Hello. I need some advice.
My sister was diagnosed with RLS about 5 years ago. Before that I know she had dabbled with marijuana and cocaine. She said that she felt like she had a disease where her legs fell asleep (pins and needles) in the middle of the night. We are not sure if this is definitely RLS. Her family doctor did not know anything about the disease. She told him that Tylenol 3 and a muscle relaxer (lorazepam, diazepam, atavan?) every night was the best remedy for her symptoms. I think he looked into it and began writing her prescriptions. I don't think she has ever tried any other type of treatment. I know she liked painkillers before she was diagnosed and am not sure if she made it up to get more or not. She became dependent to the codeine in Tylenol 3. She started taking 8 - 10 pills per day, way more than the indicated dose. Mood swings started to occur. She was drowsy a lot of the time or manic. She started doing a lot more cocaine. She smoked crack at least twice. She did this with her kids in the house. We found an illegal bottle of un-prescribed oxycontin in the house.
The family had an intervention so she can go to a detox unit and be mentally normal again. She is stating that she refuses to go to a place that won't allow her to have her Atavan (is this even prescribed for RLS?). The treatment center the family picked out will not allow it. They don't believe that she can detox with it and believes she has some emotional issues to work out. The family is willing to spend $25,000 for her detox and treatment, but does not feel she should go to a facility that trades one narcotic for another.
My first question is: Does anyone have any experience with this? Can anyone recommend a treatment facility that has experience with detoxing RLS patients?
Also, are there any tests to determine that a person definitely has RLS or do doctors just go by the symptoms described by a patient?
Any advice would be very helpful!
Thanks!
A Loving Sis
Opiate Dependency
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ViewsAskew
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Wow, Sis, what a difficult place to be. I have never been addicted, so I can't answer that from a personal perspective. I can, I hope, give you an RLSers perspective of what it's like to have this, and how important treatment is for her if she does have it.
And, soon, I'm hoping a few of our regulars will be along. Some of them are in recovery and can give you their perspective on it. Brady, Lyndarae - if you guys are around, pop on over here, will you?
RLS is a insidious, horrible affliction. No matter how frequently we feel those sensations, many of us would do just about anything to make those feelings go away and get our 'normal' lives back. For those of us with daily symptoms, we spend an inordinate amount of time trying to find help and relief. It can lead to anxiety and depression, and alters our quality of life.
Opioids are one class of drug that effectively treats RLS. It is not usually the first choice, because of the potential for addiction. When managed correctly, most people do not become addicted. Your sister's story illustrates why it is so important for our doctors to know about how to correctly use these drugs to greatly reduce any chance of addicition occuring.
Atavan is a benzodiazepine. These do work for some RLS patients. In fact, she has done what many of us have done - on her own, she found drugs that help her. Marijuana also helps many people. She was self-medicating to stop what her doctors didn't know how to help her stop: RLS. She may not have even known the name, just that she was suffering.
Does she have RLS? Based on her drug choices, I'd say it's quite likely, but I am not a doctor, just a fellow RLS sufferer. She chose things that are proven to help RLS. She didn't pick things that are equally addictive, but that make RLS worse or don't help it. Can anyone definitely prove that she has it without her saying so? No. The only test for it is the patient's answers to several questions.
I think you must believe her, though, or you wouldn't be here. People that don't have RLS cannot really know what we go though, and it's hard to take that leap of faith that she is being honest with you, and not drug-seeking.
For many people, there are other drugs that help RLS without being addictive. Most people can find one or more of these to take to solve the problem. There are some, however, for whom only opiates work. If she is one of those people, she's in for a tough time ahead. But, she'll have to cross that bridge if and when she comes to it. Statistics are in her favor that the dopamine agonists will help her.
You seem to care for her very much. She is lucky to have you. Follow your heart and listen to her. She may be partially drug-seeking, but if she has RLS, it's essential that everyone involved in her treatment know what she is battling.
There are lists of drugs that worsen RLS. All of her providers need to know and follow that. There is a treatment algorithm developed to help doctors treat RLS. Someone should follow that with her. There are many options. There are also new treatments that she could try. For example, Johns Hopkins is doing a trials involving IV iron. Her ferritin should be tested immediately, and if it below 50, and above 18, she is a candidate for this trial. She'd have to stay there a week, but they even pay the people who participate! For 20% of the people, this eliminates RLS. For 40%, it reduces it dramatically. In her position, what does she have to lose? To participate, she had to stop all of her current drugs, which she will be doing anyway.
There are many other things she can (and, in my mind, should do). Many of us find a reduction in symptoms by taking magnesium, calcium, B complex, folic acid, and/or iron. Iron should never be taken without first having ferritin levels tested. Caffeine, alcohol, many OTC and prescription meds, and smoking can worsen RLS. And even some foods can cause problems. Some people find relief wearing compression stockings, others find a stretching program or exercise program to help greatly.
What is important is that someone needs to get educated about RLS quickly, so they can guide this process and act as a mediator with the medical community. The medical community will not know much about this, and we have heard many example of them not listening and making it worse. Someone has to advocate for her and firmly hold ground, so that nothing it done to worsen her condition. I know that I would never make it though rehab if my RLS was out of control. And I would start whatever helped as soon as I was out if someone didn't find a way to help.
There are many articles on this site that can be printed and taken to your/her doctors. If you go to the New to RLS? section of this message board, you'll see two sticky threads at the top. These are essential reading for you, as her advocate. When you finish reading those, you'll be in a better place to help her and do everything you can to make sure rehab has the best chance possible.
Oh, one last thing. Atavan can be difficult to stop. Some rehab places may require that she stop this quickly. I had a strong physical dependence on a different benzo, and it took me 6 months to stop it! And I didn't take all that much and had only taken it for about 6 months when I tried to stop it. There is a lot of information about that on the Internet. I only say this because if she is one who does have difficulty, it may compromise her rehab.
Good luck, Sis.
Ann
And, soon, I'm hoping a few of our regulars will be along. Some of them are in recovery and can give you their perspective on it. Brady, Lyndarae - if you guys are around, pop on over here, will you?
RLS is a insidious, horrible affliction. No matter how frequently we feel those sensations, many of us would do just about anything to make those feelings go away and get our 'normal' lives back. For those of us with daily symptoms, we spend an inordinate amount of time trying to find help and relief. It can lead to anxiety and depression, and alters our quality of life.
Opioids are one class of drug that effectively treats RLS. It is not usually the first choice, because of the potential for addiction. When managed correctly, most people do not become addicted. Your sister's story illustrates why it is so important for our doctors to know about how to correctly use these drugs to greatly reduce any chance of addicition occuring.
Atavan is a benzodiazepine. These do work for some RLS patients. In fact, she has done what many of us have done - on her own, she found drugs that help her. Marijuana also helps many people. She was self-medicating to stop what her doctors didn't know how to help her stop: RLS. She may not have even known the name, just that she was suffering.
Does she have RLS? Based on her drug choices, I'd say it's quite likely, but I am not a doctor, just a fellow RLS sufferer. She chose things that are proven to help RLS. She didn't pick things that are equally addictive, but that make RLS worse or don't help it. Can anyone definitely prove that she has it without her saying so? No. The only test for it is the patient's answers to several questions.
I think you must believe her, though, or you wouldn't be here. People that don't have RLS cannot really know what we go though, and it's hard to take that leap of faith that she is being honest with you, and not drug-seeking.
For many people, there are other drugs that help RLS without being addictive. Most people can find one or more of these to take to solve the problem. There are some, however, for whom only opiates work. If she is one of those people, she's in for a tough time ahead. But, she'll have to cross that bridge if and when she comes to it. Statistics are in her favor that the dopamine agonists will help her.
You seem to care for her very much. She is lucky to have you. Follow your heart and listen to her. She may be partially drug-seeking, but if she has RLS, it's essential that everyone involved in her treatment know what she is battling.
There are lists of drugs that worsen RLS. All of her providers need to know and follow that. There is a treatment algorithm developed to help doctors treat RLS. Someone should follow that with her. There are many options. There are also new treatments that she could try. For example, Johns Hopkins is doing a trials involving IV iron. Her ferritin should be tested immediately, and if it below 50, and above 18, she is a candidate for this trial. She'd have to stay there a week, but they even pay the people who participate! For 20% of the people, this eliminates RLS. For 40%, it reduces it dramatically. In her position, what does she have to lose? To participate, she had to stop all of her current drugs, which she will be doing anyway.
There are many other things she can (and, in my mind, should do). Many of us find a reduction in symptoms by taking magnesium, calcium, B complex, folic acid, and/or iron. Iron should never be taken without first having ferritin levels tested. Caffeine, alcohol, many OTC and prescription meds, and smoking can worsen RLS. And even some foods can cause problems. Some people find relief wearing compression stockings, others find a stretching program or exercise program to help greatly.
What is important is that someone needs to get educated about RLS quickly, so they can guide this process and act as a mediator with the medical community. The medical community will not know much about this, and we have heard many example of them not listening and making it worse. Someone has to advocate for her and firmly hold ground, so that nothing it done to worsen her condition. I know that I would never make it though rehab if my RLS was out of control. And I would start whatever helped as soon as I was out if someone didn't find a way to help.
There are many articles on this site that can be printed and taken to your/her doctors. If you go to the New to RLS? section of this message board, you'll see two sticky threads at the top. These are essential reading for you, as her advocate. When you finish reading those, you'll be in a better place to help her and do everything you can to make sure rehab has the best chance possible.
Oh, one last thing. Atavan can be difficult to stop. Some rehab places may require that she stop this quickly. I had a strong physical dependence on a different benzo, and it took me 6 months to stop it! And I didn't take all that much and had only taken it for about 6 months when I tried to stop it. There is a lot of information about that on the Internet. I only say this because if she is one who does have difficulty, it may compromise her rehab.
Good luck, Sis.
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.
-
Sister Love
Opiate Dependency
Thank you so much, Ann!
I really appreciate you taking the time to provide me with some insight on this difficult subject.
I have talked with the drug treatment facility and they would like to put her on Requip when she checks in. I hope that this works for her. I would hate to have her suffering the entire time she is trying to get better.
Thanks again,
A Loving Sis
I really appreciate you taking the time to provide me with some insight on this difficult subject.
I have talked with the drug treatment facility and they would like to put her on Requip when she checks in. I hope that this works for her. I would hate to have her suffering the entire time she is trying to get better.
Thanks again,
A Loving Sis
Wow, sucks to be in her position for sure.. Especially if she has legitimate RLS.
I can speak from personal experience about how difficult it can sometimes be. I have tried a lot of different medications for my RLS, and I finally came to the conclusion that narcotics were the best solution for me, in terms of providing total, long lasting relief.
I've had days where I will take a lot more than I should also, because sometimes it can really be hard to tell where the comfort level starts, and the inclination to get high begins, and for someone with a drug problem, I imagine it would be that much harder for them to control, and catch themselves when they step over the line..
It sounds like requip is her best bet right now, and if it truly doesn't work for her, you may want to work with the facility to discuss other non-narcotic RLS drugs that they will allow her to try.
As a last general resort to dealing with all of her problems at once, you might consider methadone, but I really don't have much experience to related on that particular subject other than mixed reviews I've read from some people who say it works, and others who say you'll never get off it, etc..
Hope everything works out
I can speak from personal experience about how difficult it can sometimes be. I have tried a lot of different medications for my RLS, and I finally came to the conclusion that narcotics were the best solution for me, in terms of providing total, long lasting relief.
I've had days where I will take a lot more than I should also, because sometimes it can really be hard to tell where the comfort level starts, and the inclination to get high begins, and for someone with a drug problem, I imagine it would be that much harder for them to control, and catch themselves when they step over the line..
It sounds like requip is her best bet right now, and if it truly doesn't work for her, you may want to work with the facility to discuss other non-narcotic RLS drugs that they will allow her to try.
As a last general resort to dealing with all of her problems at once, you might consider methadone, but I really don't have much experience to related on that particular subject other than mixed reviews I've read from some people who say it works, and others who say you'll never get off it, etc..
Hope everything works out
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Guest
Dear Sis,
It is a difficult situation to say the least.
One word of caution, Requip may cause more problems mentally and physically... It helped my RLS the first night and I slept well, while it prevented the RLS sensations I suffered from vivid dreams waking up every two hours till by the 5th night I had total insomnia - even though increasing the doseage as recommended.
What I am trying to say is it may not be the highest priority at this time to address the RLS. Once Ann, you posted that sometimes it is best to forgo medications so RLS symptoms could level out... I am not as good at putting words together as Ann so she may be able to explain this in more detail.
Just a thought, Hazel (((Keeping you and your family in my thoughts and prayers.)))))
It is a difficult situation to say the least.
One word of caution, Requip may cause more problems mentally and physically... It helped my RLS the first night and I slept well, while it prevented the RLS sensations I suffered from vivid dreams waking up every two hours till by the 5th night I had total insomnia - even though increasing the doseage as recommended.
What I am trying to say is it may not be the highest priority at this time to address the RLS. Once Ann, you posted that sometimes it is best to forgo medications so RLS symptoms could level out... I am not as good at putting words together as Ann so she may be able to explain this in more detail.
Just a thought, Hazel (((Keeping you and your family in my thoughts and prayers.)))))
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ViewsAskew
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Sacramento, CA, USA
Hazel's point is related to RLS that is highly augmented. When RLS is augmented by dopamine agonists, it can be the most helpful to STOP all medication for at least a week, if not two. Then you can see what the RLS is really like.
Since only dopamine agonists cause augmentation, this doesn't apply if the person isn't taking this category of drug.
And, thank you, Hazel. Lately my words are not as clear to others as they are to me! I had a question for my stained glass board. . .it took me three tries to get everyone to understand me
. One person even asked me if I had ever done stained glass before! One of the side effects of not enough sleep, too many weird drugs, and age, I guess.
Ann
Since only dopamine agonists cause augmentation, this doesn't apply if the person isn't taking this category of drug.
And, thank you, Hazel. Lately my words are not as clear to others as they are to me! I had a question for my stained glass board. . .it took me three tries to get everyone to understand me
. One person even asked me if I had ever done stained glass before! One of the side effects of not enough sleep, too many weird drugs, and age, I guess. 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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bradyferguson
- Posts: 74
- Joined: Tue Sep 21, 2004 1:29 pm
I have some personal experience with this particular situation. its almost freaky how similar my story is.
I am a 38y/o male diagnosed with RLS in 1992. I had already had battled alcoholism at the age of 22 and completed treatment in 1988. after being diagnosed I was put on clonazepam for the RLS and it was effective in treating it for some 7 years. As clonazepam is a benzodiazipem and highly addictive my addictive behaviour started to rear its head in 1997. I started to self medicate with tylenol #1 which can be bought over the counter in canada and contains 8mg of codien. Within 2 years i was taking over 100 pills per day. Problem was that I did have a sever form of RLS and the medication was very effective in treating it. Well that is how i justified it at the time.
I finally entered drug detox/rehab in 1999 where they took all of my medications away. it was truly hell for me as i was not only battling the addiction but the RLS. The cronic lack of sleep and exhaustion from all the stress from rehab was very difficult to deal with to say the least.
With the help of others and prayer I was able to deal with alot of the issues that caused me to abuse medication in the first place.
I currently take mirapex for the rls and it is somewhat effective. I have struggled in the last year with the delema that a medication that once ruined my life (opiates) may be the only thing that the medical community has to offer me for relief of my rls as the mirapex is currently causing augmentation (developing daytime symptoms).
I has not been a cut and dry issue. My doctor who is the leading specialist in canada for RLS is also at a loss what to do in my case. Treat the RLS to increase my quality of life but risk addiction to opiates again.
He has been willing to perscribe me the medication but in my case I have felt that It was far to great a risk.
As I am 38 i cannot imagine the next potential 50 years on painkillers.
Feel free to ask me any more about my situation as it would be my pleasure to help a fellow addict.
Later
Brady Ferguson
I am a 38y/o male diagnosed with RLS in 1992. I had already had battled alcoholism at the age of 22 and completed treatment in 1988. after being diagnosed I was put on clonazepam for the RLS and it was effective in treating it for some 7 years. As clonazepam is a benzodiazipem and highly addictive my addictive behaviour started to rear its head in 1997. I started to self medicate with tylenol #1 which can be bought over the counter in canada and contains 8mg of codien. Within 2 years i was taking over 100 pills per day. Problem was that I did have a sever form of RLS and the medication was very effective in treating it. Well that is how i justified it at the time.
I finally entered drug detox/rehab in 1999 where they took all of my medications away. it was truly hell for me as i was not only battling the addiction but the RLS. The cronic lack of sleep and exhaustion from all the stress from rehab was very difficult to deal with to say the least.
With the help of others and prayer I was able to deal with alot of the issues that caused me to abuse medication in the first place.
I currently take mirapex for the rls and it is somewhat effective. I have struggled in the last year with the delema that a medication that once ruined my life (opiates) may be the only thing that the medical community has to offer me for relief of my rls as the mirapex is currently causing augmentation (developing daytime symptoms).
I has not been a cut and dry issue. My doctor who is the leading specialist in canada for RLS is also at a loss what to do in my case. Treat the RLS to increase my quality of life but risk addiction to opiates again.
He has been willing to perscribe me the medication but in my case I have felt that It was far to great a risk.
As I am 38 i cannot imagine the next potential 50 years on painkillers.
Feel free to ask me any more about my situation as it would be my pleasure to help a fellow addict.
Later
Brady Ferguson