Suboxone for RLS (wonderful medication for mine)

[rlsgirl]

RLs is known to fluctuate with your natural body clock, so people often goes through phases where they will sleep through the morning, or the day and be up/work at night. Only to have the RLS flip back on them so they have to do totally reverse.

Has your husband ever attended your appointments with you? Perhaps talking to this doctor and bringing up (even if he doesn't want you to) your husbands opinions about the pain meds, and getting your doctor to talk to him and address his concerns will help, if you haven't tried this already..

Also as far as surgery, major injuries etc.. You can still receive less powerful painkillers and stuff while on methadone with the only difference being it blocks the high but not the pain relief they bring.. At least that's how I understand it.. As for Suboxone? I honestly don't know. Because of the whole having to be in withdrawal and severe competition for receptor space with other medications that is a good question to ask him.

It may turn out you don't need to worry and can receive those other meds you may need, if you ever need them.. Also if you carry around an info card in your wallet that can be easily located, that might help too. If you are ever brought into a Hospital for a catastrophic incident and are not awake, or barely responsive they can hopefully find the card and see that you are taking Suboxone/Subutex for Restless Legs Syndrome, and have your doctors name and phone number on it too.

Hopefully he will give you a reassuring answer, but I would think in the case of say a broken leg or something, there is likely the chance you can just temporarily increase your Suboxone dose to deal with the extra pain, and then taper it back down to your previous level. Remember, although these kinds of drugs are for addiction management, they too are also VERY powerful and effective painkillers.. The whole idea behind methadone and suboxone is to replace illegal street drugs with safe prescribed and strictly controlled legal opiates, to manage a patients addiction, and in a lot of cases wean them down completely.

A little bit off topic, but believe it or not I think you can still receive prescriptions for medical grade Heroin in the UK (or in Europe somewhere). Just like other opiates, it is one of the most powerful ever discovered/manufactured.

Actually, he has been going with me to the addiction specialist ever since I started going. This dr. I believe is giving him a better understanding of what is actually going on. In his mind he was thinking that my addiction was due to me wanting to be high but he has learned that its just the opposite. He has been working very hard to get me through all of this and is trying real hard to understand. However, he did not understand it before and I really wonder how much of it he is really understanding or is he just trying to be very supportive? As of right now he is being very supportive and has not questioned me. I also think that sometimes because of his job he has a hard time seperating the two. Being my husband and helping through a drug addiction and being a cop and seeing me as a drug addict. I think that its hard for most people to see a family member having an addiction but not understanding how it happened and wondering if they became addicted they wanted to be high or because of another problem. He questioned me quite abit about the high issue and I don't believe he believed me until he sat in the drs. office with me. He has been to every one since I've started and sees how it has come to face. I have even taken him to 3 of my counceling appts. so he can get an even bigger understanding. Bad thing is that I still feel like a jackass myself. I feel like I have let my whole family down sometimes. No ones mom is suppose to be an addict of pain killers and I hate that I had to tell my kids what was going on with me. I sit in church on Sunday and think to my self that I should not even be there being what I am today. I know that all of that is my own hang up and i'm working on that but jesus its hard sometimes for me to even understand how in the world i got to this point. All I want is to be my normal self and live my life without my legs freaking out.

[Neco]

Yeah it sounds like you have a bit of work to do. I've only recently come out of the denial stage, but I don't think I have ever been as near self degrating as what you're going through..

If church is your thing, then you should remember what the book you follow teaches. Forgive yourself, and move on, and everything will be OK in the eyes of your diety. At least that's what I understand to be the real message of believing in a god to be. The whole point of going to church and confessing your sins during prayer and asking for forgiveness is exactly that. Forgive yourself, believe that god forgives you, and live a happy life. In the end try to remember you have really done nothing wrong, the real sinners are the doctor's who did not pay appropriate attention to your RLS and give you the proper attention and care.

Just try and remember, you only have those feelings because society as a whole unfairly pins them on us, and ingrains these preconceptions of what is appropriate into our minds from a very early age. Almost a form of brainwashing. For me personally, if people really care to know I'll tell them I take methadone for my RLS, and if they really press me I'll tell them I'm a recovering addict; and if they don't like that, they can shove off. You don't need people like that in your life where they can be avoided.

Even if your husband never really understands, the important thing is that he is being supportive and that is just as good as opposed to not understanding or tolerating it at all.. It's sad to mention, but RLS and the painkillers or other drugs that go with it has been responsible for ending quite a few marriages. The important thing is to do everything you can, not to let it get to that stage if anything can be done to help your loved ones understand. If you haven't done so already, the next time you discuss your RLS, tell him that you are happy for his support, and even if he doesn't fully understand you understand that, but his support is all you need to keep going.

[Aiken]

I have been to all 7 drs. in this area that deal with this and everytime I told them that I get it so bad that It actually goes in my arms they all told me that rls does not effect the arms and they did not understand why I would be having that.

That just makes me mad. That's literally malpractice. Those doctors were making the wrong medical decisions, based on ignorance of things that are their job to know.

If a doctor hasn't studied a disease well enough to know for certain that they know what they're talking about, they should shut the hell up and send the patient to someone who does.

Overconfident know-it-all doctors just piss me off.

[Neco]

I know we latch onto and beat that dead horse into the ground a lot, but 7 doctors sounds like 7 new letters to the American Medical Association Board.

[rlsgirl]

I have been to all 7 drs. in this area that deal with this and everytime I told them that I get it so bad that It actually goes in my arms they all told me that rls does not effect the arms and they did not understand why I would be having that.

That just makes me mad. That's literally malpractice. Those doctors were making the wrong medical decisions, based on ignorance of things that are their job to know.

If a doctor hasn't studied a disease well enough to know for certain that they know what they're talking about, they should shut the hell up and send the patient to someone who does.

Overconfident know-it-all doctors just piss me off.

Totally true! It seems as if the Drs. don't listen to what you are saying. The go on only the basics of what they know and look at you like you have lost your freaking mind when you tell them what your experiencing. With this condition being so wide spread they should be educating themselves more rather than the patient having to educate them. Also, if the drugs used to treat this condition are not working for the patient then they need to move on to others rather than telling a patient that some people with rls just have to suffer. Why are you a Dr. if your not going to do everything you can to try to help people. If as a Dr. you do not know what to do then why not seek out another Dr. who maybe does and get some advise rather than just pushing a patient behind the door. It all just makes me sick. I was honest with my dr. about what was going on and he flat out told me that he would continue to treat me but would not give me pain killers of any kind any more. Well hell, if nothing else works for me than what am I to do? Oh yea I forgot, I just have to suffer with it as he says. BS if you ask me! I have given up on them. If for some reason I can not continue on the Subutex then I will spend the money and go to the mayo clinic to donate my body for them to study this condition!

[rlsgirl]

Yeah it sounds like you have a bit of work to do. I've only recently come out of the denial stage, but I don't think I have ever been as near self degrating as what you're going through..

If church is your thing, then you should remember what the book you follow teaches. Forgive yourself, and move on, and everything will be OK in the eyes of your diety. At least that's what I understand to be the real message of believing in a god to be. The whole point of going to church and confessing your sins during prayer and asking for forgiveness is exactly that. Forgive yourself, believe that god forgives you, and live a happy life. In the end try to remember you have really done nothing wrong, the real sinners are the doctor's who did not pay appropriate attention to your RLS and give you the proper attention and care.

Just try and remember, you only have those feelings because society as a whole unfairly pins them on us, and ingrains these preconceptions of what is appropriate into our minds from a very early age. Almost a form of brainwashing. For me personally, if people really care to know I'll tell them I take methadone for my RLS, and if they really press me I'll tell them I'm a recovering addict; and if they don't like that, they can shove off. You don't need people like that in your life where they can be avoided.

Even if your husband never really understands, the important thing is that he is being supportive and that is just as good as opposed to not understanding or tolerating it at all.. It's sad to mention, but RLS and the painkillers or other drugs that go with it has been responsible for ending quite a few marriages. The important thing is to do everything you can, not to let it get to that stage if anything can be done to help your loved ones understand. If you haven't done so already, the next time you discuss your RLS, tell him that you are happy for his support, and even if he doesn't fully understand you understand that, but his support is all you need to keep going.

I have had a very hard time with all of this Zach. I have always been a woman that people have looked up to as being someone who has my sh** together, very strong, and very respected. I feel like I have lost every bit of that. Even though no one knows what is going on I just don't feel the same about my self anymore. I feel as if I have not only let myself down but everyone around me that depends on me to be the person they think I am. I just don't feel like that person anymore. I feel like I'm completely out of control like I'm having an out of body experience of some kind. Can you relate to that at all? I feel like I'm all alone with those feelings. Maybe its normal for someone to feel this way in this situation. I really feel like a jack **** when I talk to a counceler. I think the whole time driving there "how the hell did I ever get to the point in my life that I need to talk to someone about my life, my issues, and how to make things in my life better". I really hate it!

[Neco]

Don't take this post the wrong way.. I just think I need to bring out a little "tuff love" and positive image reinforcement...


I don't know if I can say I have ever felt like what you are going through... Mainly because we are all different, and rationalize things in different ways..

For you, I think it is important to do one thing. Seperate fact from fiction. All this talk about addiction really is splitting hairs, and it is causing you unneeded mental anguish. The fact is based on what you've told us, I really don't see you displaying addictive behavior. The behavior you displayed is something all of us here have dealt with.

You are a person who was suffering from a devastating legitimate medical condition, desperately seeking proper treatment. You didn't let anyone down, I don't care what anyone else tells you. The only people letting others down in your situation was the doctors failing to treat you properly, then casting you aside when they realized they didn't know what they were doing. A person in pain or agony of any kind (and there are many kinds of legitimate pain aside from "omg ouch" ), has the right to seek pain medication to relieve their suffering without being called an addict. They aren't seeking this medicine to have a good time, or throw a party and get wasted. They just want to end their misery so they can make it through the rest of the day. One day at a time!

The first step to recovering your self esteem and the self esteem of your morale disposition is to accept the fact that despite everything, you aren't an addict. Not based on what I have read. You were given medications by doctors to take for your RLS and in some cases they were adjusted, but those adjustments didn't work as they were intended and you kept finding yourself with a lack of relief because the medication was wearing off too fast, and may have also been prescribed in insufficient quantities.

You are rlsgirl, and you have RLS that has forced you to depend on opiates to maintain your quality of life. That doesn't make you an addict in any way, no matter how any doctor tries to spin it. You need to come to grips with that fact, because you keep treating yourself like something you are NOT. You didn't let anyone down. You didn't "end up" or put yourself in a situation, most certainly NOT because you screwed up in any way or failed to be an example to everyone else.

The doctors screwed up. Your RLS screwed up. Being treated like a whining kid making up pain by others screwed you up, and you are not to blame. The bad times you went through, struggling to get through the day, to take care of your kids and other family, whatever you weren't able to do - it wasn't your fault. It was the ignorant doctors who did not provide you the proper treatment, that prolonged your suffering.

Your life has improved substantially since these experiences. Even though you are seeing an addiction specialist to get the proper medication that you need, and whether or not he sees you as an addict in some way, or not at all, doesn't matter. When people ask you "How could you get addicted to pain pills?" You don't answer by putting yourself down. You stick up for yourself and say

"Excuse me? I was never addicted to pain pills. I took them because I was in pain, and because none of my doctors understood my illness. They didn't know what they were doing and didn't give me pain pills that lasted long enough. Now I am seeing a doctor who recognizes my illness and knows how to treat it with a pill I only have to take once a day. I don't know who told you I was addicted to pain pills, or who made you an expert on my disease, but they are full of crap"


Try and take this advice to heart. I'm not belittling you for not sticking up for yourself. Otherwise I would be just as bad and cruel as those in your life who refuse to acknowledge the legitimacy of your RLS. I'm just trying to get you to see it is not your fault and that you never let anyone down.

I too have been a victim of bad medicine, and psychological practices that happened in my childhood, being told I had all these problems. Then one day I cracked and GAVE them all the problems they told me I had, and made THEM deal with the results of my acting out. It seriously screwed me up for life, and I'm still trying to recover from it.

It pains me every time I see someone who is the victim of circumstance, being made to feel like they are the cause of their situation, they caused their problems, when clearly others were at fault and they are just being scapegoated and labled to justify some idiots screwup.

[Neco]

http://en.wikipedia.org/wiki/Buprenorphine

I also wiki'd Suboxone/Subutex (buprinorphine) to very some of the things I have said, and also to provide a comprehensive link to information for anyone wanting to look into it for curiousity, or treatment of their RLS.

As I suspected it is extremely powerful, stated to be 25 - 40 times as powerful as morphine. So definitely understandable that your RLS is under control.

Also my assertion that the naloxone additive formulas likely won't bother RLS patients seems to be repeated in a section of the Wiki describing it's various brand names, and preparations over the years.

[SquirmingSusan]

I have had a very hard time with all of this Zach. I have always been a woman that people have looked up to as being someone who has my sh** together, very strong, and very respected. I feel like I have lost every bit of that. Even though no one knows what is going on I just don't feel the same about my self anymore. I feel as if I have not only let myself down but everyone around me that depends on me to be the person they think I am. I just don't feel like that person anymore. I feel like I'm completely out of control like I'm having an out of body experience of some kind. Can you relate to that at all? I feel like I'm all alone with those feelings. Maybe its normal for someone to feel this way in this situation. I really feel like a jack **** when I talk to a counceler. I think the whole time driving there "how the hell did I ever get to the point in my life that I need to talk to someone about my life, my issues, and how to make things in my life better". I really hate it!

Wow. Just wow. Sometimes life throws really hard lessons our way. One of the hardest lessons is when we need to learn to redefine ourselves based on what we really are, rather than what we think others think we are. How can you possibly know what kind of person people think you are and depend on you to be? Do they tell you that you have to be strong and in control and never have problems? What makes you think that these people can't handle life if you're not who you think that they think you are? I don't want you to feel like I'm attacking you here.

What I'm really trying to say is, RLSgirl, cut yourself some slack! Let others be responsible for their own lives. Be who you are, rather than who you think you need to be. And if the people around you are good, quality people, they'll accept you the way you are. If not, you don't need the jerks in your life. I've been through similar identity crises in my life, and it's hard to get through. There's this huge inner conflict between what you think you are, and what you think you should be, and the reality of who you are. You'll get through it and be a better person for it all.

Counseling is great for dealing with issues like this. But it doesn't sound like you need counseling for a drug addiction. You're not a drug addict! You're someone who needs medication to treat a legitimate medical condition; just like someone who has high blood pressure needs medication to treat that. No doctor would accuse someone with high blood pressure of "drug seeking" and addictive behavior for trying to get adequate medication to treat their condition.

It sounds like you need to "come out" to a chosen few people about what you are dealing with and check their reactions and perceptions of you. I think you'll find that others are much more accepting of you than you are of yourself. Try to imagine if someone else came to you with your story. Would you be so harsh on another person?

One thing that I've found extremely useful in understanding myself and my own distorted perceptions of myself is the enneagram. It's all about personality types and how we distort reality. Every type has it's own patterns. You can Google the word and find good websites about it, or you can click the link in my profile. It can be a real shortcut through counseling and it can help put things in perspective.

There is no shame in having as medical condition.

[ViewsAskew]

RLSgirl, this may be off base, but it seems to me that sometimes when we are so so hard on ourselves, it's because we see something that we'd despise in someone else, so we assume others would judge us the way we're judging ourselves.

Zach and Susan have made some excellent points. Only you can decide why you are ultimately upset with yourself and why you feel you've let yourself down and aren't living up to your expectations. Maybe acknowledging that is halfway to letting go of it. I don't really know.

[rlsgirl]

RLSgirl, this may be off base, but it seems to me that sometimes when we are so so hard on ourselves, it's because we see something that we'd despise in someone else, so we assume others would judge us the way we're judging ourselves.

Zach and Susan have made some excellent points. Only you can decide why you are ultimately upset with yourself and why you feel you've let yourself down and aren't living up to your expectations. Maybe acknowledging that is halfway to letting go of it. I don't really know.

YOur exactly right. The issues that I'm having did not happen over night and are not going to fix themselves over night. I just never saw myself ever having problems like this from this condition. I'm working on it and I'm sure I will get past it in time. Thanks for your words I really do appreciate it more than you know.

[rlsgirl]

Don't take this post the wrong way.. I just think I need to bring out a little "tuff love" and positive image reinforcement...


I don't know if I can say I have ever felt like what you are going through... Mainly because we are all different, and rationalize things in different ways..

For you, I think it is important to do one thing. Seperate fact from fiction. All this talk about addiction really is splitting hairs, and it is causing you unneeded mental anguish. The fact is based on what you've told us, I really don't see you displaying addictive behavior. The behavior you displayed is something all of us here have dealt with.

You are a person who was suffering from a devastating legitimate medical condition, desperately seeking proper treatment. You didn't let anyone down, I don't care what anyone else tells you. The only people letting others down in your situation was the doctors failing to treat you properly, then casting you aside when they realized they didn't know what they were doing. A person in pain or agony of any kind (and there are many kinds of legitimate pain aside from "omg ouch" ), has the right to seek pain medication to relieve their suffering without being called an addict. They aren't seeking this medicine to have a good time, or throw a party and get wasted. They just want to end their misery so they can make it through the rest of the day. One day at a time!

The first step to recovering your self esteem and the self esteem of your morale disposition is to accept the fact that despite everything, you aren't an addict. Not based on what I have read. You were given medications by doctors to take for your RLS and in some cases they were adjusted, but those adjustments didn't work as they were intended and you kept finding yourself with a lack of relief because the medication was wearing off too fast, and may have also been prescribed in insufficient quantities.

You are rlsgirl, and you have RLS that has forced you to depend on opiates to maintain your quality of life. That doesn't make you an addict in any way, no matter how any doctor tries to spin it. You need to come to grips with that fact, because you keep treating yourself like something you are NOT. You didn't let anyone down. You didn't "end up" or put yourself in a situation, most certainly NOT because you screwed up in any way or failed to be an example to everyone else.

The doctors screwed up. Your RLS screwed up. Being treated like a whining kid making up pain by others screwed you up, and you are not to blame. The bad times you went through, struggling to get through the day, to take care of your kids and other family, whatever you weren't able to do - it wasn't your fault. It was the ignorant doctors who did not provide you the proper treatment, that prolonged your suffering.

Your life has improved substantially since these experiences. Even though you are seeing an addiction specialist to get the proper medication that you need, and whether or not he sees you as an addict in some way, or not at all, doesn't matter. When people ask you "How could you get addicted to pain pills?" You don't answer by putting yourself down. You stick up for yourself and say

"Excuse me? I was never addicted to pain pills. I took them because I was in pain, and because none of my doctors understood my illness. They didn't know what they were doing and didn't give me pain pills that lasted long enough. Now I am seeing a doctor who recognizes my illness and knows how to treat it with a pill I only have to take once a day. I don't know who told you I was addicted to pain pills, or who made you an expert on my disease, but they are full of crap"


Try and take this advice to heart. I'm not belittling you for not sticking up for yourself. Otherwise I would be just as bad and cruel as those in your life who refuse to acknowledge the legitimacy of your RLS. I'm just trying to get you to see it is not your fault and that you never let anyone down.

I too have been a victim of bad medicine, and psychological practices that happened in my childhood, being told I had all these problems. Then one day I cracked and GAVE them all the problems they told me I had, and made THEM deal with the results of my acting out. It seriously screwed me up for life, and I'm still trying to recover from it.

It pains me every time I see someone who is the victim of circumstance, being made to feel like they are the cause of their situation, they caused their problems, when clearly others were at fault and they are just being scapegoated and labled to justify some idiots screwup.

Thanks so much Zach. You really help me alot. I think I get better therapy from you than anyone in my life! LOL I think you have missed your calling in life, you should have been a therapist.

I think we all see ourselves as a much better person than we really are and when you fall short of that you feel like you have let yourself and others down. The way that drs. label you can really bring you down on yourself. They treat you as if you are an addict when your really not you just want to control your illness in any way that you can to continue to live a some what normal life. I think that every dr. that treats people with rls should have to experience rls in some way so that they can better understand what were talking about. They really do not get it at all; at least not the drs. i have seen around here. Most of them can't even speak proper english. That really plucks my nerve. I would love to find an american dr. that talks english and has been born and raised in the US. Sometimes I don't even feel like they understand what I'm at all. Then they just write you a script and tell you to try it. And of course it never works so they look at you like your crazy when you tell them it doesn't work.

[rlsgirl]

http://en.wikipedia.org/wiki/Buprenorphine

I also wiki'd Suboxone/Subutex (buprinorphine) to very some of the things I have said, and also to provide a comprehensive link to information for anyone wanting to look into it for curiousity, or treatment of their RLS.

As I suspected it is extremely powerful, stated to be 25 - 40 times as powerful as morphine. So definitely understandable that your RLS is under control.

Also my assertion that the naloxone additive formulas likely won't bother RLS patients seems to be repeated in a section of the Wiki describing it's various brand names, and preparations over the years.

Thanks so much for posting this. Its a bit scary to see that its more powerful than morphine. I did not know that and no one has told me that. I have read alot of material on this medication and I have not seen that till today. I'm hoping that I haven't gone from one problem right into another problem of a larger scale. Seems like I'm in a pickle no matter what I do. But hey, its working, I'm not taking hydrocodine, I'm sleeping, and my family likes me alot more right now so I guess I should be happy. i have an appointment with my therapist this Friday and I believe I'm going to fill her ears full this week. I seem to have alot to get out of me. I want to thank you again for all of the posts about this. You have really helped me more than I can even explain. Funny how a complete stranger can be so calming to a persons mind and soul! hope you have a wonderful evening. By the way.....I live in Virginia where do you live? Anywhere close to here?

[Aiken]

Keep in mind that the power of a drug only matters if you're taking exactly the same amount of it as you would take for a lesser drug. If it's 40x more powerful than morphine, you can take 1mg of it or 40mg of morphine and then they're equally powerful.

Consider codeine and hydrocodone. Hydrocodone is supposedly about 6x as strong as codeine. All that means is you're given 5mg of hydrocodone or 30mg of codeine.

The relative strength is not a big concern, as long as your doctor is aware of it and doses you appropriately.

[rlsgirl]

Keep in mind that the power of a drug only matters if you're taking exactly the same amount of it as you would take for a lesser drug. If it's 40x more powerful than morphine, you can take 1mg of it or 40mg of morphine and then they're equally powerful.

Consider codeine and hydrocodone. Hydrocodone is supposedly about 6x as strong as codeine. All that means is you're given 5mg of hydrocodone or 30mg of codeine.

The relative strength is not a big concern, as long as your doctor is aware of it and doses you appropriately.

good point!