Need to Get Serious About Combatting RLS
Need to Get Serious About Combatting RLS
I was very active on this site back in the fall, and the more I read from others, the more depressed I became. It seemed that there was no real relief, only temporary relief from Requip, which makes me very sleepy, and I take 4 mgs a day. I guess I stopped reading and learning, thinking that I would go back to just trying to ignore this, which is impossible of course. I read tonight that maybe diet and caffeine are contributors. Is this true, and can anyone advise me about how to change my diet to help. I'm thankful for the Requip, but I'm also enslaved to it. I don't go anywhere without it, and I am careful about getting refills before the pharmacy is closed on a weekend or holiday. I was just hoping that maybe I could change something basic, like diet or coffee consumption that could help. I am otherwise very healthy. I would appreciate any response, and I will be more active here in the future. The practice of hiding from this disease isn't working for me very well. Thanks in advance for any advice you might have.
Welcome back!!! I want to thank you for your honesty for that's what makes this board special is that we're honest about our feelings and even faults so that realistic solutions can be found. I too tired to ignore my nightly RLS attacks and stayed away from this site before realizing that I was only cheating myself and ignorance is NOT bliss!
I'll post more later but wanted to mainly say "howdy" at this point. But yes, caffeine definitely exasperates RLS in many people. Then, once the diet is under control and foods/OTC meds that exasperate RLS are out of your system, then a baseline can be established to see what amount of RLS meds are necessary.
Here's a link of common foods and meds to avoid like the plague:
http://www.rlshelp.org/rlsrx.htm#Avoid%20drugs
Do a search at the top of this forum and you'll find quite the love/hate relationship with Requip.
If dopamine agonists don't work, there's the next step as shown by RLS experts.... (see the link in my signature below...)
I'll post more later but wanted to mainly say "howdy" at this point. But yes, caffeine definitely exasperates RLS in many people. Then, once the diet is under control and foods/OTC meds that exasperate RLS are out of your system, then a baseline can be established to see what amount of RLS meds are necessary.
Here's a link of common foods and meds to avoid like the plague:
http://www.rlshelp.org/rlsrx.htm#Avoid%20drugs
Do a search at the top of this forum and you'll find quite the love/hate relationship with Requip.
If dopamine agonists don't work, there's the next step as shown by RLS experts.... (see the link in my signature below...)
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ViewsAskew
- Moderator
- Posts: 16581
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
John, while 4 mg is not out of the question to take, it is the upper limit of the Requip dose. Maybe this isn't the best drug for you. I know it's not fun at all, but maybe checking out some other options would be worth it to you. You might find something that actually works better for your body,.
That said, it's also possible that something else is contributing to your RLS. As Hos said, drugs and food and beverages can all contribute. For me, caffeine is a killer. For others, it doesn't bother them at all. Sugar, ice cream, gluten are all things that bother some people.
Also, there are a host of illnesses that can cause secondary RLS. If you have primary RLS (not caused by anything, often hereditary), you can ALSO have secondary RLS that worsens it. Or you can just have secondary RLS. Secondary is often worse than primary. It is RLS caused by another disease or condition - celiac disease, fibro, diabetes, pregnancy, etc. There are about 30 conditions that can cause RLS. It could be that you have something you are not even aware of that is causing your RLS to be worse.
Please remember that for many people who post here, we are the far ends of the bell curve. Many people do not need to come here, as their RLS isn't a problem for them, or they get it under control quickly with the first med they take. As you've noted, though, there is no real relief in the sense of eliminating it (for most of us). It does make it hard. But, when we get the right treatment for us - and that varies from person to person - life can be pretty darn good. I've been on the right treatment for me for about two years. Unfortunately, most of us need to switch around those treatments every so often. We learn to be really happy with a few years of success, knowing that we will have to change sooner or later and hope that it's later.
If you have any questions, just ask. Hopefully we will know, or can direct you.
That said, it's also possible that something else is contributing to your RLS. As Hos said, drugs and food and beverages can all contribute. For me, caffeine is a killer. For others, it doesn't bother them at all. Sugar, ice cream, gluten are all things that bother some people.
Also, there are a host of illnesses that can cause secondary RLS. If you have primary RLS (not caused by anything, often hereditary), you can ALSO have secondary RLS that worsens it. Or you can just have secondary RLS. Secondary is often worse than primary. It is RLS caused by another disease or condition - celiac disease, fibro, diabetes, pregnancy, etc. There are about 30 conditions that can cause RLS. It could be that you have something you are not even aware of that is causing your RLS to be worse.
Please remember that for many people who post here, we are the far ends of the bell curve. Many people do not need to come here, as their RLS isn't a problem for them, or they get it under control quickly with the first med they take. As you've noted, though, there is no real relief in the sense of eliminating it (for most of us). It does make it hard. But, when we get the right treatment for us - and that varies from person to person - life can be pretty darn good. I've been on the right treatment for me for about two years. Unfortunately, most of us need to switch around those treatments every so often. We learn to be really happy with a few years of success, knowing that we will have to change sooner or later and hope that it's later.
If you have any questions, just ask. Hopefully we will know, or can direct you.
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.
Hey John
I wanted to add my welcome along with HOS and Viewsaskew. And, I wanted to say that there are no "rules" regarding how much you post here. But, as for myself, I can tell you that it helps me tremendously to talk about how RLS affects my quality of life. And, I like the sharing of ideas, etc., that we do here.
I'm glad you feel you can be so honest here. That's what's so great about this forum. Many of us have bared our souls, so to speak, on this forum. And, in my case anyway, I'm constantly learning more about RLS from the people who post here.
You've been given great advice by HOS and Viewsaskew. Good luck and, please let us know how you are doing.
Jan
I wanted to add my welcome along with HOS and Viewsaskew. And, I wanted to say that there are no "rules" regarding how much you post here. But, as for myself, I can tell you that it helps me tremendously to talk about how RLS affects my quality of life. And, I like the sharing of ideas, etc., that we do here.
I'm glad you feel you can be so honest here. That's what's so great about this forum. Many of us have bared our souls, so to speak, on this forum. And, in my case anyway, I'm constantly learning more about RLS from the people who post here.
You've been given great advice by HOS and Viewsaskew. Good luck and, please let us know how you are doing.
Jan
No one is alone who had friends.
Hey John
Welcome back to the boards
You are free to vent, cry, ask questions, float ideas, cogitate ... wateva ... and you can be sure someone or a lot of someones will respond.
I am also on 4mg of Requip (known as Repreve here in Aust) and yup, it makes me drowsy too, although i've gotten used to it and just "live" around it.
As for the diet angle ...
... caffeine - one of our biggest enemies; i've had to give up my beloved coca-cola
and only drink tea occassionally; chocolate too is a caffeine "carrier", which hasnt been a problem for me as i'm not a chocoholic 
... dairy products - my first GP put me on a complete dairy-free diet when I was about 7yrs old as a last ditch effort to stop me screaming about my legs ... lo-n-behold i was like a new kid within 48hrs! I'm 31 now and dont follow the diet to the complete "letter" as my mum did for me when I was a kid (although I probably shud
) so if i give in to a craving for ice-cream or a thickshake or have a pasta meal with a heavy cream-based sauce, then i'm in for a bit of a ride for the next day or five.
... alcohol - not many people think that it affects RLS, but it does. Different types affect RLS in different ways e.g. beer vs wine vs spirits so if you have a favourite tipple, you'll have to keep an eye on how much your RLS can tolerate before it says "enuff"! Beer is totally out for me, as is wine ... vodka is still on the menu tho
... fresh pineapple- yup, i know, "wat the?" ... but i've had to give it up completely. There's a particular chemical in fresh pineapple that sends my RLS ballistic. I'll have to do a bit of digging to find out the name of the chemical again as my brain fog has kicked in at the wrong moment as usual.
Lifestyle is another thing to examine ...
... tobacco - i'm a non-smoker myself, so am unable to vouch for this one personally - but in a lot of the reading I have done, tobacco has been mentioned as an RLS exacerbater
... stress - stay away from it
if you have a demanding job that has you stressed out week in week out ... consider if the lack of sleep, pain and frustration is really worth it. We work to live, not live to work. I found that out the hard way and after five years as a financial accountant for four international university campuses (four campuses based around australia), working 60-70hr weeks, and getting no more than 1-3hrs sleep a nite, my RLS and body screamed "ENUFF" and I ended up in hospital. I resigned the next day, and after 4 months complete rest, started my own business doing bookkeeping.
... exercise ... "walking it off" or "stretching it out" (my favourite) is good if it helps alleviate an attack, but there's an awfully fine line between enough and too much, rendering you completely useless and exhausted for twice as long as you intended.
The best way to figure out what might be triggering attacks is to keep a diary of everything you eat, drink and do each day. Sounds like a chore, but believe me, if there's a pattern, it will stick out like a sore thumb within no time and you have your starting point.
Big (((hugs))) to you for admitting to yourself that you've been hiding from RLS and being brave enough to tell us about it. You have a second family here. There is a mountain of information on these boards, as well as on the RLS Foundation Site itself ... so take the time to wander around the place.
Take care of you!!!
Welcome back to the boards
You are free to vent, cry, ask questions, float ideas, cogitate ... wateva ... and you can be sure someone or a lot of someones will respond.
I am also on 4mg of Requip (known as Repreve here in Aust) and yup, it makes me drowsy too, although i've gotten used to it and just "live" around it.
As for the diet angle ...
... caffeine - one of our biggest enemies; i've had to give up my beloved coca-cola
and only drink tea occassionally; chocolate too is a caffeine "carrier", which hasnt been a problem for me as i'm not a chocoholic
... dairy products - my first GP put me on a complete dairy-free diet when I was about 7yrs old as a last ditch effort to stop me screaming about my legs ... lo-n-behold i was like a new kid within 48hrs! I'm 31 now and dont follow the diet to the complete "letter" as my mum did for me when I was a kid (although I probably shud
) so if i give in to a craving for ice-cream or a thickshake or have a pasta meal with a heavy cream-based sauce, then i'm in for a bit of a ride for the next day or five.
... alcohol - not many people think that it affects RLS, but it does. Different types affect RLS in different ways e.g. beer vs wine vs spirits so if you have a favourite tipple, you'll have to keep an eye on how much your RLS can tolerate before it says "enuff"! Beer is totally out for me, as is wine ... vodka is still on the menu tho
... fresh pineapple- yup, i know, "wat the?" ... but i've had to give it up completely. There's a particular chemical in fresh pineapple that sends my RLS ballistic. I'll have to do a bit of digging to find out the name of the chemical again as my brain fog has kicked in at the wrong moment as usual.
Lifestyle is another thing to examine ...
... tobacco - i'm a non-smoker myself, so am unable to vouch for this one personally - but in a lot of the reading I have done, tobacco has been mentioned as an RLS exacerbater
... stress - stay away from it
if you have a demanding job that has you stressed out week in week out ... consider if the lack of sleep, pain and frustration is really worth it. We work to live, not live to work. I found that out the hard way and after five years as a financial accountant for four international university campuses (four campuses based around australia), working 60-70hr weeks, and getting no more than 1-3hrs sleep a nite, my RLS and body screamed "ENUFF" and I ended up in hospital. I resigned the next day, and after 4 months complete rest, started my own business doing bookkeeping.
... exercise ... "walking it off" or "stretching it out" (my favourite) is good if it helps alleviate an attack, but there's an awfully fine line between enough and too much, rendering you completely useless and exhausted for twice as long as you intended.
The best way to figure out what might be triggering attacks is to keep a diary of everything you eat, drink and do each day. Sounds like a chore, but believe me, if there's a pattern, it will stick out like a sore thumb within no time and you have your starting point.
Big (((hugs))) to you for admitting to yourself that you've been hiding from RLS and being brave enough to tell us about it. You have a second family here. There is a mountain of information on these boards, as well as on the RLS Foundation Site itself ... so take the time to wander around the place.
Take care of you!!!
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
Glad you are here, John. I'm sorry that you are struggling so, but there is no better place to be for help and support. You have already received some great advice and I would only add that you might consider checking out the RLS rebel, Jill Gunzel, at http://members.cox.net/gunzel/rls.html. She offers non-medication approaches to helping RLS symptoms and many on the board have found relief by doing some or all of the things she suggests. There are definitely things there that can be done in conjunction with medication. Good luck and let us know how things go.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
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Polar Bear
- Moderator
- Posts: 8822
- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
Hi, I only joined a week or so ago, and certainly was at first like you rather alarmed to see how many people continue to just try and cope with symptoms year after year. I suppose I was hoping to find the equivalent of the Holy Grail or some such !! I wondered would it be more depressing to continue to read all the posts or to go back to coping as best as I could on my own. Then I realised, rls just is what it is... no point in trying to ignore it, it doesn't work. So now I shall go do a search and see if I can get some tips on long haul air travel, going to my son's wedding in NW Canada - direct flight from UK.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
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ViewsAskew
- Moderator
- Posts: 16581
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
John if you like her site, check out her book. It really is pretty fabulous for helping. She has some great ideas. I think that for those of us who get really anxious from the RLS, her ideas can be hard to adopt - it requires chilling out to an extent. When I am in a panic, the first thing I think of is far, far from her philosophy. But, if I can grab my shoulders and shake myself - metaphorically speaking - some of these are very helpful, especially when I have no other options.
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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walkindafloors
- Posts: 110
- Joined: Tue Jul 18, 2006 4:54 pm
- Location: Virginia
The rebel site has given me several tips that have really helped me NOT get to the panic stage near as often. Mostly it taught me to step back and see what was going on - so I would be prepared ahead of time to deal the next episode. I keep Suduko books, scrapbooking, crocheting, and several more busy work stuff lying around the house so when I know I'm headed for a long night (like tonight I've slept from 9:30 - 11pm and that's it - now 4:15 am...) I try to stay busy jumping from one activity to another to keep my mind off my legs as much.
The other tip that has helped much is the MP3 at bedtime. At least when my legs start moving, I can move to a beat and have found falling off to sleep much easier (course, I might then be up a couple hours later, but hey, that's 2 hours I need to appreciate!) Also I am listening when moving about at night doing my many activities so I'm not "alone" but have several wonderful musicians singing along with me (luckily I have not awaken the dogs into a full howl yet!).
Guess the main point in all my rambling is just to listen to your body - grab the sleep when you can and use your awake time so you feel in control rather than the rls Granted this calm advice comes after 2 nights of walkindafloors ~ by tomorrow night I very well may be in my full panic state 
~ thus the reason for this discussion board and the wonderful folks you'll find here that are ALWAYS empathetic and there for you
The other tip that has helped much is the MP3 at bedtime. At least when my legs start moving, I can move to a beat and have found falling off to sleep much easier (course, I might then be up a couple hours later, but hey, that's 2 hours I need to appreciate!) Also I am listening when moving about at night doing my many activities so I'm not "alone" but have several wonderful musicians singing along with me (luckily I have not awaken the dogs into a full howl yet!).
Guess the main point in all my rambling is just to listen to your body - grab the sleep when you can and use your awake time so you feel in control rather than the rls
Granted this calm advice comes after 2 nights of walkindafloors ~ by tomorrow night I very well may be in my full panic state ~ thus the reason for this discussion board and the wonderful folks you'll find here that are ALWAYS empathetic and there for you Who took the FUN out of disFUNctional?
Kim <><
Kim <><
You've hit on some great points that I know several us follow. I always get on my computer---thank goodness for game sites! I play word games, puzzles, even bowl---and I usually eventually get sleepy again.
I just got an MP3 player for Christmas---at MY age (LOL). I haven't used it the way you are yet, but have thought about it. I think it's a great idea! I'm usually worried about waking my dog or someone else in the house when I get up. One time I think the MP3 player would be invaluable is when I visit someone overnight and can't go to down my office to get on the computer--- or can't turn on the TV. Thanks for the tip.
I know RLS isn't a "mind of matter" thing--- But, it does help when we can get our minds on something else for just a little bit--at least it helps me.
I just want to say, as one of the "oldertimers", that I think it's wonderful the way so many newer members (I know you've been around for awhile) are jumping right in and utilizing this site in the way it's meant to be used. And, unlike the saying, this "old" dog can still be taught new tricks!
Thanks a bunch!
Jan
I just got an MP3 player for Christmas---at MY age (LOL). I haven't used it the way you are yet, but have thought about it. I think it's a great idea! I'm usually worried about waking my dog or someone else in the house when I get up. One time I think the MP3 player would be invaluable is when I visit someone overnight and can't go to down my office to get on the computer--- or can't turn on the TV. Thanks for the tip.
I know RLS isn't a "mind of matter" thing--- But, it does help when we can get our minds on something else for just a little bit--at least it helps me.
I just want to say, as one of the "oldertimers", that I think it's wonderful the way so many newer members (I know you've been around for awhile) are jumping right in and utilizing this site in the way it's meant to be used. And, unlike the saying, this "old" dog can still be taught new tricks!
Thanks a bunch!
Jan
No one is alone who had friends.