Opiates?

Anonymous · Post by **Anonymous** » Sat Jun 03, 2006 4:01 am

Did I spell that right?

Do these work for pain only or do they relieve the movements and tingling as well?

Thanks!

Post by **ViewsAskew** » Sat Jun 03, 2006 12:36 pm

Em, you'll find lots of posts about these if you want to hunt!

They remove both. They were the first drug that was ever found to be effective for RLS. Doctors stopped using them because of concerns of addiction.

They have since learned that the way most of us use the opioids prevents problems. According to Dr Buchfurer, he doesn't have any patients that can't stop them at will, at any time. That's pretty impressive. Of course, since they work for me (and other things don't), I am a stauch supporter and advocate. If you read through the board and the old posts, you'll find out how miserable I was! Woe is me doesn't begin to describe my first few months here. I find I only need to take the methadone once a day - around 6 to 7 PM, and I had 24/7 RLS prior to starting it. Given, the RLS was 24/7 because of augmentation, so that may not work for everyone. Research shows it works for as long as 12 hours - but I can even take naps now, something I could never do before.

Many people find out by accident just how well they work when they take them for something else. While there are many, according to the most recent study I know of, methadone and levorphenal are the two recommended -- most effect for the least side effects. I take methadone and it's been a godsend. Truly.

Anonymous · Post by **Anonymous** » Sat Jun 03, 2006 1:11 pm

Post by **ViewsAskew** » Sat Jun 03, 2006 4:02 pm

Some doctors will listen; most won't. I changed doctors many times. As far as opioids working, as far as I know, they work for most people unless they make people sick. I'm sure there are some they don't work for, just like the DAs.

If you're interested, this was how my story evolved. I'm sure there are pieces not there, but you'll get the gist.

viewtopic.php?t=506&highlight=

viewtopic.php?t=891&highlight=

rlsseattle · Post by **rlsseattle** » Sun Jun 04, 2006 1:31 am

As one of the more outspoken advocates of using opiates, I think I ought to speak up when someone is as interested in the topic as this.

As you said, you have to try everything else first, before opiates. But after years of worsening RLS and one failure after another with all the other options, my doctor put me on ms-contin, a form of low-dose time release morphine. My dose is 15 mg 3x per day. I had been on 2 but started a heavy exercise program that aggravated an old injury so the dose had to be increased for that.

I have little pain--mostly when a dose is nearing its end, and zero symptoms. Never any symptoms. It is as if I have been cured. The only problem is moderate constipation, as many people have with opiates.

My doctor--a sleep specialist on staff at a major teaching hospital here in Seattle-- said the same things as the other experts on the subject. With lower dose, time release opiates, there is no "high", and little chance of addiction.

My hospital requires you to sign an opiate "contract"--specifying the conditions under which you can receive ongoing treatment. This means frequent meetings with your doctor, agreeing not to doctor shop for more opiate--or there will be consequences, testing at their option if they suspect abuse, no extra or early refills, etc.

If you have a doctor who is familiar with opiate use, I recommend you try to get on a program and give it a try if you can. It is a great relief for many of us. But there is still a societal stigma, and many people remain concerned over the abuse and addiction issues.

Anonymous · Post by **Anonymous** » Sun Jun 04, 2006 1:51 am

FidgetBoy · Post by **FidgetBoy** » Mon Jun 05, 2006 1:24 am

Emily-
The thing about new meds is- you'll never know what sorts of side effects you'll be the one to experience. After watching thousands of patients on medications over the years I've always been astounded at how many people never experience what is in the "package insert" or in my text books but rather, show up with some weird thing I've never heard of. I guess what I'm saying is, (and forgive me while I put my pharmacist hat on) you have to try to not let the potential for a side effect of a drug get in your way of attempting to get yourself better. You deserve to live without RLS taking over your entire life. I know RLS has been threatening to do that to me the last year and a half! In terms of narcotics/opiates- thanks to everyone's help here, I finally took the step toward narcotics over a month ago and I honestly can't remember the last time I slept this well.

I finally have control over this horrible affliction and can actually concentrate on, oh, sitting on the couch with my wife and maybe even reading in bed.

This, of course, only occurred after I quit stressing about being on narcotics and simply agreed to let myself live as I deserve. I'm still learning and am still very new to this but hope you'll find answers here, like I have, and can start your journey toward recovery soon.

rfish1966 · Post by **rfish1966** » Wed Jun 07, 2006 5:25 pm

I fully support the use of narcotics/opiates, I went thru hell with all the parkinson's\seizure meds and first few nights on tylenol 3 were like a miracle and after a while most of my daytime symptoms subsided. I can almost function normaly now. In fact I am supposed to talk to my neuro about ms contin since the tylenol3 wears off about the same time each night.

Guest · Post by **Guest** » Thu Jun 08, 2006 3:10 am

Hi I am a new member and I have a quesion, I have been taking percacet for about 6 years now for my RLS, I have found great relief,

the only frustration I have is that when I move do to the military changing Dr.s is not easy and neither is finding new providers willing to treat me with the dosage necc,, Again as mentioned the stigma that goes along with opiates is something not very easy to live with. It is hard to find the right Drs.

Here is my question, my first Nueo Dr. told me that it is often hard for patients to find relief with the drugs such as Mirapex, Sinemet, and Requip, after the patient has already started drugs that fall in the catagory such as percacet,, I also have tried them and not found relief.

That was many years ago. I was wondering what your experiences have been and have any of you experienced the same thing, or have any of you gone off pain pills and gone on the above drugs with success.

I am starting Requip again this evening, giving it a go again. The percacet has caused many digestive problems and I would very much like to go off of it one day. It would be a dream for something else to work. I do sleep with the percacet, so if I need to stay on it then so be it. But I would prefer to be on something more gentle on my system.

Also something easier to obtain,,

thankyou for any replys,

Post by **ViewsAskew** » Thu Jun 08, 2006 3:26 am

That is an interesting idea - that if we have taken opioids before the DAs that the DAs don't work. Maybe when they learn more about how RLS works they will find out if that is true for some reason. Maybe the opioids change the chemicals in the brain in a way that makes it harder for the DAs to work.

I'm not a doctor, a researcher, or even very educated about this, but I have a different hypothesis I can offer. It's always been known that opioids help RLS. As such, there has long been speculation that the opioids system is involved in some way. Maybe it's simply that for some people, the RLS is better helped by DAs and for some it's better helped by opioids.

I didn't start out with opioids, but the DAs caused nothing but problems for me from the very first night. In a way, they truly ruined my life, and I'm not exagerating. I can honestly say I wish I'd stopped them within the first two weeks when I knew in my gut how many problems they were causing. But, I didn't. I listening to a doctor who I thought "knew" so much more than I. But, he didn't. And he was wrong.

Truth be told, no one knows a whole heck of a lot about this darn disorder. Doctors can tell us whatever they want, but they don't really know either. The only real truth is that some things work sometimes for some people. Who knows why? Not me. But, not them, either.

Maybe your doc is right. Maybe he's not. It doesn't really matter, though. The only thing that matters is that you have relief in a way that you can live with. I hope you find peace with Requip. If not, I'm glad something else is there for you that does work.

Guest · Post by **Guest** » Thu Jun 08, 2006 3:53 am

I suppose I was hoping that this new research was correct and I just did not stay on it long enough to let it work the last time.

the percacet has always worked, this has been the first time in my life that I have had this kind of a diffficulty getting it from my provider as my husband has gone active duty in the military, there are times when I get so frusterated getting my prescription refilled,,YOU can not imagine the hoops I go through to get it filled some months

when you have this kind of desease you wish for anything to make it better,, or easier to treat.

I suppose I am hoping this might help me and I am willing to try it again,, I am wondering if there are others out there that have gone off pain pills and these drugs have worked maybe I am reaching ,,

we all do at times

this desease makes us desperate for hope doesn't it??

becat · Post by **becat** » Thu Jun 08, 2006 5:25 am

Hi guest,
Welcome to the family here.
Yes, sometimes it feels deperate or hopeless as many of us old timers call it. But hang in there.
Get your old doc to write a lettr of suggestion for your treatment, maybe that will help. Following what works is always the best thing, because it can change on us all at any time. If the letter doesn't work print out tons of stuff from here, the Southern California RLS website, and there is also the WE Move Org. (mayo clinic's movement disorder board).
Don't ever NOT fight for what you know is the right thing to do. Ever. I know the military ways, they are whacco at best sometimes.
BTW, thanks for your service to the country by supporting your hubby and please thank him for his service for me. I love the military and those that support them.
The great thing is you can always go over your doc's head or get the company commandr involved. You might even offer to start a group there in the area or on base to educate others.
Honey, don't give up, you've got us now and we all really do care. Just keep coming back here, even just to say I'm having a bad day and need a hug.
We're here for you.
Yes, I'm on Percodan and with a little adjusting it's working fine for me most of the time.
Hang in there.
Lynne

Post by **ViewsAskew** » Thu Jun 08, 2006 5:27 am

It can and does make us hope, reach, think irrational thoughts, and become desperate.

I have a thought about why the Requip may not have worked before (and may not seem to work this time, at least at first). Stopping any opioid can lead to a bout of increased RLS. The body is used to those chemicals in the brain. When we take them away, it freaks out! Some people notice increased RLS for a period of time. I'm not sure how long, but I think some people have mentioned weeks, not days.

When you go off the Percocet, even if the Requip is working, it may not be able to compensate for the increased RLS. Of course, this is just a theory based on what I've heard people say happens when they stop opioids, so I don't know if it's true - it's just an idea I thought up. This could also affect how you dose the Requip. Doctors often have us keep increasing so much per week until it "works." But if you are one of those people whose RLS does increase for a time when you stop the Percocet, you might end up either on too high of a dose of Requip (you just don't need it - not that it would hurt you) or quit taking it thinking it doesn't work.

Of course, this is just speculation on my part.

cornelia · Post by **cornelia** » Thu Jun 08, 2006 9:28 am

I am almost positive that RLS will at first become very bad after quitting a narcotic, probably after stopping any med for RLS.

I tapered down only 450 mg of Neurontin and my RLS just went to the roof. It lasted 11 days before I reached a steady situation.

Corrie

Guest · Post by **Guest** » Fri Jun 09, 2006 7:04 am

hello everyone I am guest,, just was not loged in when I posted yesterday., thankyou for the replies.

Well I am going to stay on the Requip for awhile if I can tolerate it ,, then i well slowly try to ween myself off the percacet. I have tryed to do this in the past and most of you know the result of this,,,pure torture

This of course would be the ideal situation for me ,, I have found that in the past there is not ideal situation with RLS!!!

This desease,,,,,, will,,,,,, there are not words to describe what I want to say.

At this point I feel I have nothing to loose,,

Thankyou also Lynne your post meant allot to me,, vey sweet of you.

It is nice to know that I have found a place with others like me,