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RLS Pain Meds/Other Meds Help
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.
Kdotson.
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.
Kdotson.
Well...that's a specific pre-existing symptom. We'd love to help but I don't know if they typical things we use here would help for it or not. It sounds like you've got a spinal injury (head?) that is causing this? (exacerbating the genetic condition?)
You're in a tricky spot. Most of the meds that you're taking don't sound like they deal with the specific cause of the problem, they just mask the symptoms. Ultram, has an opiate base in it, I'm pretty sure by the way, and any opiate you withdraw from will make the RLS worse.
I think you'd need some sort of neural blocker to get through this, but I'm no expert. Have you tried chiropractic? I'd do it in the hopes the doctor might "Jar" something back into place that would help "cure" the problem.
I've wondered if EST might help with these kind of problems (Electroshock Therapy). You're talking about a problem that's caused by misfiring neurotransmitters, and the key is to find a way to slow down or balance out the signal transmission. I think you'd have to focus your research on that.
You may have to get inventive and try herbal concentrates if you can't get a doctor to go along (all med's are made from herbal concentrates, the key is getting one that is what it claims to be. That's why they never work, what you tend to buy at the store has no potency or strength due to age or the like. There's like two places in the whole country that guarantee you're getting what they claim it is and are honest about it).
You're in a tricky spot. Most of the meds that you're taking don't sound like they deal with the specific cause of the problem, they just mask the symptoms. Ultram, has an opiate base in it, I'm pretty sure by the way, and any opiate you withdraw from will make the RLS worse.
I think you'd need some sort of neural blocker to get through this, but I'm no expert. Have you tried chiropractic? I'd do it in the hopes the doctor might "Jar" something back into place that would help "cure" the problem.
I've wondered if EST might help with these kind of problems (Electroshock Therapy). You're talking about a problem that's caused by misfiring neurotransmitters, and the key is to find a way to slow down or balance out the signal transmission. I think you'd have to focus your research on that.
You may have to get inventive and try herbal concentrates if you can't get a doctor to go along (all med's are made from herbal concentrates, the key is getting one that is what it claims to be. That's why they never work, what you tend to buy at the store has no potency or strength due to age or the like. There's like two places in the whole country that guarantee you're getting what they claim it is and are honest about it).
i 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. This 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.
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.
I know this sounds CRAZY BUT my best friend had a "BAR OF SOAP" under her sheets last week when I was helping her make her bed. I said "WHAT is THAT for?" She said "I heard that if you have leg cramps or RLS that putting this under your sheet will help....AND IT DOES!" Of course I didn't believe it BUT I tried it and MAN it DOES work. I have no leg pain while sleeping at night anymore. NOW, a friend visiting me for the weekend just told me last night her sister DOES this. I said YOU HAVE got to be kidding. So TRY a simple bar of soap (preferrably new one) :) and see what happens. What have you got to lose, right? Just my suggestion...Precious
Okay...I'm not sure if I missed this but let me ask; were you suffering from RLS before using drugs, or is this a severe occurrence of RLS from withdrawals? Because you can get severe RLS from opiate withdrawals, it's not uncommon. I'm not sure what you'd take for it other than a muscle relaxant, and it shouldn't last more than 4-5 days tops (unless it's methadone you were withdrawing from).
Anyone else have treatments for this problem?
Anyone else have treatments for this problem?
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