Gil
Go to www.rlshelp.org and the on the left side of the page you will see
RLS/PLMD Treatment Page. Click on that and you will find loads of great information about meds that are used to treat rls.
click here
www.rlshelp.org
then click on left side of page RLS/PLMD Treatment Page
Hope this is helpful to you.
Need to Vent
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Polar Bear
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Gill, if you print out the information on treatment on mackjerkan's links and take it to your doc, it should be difficult for doc to say there is nothing available !!
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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Polar Bear
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What side effects ??
You are already suffering at the moment. And not everyone gets side effects that cannot be dealt with.
You are already suffering at the moment. And not everyone gets side effects that cannot be dealt with.
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
i'm new here.
hi all. i've had this since about 1980. it is very severe now. i've tried neurontin, sinemet, requip, etc. now on mirapex 1.5 and sinimet cr.
i move all the time. wakes me up a few hundred times a night! but it is severe. i seem to be crying all the time about it. my feet, calves and now my thighs. i've gritted my teeth down to stubs. been to many neurologists. nobody seems to know anything about rls. amazing. my hands shake all the time, my balance is off, i'm tired all the time. i zone out a lot too. can't sit on the train, don't go to the movies at all. i'm frustrated, depressed and hate to think this can get worse. i guess i just want to vent. this is the first time i'm on this site. you all are so supportive, i though it would jump in! thanks for listening.
i move all the time. wakes me up a few hundred times a night! but it is severe. i seem to be crying all the time about it. my feet, calves and now my thighs. i've gritted my teeth down to stubs. been to many neurologists. nobody seems to know anything about rls. amazing. my hands shake all the time, my balance is off, i'm tired all the time. i zone out a lot too. can't sit on the train, don't go to the movies at all. i'm frustrated, depressed and hate to think this can get worse. i guess i just want to vent. this is the first time i'm on this site. you all are so supportive, i though it would jump in! thanks for listening.
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Polar Bear
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HI ponusia, loads of info and support on this site. Sorry you are having such a bad time with this awful disease.
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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Polar Bear
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- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
Yes, I know it's awful,
at the moment my legs are crawling all over the place, my rls seems to have gone a bit haywire these last few days despite my medications. Always bubbling in the background regardless of meds and 'walking' tho thankfully I'm still managing to get about 4=5 hours sleep at night thanks to sleeping med.
If you are new to the site you should print out the Mayo Algorithm for your docs. It is linked under the signatures of some of the postings. Also you will get it at rlshelp.org.
at the moment my legs are crawling all over the place, my rls seems to have gone a bit haywire these last few days despite my medications. Always bubbling in the background regardless of meds and 'walking' tho thankfully I'm still managing to get about 4=5 hours sleep at night thanks to sleeping med.
If you are new to the site you should print out the Mayo Algorithm for your docs. It is linked under the signatures of some of the postings. Also you will get it at rlshelp.org.
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
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ponusia, I'm not sure how long you've been on Mirapex or Sinemet, but these two drugs, especially Sinemet, are known to worsen RLS. Terribly in a few cases.
Please, please go to the Pharma section and read the "sticky" post. There is a section in it about augmentation. This is what it's called when the RLS gets worse because of certain drugs.
It may not be this. But, it might. Please let me tell you that it's really hard to stop the Sinemet and Mirapex if this is the case. It will get worse before it gets better. But, a few weeks after stopping them, it usually gets much, much better. Not always, but most of the time.
Again, I'm not a doc. Just someone who this same thing happened to and who's seen it happen to at least thirty or forty people here. It's not uncommon, but docs don't know much about it.
Hope you find what you need here...
Please, please go to the Pharma section and read the "sticky" post. There is a section in it about augmentation. This is what it's called when the RLS gets worse because of certain drugs.
It may not be this. But, it might. Please let me tell you that it's really hard to stop the Sinemet and Mirapex if this is the case. It will get worse before it gets better. But, a few weeks after stopping them, it usually gets much, much better. Not always, but most of the time.
Again, I'm not a doc. Just someone who this same thing happened to and who's seen it happen to at least thirty or forty people here. It's not uncommon, but docs don't know much about it.
Hope you find what you need here...
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 it is worse than it used to be, and you can definitely trace it back to when you started Mirapex and Sinemet, you've got to stop them ASAP..
Somehow, some way, find a doctor who KNOWS something or is at least willing to LISTEN.. It doesn't even have to be a neurologist.
Print out the Mayo Clinic algorithm for treating RLS and take it with you to every doctor you can! I'm sorry I don't have a direct link, but it is around here somewhere.. Try searching the forum for it or checking member signatures.. The pharma sticky thread Anne mentioned, I am sure it is in there somewhere...
According to the algorithm you may need to try Opiates to get successful treatment.. But you should try other medications first if you can.. Try Requip, if your RLS is every day STAY AWAY from Sinemet immediately!
Sinemet drives me nuts.. I used to be able to take it for a few days at a time, getting maybe a week or two break from my opiates (because of my own problems... I am not a typical case of how patients react to opiate therapy). I can't even stand to take the stuff for more than 2 or 3 days now.. Taking rediculous amounts just to get through those few days even..
Sinemet is a BAD treatment for frequent RLS and many people don't like to recommend using it anymore unless you get symptoms only a handful of nights a month. If you fail to respond to both Requip & Mirapex both your options will be severely limited.. But above all, outside of giving the medicine a chance and playing with the dose to find what might work for you. DON'T let anyone keep you on it, or give you excessive amounts if you clearly see it is NOT working. Several members here have dealt with permanent augmentation (an increase in severity and frequency of symptoms) because of prolonged Dopamine Agonist therapies that by all accounts were not working for them. My personal experience with Mirapex was I augmented from the first pill out of the trial pack and the effects lasted practically 24 hours, straight into the following day, on which I thankfully had a doctors appointment.
You can also try Nuerontin or its bigger cousin Lyrica. They are drugs that act on the GABA receptors, helpful in things such as nerve pain and diabetic neuropathy. However they have their own side effects to deal with at the higher effective doses.. (Feeling like you had one drink too many, being tired a lot, falling asleep at the wheel is a real danger.. lethargy, or just feeling run down / tired are the most common complaints)
As I said your choices may be limited if it turns out Dopamine Agonists (Requip & Mirapex) and Sinemet don't work for you at all.. You may have to search long and hard until you find a doctor willing to follow the Mayo Algorithm and prescribe an opiate medication regime. I do NOT advocate opiate as a front-line drug or catch-all bandaid, but for some of us here they have proven to be the only things that consistently works.
A Doctor may be willing to give you Tramadol with relatively little trouble. It is considered non-narcotic, but it DOES act on opiate receptors in the body, and can exhibit narcotic-like side effects. There is also a small seizure risk, taking antidepressants and a few other medications can significantly increase this risk however. Tramadol (brand name Ultram) is NOT designated a controlled substance by the DEA. All you legally need to purchase it is a prescription from a Doctor. So this may be one possibility for you.
It may also be as simple as one or two Tylenol #3 (relatively weak but it does work for some people) or Hydrocodone (Vicodin) per evening before bedtime. I just want you to know that you have options, and you have rights; but as an RLS patient you unfortunately are going to have to fight more oft than not, to assert those rights. I just hope you will be able to find a doctor who can help you.
If it comes down to it. You could try getting into a pain clinic, usually you can get Methadone from them.. But if it becomes apparent that opiates do work and you desire to seek treatment with them, DON'T jump straight to methadone or anything, even if you have to seek help from a pain clinic.. There is reason to believe Methadone is dangerous to patients who have not been exposed to even small levels of other more traditional opiates.. Please don't think I am trying to scare you.. I am just trying to look out for you and give you the best information I possibly can.. I want to see all people with RLS get help, but I don't want to do so at the expense of someone elses life, based on the info I gave them...
It sounds like you do need to get informed, read up, print out the Mayo Algorithm and see one or more doctors to discuss it. I hope you have good luck getting the treatment you need, and remember we are always here to help in any way we can. We are a support community made up OF people like "US" and FOR people like "US".
Somehow, some way, find a doctor who KNOWS something or is at least willing to LISTEN.. It doesn't even have to be a neurologist.
Print out the Mayo Clinic algorithm for treating RLS and take it with you to every doctor you can! I'm sorry I don't have a direct link, but it is around here somewhere.. Try searching the forum for it or checking member signatures.. The pharma sticky thread Anne mentioned, I am sure it is in there somewhere...
According to the algorithm you may need to try Opiates to get successful treatment.. But you should try other medications first if you can.. Try Requip, if your RLS is every day STAY AWAY from Sinemet immediately!
Sinemet drives me nuts.. I used to be able to take it for a few days at a time, getting maybe a week or two break from my opiates (because of my own problems... I am not a typical case of how patients react to opiate therapy). I can't even stand to take the stuff for more than 2 or 3 days now.. Taking rediculous amounts just to get through those few days even..
Sinemet is a BAD treatment for frequent RLS and many people don't like to recommend using it anymore unless you get symptoms only a handful of nights a month. If you fail to respond to both Requip & Mirapex both your options will be severely limited.. But above all, outside of giving the medicine a chance and playing with the dose to find what might work for you. DON'T let anyone keep you on it, or give you excessive amounts if you clearly see it is NOT working. Several members here have dealt with permanent augmentation (an increase in severity and frequency of symptoms) because of prolonged Dopamine Agonist therapies that by all accounts were not working for them. My personal experience with Mirapex was I augmented from the first pill out of the trial pack and the effects lasted practically 24 hours, straight into the following day, on which I thankfully had a doctors appointment.
You can also try Nuerontin or its bigger cousin Lyrica. They are drugs that act on the GABA receptors, helpful in things such as nerve pain and diabetic neuropathy. However they have their own side effects to deal with at the higher effective doses.. (Feeling like you had one drink too many, being tired a lot, falling asleep at the wheel is a real danger.. lethargy, or just feeling run down / tired are the most common complaints)
As I said your choices may be limited if it turns out Dopamine Agonists (Requip & Mirapex) and Sinemet don't work for you at all.. You may have to search long and hard until you find a doctor willing to follow the Mayo Algorithm and prescribe an opiate medication regime. I do NOT advocate opiate as a front-line drug or catch-all bandaid, but for some of us here they have proven to be the only things that consistently works.
A Doctor may be willing to give you Tramadol with relatively little trouble. It is considered non-narcotic, but it DOES act on opiate receptors in the body, and can exhibit narcotic-like side effects. There is also a small seizure risk, taking antidepressants and a few other medications can significantly increase this risk however. Tramadol (brand name Ultram) is NOT designated a controlled substance by the DEA. All you legally need to purchase it is a prescription from a Doctor. So this may be one possibility for you.
It may also be as simple as one or two Tylenol #3 (relatively weak but it does work for some people) or Hydrocodone (Vicodin) per evening before bedtime. I just want you to know that you have options, and you have rights; but as an RLS patient you unfortunately are going to have to fight more oft than not, to assert those rights. I just hope you will be able to find a doctor who can help you.
If it comes down to it. You could try getting into a pain clinic, usually you can get Methadone from them.. But if it becomes apparent that opiates do work and you desire to seek treatment with them, DON'T jump straight to methadone or anything, even if you have to seek help from a pain clinic.. There is reason to believe Methadone is dangerous to patients who have not been exposed to even small levels of other more traditional opiates.. Please don't think I am trying to scare you.. I am just trying to look out for you and give you the best information I possibly can.. I want to see all people with RLS get help, but I don't want to do so at the expense of someone elses life, based on the info I gave them...
It sounds like you do need to get informed, read up, print out the Mayo Algorithm and see one or more doctors to discuss it. I hope you have good luck getting the treatment you need, and remember we are always here to help in any way we can. We are a support community made up OF people like "US" and FOR people like "US".
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mackjergens
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Gil/ side effects from meds
Gil,
ALL meds have a list of side effects that COULD happen, that does not mean that all people taking meds will have the side affects. The only way to really know if any side affects from any med will affect you is to try taking it.
I notice you say you take pain meds and at times two at a time, for many folks taking 2 pain pills would cause side effects, but you are not bothered by side effects from pain pills, so I am sure that many of the meds used to treat RLS would not bother you at all. But then again you will have to take them to really find out.
You are at least ahead in knowing that pain meds will not control your rls, so your next step will be the Parkinson meds, and with those you start out taking really low amounts, alot less that those taking it for Parkinsons.
You have to be willing to try different meds to be able to find a way to control your rls. I am very lucky that I can control mine by taking pain meds. Sure would be great if your rls was control by pain med since you take them for your arthritis.
I think I mentioned to you once before that asprain helps my arthritis, does not help the rls,but takes the inflammation out of joints where arthritis is so bad.
Also I will mention that taking hot baths will help rls, I have taken as many as 3 hot baths in one night to find a small amount of relief for my rls. Sitting in a rocking chair and rocking is another way to find relief for short periods, even if its 15 minutes it well worth the effort to do these things.
And of course the ONE thing that will stop the rls and that is walking or moving. I always found that just getting up and getting busy walking or cleaning house OR anything to keep me moving was well worth the effort, so much better than trying to stay in bed, tossing and turning and making myself miserable. So when all else fails, just get up and get busy doing something to move. Yes its hard to do at times, but so much better than suffering.
ALL meds have a list of side effects that COULD happen, that does not mean that all people taking meds will have the side affects. The only way to really know if any side affects from any med will affect you is to try taking it.
I notice you say you take pain meds and at times two at a time, for many folks taking 2 pain pills would cause side effects, but you are not bothered by side effects from pain pills, so I am sure that many of the meds used to treat RLS would not bother you at all. But then again you will have to take them to really find out.
You are at least ahead in knowing that pain meds will not control your rls, so your next step will be the Parkinson meds, and with those you start out taking really low amounts, alot less that those taking it for Parkinsons.
You have to be willing to try different meds to be able to find a way to control your rls. I am very lucky that I can control mine by taking pain meds. Sure would be great if your rls was control by pain med since you take them for your arthritis.
I think I mentioned to you once before that asprain helps my arthritis, does not help the rls,but takes the inflammation out of joints where arthritis is so bad.
Also I will mention that taking hot baths will help rls, I have taken as many as 3 hot baths in one night to find a small amount of relief for my rls. Sitting in a rocking chair and rocking is another way to find relief for short periods, even if its 15 minutes it well worth the effort to do these things.
And of course the ONE thing that will stop the rls and that is walking or moving. I always found that just getting up and getting busy walking or cleaning house OR anything to keep me moving was well worth the effort, so much better than trying to stay in bed, tossing and turning and making myself miserable. So when all else fails, just get up and get busy doing something to move. Yes its hard to do at times, but so much better than suffering.
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Polar Bear
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- Posts: 8862
- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
Hey Gill
Haven't seen you posting for a while, unless I've missed something.
How did you get on with visit to the doc.
Haven't seen you posting for a while, unless I've missed something.
How did you get on with visit to the doc.
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
rls....i think in my past life i was a real jerk and now this is my punishment!!!!! 
just kidding...kinda....
who knows maybe it's all the toxic crap in the water air and food....maybe it's just one of those damn things that pop up in people and make their lives miserable...
one thing i do know...i may live with the pain of this stuff, but i know there are people out their that have it a lot worse than i do.....rls isn't going to kill me....so i consider myself pretty lucky in that aspect and very grateful.
dee
just kidding...kinda....who knows maybe it's all the toxic crap in the water air and food....maybe it's just one of those damn things that pop up in people and make their lives miserable...
one thing i do know...i may live with the pain of this stuff, but i know there are people out their that have it a lot worse than i do.....rls isn't going to kill me....so i consider myself pretty lucky in that aspect and very grateful.
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945