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.
Sorry for your pain, I don't know much about extreme RLS, but I know that when you go through withdrawls one of the common side affects is RLS ( which you probably know). How long ago did the extreme RLS start. I have never really heard of it being that bad, But i have know idea how to treat it. Not to sound rude but you say you have been on pain meds for like 14 years, long term use of opiates will change your brain chemstry. What is the longest you were off opiates?
i had the RlS before the pain meds. Alo it's genettic, my grandmother, couin, and my two daughters all shave it. I seem to be the worst at this point. I also had a really bad accedent that may have contributed ti it a well making it that much more of a ptoblem for me. I have alo been diagnosed with central neurve pain. okay to answer your question. I had been on and off for 14 years the first few years. in the beginning it was taken may-be twice a month using a half a pill right befroe bed when i was having a bad leg night. then it got to be a few times a week etc went from a half a pill to a whol pill etc. then it because everyday use. Now the longest time off was about three years in order to give all the other meds a try. Then my dr went back to the Vicoden 100 a month he would give me. That is when I found the compounded hydro with less tylonal in them to help with the liver. And found my on line Dr. Please research the law of e-visits and in state online drs okay because I keep getting poeple tell me it's illegal and it isn't. each dr and pharm have to be liecenced in the stat the meds are being shipped to or they can't do your meds if you are in a state that they are not licenced. Anyway i didi this for about two years. I went to detox a three day with brupinex. again I was badck on my pills the night I came home because I couildn't stand my RLS. I went back into Detox for 4 days last week. I was only given ultram and phenobarb. by the time ny dose was down to nothing the legs realaly let me have it. I got into a fight with the nurse all because she wouldn't let me take a shower at 1:00am. When the Dr gave me shower right due to the RLS condition. My problems in because I have the condition so bad to start that when the withdraw kicks in then I am sent a double wammy on the RLS. I just can't bear it. I hyperveolate and cry etc. to me it is worse than vomiting or just being in normal pain. I could be wrong, but for me it is. now since I have been home the longest I have gone has been 36 hours. before I gave in. I am hoping for at least 48 hours this time around. if longer of course.
You mentioned you tried bupernex and I am currently taking suboxone. I first started this medicine on Tuesday after a 48 hour withdrawl (withdrawal). I am feeling better but I did notice tonight that I feel lightheaded and a little out of sorts. I think I might have taken too much tonight or I am still getting used to it since today is only day 3 on it. The other side effect I am noticing as of tonight my calves feel tight like just worked out. not sure if this is from sitting at my desk for a while but tomorrow I am not taking as much. The doc said I will probably be at 24mg a day and so far today I did take 28mg which is not to smart. I seem to feel a little sick if I dont take a pill for a couple hours but the doc said he wants me to get to the point where I take all the mg's in the morning at once so I dont become so dependant with how long its been since my last pill which is how I felt on opiates. Sorry for telling you all this I just thought since you said you tried bupernex that maybe this is common for people in the induction period?
hmm I'm not sure to be honest. I didn't want to take any more than I was told to so i had to call the office to see what i was aloud to do. Some medications can do that to you. I know when I was taking the hydro I always knew when I took to much. I got sick to my stomach and felt drugged. I hated that feeling.
My legs always feel like I just worked out lol. only good thing about my condition is it keeps me pretty tone lol.
WoW sorry for all the typo's in the last post I didn't spell check. I'm really sorry about that. I know it can be really bothersome to some people.
I can't spell either no worries..lol I feel much better today I think its a combination of new meds and no sleep. But for me I am happy being on suboxone so far instead of oxycodone, I am getting my mind back.
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