolling pin, smashing the muscles flat. It feels soooooo good! Then, right when he's done, he builds up friction and heat...rubbing my legs really fast. That warmth goes soooo deep, and it stays with me, as I fall asleep. You just don't even want to move your legs...even though you are aware of slight RLS feelings. There is a definite correlation to the amount of pressure I can take, the knots he feels in my legs, and the intensity of the RLS that preceded the massage. When it's preventative...just a nightly ritual...my muscles are loose and relaxed and he can press hard. BUT, when I've already been in the throws of a major RLS attack, and am trying massage to relax it....he says he feels the knots, and I tend to keep yelling, "Lighten UP!!!!!" This must be where so many people find relief from stretching their legs. I still don't think it's caused by something muscular...but I'm more convinced by the day that the RLS affects the muscles and makes them VERY tense and knotted up.
I've also distracted myself with something as seemingly silly as slowly enjoying a sucker, while watching a movie. It's just another way of "yelling louder" or concentrating on something else. We were watching a good video one night, but I could NOT sit still...legs were really needing to move, driving me nuts. So, I got a sucker and really worked it over, while trying to watch the movie. Next think I knew, the sucker was gone, the movie was over, and I'd been sitting there watching it. Might not always work..but then, it might explain why I always have to have popcorn at a movie, even if I'm already full. It's a distraction, no?
I've also been on a vitamin/mineral/extra magnesium supplement. But honestly, I couldn't say it's making a difference. Twice, I've stopped the magnesium for a day, by mistake, and the RLS appeared. However, I'm not convinced this wasn't coincidental. I'm keeping with the therapy, until I feel pretty in control of things, then, I might experiment by stopping it and seeing if it gets out of control, again. I think my health and energy level is better, while taking the supplements, but the RLS is still occurring to some degree.
All of these things have helped control my RLS, so I wasn't staying awake all night. It hasn't stopped the RLS from starting, it just keeps me from aggravating it with panic, and it allows me to sleep. The most important thing to me, is to feel I'M in control and that I can keep it from taking over. I have to really believe in what I do, or it doesn't help. And, I have to catch it when it starts...either changing the scene, concentrating on something, or getting to sleep FAST!!!!
I've recently talked with someone here in my town, who has had RLS his whole life. While talking, he realized he's made it a point of always going to bed early. Sometimes, he leaves for bed when there are only a few minutes left to a great movie. His wife never understands. HE never really knew why he felt the urgency to get to sleep fast. While we talked, though, he said, "I think what I"m doing, is I'm just starting to feel the RLS kick in, so I get to sleep FAST!!!!" It's just a compensation behavior he picked up over the years, without realizing why he was doing it. He's a high school principal and NEEDS his rest. So...it's worked for him to basically AVOID the RLS attacks by out smarting them and going to sleep early.
None of this is magic. It probably can be defined as "cognitive therapy".....thinking and knowing more about what you are experiencing, and coming up with ways to change your reaction to that experience. I haven't heard anything in the email group about anyone trying psychological therapy for this. We are so afraid of someone saying, "It's in your head." I say, "Even if it doesn't START mentally, that's where I respond to it, so....I'll work on my response." I can't guarantee I'll never need meds. But for now, I know I'm doing better with it than I have in 40 years.