I no longer have RLS and all it took was ....

[mesolo]

Just wondering if anyone ever followed up on my suggestion of taking Cream of Wheat or C.O.W. as some of you lovingly call it??

Update: I've been taking it religiously since I first wrote about in December on these boards and my legs are no longer restless.

[ViewsAskew]

Not sure if you saw my response initially...it doesn't work for me. Then again, taking supplemental iron does not either.

Bottom line to me is that this is a continuum. Not all of us find any one thing works. So seems to me that:

First line of defense: dietary iron, exercise, minerals/vitamins, diet in general, and check for secondary RLS cause
Secondary if iron is low: supplemental iron plus above dietary and exercise changes
Finally: when those don't work or work enough and your RLS drives you crazy, medication

[Sojourner]

Eat it religiously also and doesn't do a thing for my rls but tastes good.

M.

[mesolo]

Mark, just curious about something. You say you take it religiously, how many times a day and how many tablespoons or teaspoons do you use? Also, what do you mix it with, water or milk?

[ViewsAskew]

For me, I use the standard 3 T in water. I don't like it in milk as much. I usually eat a bowl at night at bedtime - it's my late night snack. I go through spells, though, where I eat it every night for months, then stop and switch to a different cereal. I like it particularly in the winter.

I just finished my nightly bowl a few minutes ago. Of course, I love it best with butter on it...fortunately the spray butter works well for me so I don't get all those extra calories and fat just before bed.

[mesolo]

Ann, first of all, thanks for responding to my question, at least you're attempting to cure your own problem.

When you say 3 T do you mean teaspoons or tablespoons?

When I say religiously I mean once in the morning and once at night and add skim milk, butter and sugar. Yum! Not only am I getting my Iron but calcium too! Sometimes I skip the night serving for oatmeal instead, but I always take it in the morning. I think if I just took it at night it would wear off after a couple of hours. I need something to start my day off right. BTW, for the last couple of months I haven't skipped taking it everyday because I'm afraid the RLS will come back.

That's how I'm doing it.

[ViewsAskew]

Ann, first of all, thanks for responding to my question, at least you're attempting to cure your own problem.

When you say 3 T do you mean teaspoons or tablespoons?

A capital T stands for tablespoons in recipe speak, so indeed tablespoons,

Mesolo, I also take supplemental iron. So I get far, far more iron than you. It doesn't help my RLS. It hasn't ever.

I can only speak for myself; I can't know how you intended your statement above to sound, so I'll ask you. When you say, "at least you're attempting to cure your own problem," is that referring to anything?

[mesolo]

"at least you're attempting to cure your own problem"

I meant it to sound the way I said it, you understood it exactly.

The reason being, I see a good majority of people on this board content with just venting and not really doing anything about their problem. My RLS motivated me to do something and it worked and that's why I wanted to share it with everybody. I didn't have to go to the doctor, I didn't have to have my ferritin levels checked, I didn't have to take a pill and I wasn't
looking to vent either.

I thought by posting my "cure" on this board it would help some people looking for new new information. If I had stumbled upon this bit of information that someone else had posted I would've at least tried it before knocking it. When you're desperate you'll try anything! I may have been a little skeptical but at least I would've tried it.

However since posting this information all I've been reading are negative comments about why it doesn't work ???? Not based on something as simple as trying it but based on an uneducated opinion. I find that odd.

Also, another thing I don't get is why would anyone keep on going back and forth to a doctor and still not be cured? If it's not working why are you still going to a doctor? I allso suspect people aren't being as upfront about their diet and what they're really drinking.

Lastly, I notice whenever I ask a direct question about how much Iron someone is taking I almost never get an answer. That tells me something.

FYI, I'm taking anywhere from 19 mg. to 38 mg. a day.

[lorabell]

Hi All.
Last summer my Ferrintin level was 120 ! I was so excited1 My rls/plmd still gives me those nights, but not like it was 5 or 6 yrs ago.
When I overdo it, push myself to far, NOTHING will help. But if I pace myself, I am ok.
Thanks for all the welcomes, love to you all.
Lorabell
aka
wowobl

[mackjergens]

Mesolo,
You said..The reason being, I see a good majority of people on this board content with just venting and not really doing anything about their problem. My RLS motivated me to do something and it worked and that's why I wanted to share it with everybody. I didn't have to go to the doctor, I didn't have to have my ferritin levels checked, I didn't have to take a pill and I wasn't
looking to vent either.

I dont think you understand just how lucky you are that COW solved your problem.
I have had rls for all my life and it really came on strong in my late 20's, I am now 62 yrs old. Let me explain ONCE again to you, that when in my 20's NO DR knew what RLS was, it did NO good to go to a Dr, we all just had to deal with nightly creepy crawlies without any HELP. Living on 2-4 hrs of sleep each night. Now if you think that we all just sat around and didnt TRY to find things to help us sleep at night you are very wrong. We were all in constant pursuit of ANYTHING that would help us. I can almost assure you that we all played with our daily diets, trying to figure out what might help. Thru those times while constantly being aware of my health I discovered that taking cold meds (antihistimines) always made my RLS so much worse, so I stopped taking any OTC cold meds, I could go on and on about things I discovered during those years that increased my RLS.

For you to say that NONE of us taking meds have tried to solve our health problems with RLS is so very wrong. Do you not understand that if COW was actually the CURE for RLS, the RLS Foundation would have discovered that by now?????

Let me ask you a question, just how much RLS information have you actually read?? IF you have read even a little RLS info, you know that there are two different types of RLS. Primary and secondary. For many taking iron supplements do help their RLS, so perhaps eating COW might help them, but for those of us with Primary RLS, its very doubtful eating anything is going to help us, because we have an Nuero problem, I will not go into details here, will let you do the research on Primary RLS and they maybe you will understand why so many of us HAVE to take meds to control our rls, simply put our brain does NOT work normally. Research that and then tell me that eating COW is going to CURE our RLS!

AT present according to the RLS foundation and John Hopkins research program there is NO CURE for RLS. Do you honestly expect us to take your word that you have found the cure for RLS, when those doing the actual research on RLS have NOT found a cure????

What I would love for you to do,is to take the time and trust me it will take alot of time to research RLS to read all the RLS foundation information and all the recent brain research that is being done on brains of people who had RLS, I think if you do that you will then understand WHY when some one comes in and post they have found a CURE for RLS, most of us tend to KNOW that is not factual. Yes maybe you have cured what was affecting you by eating COW. But how many on this board have told you they have tried the CoW and taking Iron supplements with NO help to their RLS. Trust me many of us have tried the iron supplements YEARS ago, only to find NO relief in our RLS.
Now if you read all the research you will find there are those who have secondary rls and have had Iron transfusions and found great relief for their rls, but even that was not a CURE. as the iron falls in body, the rls comes back.

I find it very offensive for you to say to those of us that take meds, that we are not being responsible for our own bodies. First you have NO idea what we have been thru because of this disease. You have NO idea how long we have suffered NOR do you kNOW what we have tried before turning to meds.

Do you think suffering 30 yrs nightly with RLS is enough time before turning to a Dr??????????? There are folks on this board that have suffered for 50 yrs before finding a med to help them. YOu want them to quit those meds and try COW??????????? PLEASEEEEEEEEEEEEEEEE
I can assure you I will not quit my meds to try something I KNOW will not help my Primary RLS.

You are welcome to post what helps your rls and to inform others of what you have found to be helpful to you, if others wish to try your COW thats great too. But you really should not say to these folks who have suffered all their lives that taking meds is wrong.

Again, IF COW was a cure for ALL folks with RLS, then I do believe that the RLS Foundation and John Hopkins research would have discovered this by now!!!!

Having said all that, I think anyone who wishes to try COW for their RLS certainly should do so. And I hope those who try it will report back if it helped their RLS. But please do NOT judge those of us who have suffered all our lives and tried many many things including iron , because we now take meds, I can once again assure you it was NOT our first choice!!

Sorry for the long post, but your post really upsets us long time RLSers because only we know how many YEARS of Hell we have lived thru due to RLS!!

[cmoore1958]

AMEN, Mackjergens. Ditto on everything you said! Your post was not too long, just long enough to say was was absolutely necessary and needed. Thank you very much for taking the time to articulate our circumstances and history.

Cyndi

[lorabell]

Hi All.
My daughter, 37 this April, loves COW and it doesn't help her rls. Ours is in the family, an it is miserable knowing we are passing this darn thing down to our kids and grandkids.
For us with primary rls, it is a ( BRAIN ) thing, not a brain thing. It is neurological and nothing is going to cure it till the foundation, John Hopkins, We Move, or any other qualiied hos. finds the reason for it.
We know the ferrintin levels have to be at least 50, more if you can get it that high.
I take 65 mgs of Iron, but I go off it for a while so as not to get so constipated I am miserable from that as well.
One thing we always tell newbies in the chat room is, " WHAT WORKS FOR ONE WON'T ALWAYS WORK FOR ANOTHER.
Some of us can have caffeine, some not. For whatever reason, I can drink Coke , but Pepsi will get me up and moving in a heartbeat.
I can have a glass of wine with dinner, but give me a wine cooler and I am off to the races.
Some of us can't have icecream, and I recently found out I CANNOT HAVE FRENCH VANILLA ICECREAM, maybe too much vanilla? I don't know. But something kept me up and the only thing I had diff. that day was French V. icecream.
Sharring here is what it's all about. If COW works for you, that is awesome! I wish it would do that for Missy. she is trying to go without meds as long as she can, but her rls gets worse each year and now she is starting to kick.
Only those who have battled rls/plmd for al long as we have knows the suffering we go thru.
As for Dr's, I have not only fired a few in my life, one threw me out of his office when I told him he wasn't helping and that since I had started seeing him, my symptoms had worsened. LOL

So, be happy when you find something that works for you. But be careful, rls may take a vacation, but it ALWAYS comes home.
Hugs,
Lorabell
aka
wowobl

[Sojourner]

Lots of water underneath the bridge but I was asked so I'll answer.

About 5 to 6 times per week (on average) for breakfast, 1/4 cup, with skim milk.

M.

[ViewsAskew]

I thought by posting my "cure" on this board it would help some people looking for new new information. If I had stumbled upon this bit of information that someone else had posted I would've at least tried it before knocking it. When you're desperate you'll try anything! I may have been a little skeptical but at least I would've tried it.

Is it possible that some people already know it won't help? For example, anyone who's already taken supplemental iron and had it not help will know that eating any food item with lots of iron won't help. I don't know. But, I'd give them the benefit of the doubt.

"However since posting this information all I've been reading are negative comments about why it doesn't work ???? Not based on something as simple as trying it but based on an uneducated opinion. I find that odd.

I haven't read them from that perspective; I do know the three of us have tried it and it hasn't worked...not uneducated opinion.

"Also, another thing I don't get is why would anyone keep on going back and forth to a doctor and still not be cured? If it's not working why are you still going to a doctor? I allso suspect people aren't being as upfront about their diet and what they're really drinking.

As Mack said, there isn't a cure. Diet and drinking only help a small portion. There isn't a dietary trick I haven't tried. I don't smoke and for years didn't drink because it did worsen it. I still have RLS.

"Lastly, I notice whenever I ask a direct question about how much Iron someone is taking I almost never get an answer. That tells me something.

I don't know who you've asked. At this time, I take 100% of the iron RDA in liquid form in addition to dietary iron as I found that taking over 1000% of the RDA (65 mg elemental iron, 3 X a day for about 8 months) didn't help my RLS at all.

[lorabell]

I went back and reread the post about the Cow cure , and it made me remember something my sister told me a while back.
My dad, who was 57 when I was born, paced the floor nightly for as far back as she could remember.
When I went to a family reunion some yrs ago, I took my rls stuff with me and gave a presentation. This is when I found out all of my family has rls to some degree.
One thing I recall as a kid was dad trying to get me to eat Cream of wheat. Didn't like it them , won't eat it now. Point is, dad LOVED that stuff and ate it several times a week.
Imagine trying to be a dad of 6 kids,( 12 including his first set) and living with rls. Imagine being a farmer, walking most of the night, and then trying to work the farm all day!
Now, dad could not have known he would pass his walking nights to his kids, and grandkids, and great grandkids.
But he did, and I am sure had he lived long enough to know his legs had a name, and that he would pass it down, he would have been sick to the thought. , As I am knowing I am passing it down.
So, please, eat your Cream of Wheat, and if it works for you, good deal, but for the rest of us, please don't insult our intelligence by assuming we haven't tried anything but drugs to CURE our rls.
You know the old saying about the word ( Assume ).
Sweet dreams,
Lorabell
aka wowobl