How do you feel about taking Opioids for RLS?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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QyX
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Location: Berlin / Germany

How do you feel about taking Opioids for RLS?

Post by QyX »

So I do have severe RLS and take 70 mg of Oxycodone, 200-250 mg of Tramadol and 0,18 mg of Pramipexole to manage my problems. After I have been really sick for 1 1/2 years where I lost almost all my social contacts, 20 pounds of weight and slept less then 10 hours per week for months this drug combination made it possible that I finally could start Med School at the age of 28. This gives me a very important perspective.

I do have a highly experienced and smart Doctor and the only other patients receiving Oxycodone from him have cancer. He is reasonable and pragmatic. If a patient would need Oxycodone he wouldn't hesitate to prescribe it but he def. doesn't overprescribe or easily writes prescriptions.

Today I was reading a lot about addiction, especially opioid addiction and found this documentation about Oxycodone/OxyContin on YouTube:

http://www.youtube.com/watch?v=kEA5GBRRSVA

I was somehow shocked when I saw this video.

I am now taking Oxycodone for 8 months and my dose is stable since 5 months. I don't benefit from higher doses and I never felt some kind of euphoria or a desire to take more. I think this is something good but I wonder what the consequences of long term use of strong Opioids are.

I also wonder what other people will think when I tell them that I take strong opioids, especially when taling to ppl from the medical community.

I am asking myself if it is really a good thing to take Oxycodone or am I risking to much? (I tried around 40 other drugs).

There are so many opinions regarding the long term use of strong opioids that I right don't know what is right and what to think.

At least it seems obvious that there are people who can't control the intake or drugs and need professional help.

Past week I also had a bad experience with a Doctor from the University clinic were I study Medicine. She became very aggressive when I asked her for a Oxycodone prescription. I had documents from the hospital which diagnosed me with RLS and as a 2nd opinion recommended long term Oxycodone treatment. I also a a couple of past Oxycodone prescription but that didn't help. So I had to call my old Doctor who simply mailed a prescription. (I had to move for Med School and don't have a new Doctor in my new town yet).

Sometimes I have the feeling that I am taking the easy way and not looking for "real" options outside the opioid world.

Sometimes I even really think that I am not sick at all and just looking for an excuse to take drugs. I know that especially this last sentence is pure nonsense because I suffered a lot and back then my Doctor was desperately trying to figure out what was wrong with me.

This all appears weird to me. I am thinking of asking my doctor to monitor me for addiction. It is likely that his response will be something like that he knows me for many years and that there are no sign that I am abusing drugs and I am not addicted. He then would tell me that I should focus on Med School and stop worrying.

EeFall
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Re: How do you feel about taking Opioids for RLS?

Post by EeFall »

Rarely do people who actually need an opioid become addicted to it as you are referring to in my opinion. I have been physically dependent on several opioids over many years but it was no big deal. When you actually require a drug to help you to live a normal life it is a good thing. People who get addicted to drugs like you are talking about don't need the drugs to help them with some medical problem, they seek out the drugs for the high, just for the fun of it period.

I have also taken some very strong opioids for weeks after surgeries and never had any problems. They are a godsend to those who need them like people like us with severe RLS/WED, our bodies need them to continue on normal lives, or fairly normal lives, and until a real cure is found we need them. I wouldn't spend my time worrying about becoming some drug crazed addict, but be thankful that there are medications out there like opioids that can help us.

ViewsAskew
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Re: How do you feel about taking Opioids for RLS?

Post by ViewsAskew »

You've tried many things. You have suffered tremendously. You've used opioids for a period with NO issues. You are aware that it could be a problem.

I see no issue.

The research I've seen (don't have it handy, but think it was done by Becker in Texas) shows that there are fewer problems with WED patients who take opioids than for other people who do. We rarely get addicted. I spoke with Dr Buchfuhrer about this a few years ago. He said he'd never yet had anyone become addicted. I don't know how many patients he sees, but I bet it's in the hundreds. I fly 1700 miles to see him. Other people here have, too. So, I know he must see quite a few of us. And he's been using methadone for many years. I first talked to him about it in 2005 when I met him at a conference.

The ability to get through school is critical. There is NO way you could do that and trial drug after drug. When you're through you can rethink it. Until then, pay attention. As long as you never take them except to control symptoms, do not have any strong desire, do not want to take them to get the feeling associated, etc, you're fine. Asking your doctor to check once in awhile can't hurt - statistically it is unlike you need it.
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.

Polar Bear
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Re: How do you feel about taking Opioids for RLS?

Post by Polar Bear »

Qyz - I often think about medications and the need for them. And really that is what it comes down to.
What is your alternative. How on earth would you cope with med school let alone anything else if your symptoms are not being controlled.
My opinion ?? If you need them, you need them.
We often do a comparison - diabetes/insulin.....

Don't beat up on yourself. Your need to get through med school and your need for symptom relief is greater (I feel) that any concern about the type of medication that is needed to control your disease.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

QyX
Posts: 686
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: How do you feel about taking Opioids for RLS?

Post by QyX »

I have no feeling associated with taking Opioids. The only thing that happens and ever happened was that my symptoms are highly reduced or go away completely. At the beginning I also was dealing with some side effects like nausea and it some weeks until I was able to take the dose of Oxycodone that was really necessary.

I never experienced that there is something else with it associated. This is why I have some problems understanding how can u possibly become addicted to it?

Fact is: lots of people have developed severe addiction. This is something that tells me to monitor my myself.

At the beginning my Doc was very worried that he had to prescribe me Oxycodone. It was obvious that there was no other solution. He told me that he is worried to cause an addiction. Know it is my impression that he has lost this anxiety.

Med School is 6 more years and after school comes work and it is unlikely that my disorder will just go away.

Let's just say people with WED/RLS have a very low risk to develop an opipid addiction ... then our brains really must be differ a lot from normal brains.

I have to admit that I am really curious and wonder what this mysterium opioid high is all about.

Looks like our brains simply can't experience it?

ViewsAskew
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Re: How do you feel about taking Opioids for RLS?

Post by ViewsAskew »

QyX wrote:I have no feeling associated with taking Opioids. The only thing that happens and ever happened was that my symptoms are highly reduced or go away completely. At the beginning I also was dealing with some side effects like nausea and it some weeks until I was able to take the dose of Oxycodone that was really necessary.

I never experienced that there is something else with it associated. This is why I have some problems understanding how can u possibly become addicted to it?

Fact is: lots of people have developed severe addiction. This is something that tells me to monitor my myself.

At the beginning my Doc was very worried that he had to prescribe me Oxycodone. It was obvious that there was no other solution. He told me that he is worried to cause an addiction. Know it is my impression that he has lost this anxiety.

Med School is 6 more years and after school comes work and it is unlikely that my disorder will just go away.

Let's just say people with WED/RLS have a very low risk to develop an opipid addiction ... then our brains really must be differ a lot from normal brains.

I have to admit that I am really curious and wonder what this mysterium opioid high is all about.

Looks like our brains simply can't experience it?


Interesting hypothesis. I do get a feeling from some of them - not a lot, but some. And, I HATE the feeling. Some of them make me grumpy, make my jaw clench, and make me snappy to the people around me. Like you, I've never had any euphoria.

Methadone, on the other hand, is different. I don't have a high, but rather I feel "normal". I have no symptoms, I feel like my old self, my pre-WED self. I like that, I admit. But, taking more of the drug doesn't make that more so. When I have more symptoms and I take an extra 5 mg, I don't get more of the feeling. So, there's no reason to take more of it.
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.

debbluebird
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Re: How do you feel about taking Opioids for RLS?

Post by debbluebird »

I agree with Ann. I have taken Oxy and now I take Methadone. I don't think the Oxy worked that well for me. Plus I didn't like how I felt. With the Methadone, at first I got nausea when I took 10 mg. So I kept it at 5 mg for awhile. Now I can take 10 mg without a problem. I have no other feeling other than it takes my WED and PLMD away.

badnights
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Re: How do you feel about taking Opioids for RLS?

Post by badnights »

"I also wonder what other people will think when I tell them that I take strong opioids"
My advice, from bitter bitter experience, is not to tell anyone you're taking opioids unless absolutely necessary, or unless you have built a strong bond of mutual trust. This would hold true for people from the medical community and from other walks of life, equally.
"There are so many opinions regarding the long term use of strong opioids that I right don't know what is right and what to think."
That's the key - there is nothing but opinions because data on long-term use are lacking. Do your best. If the drug lets you function and no other drug does, it would seem to me you lack much choice in the matter.

"Sometimes I even really think that I am not sick at all and just looking for an excuse to take drugs. I know that especially this last sentence is pure nonsense "
I, and probably others, have gone through this. Self-doubt happens when you've been brutalized and are still surrounded by people who don't comprehend what you're going through.

Perhaps it would be a useful bit of ammunition, for when you do have to tell people you take opioids, that WED patients have 30-40% less endogenous opioids in at least part of their brains. Autopsy results on thalamus of 5 patients, beta-endorphin 37.5% less and met-enkephalin 26.4% less (Walters et al presented at APSS meeting 2008; I don't know if it has been published but if you can find a published reference I would be extremely grateful for a copy, or just for the full citation.)

I also have never felt anything like a "high" from my meds. (Once I was effectively overdosing because I took too much of a ginseng supplement in addition to my meds over a number of days, and that was a scary and unpleasant feeling. ) I would suggest we don't get "high" because we are perpetually low, and taking the meds just makes us normal. So to speak.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

rthom
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Joined: Sat Dec 31, 2011 3:03 am

Re: How do you feel about taking Opioids for RLS?

Post by rthom »

badnights wrote:
"
I also have never felt anything like a "high" from my meds. (Once I was effectively overdosing because I took too much of a ginseng supplement in addition to my meds over a number of days, and that was a scary and unpleasant feeling. ) I would suggest we don't get "high" because we are perpetually low, and taking the meds just makes us normal. So to speak.


That is certainly true for me, I either feel nothing at all, or I'm likely overdosing and just feel like sh.. tired and that sort of thing. I never liked to take anything because of it, a real drag some thought. Hate dringking because of the increase symptoms and don't like to spend lots and take well over twice what anyone else takes, for something that basically leaves me feeling like I've taken gravol.

fraujoolie
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Re: How do you feel about taking Opioids for RLS?

Post by fraujoolie »

Dr B has reassured me that long-term use of methadone is a lot safer than the other opioids, because you can use a much smaller dose and get good relief. There is usually very little augmentation on methadone, too. I think it gets a bad rap because it can be abused, and it's what they give heroin addicts that are detoxing (in much higher doses than ours).
Methadone has never made me high, but the first time I took it, I felt like I was hit by a truck the next day. The worst hangover of my life. I had to quarter a 5 mg pill and work up from there. I have been on 10 - 15 mg for a few years now, no ramping up, no bad side effects. I even had a healthy pregnancy on it. Baby is now two and absolutely as healthy as a horse. I was terrified and guilty about giving this baby withdrawals, but he was *fine.*
Point being, I agree with Dr B, Methadone is safe in small and controlled doses.
Julie

debbluebird
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Re: How do you feel about taking Opioids for RLS?

Post by debbluebird »

I agree. At first when I started taking it two years ago I suffered extreem nausea. But then it went away after I reduced the dose. Then I was able to increase it later. No problem now.

EeFall
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Location: Washington State, USA

Re: How do you feel about taking Opioids for RLS?

Post by EeFall »

The fact is I would either be dead now or in a nut house without methadone. It keeps my symptoms away during the day so I can work and feel halfway normal. It helps a little at night too but currently I am not sleeping because without pramipexole I can't get to sleep and it started working against me again. Methadone even now though gets me through the day :mrgreen:

Polar Bear
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Re: How do you feel about taking Opioids for RLS?

Post by Polar Bear »

fraujoolie... I cannot believe that your little one is already 2 years :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: How do you feel about taking Opioids for RLS?

Post by badnights »

wow, I remember your pregnancy. I feel old :) lol
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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