hi,
i'm new to this site too. i'm not big on the discussion board stuff, but i don't know what else to do at this point. i figure i might as well talk to other people about my rls that have it too. its almost 1 in the morning, and i'm dying to go to sleep...but i can't. i'm so tired of this! i'm a stay at home mom, and i can't afford not to get my rest. i need some relief...now! does anyone have anything that they can suggest?
STRETCHES HELP ME A GREAT DEAL
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ViewsAskew
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Erin, you're in a tough spot. Have you seen a doctor? Not necessarily for medicine (though that may be an option at some time) but to get your ferritin levels tested? And, do you know if you have primary (inherited) or secondary RLS? The treatment might vary based on which it is.
I wish there was a really quick fix. I can hopefully give you a few things that might help.
1. Go to Jill Gunzel's RLS Rebel site www.rlsrebel.com . Or buy her book. There are many great ways to help you get through the RLS without it driving you mad.
2. Read the sticky post in the New to RLS section. It has many things you should check out that might be making the RLS worse - like meds you might be taking, food you are eating, etc. Many people can reduce their RLS significantly by making these type of lifestyle changes.
3. Figure out if it's primary or secondary RLS. Primary is inherited or has no known cause - usually someone else in the family has it, though you may not know it! It's not something we all talk about. Secondary is brought on by another disorder - and there are many of them. The sticky post lists them.
If the RLS is secondary, getting the condition that is causing it under better control often helps the RLS. For example, people with undiagnosed celiac disease often have RLS. When they treat the celiac, the RLS usually goes away. Same with pregnancy. Many women get RLS during pregnancy, yet it goes away for most of them after delivery. Other secondary causes can be low folic acid, diabetes, or spinal injury.
If the RLS is primary or secondary, have your doctor test your ferritin levels. If it is below 50, work with your doctor to take iron 325 mg, 3x a day, preferably with orange juice or a vitamin C tablet. Bringing ferritin up to at least 50 reduces or eliminates RLS in up to 60% of those with RLS.
Hope those ideas are helpful. Sorry you had to find us and good luck with improving your situation.
I wish there was a really quick fix. I can hopefully give you a few things that might help.
1. Go to Jill Gunzel's RLS Rebel site www.rlsrebel.com . Or buy her book. There are many great ways to help you get through the RLS without it driving you mad.
2. Read the sticky post in the New to RLS section. It has many things you should check out that might be making the RLS worse - like meds you might be taking, food you are eating, etc. Many people can reduce their RLS significantly by making these type of lifestyle changes.
3. Figure out if it's primary or secondary RLS. Primary is inherited or has no known cause - usually someone else in the family has it, though you may not know it! It's not something we all talk about. Secondary is brought on by another disorder - and there are many of them. The sticky post lists them.
If the RLS is secondary, getting the condition that is causing it under better control often helps the RLS. For example, people with undiagnosed celiac disease often have RLS. When they treat the celiac, the RLS usually goes away. Same with pregnancy. Many women get RLS during pregnancy, yet it goes away for most of them after delivery. Other secondary causes can be low folic acid, diabetes, or spinal injury.
If the RLS is primary or secondary, have your doctor test your ferritin levels. If it is below 50, work with your doctor to take iron 325 mg, 3x a day, preferably with orange juice or a vitamin C tablet. Bringing ferritin up to at least 50 reduces or eliminates RLS in up to 60% of those with RLS.
Hope those ideas are helpful. Sorry you had to find us and good luck with improving your situation.
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.
Ann,
Thank you for all your suggestions. Hopefully I can find something that works for me. I've been dealing with rls for as long as I can remember, but it's gotten really bad the last two weeks. I'm going to call the doctor like you said and get things tested. It's so helpfull to know that there are other people going through the same thing. Thank you again...you don't know how much it means to me to be able to have someone else who understands.
Thank you for all your suggestions. Hopefully I can find something that works for me. I've been dealing with rls for as long as I can remember, but it's gotten really bad the last two weeks. I'm going to call the doctor like you said and get things tested. It's so helpfull to know that there are other people going through the same thing. Thank you again...you don't know how much it means to me to be able to have someone else who understands.
erin
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ViewsAskew
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That's probably the best thing about these boards - all of us know what it's like. It's kinda weird to come here and have everyone "get it"! Not only that, but they empathize AND have good suggestions. I can't get that at my doctors 
Since you've had RLS for a long time - since a child or teen, I'm guessing - it's most probably primary. If the ferritin is low, it may help to get it up. Looking at the links I gave you will give some more tips on what to do. You may be able to manage longer without meds. At some time, though, many of us with primary RLS find we just are losing too much of our lives to RLS. Family, dating, children, jobs, hobbies - everything is affected by it. Eventually, I had to make a decision - which was more important? me not wanting to take meds or my quality of life (of which I had none left).
Since you've had RLS for a long time - since a child or teen, I'm guessing - it's most probably primary. If the ferritin is low, it may help to get it up. Looking at the links I gave you will give some more tips on what to do. You may be able to manage longer without meds. At some time, though, many of us with primary RLS find we just are losing too much of our lives to RLS. Family, dating, children, jobs, hobbies - everything is affected by it. Eventually, I had to make a decision - which was more important? me not wanting to take meds or my quality of life (of which I had none left).
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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Guest
so are you on meds for your rls? if so, what did you find that worked for you...if you don't mind me asking. was it something natural, or something given to you by your doctor. i was reading this article on "Calm"(or the name was something like that). its an all natural powder that you add to boiling water, than drink it. according to them it really works calm rls, and helps you get a good nights sleep. have you heard anything about these type of remedies?
thanks for your time...
thanks for your time...
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Not sure who you are asking, guest.
If me, yes, I take medication. I take Methadone and have for about a year. I've tried many others, also. This seems to work the best for me and have the least side effects. It is not considered something to take, however, until you have tried other things and they haven't worked. If you have some time, read some of the posts in this and other sections. You'll quickly get an idea of what has worked for people and what people take for RLS. It's a HUGE variety.
There are no clinical studies to show that any natural remedy works. Of course, no pharma company is breaking down the doors to test natural remedies. That said, there have been tests for RLS trying natural things - like vitamins and minerals - and none have proven effective as of yet.
It seems, if I understand the articles I've read and the researchers I've talked to, that there is a strong placebo effect with RLS. For example, a large minority of people with pretty nasty RLS find vast improvement when they get the placebo in the pharma studies! We all know that we can stop it dead in its tracks if we pay attention to something. So, if we take something that has NO effect at all on the RLS but we believe it does, it probably works.
So, if you want to try the product, please do. You may be one of the people it helps. The more you believe, the more likely it will help.
Hope that answers your question.
If me, yes, I take medication. I take Methadone and have for about a year. I've tried many others, also. This seems to work the best for me and have the least side effects. It is not considered something to take, however, until you have tried other things and they haven't worked. If you have some time, read some of the posts in this and other sections. You'll quickly get an idea of what has worked for people and what people take for RLS. It's a HUGE variety.
There are no clinical studies to show that any natural remedy works. Of course, no pharma company is breaking down the doors to test natural remedies. That said, there have been tests for RLS trying natural things - like vitamins and minerals - and none have proven effective as of yet.
It seems, if I understand the articles I've read and the researchers I've talked to, that there is a strong placebo effect with RLS. For example, a large minority of people with pretty nasty RLS find vast improvement when they get the placebo in the pharma studies! We all know that we can stop it dead in its tracks if we pay attention to something. So, if we take something that has NO effect at all on the RLS but we believe it does, it probably works.
So, if you want to try the product, please do. You may be one of the people it helps. The more you believe, the more likely it will help.
Hope that answers your question.
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.
As far as helpful stretches, anything that stretches the underlying muscles of my calves. These are the ones responsible for extension rather than flexion. I just can't seem to remember their name, but we all know they are there when the RLS is in full swing!
Anyway, I find that standing with my toes on the edge of the step and dropping my heels way down is a great stretch!! The straighter I can keep my legs, the deeper the stretch. After I go downstairs for a glass of water and more Requip, I stop to stretch like this on my way back upstairs.
Anyway, I find that standing with my toes on the edge of the step and dropping my heels way down is a great stretch!! The straighter I can keep my legs, the deeper the stretch. After I go downstairs for a glass of water and more Requip, I stop to stretch like this on my way back upstairs.
stretching exercises
I get only temporary relief from stretching. Sometimes I'm stretching so hard I get leg cramps, but I can't help it, just gentle stretching doesn't help. I've often thought that maybe being on the old torture rack would actually give the best relief. if I'm totally exhausted, then stretching before hand can help me get to sleep. Otherwise, it just helps for maybe 15-20 minutes.
Pairodocs
Pairodocs