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  • icnmgrjill
    replied
    Ok guys... I'm calling a "time out" on this thread and officially closing it. Fascinating discussion and I appreciate so much of the suggestions and advice given.

    Arki.... honestly, the coffee has to go. You're not understanding the physiology of the nervous system in the bladder. There are two dominant nerves.. the alpha afferent which controls frequency/urgency and the c fiber which controls pain. The high, unrelenting urgency that you are struggling IS evidence that the alpha afferent is being irritated badly in all likelihood by the coffee. The good news is that your cfiber has calmed down.. but the other nerve is stuck in a cycle of prolonged sensitivity, irritation. You've got to let the coffee go for atleast three months or, ATLEAST, be drinking Tyler's NO ACID decaf.. which would minimize the irritating quality of the coffee.

    Also, for the record, I strongly encourage any patient who is cutting medications in half (both capsules and pills) talk with their pharmacists first to see if it can be safely done with that medication.

    Nuff said... and let's just remember that patients in pain often say things and/or hear things not originally intended. I think that you all had excellent intentions here! Briza! You rock. Your comments were perfect IMHO!

    Jill

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  • arkitekton
    replied
    It's clear to me that you're a bully, and spoiling for a fight

    I won't tolerate it from you, here, or anywhere else on this site.

    It's truly remarkable. I've never had a problem with anyone else here. My exchanges with folks, without exception, have been kindly and loving in both directions.

    I've never heard of you, you start out by being challenging in an unpleasant way, aggressive, then looking for a fight. You twist my words completely in an earlier post, then you then quote me entirely out of context in a later post.

    I'll repeat, every single time you harass me and attempt to spoil the otherwise loving and kindly atmosphere of this lifesaving site, that

    I VERY SPECIFICALLY AND PEACEFULLY ASKED YOU TO LEAVE ME ALONE.

    You refused. I asked again, and again you refuse. By definition, you are a harasser and a bully.

    Your primary objection seems to be that I decline to tolerate your rudeness, bullying, and harassment. To be blunt, I never will.

    LEAVE ME ALONE. How can I be any clearer?
    Last edited by arkitekton; 10-18-2011, 08:25 PM. Reason: clarification

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  • polygon
    replied
    Originally posted by arkitekton View Post
    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?
    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 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 arkitekton View Post
    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.
    I have, in turn, reported you, for your rude conduct in this thread towards me and others.

    I leave you with a link about paradoxical opiate use - when they become ineffective as tolerance increases and the mechanism theorized behind it.
    http://www.anzca.edu.au/fpm/events/f...tolerance.html
    There are other places with information on how opiate use over time will cause more pain receptors to become active, thus being in more pain than before when lowering dosages.

    I have quoted what you said in just your last two replies that I see as unnecessarily rude and offensive. No one here is trying to fight with you, no one is passing judgment on you, but you're throwing a verbal hissyfit at us for no reason.

    Good night.

    EDIT: I would also like to note, that you have repeatedly insulted me. Calling me unseemly, telling me that I'm overreacting to your replies, telling me that my opinions are "clouding important issues" and a waste of time, as well as implying that I am not welcome on the board, is, to me, harassment. I also don't understand why you're saying I'm attacking you, when you "attacked" me in your very first reply to me. Your behaviour comes across as trolling to me.
    Last edited by polygon; 10-18-2011, 07:55 PM. Reason: adding more

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  • arkitekton
    replied
    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.

    Leave a comment:


  • arkitekton
    replied
    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.

    Leave a comment:


  • polygon
    replied
    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.

    Leave a comment:


  • arkitekton
    replied
    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.

    Leave a comment:


  • arkitekton
    replied
    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

    Leave a comment:


  • arkitekton
    replied
    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.

    Leave a comment:


  • polygon
    replied
    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.

    Leave a comment:


  • arkitekton
    replied
    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

    Leave a comment:


  • Zygala87
    replied
    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

    Leave a comment:


  • arkitekton
    replied
    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

    Leave a comment:


  • dlenore
    replied
    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

    Leave a comment:


  • arkitekton
    replied
    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.

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