rls w/pain unrelenting
rls w/pain unrelenting
I am along time sufferer of RLS with numerous electrical sensations of pain that accompany it. I am relatively new to computers so this is my 1st time to the site. I thought I was unique. Well I am because It's obvious there are varying degrees of misery. I have managed to keep on keepin' on for 18 + years of 24/7 severe RLS. I certainly could write a book about it but it would drudge up too much emotional pain which I attempt to stay away from. It amazes me how pleasant and kind people are as I read these posts. They are in so much pain and yet their humanity still shines through. That's enough philosophy. From my experience of trying most of the medications I've read about here, Methadone was the only med that worked for me so that I could get some sleep and not have to roll around on the floor. It also relieved some of the pain in my legs and throughout my body. I am still just tolerating this affliction. Yet for the first 13 years the pain was intolerable before I tried Methadone. I truly hope that this information can help someone. I wonder if anyone experiences BFS(Benign fisciculation syndrome) along with RLS.
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rlsseattle
- Posts: 14
- Joined: Sun Nov 06, 2005 8:32 pm
unrls w/pain unrelenting
I have posted this replay a few times and have a comment on the board about this myself that you might look at. I have had rls for most of my 57 years. 24/7 with pain. Tried everything, including Requip and Mirapex and all the others.
Found doctor familiar with pain relief and rls (apparently unusual) Most doctors are afraid of all kinds of issues with long-term narcotic relief. But studies show low-dose, time release narcotics have considerably less chance of abuse or addiction.
I use 15mg of ms-contin every 12 hours. Does the trick. It seriously is like I never had a rls problem. I feel great--no diminution of work, alertness, driving, anything....
Check my note below on use of time-release narcotics. May be something to explore, especially if you have a doctor using methadone--this may be a better and safer alternative for you
Found doctor familiar with pain relief and rls (apparently unusual) Most doctors are afraid of all kinds of issues with long-term narcotic relief. But studies show low-dose, time release narcotics have considerably less chance of abuse or addiction.
I use 15mg of ms-contin every 12 hours. Does the trick. It seriously is like I never had a rls problem. I feel great--no diminution of work, alertness, driving, anything....
Check my note below on use of time-release narcotics. May be something to explore, especially if you have a doctor using methadone--this may be a better and safer alternative for you
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ViewsAskew
- Moderator
- Posts: 16580
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
One major study showed that people taking methadone for RLS had extremely low risk of addiction, and some of the people were on it for 17 years. It lasts a long time in the body (up to 12 hours for RLS patients) and thus only has to be taken once a day for many of them. This also helps prevent addiction, as you don't have to take multiple doses each day. It is inexpensive, and the doses we need to take are MUCH lower than people for people using it for pain or herion withdrawal.
Ann
Ann
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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perriwinkle
rls med prescribed
Just last week my doctor subscribed Sinemet for my RLS since I do not have medical insurance and this medication is less expensive than other medications he could have prescribed. I have not filled this yet because I just wonder if it will really help.
After reading some of the messages about medications on this chat board I am a little confused as to if anything helps much.
I guess I just do not want to take something that makes it worse. Now I just take a tylenol PM before going to bed but it does not help much, except I do believe it helps me to stay asleep a little more. It still takes along time to go to sleep and I do wake up several times during the night.
After reading several messages it does sound like codiene helps but are doctors willing to prescript this. I am 61 so I wonder if being addicted or dependant on a medicine really matters as losing so much sleep is also very unhealthy. Should I take the Sinemet?
After reading some of the messages about medications on this chat board I am a little confused as to if anything helps much.
I guess I just do not want to take something that makes it worse. Now I just take a tylenol PM before going to bed but it does not help much, except I do believe it helps me to stay asleep a little more. It still takes along time to go to sleep and I do wake up several times during the night.
After reading several messages it does sound like codiene helps but are doctors willing to prescript this. I am 61 so I wonder if being addicted or dependant on a medicine really matters as losing so much sleep is also very unhealthy. Should I take the Sinemet?
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ViewsAskew
- Moderator
- Posts: 16580
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Periwinkle,
It's a hard decision you have to make and many of us struggle with it. Personally, if I was not sleeping well, my life was suffering, and I had tried the appropriate life style changes and it didn't work, I would try medications. In fact, I did.
BUT, I would get as educated as I could and know as much as I could before doing it. I didn't do that. And I paid a price.
Many of the people who write on this board have very severe RLS that they are having difficulty treating. For the other 80% of people, they don't post much, or only post once or twice, get the medications they need and they don't come back. Because it worked! You are reading posts that are very skewed.
The best advice we can give you is this. Go to the New to RLS section. Read the Welcome Newcomers 'sticky' post. When you are finished there, read the Useful Links sticky post. These have the best of the best of what we have posted here. There is specific information about sinemet in there (including other dopamine agonists). There is also specific information in there about medications you should not take if you have RLS (Tylenol PM is one of them, as it has dipenhydramine in it, which makes RLS worse for most people).
In addition to that, I know how difficult it is to get medication if you do not have insurance. I've been there. I also know how bad it is to be sleep deprived, which is linked to depression and other illnesses. It may be that the best medicine for you is not the cheapest. If you decide to take Sinemet because of the cost, even though there are better choices, you may actually make your RLS worse.
Hope this helps some. I probably opened more cans of worms than I resolved, but it's a tough decision and in my opinion you need to know as much as you can to make the best decision you can, FOR YOU. Welcome to our group and let us know what you decide or if you have more questions after you read some more information.
Ann
It's a hard decision you have to make and many of us struggle with it. Personally, if I was not sleeping well, my life was suffering, and I had tried the appropriate life style changes and it didn't work, I would try medications. In fact, I did.
BUT, I would get as educated as I could and know as much as I could before doing it. I didn't do that. And I paid a price.
Many of the people who write on this board have very severe RLS that they are having difficulty treating. For the other 80% of people, they don't post much, or only post once or twice, get the medications they need and they don't come back. Because it worked! You are reading posts that are very skewed.
The best advice we can give you is this. Go to the New to RLS section. Read the Welcome Newcomers 'sticky' post. When you are finished there, read the Useful Links sticky post. These have the best of the best of what we have posted here. There is specific information about sinemet in there (including other dopamine agonists). There is also specific information in there about medications you should not take if you have RLS (Tylenol PM is one of them, as it has dipenhydramine in it, which makes RLS worse for most people).
In addition to that, I know how difficult it is to get medication if you do not have insurance. I've been there. I also know how bad it is to be sleep deprived, which is linked to depression and other illnesses. It may be that the best medicine for you is not the cheapest. If you decide to take Sinemet because of the cost, even though there are better choices, you may actually make your RLS worse.
Hope this helps some. I probably opened more cans of worms than I resolved, but it's a tough decision and in my opinion you need to know as much as you can to make the best decision you can, FOR YOU. Welcome to our group and let us know what you decide or if you have more questions after you read some more information.
Ann
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.