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  • #16
    Snowgirl wrote:
    "taking that much of pain meds you listed above is a lot . You need to be on long acting pain med which would be safer for you and pain better controlled. You wont need 6 day you are taking short acting pain pills ..... you are also taking a lot of tylenol there.
    If you went to pain MD he would first thing take you right off all that oxycodone and put you on long acting.
    wow I cant even get my pain MD to give me two vicodin a day and no way he would ever give me oxycodone.

    I suggest pain consult with pain MD. It must be your family MD giving you your pain meds and with new DEA changes coming I would consult pain MD for better and safer pain managment. good luck"

    ***

    Hello, Snowgirl--

    Well, I take that many pain meds because, frankly, I'm in a great deal of pain, at a level more than enough to make life not worth living if it's untreated. Chronic pain that regularly feels like I've been clubbed with a metal bat and that, when I wake in the morning, feels very much like I was hit by a car during the night. As for your mention of tylenol, I'm not taking any Tylenol. Not sure why you have that impression. In fact, I specifically requested a pain reliever from my doc that didn't include acetominophen or other meds. I wanted control of the drugs I took, and not indiscriminately take the drugs drug companies want to piggyback onto Oxycodone.

    A long acting pain med gives me no control over how much I take, and when I can take it. With shorter acting Oxycodone I can take it when I get up in the morning. That way I don't have to literally crawl around the house on all fours for the first couple of hours of my day, something that gets old very, very quickly .

    One of the first people I saw for pain in New York was a PA who, as part of a preliminary appointment with a pain management office, did try right away to put me on a pain drug that wouldn't allow me to adjust for the peaks and valleys, without even enquiring into my needs--I had to be adamant with her. I strongly prefer NOT taking the meds when I'm not in pain, or not taking the meds during the occasional half day when I feel all right, or when I have plenty of sitting to do and sitting is not painful

    I do in fact see a pain management doc and he's the first doctor I've had who has been really, really good about making sure I'm not undermedicated for pain. Please be sure I'm not referring to you when I say this but, sad to say, the suspicion those of us who do genuinely need opiate pain relievers endure can be unpleasant and demeaning. I had to take the matter to my doctor, to hospital administration, and finally to the State's Attorney General's office when a nurse in my doctor's office attempted to blackmail me by withholding my prescription for Oxycodone unless I submitted to what I've since learned is called "suspicionless drug testing". I refused and after a week of back and forth the hospital, which had apparently been involved in a scam pushing the homeless through their drug rehab facility and billing the state accordingly, backed down. It was, as you can imagine, extremely unpleasant.

    Out of curiousity, why do you say "It must be your family MD giving you your pain meds..."? My family MD is the unenlightened fellow who during my last appointment launched into a long, fear-ridden lecture about addiction. I personally don't doubt that I am addicted, but in a very real sense--and I don't mean this in the least bit lightly--what of it? My life is livable now. I can go out, spend time with friends, compose and play music, pursue (albeit part-time) my architectural practice, and so on. I even came perilously close to getting into a nice relationship this past spring!

    If, by addicted, you mean that if I suddenly stopped taking Oxycodone, I'd start to shake and sweat and be miserable for awhile, you'd probably be right. But, again, why is that a big deal, given the alternative? Without Oxycodone, or a pain reliever of comparable strength, I'd regularly be in agony, unable to do much of anything, and probably in a nursing home, or some kind of assisted living facility. What I'm asking you, in all sincerity, is what is it about "addiction" that you find troubling for people in my situation? If you want to reply to that, I'll address anything you have to say in the best of faith.

    If you were in real pain, I was sorry to read your description of a "pain MD" who wouldn't give you even two vicodin a day. I'll look for some links, but in the mean time, let me note I'm well aware that UNDERmedicating pain is a serious problem in the States. Certainly finding a balance is the key, but in my travels I've personally known at least a score of folks for whom two Vicodin a day or less would barely make a dent in the terrible pain they regularly live with. I can only hope folks who suffer find compassionate doctors who will help them get the relief they need and that is so easily available.

    By the way, can you also tell me about or give me a link wrt the new DEA changes you mentioned? It might help me to know what's coming. NYS, for instance, has just made getting certain pain meds more difficult to get. It's difficult enough as is, and it's a shame when they merely make our lives harder.

    Comment


    • #17
      Originally posted by ICNDonna View Post
      I couldn't help noticing that you are "drinking a lot of coffee" --- coffee is almost always a bladder irritant for an IC patient.

      I hope you are able to get your medications adjusted so you will feel better.

      Sending gentle hugs,
      Donna
      Hi Donna,

      Don't know if that was meant for me, but if so, thanks for your concern. While I'm guessing at the reason, it does seem like the Elmiron I've been taking for the last couple of years has all but done away with the bladder irritation that used to continually torment me.

      For anyone who is trying Elmiron, it took me at least a year after starting to take it before my bladder irritation decreased noticeably. I believe a bland diet also helped some.

      Comment


      • #18
        Paradoxical Relaxation

        Originally posted by Mothergoose View Post
        No I haven't I will have to look up what that is.

        MG
        It's a very useful method developed by Dr. David Wise as part of what he calls the Stanford Protocol for treating IC. He details it very well in his book, A Headache in the Pelvis. I know it has helped me a great deal in learning to relax my bladder.

        Comment


        • #19
          Terazosin was likely the cause of my fatigue

          All,

          At the time I posted this thread here, the early morning of September 12th, and in seeking a reason for the fatigue that was making my life all but unlivable, I had gone off Terazosin for two days. After two more days I started to feel dramatically better. Not always hale and hearty, but since the 15th I've entirely lost that terrible feeling of chronic exhaustion.

          I went on the Terazosin a while back because a similar drug, Doxazosin, didn't seem to be doing as much to relax my bladder as I and my urologist had hoped. In the eleven days I've been off Terazosin, it hasn't gotten more than very slightly more difficult to urinate, so I'm very glad for the trade. Have to say, I'm surprised to think that 90mg/day of Oxycodone isn't what caused my terrible fatigue, but I haven't changed the amount of Oxycodone I take, and have even had my schedule discombobulated by going into the hospital the morning of the 21st to have my bladder injected with Botox, and other than sleeping a fair bit after i got home last night, have felt respectably energetic.

          Comment


          • #20
            Originally posted by arkitekton View Post
            Thanks for the feedback, all.

            dlenore, I did start at 5mg a day back in 2006, but the usual thing happened. The dose became ineffective, so I stepped it up. I've tried to reduce or at least maintain dosages by taking drugs like Cymbalta and Lyrica, but those drugs make me feel like my IQ's dropped 20 points. I can't get out much any more, so not being able to think clearly makes life feel very much not worth living.

            It does feel like fatigue and depression are at least as much a problem as pain is. The next problem is, how do I cut the dosage and keep the pain manageable?
            arkitekton - if you have been building up tolerance for many years, that is understandable. Have you tried rescue instillation yet? vaginal Valium has also been mentioned by some patients on this board. With all the things you are going through, chronic fatigue is a very understandable symptom. My heart is with you <3

            Comment


            • #21
              Originally posted by dlenore View Post
              arkitekton - if you have been building up tolerance for many years, that is understandable. Have you tried rescue instillation yet? vaginal Valium has also been mentioned by some patients on this board. With all the things you are going through, chronic fatigue is a very understandable symptom. My heart is with you <3
              Thank you, dlenore, very much. Well, as I'm a man, vaginal valium won't help much . Wish there was a male version of it, but there doesn't seem to be.

              Elmiron helped a lot with the burning inside my bladder that used to drive me up the wall, so what's left is the urgency I get 30-60 times a day that turns to pain all too quickly if I don't/can't go. Do you ever have that problem, in the sense that you're out and around but the inability to urinate just turns your time to misery?

              I did have my bladder botoxed a couple of weeks ago. No improvement. What is your educated guess as to what instillations might accomplish for me? They're about the only thing I haven't tried.

              Thanks,
              ark

              Comment


              • #22
                Arkitekton, your post about pain meds and quality of life is so right on and exactly the way I believe. Pain meds are not just for the streets anymore. We take pain meds to live life to the fullest not to escape stress of living. To many people are not receiving the help they need because of the fear from medical persons not educated to understand there is a difference. My Doctor just chewed me out for not taking enough of Oxycodone (no fillers) I told him I was not afraid of becoming an addict but that they would become ineffective. He said " so what, we'll find something else that will work." Go live your life to the extent that you can and stop worrying. I am, I do and GOD Bless the Doctors that understand. Hug, Ziggy

                Comment


                • #23
                  I appreciate your post, Ziggy. The fear of abuse is so prevalent that it dramatically interferes with our ability to get the relief we need in order to function in the way we prefer.

                  You know, it's almost funny. Thanks to all you good folks here, the encouragement and education I've received, and a couple of docs who've known their stuff, my bladder and back problems really aren't that bad any more, at least most of the time. It's the fibromyalgia that started three years ago and has gotten progressively worse that's doing me in these days.

                  Thanks again for letting me know you found my post helpful, Ziggy. That matters a lot to me.

                  Hugs to you too,
                  ark

                  Comment


                  • #24
                    You talk about severe urgency that builds up. I'm thinking that might have something to do with all the coffee you're drinking? Making it worse at least.
                    Also, when you say that you wake up in lots of pain until you take your pain medicine, could it be that you're already going through withdrawals, so the pain is intensified a lot more than it would be otherwise?
                    I'm adamant about pain management, but it seems like you're getting really defensive instead of considering the effects of the oxy and not taking into consideration what people here are saying might be a better alternative (ie. taking an extended release medication daily instead of allowing your pain to escalate if missing a dose.) It might be easier to treat your pain all the time, instead of "being in control of it" so you don't get into a pain cycle.
                    21 years old
                    dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

                    ♥ looking for a way or medication to help stop spasms ♥

                    Comment


                    • #25
                      This is the first ad hominem attack I've experienced here.

                      I'm startled that you'd question my motives without even troubling to quote any relevant sections of my post. It's unseemly, and has no place whatever on a site like this. I'd appreciate it very much if you stopped, immediately! One useful guide is, talk about your experience. You say you're adamant about pain management. Please tell us more, and help the group.

                      At to the content of the rest of your post, you raise two good, interesting issues.

                      1. Withdrawal symptoms overnight--this is something several of us have considered, and after testing the hypothesis, rejected, at least in my case. (It certainly could be true for other people. I have no way of knowing.)
                      In my case I've often gone six to eight hours without taking oxy--the same amount of time I'm in bed at night, sleeping, or trying to sleep. I don't experience anything resembling withdrawal symptoms.

                      2. Coffee. I stop drinking coffee in the middle of my day. My symptoms with regard to urgency don't change.

                      With your third point, your criticism in unwelcome. I've said extended release doesn't work for ME. I've taken into account what people have said. I always do, and I'm very careful about it. Your comment about XR and the cycle of pain is very unclear. At any rate, could you do me a favor, and not comment on my posts? This is the first time, as I've noted in my title, above, that I've experienced a post like yours. It's unpleasant, and this is not the place for it.


                      Originally posted by polygon View Post
                      You talk about severe urgency that builds up. I'm thinking that might have something to do with all the coffee you're drinking? Making it worse at least.
                      Also, when you say that you wake up in lots of pain until you take your pain medicine, could it be that you're already going through withdrawals, so the pain is intensified a lot more than it would be otherwise?
                      I'm adamant about pain management, but it seems like you're getting really defensive instead of considering the effects of the oxy and not taking into consideration what people here are saying might be a better alternative (ie. taking an extended release medication daily instead of allowing your pain to escalate if missing a dose.) It might be easier to treat your pain all the time, instead of "being in control of it" so you don't get into a pain cycle.

                      Comment


                      • #26
                        Two questions to the group:

                        1.I've just started taking Savella, with no reduction in my fibro symptoms after four days. Does anyone know how long it takes for Savella to be effective if it's going to be?

                        2, Does anyone dump half their dose of Lyrica when it comes in the capsules that can be opened? 100mg of Lyrica is often too much for my need--which is a fast acting reduction in the symptoms of fibromyalgia--and can leave me stuporous, so I open the 100mg capsule, dump half out, close the capsule, and take it that way.

                        Briza--a year after taking Elmiron, for the most part I stopped experiencing bladder irritation, as I noted in this thread. I haven't heard that starting and stopping coffee has anything to do with urgency, particularly as that urgency doesn't change for me. Liquid intake is what increases urgency, AFAICT, without regard to what kind of liquid. To put it simply:

                        When I drink a glass of water in the evening, it increases urgency.
                        When I don't drink a glass of water in the evening, my urgency doesn't increase.

                        When I cup of coffee in the evening, it increases urgency.
                        When I don't drink a cup of coffee in the evening, my urgency doesn't increase.

                        Also, as I noted, fibromyalgia has become my worst problem. Without it I'd probably (optimistically) be able to cut my Oxycodone intake in half. When I wake four times at night, urinating makes my bladder pain disappear. My back problems never really interrupt my sleep any more. To get back to sleep I often have to take half a 15mg tab of oxy and 50mg of Lyrica to cut the fibromyalgia pain enough to fall back asleep. I also live in a very noisy area, which makes this all something of a nightmare, to be honest. My landlord chose early this morning as the appropriate time to grind paint off the sheet metal roofing literally five feet away from my bedroom wall. Sometimes I really do feel like I'm in hell. I'm sure I'm not the only one.
                        Last edited by arkitekton; 10-18-2011, 01:58 PM. Reason: clarification

                        Comment


                        • #27
                          Bri--thanks for the links.

                          Btw, why would I ask a pharmacist? The essential point is that the typical dose of 100mg of Lyrica can be overkill, and that it's readily possible to halve that dosage. OTOH I've seen 100mg of Lyrica in tablets that don't seem to be splittable. I'm letting folks know that without compromising our safety we don't have to confine ourselves to given dosages when it's well known that Lyrica--in this instance--can have severe side effects. 50mg doesn't affect me adversely. 100mg often does. I imagine that's likely to be true for at least a few other people.

                          Comment


                          • #28
                            Originally posted by arkitekton View Post
                            I'm startled that you'd question my motives without even troubling to quote any relevant sections of my post. It's unseemly, and has no place whatever on a site like this. I'd appreciate it very much if you stopped, immediately! One useful guide is, talk about your experience. You say you're adamant about pain management. Please tell us more, and help the group.

                            At to the content of the rest of your post, you raise two good, interesting issues.

                            1. Withdrawal symptoms overnight--this is something several of us have considered, and after testing the hypothesis, rejected, at least in my case. (It certainly could be true for other people. I have no way of knowing.)
                            In my case I've often gone six to eight hours without taking oxy--the same amount of time I'm in bed at night, sleeping, or trying to sleep. I don't experience anything resembling withdrawal symptoms.

                            2. Coffee. I stop drinking coffee in the middle of my day. My symptoms with regard to urgency don't change.

                            With your third point, your criticism in unwelcome. I've said extended release doesn't work for ME. I've taken into account what people have said. I always do, and I'm very careful about it. Your comment about XR and the cycle of pain is very unclear. At any rate, could you do me a favor, and not comment on my posts? This is the first time, as I've noted in my title, above, that I've experienced a post like yours. It's unpleasant, and this is not the place for it.
                            Wow, see this is what I mean about getting defensive when questions or suggestions are given. And I take major offense to call me or my motives unseemly and question the validity of my opinions expressed on this site: 1) that is uncalled for and 2) if you didn't want suggestions, why did you post in the first place? This is a place for sharing, yes, so I decided to share my opinion. Not everyone has the same opinion or outlook as you.

                            I am supportive about people getting pain management when it is justified so as to not create more pain and more muscle tension to an already stressed out body. However, I also think you should be on a medication that works for you, and try to be on the lowest acceptable dosing. If you are constantly raising the dosage of pain meds (because of dependence and tolerance), then it would seem they aren't suitable for you and a long-release might be favourable. Withdrawal is not something to take lightly, or dismiss when discussed because, for example "I'm not addicted", or "it doesn't happen to me" etc. It is a clinically significant issue, and taking an extended release medication for long-acting pain relief, and adding another medication for breakthrough pain, seems to be the pattern that most on this site use. I.e. hydrocodone er for daily use, and oxycodone for breakthrough pain. It just doesn't make much sense to me, and kind of irresponsible to take high doses of pain medication whenever you want or only when the pain gets severe, instead of working on decreasing OVERALL pain, giving a better chance to curb pain before it gets severe.

                            I will take what you say, and not post anymore on this thread, as I feel you've been very rude to multiple members (as well as Briza and Donna, whom I find inspiring), and don't seem to be looking for any actual advice. I also can't help but laugh at the fact that you are trying to insult me or bully me out of responding.
                            21 years old
                            dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

                            ♥ looking for a way or medication to help stop spasms ♥

                            Comment


                            • #29
                              It's impossible to reason with someone as aggressive as you

                              who literally REFUSES to actually read what I've written.

                              I take pains to be very, very clear. I described a capsule that could be OPENED, THEN SAFELY CLOSED. NOT a tablet that needed to be split. You're confused, are clearly looking for a fight, and despite the fact that I've specifically complimented people I disagree with and, in your case, thanked you for providing links, seem bent on projecting your own unhappiness onto me. YOU are the problem, here.

                              DO YOU UNDERSTAND THE DIFFERENCE BETWEEN CAPSULES THAT CAN BE SAFELY OPENED, THEN CLOSED, AS I DESCRIBED, AND TABLETS THAT CAN BE SPLIT?

                              Many of us have gone through years and years of unnecessary pain, misdiagnoses, and the like, with practitioners who can't be troubled to understand our situations. Threads routinely mention this or that urologist who has unnecessarily complicated a situation, disbelieved symptoms, and performed needless surgeries, and so on. Your need to pick a fight by misreading a clear post is so utterly unnecessary, and exactly the kind of thing so many of us have had to deal with elsewhere, and come her specifically to avoid.

                              It's often necessary to take charge of our own treatment. SAFELY Avoiding unnecessarily high doses of drugs with severe side effects, just as I described, is part of taking charge of our treatment. It's impossible to have a problem with that unless you're looking to bully people and start a fight. Take it somewhere else. You started this with me. I didn't start it with you.




                              Originally posted by Briza
                              You would need to ask your pharmacist if it is SAFE to split a capsule of Lyrica. Not all tablets/capsules can be split safely. A pharmacist could assure the safety of that for members here who are taking that drug, not YOU.

                              You seem to take offense or negate most suggestions (and reasonable ones at that) that are offered to you. What's up with that. Actually, I find your posts and behavior here suspect so will avoid any further posting in your threads.

                              Comment


                              • #30
                                This is extraordinary. The two of you are the first people

                                I've ever had trouble with on this site.

                                "Wow"? Seriously? I asked you to stop attacking me.

                                I ENCOURAGED YOU TO LEAVE ME ALONE. I . It was clear we weren't likely to agree, and I peacefully suggested you stop even as I noted a couple of interesting points you made. Yet, you refuse to leave me alone when I've asked you to. That's the very definition of harassment. You start a fight, you start out by being aggressive, and you somehow manage to take offense when I call you on that? That's typical bullying, friend. People who go on the attack, and when it's pointed out, attack again.

                                That's harrassment, and I have reported it as such.

                                AGAIN, PLEASE LEAVE ME ALONE. THAT'S NOT WHY ANY OF US COME HERE.
                                It's obviously a complete waste of time, and clouds important issues.

                                Originally posted by polygon View Post
                                Wow, see this is what I mean about getting defensive when questions or suggestions are given. And I take major offense to call me or my motives unseemly and question the validity of my opinions expressed on this site: 1) that is uncalled for and 2) if you didn't want suggestions, why did you post in the first place? This is a place for sharing, yes, so I decided to share my opinion. Not everyone has the same opinion or outlook as you.

                                I am supportive about people getting pain management when it is justified so as to not create more pain and more muscle tension to an already stressed out body. However, I also think you should be on a medication that works for you, and try to be on the lowest acceptable dosing. If you are constantly raising the dosage of pain meds (because of dependence and tolerance), then it would seem they aren't suitable for you and a long-release might be favourable. Withdrawal is not something to take lightly, or dismiss when discussed because, for example "I'm not addicted", or "it doesn't happen to me" etc. It is a clinically significant issue, and taking an extended release medication for long-acting pain relief, and adding another medication for breakthrough pain, seems to be the pattern that most on this site use. I.e. hydrocodone er for daily use, and oxycodone for breakthrough pain. It just doesn't make much sense to me, and kind of irresponsible to take high doses of pain medication whenever you want or only when the pain gets severe, instead of working on decreasing OVERALL pain, giving a better chance to curb pain before it gets severe.

                                I will take what you say, and not post anymore on this thread, as I feel you've been very rude to multiple members (as well as Briza and Donna, whom I find inspiring), and don't seem to be looking for any actual advice. I also can't help but laugh at the fact that you are trying to insult me or bully me out of responding.

                                Comment

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