Hello...I am a newbie here...have been doing alot of reading on several different types of posts. I will try to give a short background...but I can be long winded..I apoligize ahead of time. My name is Elizabeth..I am in Alabama. I am 34 years old...I have fibro, degenerative disc disease, low back pain, sciatica, migraines, severe nerve damage. I have 3 wonderful children and a very supportive husband. I have 2 teenage girls and a 3 (4 Nov 16) year old daughter as well. My 3 year old daughter is very hyperactive...it takes everyone of us in the household to handle her. Ok- more to the point of my question...I have been in pain management with the Doctor I am with now for about 8 years. I have never had one bad (meaning not positive for anything that was not supposed to be there..and always positive for what IS supposed to be there)...until these past few months. I have been on 30 mg Roxicodone for a couple of years now. My doc will not go up any further than 5x a day- which that is ok- I understand that- she says she cant due to laws or something. She has had me on a few different types of extended relief meds...MS contin...Opana ER...Kadian years ago. The Ms contin seemed to make me itch and wheeze, and the opana was working well...except for some nausea. Ok- here is where the problem is. Id say for the last goodness...coming up on a year soon...started about last December..I have either just been taking the Roxicodone so long that I have become very tolerant to it...or the generic brand I have been taking has gotten crappier and crappier- for loss of a better word. Even my doctor months ago when I told her I was having this problem- she told me that she was getting several complaints from patients about the Roxicodones from the manufacturer (Mallinkrofdt (sp?). She told me herself..."If you noticed back a couple years ago when you first started taking those...they were a much darker blue. Now they are nearly white. They are putting the minimum amount of oxycodone required by law. They dont have to actually put 30 mg in them!" Well- on my prescriptions..she always puts...take every 4-6 hours. But she has told me she can give me no more than 150 a month. Since I knew she wouldnt give me any more than that- I admit...at the beginning of the month..I usually take them every 4 hours..and then always tell myself I will make up for it at the end of the month. I am never able to do that- and always end up going through hell for the last few days of the month. I figured I should just keep my mouth shut about it. But eventually I talked to her about it again..and she tried me on Opana ER along with Opana IR 5x a day for breakthrough. The pain relief was great- but at first they made me really nauseaus and i ended up losing a good bit of them in the toilet from getting sick. So again- I ran out 3-4 days early. Of course I go in and get a UDS that day. I thought that I would still be ok- since I figured it had only been a few days and I thought it would still be in my system. I got my new script- and asked for some stomach pills to help with the nauseau. (sp) That month things went great. I was able to make my script last until my appointment...i was able to have some quality of life back...I was playing with my 3 year old daughter much more...able to do more chores around the house, and do so much more with my family. So- I go in for my next app. Doc says...Beth...ur Opana didnt show up in your UDS...I was about to explain the nauseau..and how I had it now under control. But before I could even open my mouth...she said...well it must not be working...I will put you back on the Roxicodone. I was a little dumbfounded...and said...well the opana is very expensive...so she puts me back on the Roxicodone with ms contin for breakthrough. Well- honestly- i KNOW EXACTLY HOW HARD IT IS TO FIND A GOOD PAIN MANAGEMENT DOC...so i just kept my mouth shut and went along with the change. But when I get to the pharmacy- i had a plan I hoped would help. I asked for the BRAND NAME roxicodone. well- when they called me to get my meds....WOW. The brand name was way over $100...maybe closer to $200. I asked them why my insurance wasnt paying anything on it...and they said it was because there are so many generics of the med available. :'(
so i had to ask them to put it back and give me the old mallincrap. Another side note...in all the years ive been going to her... we have always been able to get our refills on the 28th day. I never ran out early then. She started making it where we couldnt get our meds until the day AFTER our 30 days is up back months ago. As im sure many of you know...those extra 2 days really allowed me to be able to have one extra (which was still not more than my script said i could take) about ten days out of the month...and since i have horrible periods...those really helped me get through that week and a half or so. Well I just tried my best to grin and bear it. I know alot of people may think (as my doc prob does) that you have to sleep through the night- so there is time when you wouldnt need to take one on the fourth hour. Heres the problem with that. My husband works from 2pm in the afternoon unti anywhere from midnight until 4 or 5 in the morning. My schedule for my days goes like this. I wake up at 6 am with my teenagers to get them off to school. My 3 year old wakes up at 7 or 8 am. So- from that time until about noon- i have no help with her at all. Because my husband has to get sleep- he has a very strenuous job. So when he gets up- I help him get ready- and he helps me as much as he can with the baby until he has to leave at 1:30. Then again- its just me and the little one until about 3:30. When my girls get home- they try to help with her as much as they can- but they have lots of school work (both straight a students! :D im very proud of them!) Ok- so now Ive been going since 6 am. Finally at about 9 pm I get my baby to bed. Then a little later at about 10 my teenagers go to bed. So this is when i try my best to get some sleep before my husband gets off of work. Sometimes my baby wakes back up at 11 or 12 and stays up until 2 or 3...which is around the time my husband is coming in the door exhausted and starving. so if i am LUCKY...ive had 2 or 3 hours of sleep. i fix him something to eat...chat a little while...and then try to get a little more sleep at about 4 or 5....only to have the alarm go right back off at 6 am to start my day all over again. I am at the end of my rope here. Having EVERYONE in my family on a different schedule is pulling me apart at the seams. This is why there isnt this magical 8 hour period when I can skip a dose or 2. Thus...to keep going...and to stay out of pain and keep up with my 3 year old (her doctor believes she may have aspergers) I end up taking my meds every 4 - 5 hrs. Here i was again...running out a few days early...and going thru hell until my app...but keeping my mouth shut because I didnt want to ask for more med (the ms contin wasnt touching my pain..she had me on 30 mg twice a day...with that and the 5x a day roxicodone..i was still in pain..but it was bearable..if i took my meds every 4 or 5 hours. So of course a month or two goes by after being switched back to the roxicodone, and I come in- and its another UDS. So- I go back last month...and doc comes in and says...Beth...why is your roxicodone not in your UDS? I Just broke it down and said doc...i dont know if i have become tolerant..or if it is the brand...but I have been having to take them every 4 hours..and that is running me out a few days early. I also told her that the MS contin (which i assume showed up in my system because she didnt mention that- only the roxicodone) was making me kind of itchy and wheezy...so she said - ok let me get you something that will not make you itch and wheeze- and walks out- I didnt even get a chance to explain to her about the whole schedule and how I am having to get up and down all night with a toddler..
a second and sometimes 3rd shift working husband..and get up with my two school girls. So the nurse comes in and hands me a script...it was for opana er 20 mg, and 160 demerol 50 mg to take 5x a day! I asked the nurse if she could ask the doc if she could still give me the roxicodone instead of the demerol, and let me have that with the opana, and she said she couldnt. Im assuming this is because since i showed up negative..and I had explained that the roxicodone was just not lasting more than 3 or 4 hours...she had to make a change. I just said ok...well thank you. I got the med filled..and tried it out. OMgoodness...the demerol (which i have taken in the past 25 mg once a day along with roxicodone just for migraines..it worked well in that small dose in combo with the other med) it makes me so NERVOUS ALL DAY I FEEL LIKE I HAVE BEEN DRINKING GALLONS OF COFFEE. and the opana was helping ok- but with the demerol- the combo was leaving me in pain- and feeling really weird. I had to take my klonipin (which ive been on for years..no change there) just to calm down. Then I end up feeling sleepy and kind of drugged up. I CANNOT LIVE LIKE THIS! but i have been too scared to call and say ANYTHING for fear i may just get kicked out for the negative UDS. Even though I was running out early..i would always save a pill to take of my med for the morning of my app just so I could drive the 35 min to my app. I thought that would be enough to show up for my UDS but apparently not. :/ I have just figured...just suffer through..and then maybe when I go back for my app (nov 2) I can explain everything to her better. The 2 things that have worked for me have been the Opana, and the Roxicodone. After a few days of the Opana and demerol (the demerol kept me so nervous and the opana was a pretty low dose compared to what I was on before..she just gave me 60 20 mg. I called my pharmacist...who is the only one i have dealt with through all of these years..and we are even on a first name basis. I explained to him the med change...and that the generic roxicodone was just not working for me..and what doc had changed me too...and how nervous it was making me...and I said...just tell me how much the Brand name is again...maybe I can get Doc to give it back to me- I will just have to cut out something in my budget to cover the extra cost SOMEHOW. So- my pharmacist told me something that sounds like it would work out great- if my doctor would give me my roxicodone back..or either put me back on the also high cost opana. (along with something for nausea). Ok- he said when I go back- to tell her (I DID NOT KNOW THIS!) that if she writes specifically on my script of roxicodone...NAME BRAND NECASSARY...that my insurance would have to pay for it. Or some of it anyway- to where i would just have to pay the name brand copay- which is still high for me- $50..BUT would be do-able. Unlike the almost $200 I thought was my only choice. This past month has been so hard for me. Not only has my pain been bad...but the demerol is making me so nervous that I am just trying to stay away from everyone so I wont snap at them from either nerves or pain! After reading so many of your posts...I now feel blessed that she gave me ANYTHING...and didnt kick me out like I have seen happen to so many others. So- I guess my question is...does anyone have any advice? Or any ideas on why she would put me on all of that demerol? I was thinking maybe she did that to get my tolerance of the Roxicodone down some to where it would work again. And im sure she had to change to something else because of the neg drug screen. Does anyone have any advice on what I should say or how I should go about this? I just want to be able to take care of my baby and the rest of my family...they are all worried about me- as I have been mostly in bed all month in pain and nervous as can be. Im sorry this is so long...I suppose I am just nervous..and hoping and praying that I can talk to her and get her to change me back to either the opana er and opana ir for breakthrough, or to the roxicodone (and she had mentioned before she gave me the demerol...she said..well I could put you on Oxycontin, but everyone is complaining about the new formulation...and I cant do anything to change the formulation- no one seems to be happy with it.) I just feel like my life is in the hands of this doctor next tuesday..and my quality of life...and quality of the mother and wife I am is depending alot on what I am able to get my doctor to understand next tues. I am a nervous WRECK. anyone have ANY ADVICE?? Thank you so much- I wouldve posted sooner if I wouldnt have been so nervous all month. But now I only have a week left until my app, and I have got to get this straightened out. After going through all i have for the past few months- I realize now more than ever what a good thing I have had going with my doctor- and I am so afraid that I am not going to be able to fix this. :( thanks so much
It sounds like your doctor really cares about you! I would just stay on whatever regimen she has you on, since you failed a couple of UA's. Maybe others will be around with some advice, but I also think you should be really careful to take your meds as prescribed.
Thanks for your advice flower..I really appreciate your taking time to respond...you are right...all I can do is just talk with her and explain everything (hopefully in a much shorter version than I did here...SORRY! LOL)..she has been very good to me- and I think what I will do is write everything down- so even if she is in a rush- she can look a note over quickly maybe before I get back to a room and already know what is going on. Well...its another day now...now just 6 days to go. Thanks for the advice...just mostly needing to vent and see if any1 had any experience like mine...thanks flower!
I've got to say I'm truly amazed and you're one very lucky person! Probably most of us would be taken out of the group if we showed up negative for our UDS as many times as you have. I'm glad that you told the doctor the truth, but I do think that if you ask her one more time to switch that you may lose your pain doctor. There's only so much she can do for you before she could get into trouble. I know my pain doctor would release me if I tested negative for just one test. So, I hope your able to keep everything in your system.
I agree with the other two responders on this...and I know how hard it is, but I want to add to what has been said...
as a mother of a 3 1/2-month-old and a 2-year-old I understand how hard it is to try to deal with chronic daily pain and try to keep it together for everyone. but it's really really important that you try to take your meds for what they're prescribed...taking them a LITTLE early is something I bet we've all done when the pain is excruciating, but when you said "I have really bad periods and it helped me survive" that really worries me...because that means you're self-medicating. because we have strong painkillers available to us as chronic pain patients it's really tempting to use our pain meds for other pain in our life instead of going back to the doctor and saying "doc I banged my knee up", you know what I mean? but the meds are prescribed for a very specific cause and self-medicating for other problems can get us into loads of trouble. I think your doctor has been AWESOME and you DON'T want to lose her...but you also don't want to make her liable for problems with the DEA for continuing to prescribe to you against the rules...so for both of your sakes I would say take the meds a little early if your pain is excruciating, but for stuff that you can survive without using pain meds for, I would try to just grin and bear it. you're never going to be 100% out of pain...that's just not how narcotics work..if it can get you to mostly functioning at a normal capacity that's a really good target for pain management.
I know that you're in a lot of pain but you may want to consider stepping down some of the pain meds you take...very often we create a cycle that makes it worse because not only are we in pain but now we're dependent upon the meds for a quality of life..so if they aren't working anyway, like you're saying, I would take the bare minimum (the lowest effective dose at the maximum number of hours) to function and give it a month or two to lower your tolerance...then go to your doctor and say "let's start this with a fresh perspective".
I feel for you so much because like I said I have 2 little ones and it's sooo hard trying to function with chronic pain....but you DON'T want to lose this awesome doctor and it sounds to me like you may be on the verge. if I were the doctor I would be skeptical in order to protect my license, you know?
What you said was what I was trying to portray. We all take medications for chronic pain, and I understand that she's in pain, but I take ibuprofen when my pain is bad and when I know it's not time for my dose. And none of us want to lose our pain doctor, but because of the fact that she's run out "a little early" on several occasions and that she's been changed around medications and still "run out early" I know the doctor knows what's really going on. I don't think the doctor thinks she is taking the medication as prescribed. Maybe the doctor could prescribe Mrs. Cross Roads enough medication for 1 week only, and then have her come in for a pill count. Maybe if she is held accountable for her meds, and not given 1 month at a time, it wont' seem so easy to take a little more, here and there, until she runs out a week or more early. I know in order for you not to have any medication in your system means you haven't been taking the medication for many days, not just a day or two. You can study medications and they will tell you approximately how long they will last and I think oxycodone is around 5 days or so. I just feel bad for Mrs. Cross Roads because I really think she's going to lose her pain doctor soon. And with having the negative results when she tries to go somewhere else, they are going to see those UDS tests and question why the doctor kept prescribing narcotics when she kept coming up negative. I'm surprised that the dr. hasn't asked if she's been selling them, we see a lot on here, if people have negative results that the doctor automatically thinks they are selling them. I have most of the same symptoms that Mrs. Cross Roads has and I worry about taking my medication on time, and about the UDS. I guess some people just don't worry whether they will pass or not....
I agree completely with all you've said. I actually would've left it at "I agree" but I wanted to add my situation being that I have chronic pain and two small children so she understands that she's not alone but that it doesn't make self-medicating any more excusable.
I have been BLESSED to only be on one pain contract so far and it was for a short time, and I was never screened for drugs..I can't even imagine the fear because I know of so many false results....
but UDS or not, meds should be taken as prescribed. running out a "little early" is one thing once in awhile, but I agree that to her doctor it seems like she's pushing her luck and that she's going to lose him/her soon....
it must be scary...but remember we have to be accountable to ourselves for how much pain meds we take, not just our doctors.
I apologize if I sounded harsh in my other posts but I'm just very concerned about you and don't want you to lose the good dr. that you have. I re-read my posts and thought I may have sounded mean and I didn't mean that I'm just concerned. I hope your pain gets better soon!!
I think you have a wonderful Doctor and you need to very careful with your medication. Your Doctor can ask you at any time to bring in all of your medicine so they count it. You truly don't want to take the risk of losing your Doctor who sounds like she truly cares about you. Have you ever tried Cod Liver Oil, Fish Oil or Flax Seed Oil? It's actually one of the best ways to get Vitamin D which has been very helpful in many people's lives along with B-12 but you have to get it in the purest grades and most store bought formula's have a lot of additives. I think your a wonderful person who is trying very hard to take of your family. I give every Mother a lot of credit who are doing their very best to stay active. I would also recommend purchasing yourself a notebook where you can journal all of your information then you have resource to look back on. I truly wish you best of luck. I hope you feel much better soon!
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