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RLS Medication and Addiction
Okay I'm not really sure how to start this off or if I am even posting under the correct topic so you may see this in two area's. Drugs and Relapse etc.
Fist I suck at spelling and grammar so please go easy on me. I am spell checking, but may miss a few things here or there.
Here is my story; I have SEVERE RLS syndrome. Not just the average creepy crawling at rest etc. I get this 24/7 all day all night. Not only that, but it is not even just mild or just slightly uncomfortable. It is absolutely mind blowing. Okay I am about to get a little graphic. I sometime feel like I wand to rip out my muscles or amputate my legs just to get ride of the bugs that crawl with in. I told my Dr yesterday if I had to choose between the pain I felt un-medicated with my Abdominal hysterectomy or the RLS I have I would choose un-medicated pain like I felt from they hystorectomy. I can at least live with that and not feel as if I am loosing my mind or wanting to shoot myself. I actually beat my legs black and blue trying to get ride of the sensations.
Okay now medication history is this. I have tried EVERYTHING. Please don't come back and ask have you tried Vitamins/Hot Baths, Diet changes, Exercises, Herbs etc. I have tried it all. I have tried every drug not he market for RLS . Nourtoin, Sinement, Klonipen, Ambian, Topamax, Merapex, Requip, Cimbolta, etc. The only thing that has ever given me relief is pain medication.
Now here is were I get to the tough part for me. Admitting certain things about the pain meds and wondering if there may be anyone out there with a similar story. I have been on and off Hydrocodone (Vicoden) for the past 14 years. I gave up on my Dr about two years ago and went on line for help. I found a great e-visit Dr. and she has been extremely understanding and companionate to my situation. However I am just tired of having to depend on Narcotics to get relief.
I decided to go to a local Dr to see what I could do and if there may be something out there I have not tried or may-be just was not giving the medications a chance because I liked my Hydro to much and was very comfortable with it. But in the back of my mind new it was not right for me to be taking not for the rest of my life!!. I started out with a Neurologist whom diagnosed me once again with severe RLS not that I had not already known since I was diagnosed three other times already. But I had to go threw the typical Sleep study again etc. He had some concern about how I was getting my pain meds and I really understand why since it isn't very common for someone to get pain meds on line unless there is an addiction issue.
okay now he then sent me for a second opinion whom again diagnosed me with severe RLS and talked to me about Life time Narcotic treatment. Not what I wanted to here. or Methadone treatments. Her first plan was to try Lryica. Okay I thought couldn't hurt. I then had to go back to the first Neurologist and continue treatment with him. Of course the lyrica was not working I was tapering off the hydro at the same time though. But I was always tired and couldn't function with four kids you all know you have to be able to function daily. Okay he then sent me to a Pain Dr whom I have seen three times now. The second visit he was actually considering putting me on the Fentenal Patch. He wanted to do a test just to see were my Hydo levels were just to be safe on were to start. Much to his surprise and mine my levels were to high for his comfort. He suggested Detox. Well I went into a frantic frenzy.
See my fear was not loosing the drug, but the pain/Creepy Crawling to come if that makes any since. I did do the detox and was in there for about 4 days. The last night I had managed to do aprox 6,000 leg squats and leg lifts took about 24 hot showers etc. I was going out of my mine with the creepy crawling sensations. I wasn't craving the pills but was craving them in order to get rid of this sensation. Thought of you who even have a small amount of RLS can relate a little to what I'm saying here.
Okay I got out and first thing I did was take three hydrocodone pills. I couldn't take it anymore. I wrote in my journal knockings and bath mouthing every Dr. I have ever been with for the lack of understanding to this problem. I kept telling myself it was not the pills it was the creepy Crawling. I wanted to get rid of. And yes it was, but I think at the same time I really like the pills as well. I had developed a good tolerance to them so Yes I am very physically dependant and now that I have gone through all the can say with some certainty I am addicted to them as well. However I would have denied that last week LOL. I used my pain as a reason to take my pills.
Here is were I am today. I saw my Pain Dr. yesterday and he told me how prode he was of me for going through the detox and really giving this a shot. Very little did he know that I had taken my hydro twice since I had been home. Okay he put me on Baclofen, and I am determined to give this medication a very fair shot. but now I'm scared of trading one addiction for the next. I did some research on this med and it can be very hard to come off of. But I actually was able to sleep all night for the first time with out Hydro last night and I actually have been able to go 36 hours with out hydro since I started this medication. WOW that is a first for me.
Here is how I figured out I do have an addiction. All day today I found myself talking to myself. Since I was still in some discomfort not at my worst, but tolerable. I kept telling myself you could be more comfortable, go ahead take one or two you will feel so much better. Even though I was not having the RLs to the extreme I still wanted to take the pills. This is how I figured out I do indeed have some sort of addiction going on.
Now the big reason I'm writing. One I'm looking for someone who may have a similar issue and would love to know how they got through it when their RLS kicked in. I had a huge flair up around 5:30 this evening I was not due for a baclofen until 8:30 and didn't want to start taking more than I was supposed to take so I call the office to see if I could take this. The office was closed but by the grace of god I actually got a hold of someone. I was able to take a dose three hours early. Problem is the flair up got so bad and I waited to long to call the office I ended up taking 2 pills of hydo. Now I am feeling sooooo guilty that I even did this. I feel a whole lot better, but I can't help but wonder how I would feel just knowing I made it that much longer with out it. and let the Baclofen do its job. I just didn't have the patients left in me.
Can I get someone thoughts on this situation and condition and medications etc. how they handle it etc. I was soooo prode of myself I went 36 hours all on my own with out any pain medication never had I been able to do this on any other medication. I feel like I blew it. I want to go longer and keep it going.
I'm sorry for the long story, but I felt like I needed to tell the whole story, there are pieces missing, but I don't want to bore anyone any longer than necessary. It would just be nice to have someone to talk with that knows what it's like to feel like your loosing your mind not from the need of wanting the pills but because of the RLS not pain but RLS creepy Crawling sensations. I have a pretty good life so I have not ever taken medication just to numb myself from stress or problems it has always been the creepy crawling that has always brought me back to they hydro.
Thanks to anyone who actually reads all of this.
Fist I suck at spelling and grammar so please go easy on me. I am spell checking, but may miss a few things here or there.
Here is my story; I have SEVERE RLS syndrome. Not just the average creepy crawling at rest etc. I get this 24/7 all day all night. Not only that, but it is not even just mild or just slightly uncomfortable. It is absolutely mind blowing. Okay I am about to get a little graphic. I sometime feel like I wand to rip out my muscles or amputate my legs just to get ride of the bugs that crawl with in. I told my Dr yesterday if I had to choose between the pain I felt un-medicated with my Abdominal hysterectomy or the RLS I have I would choose un-medicated pain like I felt from they hystorectomy. I can at least live with that and not feel as if I am loosing my mind or wanting to shoot myself. I actually beat my legs black and blue trying to get ride of the sensations.
Okay now medication history is this. I have tried EVERYTHING. Please don't come back and ask have you tried Vitamins/Hot Baths, Diet changes, Exercises, Herbs etc. I have tried it all. I have tried every drug not he market for RLS . Nourtoin, Sinement, Klonipen, Ambian, Topamax, Merapex, Requip, Cimbolta, etc. The only thing that has ever given me relief is pain medication.
Now here is were I get to the tough part for me. Admitting certain things about the pain meds and wondering if there may be anyone out there with a similar story. I have been on and off Hydrocodone (Vicoden) for the past 14 years. I gave up on my Dr about two years ago and went on line for help. I found a great e-visit Dr. and she has been extremely understanding and companionate to my situation. However I am just tired of having to depend on Narcotics to get relief.
I decided to go to a local Dr to see what I could do and if there may be something out there I have not tried or may-be just was not giving the medications a chance because I liked my Hydro to much and was very comfortable with it. But in the back of my mind new it was not right for me to be taking not for the rest of my life!!. I started out with a Neurologist whom diagnosed me once again with severe RLS not that I had not already known since I was diagnosed three other times already. But I had to go threw the typical Sleep study again etc. He had some concern about how I was getting my pain meds and I really understand why since it isn't very common for someone to get pain meds on line unless there is an addiction issue.
okay now he then sent me for a second opinion whom again diagnosed me with severe RLS and talked to me about Life time Narcotic treatment. Not what I wanted to here. or Methadone treatments. Her first plan was to try Lryica. Okay I thought couldn't hurt. I then had to go back to the first Neurologist and continue treatment with him. Of course the lyrica was not working I was tapering off the hydro at the same time though. But I was always tired and couldn't function with four kids you all know you have to be able to function daily. Okay he then sent me to a Pain Dr whom I have seen three times now. The second visit he was actually considering putting me on the Fentenal Patch. He wanted to do a test just to see were my Hydo levels were just to be safe on were to start. Much to his surprise and mine my levels were to high for his comfort. He suggested Detox. Well I went into a frantic frenzy.
See my fear was not loosing the drug, but the pain/Creepy Crawling to come if that makes any since. I did do the detox and was in there for about 4 days. The last night I had managed to do aprox 6,000 leg squats and leg lifts took about 24 hot showers etc. I was going out of my mine with the creepy crawling sensations. I wasn't craving the pills but was craving them in order to get rid of this sensation. Thought of you who even have a small amount of RLS can relate a little to what I'm saying here.
Okay I got out and first thing I did was take three hydrocodone pills. I couldn't take it anymore. I wrote in my journal knockings and bath mouthing every Dr. I have ever been with for the lack of understanding to this problem. I kept telling myself it was not the pills it was the creepy Crawling. I wanted to get rid of. And yes it was, but I think at the same time I really like the pills as well. I had developed a good tolerance to them so Yes I am very physically dependant and now that I have gone through all the can say with some certainty I am addicted to them as well. However I would have denied that last week LOL. I used my pain as a reason to take my pills.
Here is were I am today. I saw my Pain Dr. yesterday and he told me how prode he was of me for going through the detox and really giving this a shot. Very little did he know that I had taken my hydro twice since I had been home. Okay he put me on Baclofen, and I am determined to give this medication a very fair shot. but now I'm scared of trading one addiction for the next. I did some research on this med and it can be very hard to come off of. But I actually was able to sleep all night for the first time with out Hydro last night and I actually have been able to go 36 hours with out hydro since I started this medication. WOW that is a first for me.
Here is how I figured out I do have an addiction. All day today I found myself talking to myself. Since I was still in some discomfort not at my worst, but tolerable. I kept telling myself you could be more comfortable, go ahead take one or two you will feel so much better. Even though I was not having the RLs to the extreme I still wanted to take the pills. This is how I figured out I do indeed have some sort of addiction going on.
Now the big reason I'm writing. One I'm looking for someone who may have a similar issue and would love to know how they got through it when their RLS kicked in. I had a huge flair up around 5:30 this evening I was not due for a baclofen until 8:30 and didn't want to start taking more than I was supposed to take so I call the office to see if I could take this. The office was closed but by the grace of god I actually got a hold of someone. I was able to take a dose three hours early. Problem is the flair up got so bad and I waited to long to call the office I ended up taking 2 pills of hydo. Now I am feeling sooooo guilty that I even did this. I feel a whole lot better, but I can't help but wonder how I would feel just knowing I made it that much longer with out it. and let the Baclofen do its job. I just didn't have the patients left in me.
Can I get someone thoughts on this situation and condition and medications etc. how they handle it etc. I was soooo prode of myself I went 36 hours all on my own with out any pain medication never had I been able to do this on any other medication. I feel like I blew it. I want to go longer and keep it going.
I'm sorry for the long story, but I felt like I needed to tell the whole story, there are pieces missing, but I don't want to bore anyone any longer than necessary. It would just be nice to have someone to talk with that knows what it's like to feel like your loosing your mind not from the need of wanting the pills but because of the RLS not pain but RLS creepy Crawling sensations. I have a pretty good life so I have not ever taken medication just to numb myself from stress or problems it has always been the creepy crawling that has always brought me back to they hydro.
Thanks to anyone who actually reads all of this.
have had RlS for over 14 years so it's not just from the W/D. What i don't think others really get is the severity of it all. Thiis is what brings be back every single time. i know that if it were not for this i would be okay, i know this. What most Rehabs don't do is pain manage while detox so there is no help for it during this time and that is when i need it the most.
it's not just leg cramps that bother me so much. It it the feeling of bugs up inside your muscles making a new home and having parties all night and all day long inside your legs. if you can't move them or get relief you want to panic, almost like a bad hallucinations that never ever ends. Does that make any since? i just can't deal with it I can't. I can deal with the shakes, diarrhea, sweating, chills etc just not this. the rest is nothing compared to this.
I have secondary and primary RLS this means that it is not only genetic for me, but was also induced by a car accident i had 12 years ago. This made it all worse. Then when you though in the withdraw on top of things i get a triple dose. no fun.
my 14 year old twins also have RlS. one in her feet, but not very often she puts her feet in the bath and she is good for months till the next time. The other more often and in her legs alot like mine. she will come in our room in tears walking and passing and alomst hyperventelating just like i do a lot of times. i usually put her in the top and give her a motrin and in about an hour she is doing much better. my grandmother also has this condition and is taking ultram for it since nothing seems to help her as well. Also my cousin has the condition, but motirn helps her and she is still young. This condition only gets worse with age sot that is another fear of mine having to deal with this for the rest of my life. in all honesty sometimes i think i would rather be addicted than live like this for the rest of my life. i have four kids to take care of a husband and a home. When i'm like this i can't care for anyone or anything. it's just impossible.
No one will offer me medication while detoxing. i had detoxed last week and they gave me ultram which did do something, but i knew it would. prob. started for me when the does was out. it didn't start til i was brough down 75% from when i started. That night the nurse wouldn't let me shower and i freeked out. They brought the security guard in lol. i screamed at her to call the Dr because he knew my situation and i knew he would tell her it was okay. Finally she did and sure enough came to me and said i could shower. God all that over a stupid hot shower. my drugs were gone and now your taking may shower away from me. i don't think so lol.
I'm only withdrawing form hydocodone i don't use anything else so i know this should be over for me and that is how i know it's not just w/d right now. i woke up at 6;14 this morning with this. i took the Baclefen and i'm okay but am still feeling theses things in my legs and want to jump out of my skin. i ended up taking one last night after 36 hours, this time i plan on 42 hours. i figure if i can make it 36 i can make it 42 and hopefully it will get longer and longer. right????
other that think that e-visits is illegal it is not so, at least not in my state. I'm not getting over seas. i just see her on the web cam and we communicate Yahoo IM a lot to keep in touch between refills. it's not just a Dr consult. She makes you go through the typical physical, urine test/blood test etc. it's not what everyone seems to think. I can understand because she was very hard to find. there are a tone of over seas offers to ship meds and one Dr consult and get meds etc. i want everyone to know we do have a legal right to pain medication and Dr Edwards does everything through the book. She is a pain sufferer herself and wanted to help others who find it difficult to talk with the local dr's. Dr's that don't seem to understand much. i'm sure others thatn suffer from any type of Sever pain know what i mean. When your Dr looks at you like your some kind of pill seeker when your really just trying to explain to her your pain can be killer. it makes it hard to be honest with them. Anyway i will find the legal act in her sit and post it. Each State is different though in regards to what is legal and what is not on the Internet so be careful and make sure you know your rights first and for most.
Bottom line for me it is the RlS that brings me back to the medication not the cravings or want to get high. That is not what i'm after. i only want enough to get relief from this condition. I don't really care what medication it is that does it i just want relief. Does this make any since?
Thanks for the responses. Hopefully someone will truly relate and send me a messeage i could really use someone in this condition to talk with and may-be we can help eachother through it.
it's not just leg cramps that bother me so much. It it the feeling of bugs up inside your muscles making a new home and having parties all night and all day long inside your legs. if you can't move them or get relief you want to panic, almost like a bad hallucinations that never ever ends. Does that make any since? i just can't deal with it I can't. I can deal with the shakes, diarrhea, sweating, chills etc just not this. the rest is nothing compared to this.
I have secondary and primary RLS this means that it is not only genetic for me, but was also induced by a car accident i had 12 years ago. This made it all worse. Then when you though in the withdraw on top of things i get a triple dose. no fun.
my 14 year old twins also have RlS. one in her feet, but not very often she puts her feet in the bath and she is good for months till the next time. The other more often and in her legs alot like mine. she will come in our room in tears walking and passing and alomst hyperventelating just like i do a lot of times. i usually put her in the top and give her a motrin and in about an hour she is doing much better. my grandmother also has this condition and is taking ultram for it since nothing seems to help her as well. Also my cousin has the condition, but motirn helps her and she is still young. This condition only gets worse with age sot that is another fear of mine having to deal with this for the rest of my life. in all honesty sometimes i think i would rather be addicted than live like this for the rest of my life. i have four kids to take care of a husband and a home. When i'm like this i can't care for anyone or anything. it's just impossible.
No one will offer me medication while detoxing. i had detoxed last week and they gave me ultram which did do something, but i knew it would. prob. started for me when the does was out. it didn't start til i was brough down 75% from when i started. That night the nurse wouldn't let me shower and i freeked out. They brought the security guard in lol. i screamed at her to call the Dr because he knew my situation and i knew he would tell her it was okay. Finally she did and sure enough came to me and said i could shower. God all that over a stupid hot shower. my drugs were gone and now your taking may shower away from me. i don't think so lol.
I'm only withdrawing form hydocodone i don't use anything else so i know this should be over for me and that is how i know it's not just w/d right now. i woke up at 6;14 this morning with this. i took the Baclefen and i'm okay but am still feeling theses things in my legs and want to jump out of my skin. i ended up taking one last night after 36 hours, this time i plan on 42 hours. i figure if i can make it 36 i can make it 42 and hopefully it will get longer and longer. right????
other that think that e-visits is illegal it is not so, at least not in my state. I'm not getting over seas. i just see her on the web cam and we communicate Yahoo IM a lot to keep in touch between refills. it's not just a Dr consult. She makes you go through the typical physical, urine test/blood test etc. it's not what everyone seems to think. I can understand because she was very hard to find. there are a tone of over seas offers to ship meds and one Dr consult and get meds etc. i want everyone to know we do have a legal right to pain medication and Dr Edwards does everything through the book. She is a pain sufferer herself and wanted to help others who find it difficult to talk with the local dr's. Dr's that don't seem to understand much. i'm sure others thatn suffer from any type of Sever pain know what i mean. When your Dr looks at you like your some kind of pill seeker when your really just trying to explain to her your pain can be killer. it makes it hard to be honest with them. Anyway i will find the legal act in her sit and post it. Each State is different though in regards to what is legal and what is not on the Internet so be careful and make sure you know your rights first and for most.
Bottom line for me it is the RlS that brings me back to the medication not the cravings or want to get high. That is not what i'm after. i only want enough to get relief from this condition. I don't really care what medication it is that does it i just want relief. Does this make any since?
Thanks for the responses. Hopefully someone will truly relate and send me a messeage i could really use someone in this condition to talk with and may-be we can help eachother through it.
Well after your reading your bio. I would believe that your sole problem is your addiction to hydrocodone. It has been years that your body and nerves have had to try and produce the natural chemicals on your own, but I believe you have caused serious damage to your nerves, Not to mention you have a very high tolerance for opiates. Through out your story all you seem to continue to come back to is the hydrocodone. Which I feel you are hopelessly dependant on! You are even willing to break the law in order to obtain them, Getting them off the web even with the DR. consult is still illegal. Dr's must have a face to face meeting in order to prescribe a class-III, medication. However your PCP is allowed to call in hydrocodone on an established patient. Have you ever truly tried to detox off the hydro with something like suboxone, I understand you have tried Evey med on the market for the RLS, but I am sure you know that when someone does detox from opiates the leg cramps and feelings much like you described in your post is quite common. And methadone detox these feelings are also unbearable and may go on for 6 months along sleep deprivation for just as long. Now your pain management DR. on your second visit put you on baclofen as your hydro levels were too high for him to touch you at that point. Baclofen is only a muscle relaxer which should work no better than a Valium, but because you already have one serious addiction he did not want to be responsible for giving you a dual addiction. What is the longest you have ever gone without hydro? Have you ever tried quinine for the RLS and cramping, ask your DR. about it or do some research on your own, I have been told by others that it works on RLS during the detox phase during inpatient treatment.
I was on oxycontin40mg x 3 daily and norco10/325 8 a day, post-op back surgery. I stayed on the meds and eventually was put on suboxone 8mg every 6hrs for a total dose of 32mgs, Now the oxy is twice as addicting as the hydro 10/325 I was taking, I have never had a day of discomfort in terms of RLS or being dope sick. I really think you should consider it. I not sure were I would be without it. I know there are other medications you can take for your RLS, like the quinine or zanaflex one of the best of all muscle relaxer prescribed for RLS and cramps. It is usually prescribed for patients suffering from Multiple Sclerosis or spinal injures resulting in paraplegic. These patients truly suffer from terrible problems with cramps and RLS and spastic muscle movement.
I telling you I believe your problem to be an out of control addiction to Vicodin. Anyone who tried to detox on their own without the assistance of a medical professional is in for a hell of a ride. But I'm sure you have experienced this before otherwise you would not be buying your vicodin off the web in the past. If your pain management D.R. has chosen to keep you Vicodin would be crazy, If you he has not switched you to another opiate such a percocet. The only thing in Vicodin is hydrocodone and acetaminophen a less potent opiate than percocet,(oxycodone and acetaminophen) your pain management DR should be exploring alternate medications and at the very least a detox medication SUBOXONE that works like a charm on every detox symptom associated with opiate detox including RLS. For more information log on to naabt.org, they will link you with a physician based on zip code and the miles you are willing to travel. Your PM DR more than likely does not have his waiver to prescribe this medication, Good Luck to !
I was on oxycontin40mg x 3 daily and norco10/325 8 a day, post-op back surgery. I stayed on the meds and eventually was put on suboxone 8mg every 6hrs for a total dose of 32mgs, Now the oxy is twice as addicting as the hydro 10/325 I was taking, I have never had a day of discomfort in terms of RLS or being dope sick. I really think you should consider it. I not sure were I would be without it. I know there are other medications you can take for your RLS, like the quinine or zanaflex one of the best of all muscle relaxer prescribed for RLS and cramps. It is usually prescribed for patients suffering from Multiple Sclerosis or spinal injures resulting in paraplegic. These patients truly suffer from terrible problems with cramps and RLS and spastic muscle movement.
I telling you I believe your problem to be an out of control addiction to Vicodin. Anyone who tried to detox on their own without the assistance of a medical professional is in for a hell of a ride. But I'm sure you have experienced this before otherwise you would not be buying your vicodin off the web in the past. If your pain management D.R. has chosen to keep you Vicodin would be crazy, If you he has not switched you to another opiate such a percocet. The only thing in Vicodin is hydrocodone and acetaminophen a less potent opiate than percocet,(oxycodone and acetaminophen) your pain management DR should be exploring alternate medications and at the very least a detox medication SUBOXONE that works like a charm on every detox symptom associated with opiate detox including RLS. For more information log on to naabt.org, they will link you with a physician based on zip code and the miles you are willing to travel. Your PM DR more than likely does not have his waiver to prescribe this medication, Good Luck to !
I honestly wish that I had some information to help you. There are two other forums that you may want to cut and paste your question into. They may provide more help. The first is the neurology forum. Here's the link
http://www.medhelp.org/forums/NeuroSupport/WWWboard.html
The second is the pain management forum. Here's the link..
OK, never mind the pain management one...I see you've already posted there. God bless you..
http://www.medhelp.org/forums/NeuroSupport/WWWboard.html
The second is the pain management forum. Here's the link..
OK, never mind the pain management one...I see you've already posted there. God bless you..
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