RLS not what it seems

[ibM0VING]

Well when all this crapola came out, I knew that's exactly what it was. I've had problems with my legs having a funny feeling when I laid down to sleep. It was to the point where I would get really bad twitching in my calves. It felt like the only thing that would fix it was to go and run as fast as I could as far as I could.
I started changing my diet due to weight management issues, and noticed my leg problems disappear. I realized lots of carbs, sugars, etc with little or no exercise causes my legs to feel like I needed to twitch and move around after lying down at night. So what do I do? Stop eating crappy foods, get off my bottom, and move!
So basically I don't buy into all this crapola all these foundations are putting out. I'm sick of hearing it, actually, and decided I wanted to vent a little. I researched and investigated before any of this rubbish came out and found that it is normal if, in your diet, you have lots of energy foods, few iron foods, and don't expend any of this energy. Your legs are the largest muscles in your body, therefore it follows that they would be the area that most manifests this so called "syndrome."
Now there are some who have honest-to-goodness problems with their legs. However, going to sleep with some unreleased energy is not justification for a syndrome! So imagine that, eat right, exercise, and stop whining. Let the people with real leg problems have the syndrome label and get the help.

[ViewsAskew]

iBMOVING, thanks for sharing your opinion. I'm glad that works well for you and hope it continues to. I am always interested in research, so would love to see the research that you have found. Would you please post the links to the sites, the names of the books, or information on the research studies? It would help tremendously to round out the other medical links, study results, and other information we provide here.

For others who might not be so inclined to feel so kindly toward iBMOVING, please let it go as hard as that is. It is his/her opinion and probably meant to be a little daring and provocative - he/she did say this was venting. I am sure he/she already knows how many of the people here will feel, so won't feel slighted at all if it is not offered.

Ann

[sugar56]

hi all. I haven't posted in forever so I am trying to get back in the boat. But what I would like to know, without egging this ignorant friend of ours on, is what would you say to the unfortunate dears out there who have this all over their body, not just in their legs? HMMM?

Talk to you all soon

Love ya
sugs

[becat]

Hi ya Sugar, Ann, and Guest................
Sugar it's just wonderful to see your name and I'd love an update. As always my prayers and thoughts are with you. Wondered the other day how you were doing.........
Guest, as Ann said, your welcome to share your thoughts....but I too wonder what research you found that caused you to believe your theory?
I was most likely born with RLS, it's a genetic whammo in my family.....both of my parents have it. No one could have worked harder in one life time than my grandmother. She was a ball of energy and never hid it. In her 80's if she didn't like a wall in the house, she'd knock it down and put it where she wanted it. We lost her this yr. at 88. She had horrible RLS for 65+ yrs. I doubt that she didn't try hard enough to work off energy.
Yeah, I'm a whole body RLSer as well........I walk 1 1/2 miles every night, not out of shape, and eat well. Mine is genetic and I couldn't have wished, nor walked it away if I wanted to.
I hope you come back and chat with us. We don't mind at all, but lets do it nicer, cause we see this as an educational thing..........not a fight. This board is for everyone, your sharing with us is important. We often learn tons from discussions like these. It's not uncommon for any of us to hear just what you've said......all the time.

[sardsy75]

All i can say is .... YEESH ... from that post I can't even tell if ibM is actually telling us that they have RLS or not?!

Now my brain fog may get in the way here a lil, but as far as I remember, RLS is a neurological disorder of the motor sensory system ... which is connected to the central nervous system in the brain ... and don't muscles need "instructions" from said central nervous system to "get it right?". If said "instructions" aren't getting through to muscles properly or in the right order therein lies a "small" problem ...

[jrowley]

You girls couldn't have said it any better. I'm with you becat on the all over thing and I like you walk every night and eat a balanced diet however thanks to the good ole lord and family I'm stuck with this horrible thing of jerking. And yes sardsy your absolutely right however that theroy applies to only those of us that have the primary (family) condition now with the secondary condition yes imb would be right that diet exercise ect.. or medications, or another medical issue could be the problem. imb found what was causing her/his secondary condtition and Im glad it worked for her/him. But the rest of us with a primary conditon are struggling everyday to find the right techneqe or med to help us. Hopefully some day there will be a find. But like Becat has mentioned we should be a bit more nicer with our opnions.

Jan

[Kris]

I've had mine all my life - even when I was a size 5 karate instructor working 2 nights a week, competing on the weekends, and working out every day.

I am positive that I inherited my RLS and that it was made worse by my ankle injury. (So I don't know if that would be secondary and primary or both!)

Anyway, glad whatever you did worked for you, just don't get alcoholic syndrome - "I quit drinking and the world owes me something. All those other drunks are just morally weak and inferior to me."

To be honest, you sound a bit like that. Glad you are better though.

You just can't always say this worked for me so it has to work for you. My son is 9 and in great shape, and he has this problem too. He can hardly sleep at night. He eats a very healthy diet and is very active.

I talked to my doctor today, and he said there is such a wide variance with RLS that it is sometimes hard to pin down. He said he suspects that they will find some pain inhibitory malfunction one day in the brain stem. He also said that in his experience, patients with more than one pain problem pathway often have the severe RLS - as if some peripheal stimulation already present - like my tarsal tunnel syndrome and other left foot problems - causes it to go into overdrive.

That said, I do think that some dietary factos do make this much worse - like nurtrasweet!

I can offer my experience, but I KNOW that my RLS is not typical. I'm certainly not going to tell someone else that they are silly for putting soap under their mattress. Shoot, even though it didn't work for me - I I tried it with several different kinds! Someone said eat more tomatoes - now I eat brochetta every night. I love it - but its not made a difference with the RLS.

The Mirapex has worked great though.

[GaAudrey]

Dear ibMOVING - I can't help but wonder what brought you to this message board since you don't have RLS? It almost sounds like you're tired of listening to someone (friend or family member) complaining about their RLS. Glad we could be a place for you to vent, but I have to say you are so off base with your assumptions. I too would like to see the research you're talking about. Hope you come back and include it in your next post. I've had RLS for over 10 years and have only become unhealthy and inactive the last 2 years. I'm sure I'm not alone when I say we here at rls.org only wish it would be so simple to get rid of our symptoms. But thanks for your two cents worth anyway.

Audrey

[TxSongBird]

Dear Guest ( I use that term lightly) I am glad that you found that carbs and suger and being lazy was what was causing your leg problems. but I am a very active person, never seem to sit down except to sleep and I am not a lazy person. I doubt you have RLS are you would understand the issue here. I have had this disorder for most of my life and my late father and my brother who has MS also suffers from this. I would also love to see your research you stated in your post.

Donna

[dogeyed]

Dear ibMOVING,
I want your diet!! You say low carbs will do the trick. But I want to know in full what you ate that made your rls go away. PLEASE come back and try to recount for us what you ate and didn't eat that helped you.

I have read somewhere else about eating like a diabetic helps, so could it be since even children have rls, just like diabetes, that the two conditions are related? You see, ibMOVING, even though you obviously have anger issues, you must realize there are so many good people looking at rls, not just the posters here who need comfort, but also researchers from muscular dystrophy and Parkinson's, too, because they're all muscle disorders, so we would ALL like to know ANYTHING that may have a positive impact on this VERY serious illness. So, please, get back over here and tell us what was your diet! Thank you.

[ViewsAskew]

I just wrote a looooong post and lost it! Well, maybe that was good. I'll try to keep this one shorter.

Food sensitivities may be a trigger for many problems that we all have. The problem is that all of us are sensitive to different things, so you have to find out what bothers you. Dogeyed, I don't personally think that following anyone else's diet it the best idea. Finding out what bothers you may be much more effective. Does that make sense? Just because something bothers one person, doesn't mean it bothers another. If you tried IB's diet, it might not work and you'd say it wasn't food. But it could be food, just not the same as what bothers IB.

One of our members, Jamie, found she was hypoglycemic and has successfully eliminated most of her RLS. Here is some of what she wrote about it in a post:

http://www.restlesslegs.org/phpBB2/viewtopic.php?t=988

You could try this. You could also eliminate the 'Deadly Seven" as Dr Elston Haas calls them. Sugar, wheat, peanuts, corn, soy, dairy, eggs. It is hard to do, because you have to cook everything fresh, can't use many prepared, packaged, canned, convenience, or restaurant food. But it can identify your individual triggers to many different health problems, including headaches, intestinal problems, arthritis, etc. Just eat lots of freshly and simply prepared fruits, veggies, and meats. No desserts, snacky stuff, caffeine, alcohol, etc.

If you do this for a couple of weeks, you should feel a lot better. Then you can add in each item one at a time, every three days. Each time you add it, you'll know if you get sick from it. If you don't get sick eating it once, then wait a day and eat it again. If you still don't get sick, then it doesn't bother you. Simple. If it does bother you, eliminate it from your diet.

You can search online and find many resources to help with this kind of elimination diet. I loved Dr Haas book. My whole family has done it and every one of us found at least one thing and some of us found up to three. My mom hasn't has a sinus infection since she did it 5 years ago and she used to have several every year. We all know that if we keep those things out of our diets, we are much better. Any time I 'cheat' with corn, I pay the price and am sick for 2 weeks with intense gastro symptoms.

If your RLS is food related, this will help you find out. Even if it doesn't help the RLS, chances are high that it will help you feel better in some way or eliminate something. There are more restrictive diets you can try, but most people have success with this, at least according to Dr Haas.

Ann
Oh, well, it is just as long as the first one!

[dogeyed]

Dear Viewsaskew,
While I appreciate your feedback, I disagree with your comment, "I don't personally think that following anyone else's diet it the best idea." No one knows what the best idea is for anyone. And eliminating a few carbs is not going to kill me. I think it's logical to ask someone who had rls, and now does not, what their diet was, when they say that's what cured them.

I mean, diabetics have to eat a certain way; why not rls sufferers? As for avoiding the seven items you suggest, that would pretty much starve me to death, as I am a vegetarian and rely on nuts and eggs to get my protein. And I was a vegie years before rls.

I have a legal acquaintance who said they're hearing more and more about rls. Isn't it possible, with worldwide trade and folks eating junk food, that we're regularly ingesting a common trigger? For all we know, they've giving cows something that is screwing us up. I mean, I don't care WHY I have this rls, I just want it to STOP. Hasn't the "survey" that's on here been fed it into a computer yet, looking for commonalities?

Please, ibMoving, come back and tell us what you ate!

[dogeyed]

Dear Sugar,
Wanted to add that I have had my whole body jerk with such force that I almost fell out of my chair. My arms shake sometimes too. But primarily my rls began in my right foot and worked its way up one leg, and then the other, and now includes my rear end too. The whole-body shake comes in a big wrench, just a one-time movement. I've had that happen a few times. My arms shake with a wide, rhythmic swaying on numerous occasions. But the leg stuff is what hurts and bothers me continuously. Medication keeps it under control.

Mine began after an accident to my foot. At first I thought it came from a mosquito attack a few years before that, but finally I settled on the injury. However, while people have accidents, or get the disorder at an early age, or it exists in their family, it is also possible that some other outside influence causes this. No one knows. I hear on this forum how rls people have type one, inherited, and type two, acquired. Isn't this more just a way to organize a wide-ranging symptomatic disorder? For no one has scientifically determined what is going on and medicating is a guessing game. You know, in medical books going back fairly far, they say 10 percent of us have it and no one knows why. End of story. I'll bet if 10 percent of the population died of it, they wouldn't brush it off as simply common.

The reason doctors and researchers don't take it seriously is because we look normal, we can walk around fairly normally, we talk normally. But inside, we are complete wrecks. Imagine, whole-body rls! When my whole body jerked like my legs do, I knew right then and there that pretty soon I was going to have it all over, all the time. I feared Parkinson's, it's in my family, but I didn't have the fine-hand tremor. My neuro didn't say it was Parkinson's either; just rls.

I put all this out here because I am annoyed when I read experts here saying, "Oh, no, you have the type two kind," or the heartless ibMoving who won't tell us what he ate that made him well. I mean, if I were a new researcher, I would put some work into this, because maybe we could catch it before it becomes what it is already becoming: an epidemic, or worse yet, an uncurable disease like diabetes or MD. I am terrified of my rls, for I can't breathe sometimes, I can't rest well, I can't work, and I am losing everything we have, our money, our job, and soon our home. I begged the government for disability, and, hey, this rls disorder ain't even on their radar. I appreciate people in the forum taking the leadership role and guiding us, but sharing is what I really need.

What was that book someone was talking about, "Sleep Thief, Life Thief"? Is that in stores where I can buy it? I want to mail a copy to the social security admin. Thank you. I'm sorry for all my rants. I just lost my job (again) last week. It is just so hard to keep going.

[trevb]

hi dogeyed,
sounds like youre having a hell of a time!

I dont know what to say but i thought id write as i think that ibmoving was basically saying that he removed fatty,sugary foods from his diet. I think he was talking about having lots of energy from eating too many calories and then not burning it off. QUOTE "I realized lots of carbs, sugars, etc with little or no exercise causes my legs to feel like I needed to twitch and move around after lying down at night. So what do I do? Stop eating crappy foods, get off my bottom, and move!"
i dont think he was sticking to a particular thing, just watching what he eats calorie wise and exercising more.... i may be wrong though...
if you need to know what foods are high in sugar and carbs let us know though.

the thing with this rls, is that everyone seems to have a different response to diferent things, so what works with one doesnt with another. i think thats why viewsaskew was saying to go with your own body. annes suggestion re eliminating foods and then building up again is a good one and will help you to find out if it is food thats causing it or something else.

i know for me foods deont seem to make any difference to me.
anyway hope that helps but if it doesnt ignore it.
warm regards to you and anything any of us can do to help let us know.

[ViewsAskew]

Dogeyed, I hope things get better for you, and soon. What a difficult place you are in right now.

I don't know where you live. Johns Hopkins is carrying out the most extensive studies in the US. They have at least 8-10 studies going on at any point in time. They seem to truly want to find out what is happening and what is causing this. Some people who have had the iron infusions through their studies have absolutely no RLS any more.

Sleep Thief is written by Virginia Wilson. If you are in the US, you can order it from any local book store or order it online. I got mine from my local public library, but I am in a big city. There are other books out there on RLS, too, but I have not read them. You can find them at Amazon if you type in RLS.

As they say in 12 step meetings, take what you need and leave the rest. I am only posting what I hope may be helpful. It may not be helpful to you. As always, it is only my personal opinion and not intended as anything else but.

Ann