Just my 2 cents worth, and this is only my point of view, but I reckon that by the time most people have found this forum they have tried just about everything there is that is non pharm. I know that I did, and absolutely nothing made any difference...... I had suffered for 30 years before resorting to drugs. So I don't like anyone inferring otherwise! I was at the end of my tether when I came to this forum and the people on it have answered so many questions for me, have helped me so much.
It was this board that advised me to have my ferritin levels checked, which my doc did at my behest and the information to do so having come from this site, and my levels are ok. I have been to a neurologist who confirms that I have very severe rls. I have had tests done for circulation, the legs in particular, all ok. I have gone privately to alternative therapies and consulted with regard to possible food allergies and deficiencies. I was actually told to stay away from wheat.... this made no difference to my rls symptoms.
My primary doc relies on the information that I bring to him cos he is no rls expert and tells me this himself. My information is gleaned from this forum and the wonderful supporting members.
Perhaps there are those who look at this forum and read the posts and wonder why we 'depend on medications'. Perhaps these same people with rls do not have it as severely as others. If anyone has rls as severely as some of the members of this site they would not so readily condemn the use of meds/drugs. If someone has early evening symptoms of rls which they can deal with and then they can sleep at night.... then great/brilliant and I envy that person greatly. This however is very far removed from perhaps the next rls sufferer who is 24/7 and whose body is literally screaming inside for relief, getting no sleep night after night, and also having to do a day's work also.
Remember the saying.... walk a mile in someone else's shoes'
My lifestyle was at times unbearable with rls. I had tried all of the iron supplements, magnesium etc. etc. blah. blah. blah.... I could go on and on!! It is great if someone can give a non pharm method a try, maybe for several weeks or months... I could do this no longer. I would not have been able to continue work. The meds have improved my life beyond belief.
I apologise in advance if I have misunderstood this thread anywhere, and also if I have offended anyone here, but I feel quite angry at the moment... I feel that our efforts to find relief and in particular those of us who have had to take meds, are being looked upon as tho we do not have the determination to seek the alternative/dietary solution.
Someone rap my knuckles if they feel I deserve it.
Betty
do u find some releaf from rls when eating ?
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SquirmingSusan
- Posts: 3028
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- Location: Minnesota
- Contact:
Thank you Betty. That was very well said and there's no knuckle rapping necessary.
I think some people just get too overly enthusiastic when something works for them, and then figures that it should work for everyone else. And when it doesn't, or people don't want to try it, they feel hurt or ignored. But this disease is very complex and what works for one often doesn't work for anyone else.
Problem is, IMO, that people lose sight of the big picture. RLS is a very complex and serious condition. And we all have a right to deal with it the way we choose. At some point the misery level is just so high that we throw ourselves at the mercy of modern medicine. And we don't deserve to be judged harshly for using medication.
I think this board is terrific for pointing people to all the options for treatment. One thing that most of us tell newcomers is to look up the Mayo Clinic Algorithm, (which covers the ferritin thing, as well as medications that aggravate RLS). Then we usually encourage people to get their ferritin checked, and we usually also point out meds that make it worse.
I guess what I'm saying here is that we all make the choices that work the best for us. And each of us deserves respect for making those choices and coping with this condition in the best way we know. Please, people, don't think that we are ignorant or uninformed if make different choices than you do.
This message board has a section for non pharmaceutical treatments. It has a section for pharmaceutical treatments. Most people read both. Most of us use tips from both sections, I know that I do. I know that I am one of the people who is sensitive to ferritin levels, and I'm doing everything I can to raise them. Heck, I'm having surgery in just over a week to stop the heavy blood loss every month. I've had multiple iron infusions. I'm even eating a bowl of Total every day now. But it could take years for my levels to come up, and then it might not totally help my RLS. Meantime, I'll take my little piece of Mirapex, my methadone, my Lunesta and whatever else it takes to have a life.
Please, everyone, put the egos aside and respect each other's pain and the choices we make to live with it.
I think some people just get too overly enthusiastic when something works for them, and then figures that it should work for everyone else. And when it doesn't, or people don't want to try it, they feel hurt or ignored. But this disease is very complex and what works for one often doesn't work for anyone else.
Problem is, IMO, that people lose sight of the big picture. RLS is a very complex and serious condition. And we all have a right to deal with it the way we choose. At some point the misery level is just so high that we throw ourselves at the mercy of modern medicine. And we don't deserve to be judged harshly for using medication.
I think this board is terrific for pointing people to all the options for treatment. One thing that most of us tell newcomers is to look up the Mayo Clinic Algorithm, (which covers the ferritin thing, as well as medications that aggravate RLS). Then we usually encourage people to get their ferritin checked, and we usually also point out meds that make it worse.
I guess what I'm saying here is that we all make the choices that work the best for us. And each of us deserves respect for making those choices and coping with this condition in the best way we know. Please, people, don't think that we are ignorant or uninformed if make different choices than you do.
This message board has a section for non pharmaceutical treatments. It has a section for pharmaceutical treatments. Most people read both. Most of us use tips from both sections, I know that I do. I know that I am one of the people who is sensitive to ferritin levels, and I'm doing everything I can to raise them. Heck, I'm having surgery in just over a week to stop the heavy blood loss every month. I've had multiple iron infusions. I'm even eating a bowl of Total every day now. But it could take years for my levels to come up, and then it might not totally help my RLS. Meantime, I'll take my little piece of Mirapex, my methadone, my Lunesta and whatever else it takes to have a life.
Please, everyone, put the egos aside and respect each other's pain and the choices we make to live with it.
Susan
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
Mesolo,
When I saw your post about eating COW just a couple of times and it curing your RLS, I was shocked!
Like Betty I have had rls all my life and for over 30 yrs I walked the floor nightly living on 2-4 hrs of sleep, as hard as it was I continued living life as best I could, I was the one who discovered that taking antihistimines made my rls worse, when I talked to my Dr, he simply had NO answers, as he didn't know what RLS was. I was the one who discovered that eating ice cream made my rls more intense. When you have had rls most all your life and EVERY night you tend to learn to evaluate every thing in your life, including your diet. It would take me HOURS to tell you all the things I tried over the years, from changing my diet to crying, screaming, beating my legs, to walking the floor ALL night long. You have NO idea how many of us RLSer's have had to simply WALK all night long, unable to even sit down for afew minutes without our RLS driving us right out of our minds.
My family has found me asleep on the floor, on the couch, in a chair, just where ever I was when the rls finally stopped which was around 5-6 am each morning I would fall asleep. Try explaining to your family why you have to get up during a trip to the theater to stand at the back to finish watching a movie!
Back then there was NO medicine given because Dr's thought you were nuts, honestly! I would give anything to be able to go back and read my medical records to see what Drs wrote when I told them about my legs. BUT NO MEDS were given! I simply suffered thru over 30 yrs of nightly RLS.
SO when you see so many of us RLSer's taking meds, KNOW that we are doing so as a last resort!! Because we have tried just about anything you could ever recommend us to try.
I am certainly NOT saying that COW didnt solve your problem and I am very excited and happy for you that it has, but from what I have read it usually take quite some time to build the iron up enough to change or help RLS, and that is why I was shocked when you said you simply ate a couple bowls of COW! If I had not already tried the IRON over the years I would certainly be willing to get some COW and skip my meds to see if it would help, but I know that since taking iron tablets for months didnt have any affect on my rls, I feel certain that eating COW is not going to help my rls. I am NOT saying it can not and will not help others, and I think anyone who wishes to try it should certainly do so. What a blessing that would be if eating a bowl COW would cure my RLS.
Are you aware there are two different types of RLS? Primary RLS is inherited and runs strongly in familes, such as mine, mother and grandmother had it and now my great niece has it. Secondary RLS is due to medical problems such as kidney diaylisis, back surgery, etc.
From the newest research of primary RLS they have now discovered the gene that causes rls and from brain donations from RLSers upon their death, they have found that RLS is caused due to a malfuction in our brains transfer iron. So as you can see there are many different reason that RLS occurs !
Please do not be offended by this post, as it was never meant to offend, only meant to be informative, just as your COW post was. I hope that everyone who has not tried iron will try the COW, who knows who it might help. There is an old wise tale that goes thru the rls messages board every one in while and that is " Put a bar of soap under the covers by your feet at night and it will stop the rls" As silly as that sounds, trust me I TRIED even that years ago.
If you will go to www.rlshelp.org and read the entire site, you will find a very long list of things non pharm to try for helping rls, I would bet my last dime that those of us long time RLSer's have at one time tried it all. Simply because back then you were given NO MEDS! Only looks from the Dr like you were nuts.
So Please do not ever say that we long term suffers seem only to push the meds for rls. We take the meds because we have ALREADY tried every thing there is to try for our RLS!
I think if you will go back and re read most all the post to those who come here seeking RLS info, one of the very first things that most of us state is EDUCATE yourself about RLS, read all the info available, know the OTC meds and foods that can make your rls worse. We do this because MOST all Drs still know very very little about rls.
As I stated I only have RLS at night, every night, but mostly only nights, every once in while I will have daytime RLS, I just know that dealing with RLS every night of my life for well over 35 yrs is more than enough for me, and I welcome being able to take a pain pill and enjoy my evening with my family and being able to sleep.
My heart really goes out to those that have to live with this disease 24-7 /365 days a year, I honestly do not understand how they handle it, and I am not sure I could do so. I remember a very young girl who use to come to a message board yrs ago she was in college and had RLS so bad she had to get permission from her Prof's to stand at the back of the room to attend her classes, as she could NOT sit down and be still.
PLEASE do not judge those that take meds, for you have not walked as they have for as many years with their RLS!
Again congrats that COW has stopped your rls, I have no idea if you have mild rls or what, but I tend to think yours could not compare to some on this message board, and its very unfair to judge others, who suffer so much from this.
RLS is a movement disorder caused by a Nuero problem. If you go to www.wemove.org and ck out the left side of their home page you will see MANY movement disorders.
As we always recommend to others READ and EDUCATE yourself to all the ins/outs pros/cons of RLS. I think once you do that you will began to understand why meds are a welcome relief to so many of us long time RLSers!!
Again NO offense intended with this post!
When I saw your post about eating COW just a couple of times and it curing your RLS, I was shocked!
Like Betty I have had rls all my life and for over 30 yrs I walked the floor nightly living on 2-4 hrs of sleep, as hard as it was I continued living life as best I could, I was the one who discovered that taking antihistimines made my rls worse, when I talked to my Dr, he simply had NO answers, as he didn't know what RLS was. I was the one who discovered that eating ice cream made my rls more intense. When you have had rls most all your life and EVERY night you tend to learn to evaluate every thing in your life, including your diet. It would take me HOURS to tell you all the things I tried over the years, from changing my diet to crying, screaming, beating my legs, to walking the floor ALL night long. You have NO idea how many of us RLSer's have had to simply WALK all night long, unable to even sit down for afew minutes without our RLS driving us right out of our minds.
My family has found me asleep on the floor, on the couch, in a chair, just where ever I was when the rls finally stopped which was around 5-6 am each morning I would fall asleep. Try explaining to your family why you have to get up during a trip to the theater to stand at the back to finish watching a movie!
Back then there was NO medicine given because Dr's thought you were nuts, honestly! I would give anything to be able to go back and read my medical records to see what Drs wrote when I told them about my legs. BUT NO MEDS were given! I simply suffered thru over 30 yrs of nightly RLS.
SO when you see so many of us RLSer's taking meds, KNOW that we are doing so as a last resort!! Because we have tried just about anything you could ever recommend us to try.
I am certainly NOT saying that COW didnt solve your problem and I am very excited and happy for you that it has, but from what I have read it usually take quite some time to build the iron up enough to change or help RLS, and that is why I was shocked when you said you simply ate a couple bowls of COW! If I had not already tried the IRON over the years I would certainly be willing to get some COW and skip my meds to see if it would help, but I know that since taking iron tablets for months didnt have any affect on my rls, I feel certain that eating COW is not going to help my rls. I am NOT saying it can not and will not help others, and I think anyone who wishes to try it should certainly do so. What a blessing that would be if eating a bowl COW would cure my RLS.
Are you aware there are two different types of RLS? Primary RLS is inherited and runs strongly in familes, such as mine, mother and grandmother had it and now my great niece has it. Secondary RLS is due to medical problems such as kidney diaylisis, back surgery, etc.
From the newest research of primary RLS they have now discovered the gene that causes rls and from brain donations from RLSers upon their death, they have found that RLS is caused due to a malfuction in our brains transfer iron. So as you can see there are many different reason that RLS occurs !
Please do not be offended by this post, as it was never meant to offend, only meant to be informative, just as your COW post was. I hope that everyone who has not tried iron will try the COW, who knows who it might help. There is an old wise tale that goes thru the rls messages board every one in while and that is " Put a bar of soap under the covers by your feet at night and it will stop the rls" As silly as that sounds, trust me I TRIED even that years ago.
If you will go to www.rlshelp.org and read the entire site, you will find a very long list of things non pharm to try for helping rls, I would bet my last dime that those of us long time RLSer's have at one time tried it all. Simply because back then you were given NO MEDS! Only looks from the Dr like you were nuts.
So Please do not ever say that we long term suffers seem only to push the meds for rls. We take the meds because we have ALREADY tried every thing there is to try for our RLS!
I think if you will go back and re read most all the post to those who come here seeking RLS info, one of the very first things that most of us state is EDUCATE yourself about RLS, read all the info available, know the OTC meds and foods that can make your rls worse. We do this because MOST all Drs still know very very little about rls.
As I stated I only have RLS at night, every night, but mostly only nights, every once in while I will have daytime RLS, I just know that dealing with RLS every night of my life for well over 35 yrs is more than enough for me, and I welcome being able to take a pain pill and enjoy my evening with my family and being able to sleep.
My heart really goes out to those that have to live with this disease 24-7 /365 days a year, I honestly do not understand how they handle it, and I am not sure I could do so. I remember a very young girl who use to come to a message board yrs ago she was in college and had RLS so bad she had to get permission from her Prof's to stand at the back of the room to attend her classes, as she could NOT sit down and be still.
PLEASE do not judge those that take meds, for you have not walked as they have for as many years with their RLS!
Again congrats that COW has stopped your rls, I have no idea if you have mild rls or what, but I tend to think yours could not compare to some on this message board, and its very unfair to judge others, who suffer so much from this.
RLS is a movement disorder caused by a Nuero problem. If you go to www.wemove.org and ck out the left side of their home page you will see MANY movement disorders.
As we always recommend to others READ and EDUCATE yourself to all the ins/outs pros/cons of RLS. I think once you do that you will began to understand why meds are a welcome relief to so many of us long time RLSers!!
Again NO offense intended with this post!
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Polar Bear
- Moderator
- Posts: 8815
- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
Betty, Susan and Mackjergens what an excellent post. Thank you for posting this. Believe me I wish that I did not have to take meds; however if this will keep by rls under control then I will do whatever it takes.
It is so true that until they walk in your shoes they have no idea what a person is going through and also what works for one may not work for someone else. That is why alot of us have to try a cocktail of meds to see which one will work for us.
Also I feel funny asking this question, but what is COW?
It is so true that until they walk in your shoes they have no idea what a person is going through and also what works for one may not work for someone else. That is why alot of us have to try a cocktail of meds to see which one will work for us.
Also I feel funny asking this question, but what is COW?
Charlene
Taking one day at a time
Taking one day at a time
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ViewsAskew
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
mesolo wrote:Ann,
"Bettie, Mirapex and I didn't get along well, and crying was part of it. Please consider reading some of the posts to the newcomers and try some of the links to information about other drugs you can try, etc. It isn't the only drug to try and I think it's better to get off of it if it is causing problems"
This is what I mean....encouraging people to depend on drugs. These are your own words. You're just continuing the cycle!
Yep, my own words. Maybe I'm rationalizing my post...but here goes. That post was to someone who was having difficulty already on a drug. I guess I figured in that case this woman already was taking drugs and needed them. Maybe she didn't. I didn't think it my place to ask her or question it - she was in pain and suffering. I could offer that I, too, has similar experience to her and that a different drug might be needed instead, given that she needed drugs.
I appreciate your perspective and thank you for giving it to me when I asked.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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SquirmingSusan
- Posts: 3028
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I just want to add that I am thrilled that COW seems to be working for you mesolo. Over the last year of trying many non-pharma things I too have had weeks at a time with no RLS. Each time I'd think "maybe I'm cured", but I have primary RLS, it runs in my family and it will probably increase over time as it has for others in my family.
I have to eat right, exercise right, and take my vitamins every day and even then I still have RLS on a monthly basis. Sometimes I have to resort to meds, and if it gets worse I may have to resort to more serious meds. I am grateful for how much I have learned from this site about the drugs used to treat RLS and their side effects, this will help me make informed decisions if/when my RLS becomes more serious.
I have to eat right, exercise right, and take my vitamins every day and even then I still have RLS on a monthly basis. Sometimes I have to resort to meds, and if it gets worse I may have to resort to more serious meds. I am grateful for how much I have learned from this site about the drugs used to treat RLS and their side effects, this will help me make informed decisions if/when my RLS becomes more serious.
Hi 
Please can someone help me find "farina" in Scotland Ihave been told to change my diet to more iron rich foods.
I have looked but cant find it , might it come under a different name?
I'm not very knowledgeable about what foods are high in iron has anyone got any ideas,I would be most gratefull.
moonlight x
Please can someone help me find "farina" in Scotland Ihave been told to change my diet to more iron rich foods.
I have looked but cant find it , might it come under a different name?
I'm not very knowledgeable about what foods are high in iron has anyone got any ideas,I would be most gratefull.
moonlight x
sleep is not only a dream
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ViewsAskew
- Moderator
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Moonlight, it would be in the breakfast cereal aisle at your grocer's. It has the consistency of cornmeal, but is more gray in color, not yellow. It is made of wheat. The name brand in the US is Cream of Wheat. The common name is called farina in the US. It may be called some kind of porridge in the UK.
You do not have to specifically eat this, you need to simply find foods high in iron. Many other things are fortified or high. Go to your grocer's and look at labels. See what has high iron in the cereal aisle. Or do a web search for foods high in iron. Because you are in the UK, you will get different pages in your search than I will. They will help you find things that are more appropriate to your area.
Good luck!
You do not have to specifically eat this, you need to simply find foods high in iron. Many other things are fortified or high. Go to your grocer's and look at labels. See what has high iron in the cereal aisle. Or do a web search for foods high in iron. Because you are in the UK, you will get different pages in your search than I will. They will help you find things that are more appropriate to your area.
Good luck!
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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ViewsAskew
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Don't think so...this cereal, I forgot to say, is cooked like oatmeal, so it's a type of porridge. Gruel, maybe? Not sure.
Weetabix is more a cold cereal. I looked on their site and it the wheat flakes has 30% of iron in a serving. Cream of wheat has 50% per serving. It's a pain, but if you just read the back of boxes at the store, you'll get an idea of what's really high. if that is required to be listed in the UK as it is in the US. You want as high as possible as a percent of your daily allowance.
Weetabix is more a cold cereal. I looked on their site and it the wheat flakes has 30% of iron in a serving. Cream of wheat has 50% per serving. It's a pain, but if you just read the back of boxes at the store, you'll get an idea of what's really high. if that is required to be listed in the UK as it is in the US. You want as high as possible as a percent of your daily allowance.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
If I had to rate my pain on a scale of 1 - 10 (before COW) I would have given it a 10. I'm sure everyone reading this post can relate to the pain of RLS and how disruptive it is in daily life and even at night to the point of not being able to sleep. Even doing a simple thing like crossing your legs is unbearable.
Although my diet still isn't the healthiest (still eat refined sugar and candy) I now include COW as part of my daily diet. The only thing I do differently is use 3 Tbl. instead of 3 tsp. I'm wondering if adjusting the quantity made the difference, before when I use to take it I only used a few tsp. Hmm..I'm thinking I really should test out my theories and report back to the board.
For me at least eating a breakfast food is a lot easier to swallow (no pun intended) than taking pills/vitamins all the time.
If only food had more added nutrients we'd all be a lot better off!
Although my diet still isn't the healthiest (still eat refined sugar and candy) I now include COW as part of my daily diet. The only thing I do differently is use 3 Tbl. instead of 3 tsp. I'm wondering if adjusting the quantity made the difference, before when I use to take it I only used a few tsp. Hmm..I'm thinking I really should test out my theories and report back to the board.
For me at least eating a breakfast food is a lot easier to swallow (no pun intended) than taking pills/vitamins all the time.
If only food had more added nutrients we'd all be a lot better off!
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
I have NO pain with my rls, only the creepy crawly feeling that makes you get up and walk, so maybe that is why the COW (iron) has not worked for me. As long as I am up walking and doing things I normally do not feel anything. In all my years of having RLS I have never experienced pain with my RLS. I know that many have pain with their RLS.
Mesolo do you also have the creepy crawley can't be still feeling in your legs or just pain? If I don't get up and walk I honestly believe I would go nuts!!
I actually took iron tablets prescribed by my Dr for many months along with a Vit C tablet to help the body obsorb the iron, and it never touched my rls one teeny tiny bit.
Again I think its wonderful that just eating COW has cured your rls. Everyone should try building up their iron to see if it helps, but I can assure you that its not the cure for ALL
The answer for me is to continue to swallow my nightly pain meds so that I can sleep! Hopefully one day before my life is over they will discover a cure for RLS.
Mesolo do you also have the creepy crawley can't be still feeling in your legs or just pain? If I don't get up and walk I honestly believe I would go nuts!!
I actually took iron tablets prescribed by my Dr for many months along with a Vit C tablet to help the body obsorb the iron, and it never touched my rls one teeny tiny bit.
Again I think its wonderful that just eating COW has cured your rls. Everyone should try building up their iron to see if it helps, but I can assure you that its not the cure for ALL
The answer for me is to continue to swallow my nightly pain meds so that I can sleep! Hopefully one day before my life is over they will discover a cure for RLS.