I told myself I was not going to write this, I’m not a doctor nor do I have the right to tell anyone what not to take, especially if they are in pain and it appears to help.
But recent events, postings here and discussions with “real doctor” have caused me to at least put out a warning. The following is true as I remember it
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Like everyone else here I have tried everything, I or someone else could think of for relief. But lets go back to the beginning. My name is [dear poster] and I have put up with RLS attacks for 40 years. You should also know that besides having RLS I am an alcoholic and addict. (Pain pills were my drug of choice) I have been sober and clean since Jan 13th. 1991. And yes I attend, participate in and speak at 12 step meetings. I owe my life to those meetings and the people in them.
In 1963 I was discharged from the Air Force because I could not do 20-mile hikes. I really didn’t think too much about why. In 1972 my job involved driving a car 8, 10, 12 hours day. This is when the pain started in my calves. On a bad day I would get cramping at night. At this early time there was no “urge to move” that would come later. This went on for about 8 years. I found that a little drink helped the pain go away for a while. I found the BIG drink put the pain to sleep. And after a while I found that a bottle put [me] to sleep all night. It’s called “passing out”
I made my own wine so it was cheap and always available. The effect it had on my family was not good but this is not the place to discuss it.
I changed jobs to one where there was no driving, but I was on my feet all the time. The pain got worse and now the pain increased until I had to move my legs to get relief. (We have all been there). SO.. the drinking got worse, much worse. It was the only way I could sit still or sleep. I had opened my own business so coming home late became the norm.
A number of things happened in very quick succession, most of them very personal and not at all germane to this discussion. I quit the booze, lost the business and began seeing every doctor my ex could drag me to. She is a surgical assistant ant a large hospital and believe me she knew a lot of doctors.
This part of my story most of you have also gone through. Every doctor was sure that he or she knew want as wrong and every doctor was wrong!!! Most put me though tests, all the tests were normal. Two different times I was hospitalized for testing, once for 10 days. They did a spinal tap, a spinal block and muscle biology without antistatic. Yes that’s where they make a 6 inch cut in your calf and take a 4 inch chunk of muscle out while you just lay there. They said that antistatic would contaminant the specium. Results of all these tests, were the same as yours, they showed nothing. The only point I’m trying to make here is that we tried every avenue, including a “TENS’ unit, acupuncture, self hypnoses.
Along with all of this “Toro poo poo” my family doctor prescribed every pill, elixir and cream he could come up with.
Finally one day he prescribed “ Percodan” Oxcondin and aspirin. Wonder of wonders a half a pill at night and no pain. I could sleep. I was in heaven. The half a pill went to a whole pill in less them a week. And then 2,3,4. One in the morning until I was taking 15 plus pills a day. You see your body creates the pain it needs to get more drugs. I was also getting terrible stomach aches. The aspirin was burning holes in my stomach. OK, we switched to Percocet, the Vicodin of the 80’s. No more stomach pain. 16 pills 18 pills 25 a day.
But hey I was indestructible (just like you). Who cares if I‘m an addict I could handle it. (Just like you ???)
There was no “web” so I went doctor shopping. That’s where you tell more than one doctor the same sad story and each writes a script for 10 or 15 a day. Then you go to another and another ……
I could handle it and besides “the only person I’m hurting it me” Anyone else ever said that???
Some where between 30 and 35 pills a day I agreed to go into the Cleveland Clinics Chronic Pain unit. Before they can treat the pain you had to be drug free!
With drawing from Oxys is not fun. Even in the hospital, with them supplying you with “other drugs” cramps, throwing up and diarrhea are some of the easier side effects.
On the 21st day of a 28-day, they had found nothing and I was still addicted, so they were going to ship me the addiction floor. So I left!!
I finished detoxing at home and on Sunday Jan 12th 1991 I walked into my first 12 step meeting. Just as a side note: after the meeting I flushed the rest of my stash down the toilet.
The rest of the story. Doctors will tell you anything. Most times they really aren’t lying they’re just guessing and they will say anything not to look stupid.
Ox condone in any form is highly addictive to everyone. Period End of sentence.
Narcotics are not the answer to RLS
About a year ago I found a doctor who was treating a number of people with RLS. And I have been doing surprising well.
That’s my story and this is my warning. Treating RLS with Oxycondone cost me a wife, a daughter, a house, a job and more than a few friends.
But this can’t happen to you…… or can it?
[edited by RLS Foundation at request of original poster to remove references to poster's name]
Oxcondone Warning
[dear poster]
It's a lot more about understanding that opioids must be managed with an iron fist. If you have an addictive personality and do not have the willpower to wield that iron fist, then yes, opioids of almost any variety are a terrible idea.
However, for some of us, it's quite possible to be on opioids for a long time. We understand that the relief felt on day one cannot be expected on day thirty, and we accept that without increasing the dose. One cannot expect to remain opioid-naive. However, the tolerance one develops to an opioid does plateau at a certain point for a certain dose, and what remains is often still sufficient to make life livable.
There's also the issue of being absolutely certain you never take an iota more than you need. I've had two doctors confirm a theory of mine, which is that when you take more than you have discomfort to consume, the excess is what creates tolerance and dependence. Some people take enough to conceal their discomfort, while others think they need to take enough to feel really good. Given your addictive tendencies, you may be in the latter group. It's certainly an understandable urge, but it's not physiologically practical in the long run.
I personally have been on an opioid, or opioid analogue, for most of the last four years. I'm currently on oxycodone's little brother, hydrocodone. I have a prescription for 10mg a day. I do not *ever* go over 10mg, because I *know* what will happen: tolerance. It doesn't matter if it's not enough on a given day. I don't go over. Period. If summer rolls around and 10mg is simply not enough during that peak season, I will supplement with a non-opioid, because I don't ever want to develop a tolerance to the drug that makes most of the year livable.
I understand your story, and I don't doubt that it happened the way you say, but I must stress to you that your circumstances are not really commonplace. Your warning is a worthy caution for some people, just not a blanket disqualification of opioids for all.
It's a lot more about understanding that opioids must be managed with an iron fist. If you have an addictive personality and do not have the willpower to wield that iron fist, then yes, opioids of almost any variety are a terrible idea.
However, for some of us, it's quite possible to be on opioids for a long time. We understand that the relief felt on day one cannot be expected on day thirty, and we accept that without increasing the dose. One cannot expect to remain opioid-naive. However, the tolerance one develops to an opioid does plateau at a certain point for a certain dose, and what remains is often still sufficient to make life livable.
There's also the issue of being absolutely certain you never take an iota more than you need. I've had two doctors confirm a theory of mine, which is that when you take more than you have discomfort to consume, the excess is what creates tolerance and dependence. Some people take enough to conceal their discomfort, while others think they need to take enough to feel really good. Given your addictive tendencies, you may be in the latter group. It's certainly an understandable urge, but it's not physiologically practical in the long run.
I personally have been on an opioid, or opioid analogue, for most of the last four years. I'm currently on oxycodone's little brother, hydrocodone. I have a prescription for 10mg a day. I do not *ever* go over 10mg, because I *know* what will happen: tolerance. It doesn't matter if it's not enough on a given day. I don't go over. Period. If summer rolls around and 10mg is simply not enough during that peak season, I will supplement with a non-opioid, because I don't ever want to develop a tolerance to the drug that makes most of the year livable.
I understand your story, and I don't doubt that it happened the way you say, but I must stress to you that your circumstances are not really commonplace. Your warning is a worthy caution for some people, just not a blanket disqualification of opioids for all.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
Hi [dear poster],
As a recovering addict I can identify and sympathize with your situation. As anyone who has read my posts knows I have had lots of trouble with pain killers of every sort.
That being said, I just can't agree with the sentiment that "narcotics are not the answer to RLS".. It just isn't that simple unfortunately.
I'm not trying to rip you a new one or anything, but I have too many times heard many a person who has dealt with addiction in the past talk about their drug of choice not being the answer for anything, and I just don't see the logic in that line of thought.
Addiction is a deeply personal issue. Some people can take their pain meds properly and not bat an eye; they are the lucky ones for sure.. I don't buy into all this talk about addiction being a disease, but I do believe some people are born and due to upbringing and choices / experiences in their lives, can be predisposed to addictive behavior, especially involving substance abuse.
I treat it more like any other preference for something. Whether you like the color blue, or sweet foods, or that special favorite food. That's how I regard and deal with addiction.
Oxycodone is an extremely powerful drug, and the makers of the drug have been in trouble the past few years for "lying", or as some people say not revealing / "failing to disclose" just how addictive it is.
Because of our medical system, and a lot of doctors as you point out, "guessing" at what to prescribe for a lot of problems, and unfortunately because some doctors abuse their prescribing privileges, it has all added up to a nationwide problem with Oxycodone in particular. The stuff is everywhere, supplanting crack and even heroin in some markets as a cheaper and more readily available solution and sadly when considering the alternatives, a slightly safer high.
However, narcotics have been widely recognized by RLS experts, who we can give the benefit of the doubt and assume have studied their claims, as one of the single most effective drugs in treating RLS when other medications or treatments have failed.
I don't think anyone advocates narcotics as a front-line drug for treating RLS, but there are people out there with severely difficult cases. Requip, Mirapex, Levodopa either don't work or in more than one case actually make the RLS worse. If iron therapy or acupuncture, lifestyle and diet changes don't work - where else can somebody turn?
There is nothing wrong with treating RLS with narcotics in my opinion.. The responsibility falls onto the Doctor being educated and experienced in proper painkiller prescription management. Learning to isolate offenders and finding other solutions to treat them is all that needs be done.
I would be dead right now if it weren't for narcotics. I have 24/7 refractory RLS that does not respond to anything BUT narcotics.. Levodopa augments within days and severely intensifies my symptoms, Requip is 50/50 hit and miss with nausea and headaches, and Mirapex made it worse for 24+ hours after 1 pill out of the trial pack.
I am now taking methadone, and there a several members who also do this. It was worked great for us with very little problems or dosage increases and I would consider myself an advocate for methadone for RLS even over other narcotics. However methadone comes with its own problems to deal with should someone ever have to stop, or become cut off from a doctor willing to prescribe it. It's a risk to live with I guess.
I'm curious if, in light of your behavior anyone ever offered you methadone? It has many legitimate uses beyond heroin addiction treatment; obviously its good for RLS if it works for the patient, and also many chronic pain patients benefit from it as well. THe social stigma of everyone being on methadone being a drug addict (although partly true in my case) is unfortunate I think.
But narcotics are a perfectly acceptable solution for RLS in my book. They are just something that should be tried only when other treatments don't work.
As a recovering addict I can identify and sympathize with your situation. As anyone who has read my posts knows I have had lots of trouble with pain killers of every sort.
That being said, I just can't agree with the sentiment that "narcotics are not the answer to RLS".. It just isn't that simple unfortunately.
I'm not trying to rip you a new one or anything, but I have too many times heard many a person who has dealt with addiction in the past talk about their drug of choice not being the answer for anything, and I just don't see the logic in that line of thought.
Addiction is a deeply personal issue. Some people can take their pain meds properly and not bat an eye; they are the lucky ones for sure.. I don't buy into all this talk about addiction being a disease, but I do believe some people are born and due to upbringing and choices / experiences in their lives, can be predisposed to addictive behavior, especially involving substance abuse.
I treat it more like any other preference for something. Whether you like the color blue, or sweet foods, or that special favorite food. That's how I regard and deal with addiction.
Oxycodone is an extremely powerful drug, and the makers of the drug have been in trouble the past few years for "lying", or as some people say not revealing / "failing to disclose" just how addictive it is.
Because of our medical system, and a lot of doctors as you point out, "guessing" at what to prescribe for a lot of problems, and unfortunately because some doctors abuse their prescribing privileges, it has all added up to a nationwide problem with Oxycodone in particular. The stuff is everywhere, supplanting crack and even heroin in some markets as a cheaper and more readily available solution and sadly when considering the alternatives, a slightly safer high.
However, narcotics have been widely recognized by RLS experts, who we can give the benefit of the doubt and assume have studied their claims, as one of the single most effective drugs in treating RLS when other medications or treatments have failed.
I don't think anyone advocates narcotics as a front-line drug for treating RLS, but there are people out there with severely difficult cases. Requip, Mirapex, Levodopa either don't work or in more than one case actually make the RLS worse. If iron therapy or acupuncture, lifestyle and diet changes don't work - where else can somebody turn?
There is nothing wrong with treating RLS with narcotics in my opinion.. The responsibility falls onto the Doctor being educated and experienced in proper painkiller prescription management. Learning to isolate offenders and finding other solutions to treat them is all that needs be done.
I would be dead right now if it weren't for narcotics. I have 24/7 refractory RLS that does not respond to anything BUT narcotics.. Levodopa augments within days and severely intensifies my symptoms, Requip is 50/50 hit and miss with nausea and headaches, and Mirapex made it worse for 24+ hours after 1 pill out of the trial pack.
I am now taking methadone, and there a several members who also do this. It was worked great for us with very little problems or dosage increases and I would consider myself an advocate for methadone for RLS even over other narcotics. However methadone comes with its own problems to deal with should someone ever have to stop, or become cut off from a doctor willing to prescribe it. It's a risk to live with I guess.
I'm curious if, in light of your behavior anyone ever offered you methadone? It has many legitimate uses beyond heroin addiction treatment; obviously its good for RLS if it works for the patient, and also many chronic pain patients benefit from it as well. THe social stigma of everyone being on methadone being a drug addict (although partly true in my case) is unfortunate I think.
But narcotics are a perfectly acceptable solution for RLS in my book. They are just something that should be tried only when other treatments don't work.
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
Hi [dear poster],
I am very sorry that your treatment with narcortics turned out to be a terrible experience for you.
I am another RLSer's who has been taking narcotics (Hydrocodone) for well over 10 yrs, and instead of increasing my intake I have actually been able to decrease the number of pills prescribed for me each month. I use to have 90 per month or 3 aday. I now get 30 pills a months and supplement it with the use of Ultram(tramadol).
I have never felt any high after taking hydrocodone, only relief from my rls, I am one of the lucky RLSer's since mine is usually always at night, with only daytime rls every once in while. I have discovered that if I take the pill before the rls starts, then I need less medication.
I have primary RLS which means I was born with rls, inherited from my mother and grandmother, so I suffered nightly with rls for over 30 yrs. Walking the floor and living on 2-4 hrs of sleep, while living life and raising a family. I only have to think back to those times to KNOW that I will never become addicted to hydrocodone, as its has been about the only thing that will always stop my rls, and I will not take a chance of losing that prescription.
Actually according to the rls information, most RLSer's will not become addicted. Of course there is always the few who will do so.
Both my Dr's would rather I take these meds, than the Parkinson meds, as they believe there is less side affects. Of course they both know I am very careful when using these drugs.
Again I am very sorry that you had such a horrid experience with using narcotics. But as others have stated, many many RLSer's use narcotics and have for many yrs without addiction.
I hope you have found something that helps you control you rls, as there are many different meds available for rls.
Just the thought of having nightly attacks of RLS will always keep me inline about how much hydrocodone/Ultram I take.
I am very sorry that your treatment with narcortics turned out to be a terrible experience for you.
I am another RLSer's who has been taking narcotics (Hydrocodone) for well over 10 yrs, and instead of increasing my intake I have actually been able to decrease the number of pills prescribed for me each month. I use to have 90 per month or 3 aday. I now get 30 pills a months and supplement it with the use of Ultram(tramadol).
I have never felt any high after taking hydrocodone, only relief from my rls, I am one of the lucky RLSer's since mine is usually always at night, with only daytime rls every once in while. I have discovered that if I take the pill before the rls starts, then I need less medication.
I have primary RLS which means I was born with rls, inherited from my mother and grandmother, so I suffered nightly with rls for over 30 yrs. Walking the floor and living on 2-4 hrs of sleep, while living life and raising a family. I only have to think back to those times to KNOW that I will never become addicted to hydrocodone, as its has been about the only thing that will always stop my rls, and I will not take a chance of losing that prescription.
Actually according to the rls information, most RLSer's will not become addicted. Of course there is always the few who will do so.
Both my Dr's would rather I take these meds, than the Parkinson meds, as they believe there is less side affects. Of course they both know I am very careful when using these drugs.
Again I am very sorry that you had such a horrid experience with using narcotics. But as others have stated, many many RLSer's use narcotics and have for many yrs without addiction.
I hope you have found something that helps you control you rls, as there are many different meds available for rls.
Just the thought of having nightly attacks of RLS will always keep me inline about how much hydrocodone/Ultram I take.
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ViewsAskew
- Moderator
- Posts: 16744
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Sacramento, CA, USA
This is such a sticky subject. I truly feel for anyone who's become addicted - not a fun thing at all.
Like others who have written, I've not had too many problems, though I have had to increase my dosage. The first time was only a few months after starting and I was very worried. Two different doctors said they felt that we just didn't have the right dose in the first place. So, we increased. I stayed there for over two years.
A few months ago I was trying to decrease my dosage in general, so was also taking a small amount of a dopamine agonist and I augmented. Afterward, I needed more opioid to handle the increased RLS. It dropped back a bit after a few weeks, but I still need a bit more than I used to.
That does concern me that I'll keep needing more and more. If so, what will I take when I hit the upper limit (30 mg for what I'm taking)? At the rate I'm going it will be two to three years before that happens, and then another couple years before I'd need more. But, at that point, I may have a problem.
It's important - at least the way I see it - that we all know the risks. And every one of us sharing what works and what doesn't work is part of ensuring that happens.
Like others who have written, I've not had too many problems, though I have had to increase my dosage. The first time was only a few months after starting and I was very worried. Two different doctors said they felt that we just didn't have the right dose in the first place. So, we increased. I stayed there for over two years.
A few months ago I was trying to decrease my dosage in general, so was also taking a small amount of a dopamine agonist and I augmented. Afterward, I needed more opioid to handle the increased RLS. It dropped back a bit after a few weeks, but I still need a bit more than I used to.
That does concern me that I'll keep needing more and more. If so, what will I take when I hit the upper limit (30 mg for what I'm taking)? At the rate I'm going it will be two to three years before that happens, and then another couple years before I'd need more. But, at that point, I may have a problem.
It's important - at least the way I see it - that we all know the risks. And every one of us sharing what works and what doesn't work is part of ensuring that happens.
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.
i am sorry for what has happend to you. i have been taking percodan for rls now for better than ten years, one tab about 30min before bed it works better than any drug i have ever tried, i see only one doc whom i have known for 30yrs. hope you can find something that works foe you. you are in my prayers tonite. your friend in suffering bnrobert
I too have to disagree, about narcotics being bad for people with RLS, and addictive. I've been taking 1 hydrocodone and 1.5 percocet every night for about 10 years, at the advice of my neurologist and family doc. Absolutely NO temptation to increase or take more during the day. They started not working quite as well, and my doc talked me into trying Mirapex last week. What a miracle drug for me! I've been sleeping the best I have for years and years. AND, absolutely no withdrawal symptom from not taking percocet.... have gone several days without taking any at all. Been taking 1 hydrocodone with the Mirapex, as the Mirapex made me hyper the first night, and I'm doing really well with both right now (doc said it was fine to do it this way). I'm waking up during the night once, but no RLS!.... and my morning is free of the anxious feeling of having to get out of bed. Total relief and feeling like a normal person again! Most important for this thread, though, is that I've taken percocet for years and had no withdrawals going cold turkey.
"Be still and know that I am God"
Psalm 46:10
Psalm 46:10