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  • #16
    Good Luck, Hope you feel better. Three days is a long time to wait when you might have an infection. Try some AZO Standard(over the counter bladder relief), if you get some relief, it's probably an infection.

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    • #17
      I have had to take continuous pain meds for SEVEN YEARS STRAIGHT now.

      W/O pain meds..the 24/7 horrific pain I have is unbearable. Never was sure it was "just" IC since pieces of my bladder and blood come out in my urine quite often and PAIN is my primary symptom 24/7.

      But I will say that after 64 medications/treatments..I finally had to admit to myself that I had to treat the PAIN or I would not survive.

      I have always tried to UNDER medicate due to fear of being forced into w/d's. I HATE having to take pain meds and the fact I have for SEVEN YEARS but I would not be here to help others w/o them. NOR would I function AT ALL. And I refuse to "up" my dose even when docs know I need to..because it's as if they set you up for a "situation" eventually plus I am too sensitive to side effects EVEN AFTER SEVEN YEARS 24/7 meds.

      But I can't live with this pain w/o help for it. The female pain doc I see now cringes when I see her...I think she actually can imagine what I am feeling. I have no life but I have more "life" than I did w/o the pain meds at least.

      Dependence is a "side effect" of taking continuous release pain meds. I don't think there is one patient on 24/7 pain meds that does not understand the symptoms/risk of withdrawal. If there is, in my opinion, they and their docs are to blame for not keeping actively informed about their treatment and the "risks" and "side effect symptoms" associated with it.

      Those of you lucky enough to NOT have 24/7 pain should not take constant release medications. But those of us that DO have horrific 24/7 bladder pain...that makes us unable to function

      I admit I get "angry" when I read the word "flare" or how someone is "cured". After SEVEN YEARS of 24/7 bladder pain I have lost hope. But at least some days WITH the pain meds I CAN get up if only to move to couch or go get the mail. I feel NO mental effects from them whatsoever and NEVER HAVE...lots of other side effects but not mental ones or being tired or drugged.

      I am extremely sensitive to meds and cannot tolerate up'ing my dose enough to reduce my pain to a level most probably still couldn't deal with sadly. I get violently ill which most don't after just a few DAYS on pain meds..after seven years of constant ones, the ill side effects still hit me far too often.

      I also get angry when I hear folks confuse dependency with addiction. They are completely different. Too bad MEDICAL INDUSTRY so called experts often don't know that.

      I know the first time I am hospitalized or unconscious or injured or something I will go through forced w/d's. And I have NO FAMILY to help me through it or even explain it to medical personnel. But it's a risk I'm willing to take in order to get pain down from 10 to 7 every day and "stay around" in case there someday IS a cure for me.

      To those that just have "some" pain or only flare pain. That's great. Celebrate that. BUT please do not ever "judge" those of us NOT lucky enough to be in your shoes for taking constant pain meds as prescribed.

      Diet and the rest of the tricks for IC did NOTHING FOR me and many of the experimental things only made me much worse. The only time I have not felt bladder pain is while under general anesesia..of course I wasn't awake either.

      Please no one take offense...just sharing MY own feelings/experience.

      It frustrates me to see the pain section under a primary heading of IC FLARES. WHAT is a flare I ask myself. To me, a "flare" is what I used to have when I was younger and had very bad UTI's or sexual activity based urethra/bladder bleeding/pain/inflammation/infection.

      But..living with horrific 24/7 bladder pain for over SEVEN YEARS straight is not a "flare" in my book. It IS PAIN. It needs to be treated. And since it's 24/7 it needs to be treated 24/7.
      Last edited by ICNDonna; 05-23-2007, 01:38 AM.

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      • #18
        I am so sorry you are going through so much pain, that is awful. I totally agree that if a person has non-stop horrible pain that is relentless, then they need to be on pain meds.

        As someone else on here said, there is a HUGE differenece between addiction and dependency. Addiction is when a person who has no pain takes pain meds, where dependency is where the body becomes dependant on the pain meds and this can cause the withdrawl issues when a pain med is stopped after being on it long term continuously.

        But come on, lets weigh the facts here. I mean a person that is in alot of pain that is continuous has no choice but to be on pain meds in order just to be able to function. I read an article about chronic pain and how it should be treated and the damage that leaving pain untreated can do. Well, did you know that leaving chronic pain untreated can cause more harm to you that any pain med ever could. If a person is in chronic pain that is left untreated, what happens is it causes severe stress on the body and how we function. It will cause depression which will in turn lower your immunne system and that alone can cause alot of things to happen( sickness etc..), not to mention the suicide rates.Also there is the lack of sleep that comes with being in constant pain. Being in pain causes wear and tear on the body, especially if it is long term pain. Just think about it, when you are sick with the flu, you have pain and body aches. Well of course you will get over the flu, but just think of how it leaves you weak for a few days after you have gotten over it. Well with IC and the chronic pain, you are left feeling like this continuosly, so your body does not even have a chance to recover.

        Anyhow, so what I am saying is that yes, pain meds do have side effects and can cause some problems when taken long term, but then again, every prescription med has the potential to do this. I wish to God that I was able to take a pain med somedays but I cant because I get sooo sick from them and they cause me terribe side effects( severe nausea,retention etc..). Just wanted to share my feelings. Hope you all are hanging in there.
        Jen

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        • #19
          Post was edited

          Originally posted by Pain View Post
          Last edited by ICNDonna : Today at 05:38 AM.
          I would like to know why my post was edited.

          It was chopped up, doesn't make sense now, took out some of my own personal explanation and experience the pain has had on me.

          I understand my posts can be blunt..not as blunt as suffering with bladder pain 24/7.

          I don't think it is right for a moderator to edit a post. Especially when this is done not even contacting the post originator with an explanation as to why or giving them the opportunity to do so themselves.

          This is why I left this site many years ago. It seems whenever I reached out for support/understanding, I was "edited"/"censored" because I was too honest, unable to sugar coat my experience.

          Good luck to all of you in dealing with IC and specifically those who like me suffer with 24/7 pain. We have lost several over the years...

          My hearts and prayers are with you as I know most of you are with me.
          Last edited by Pain; 05-23-2007, 12:42 PM.

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          • #20
            what was edited out?

            We know the difference between dependence and addiction. Addicts take meds for the feelings of the meds or the High. And people dependent their bodies eventually need the meds and become ill without it.

            I forgot to say, dependent people take the meds for medical reasons.
            Last edited by blue; 05-23-2007, 11:40 AM. Reason: left out last sentence.

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            • #21
              I don't know what was edited either, but I did still understand your post and feel your pain. I'm sorry that you have been suffering for so long with no relief. I was diagnosed 13 years ago, and I have pain non-stop most of the time also. There have been occasional periods where my pain has been much more bearable then other times, so I do understand where your coming from and know how hard it is to deal with all the time. I feel your frustration and know how the pain can really mess with you physically and emotionally. I hope you won't give up on the boards again though, because we all do understand what your going through and sometimes it's just really nice to be able to vent and share to other people that do understand how you feel. I hope you'll continue to share how your feeling.

              Kari
              Kari

              I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

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              • #22
                It is not rare at all for people with chronic daily pain to become physically and mentally addicted to pain meds. Yes, there is a difference between physical dependence and addiction.

                But they can also intertwine. If you have been taking pain meds daily for 1, 2, 3, 4 years and one day just stop you will go into the same exact withdrawals as someone that was "addicted" to pain meds. Withdrawals are withdrawals.

                No one wants to admit that they enjoy taking pain meds. Many don't enjoy but many do enjoy taking pain meds. A)they help with pain B)they cause your brain, to release more endorphins which in turn make you feel good.

                I think there are a lot more people out there that like that feeling of "feeling good" then will admit. Why would you admit that you get a little feel good off the meds, then people would automatically think your an addict.

                People that have been on controlled released drugs and breakthru drugs for a couple of years, and take exactly what is prescribed, will still find themselves having some troubles of weening off the pain meds. It's not your fault but the nature of opiates.

                It changes your brains chemistry. When you become tolerant of a pain med dosage and it no longer works, you brain has developed more receptors that need covering, higher dosage will cover those new receptors. Then on and on and on it's a vicious cycle. But don't worry about the withdrawal until your ready to actually do it. Take the meds that allow you to live your life. If God created it, it was for a reason

                Amy

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                • #23
                  Had to weigh in

                  Hi--I, too have been on continuous pain medication after years of suffering. I have gone into remission a few times and when I did I tapered down with the help of my wonderful pain mgmt doc. It was not the easiest thing sometimes b/c I get impatient and would cut more than I should and would go into withdrawal but as soon as I went up It was fine. The key was to taper slowly and no problem. This has been my experience. Truly pain meds gave me my life back and when spontaneous remission hit I could not wait to get off them which is the difference b/w addiction and habituation. Feel good--Malone

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                  • #24
                    Agree w/ post by Pain

                    I wish I knew your name but "Pain" I totally agree with everything you said! I do not have flares but everyday unremitting horrible pain that is undertreated! It is ruining my life and I can no longer work anymore because of the pain! If I ever get so lucky to have my pain management Dr realize that Norco is no longer effective anymore and by some miracle I get 24/7 pain relief I will have a life again and maybe be happy again and be able to go to work again. I am miserable and hopeless because of this horrendous pain.I wish I had only "flares" once in a while instead of this nightmare of a life with 24/7 pain! I do not believe in addiction when someone takes pain meds around the clock to survive when they have chronic pain like this!

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                    • #25
                      pain meds.

                      I have had ic for approx 30 yrs. and I have been thru a lot of [ain meds. At first the pain was not so bad and I took them only as needed and went for days without them, but after a while and getting progressively worse I prayed a lot and lost friends, family members, and even telephone ministries for prayers because I was in so much pain. I don,t think some people quite understand everything including myself, but I needed some quality of life and I believe that quality is as or more important than quanity. I pray that we find a healing for tis stuff, but I still think pain meds. are like everything else,. I have had well meaning people tell me they would not take pain meds and I wish I didn't have to, but Pain can be worse on a body and family than pain meds.I have one life and I would like to enjoy it as much as possible. I guess it is different for everyone, I don't think I could have even been a decent mother with the pain I was having to endure. I hope no-one is affended by what I am saying, but pain is hard on the mind. body and the spiritual things. bless you all.
                      Sandymarie

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                      • #26
                        I have not read every response in detail, but will chip in as an RN at Moonheart's request.

                        There are differences between physical dependence, psychological dependence, and TOLERANCE. Your body gets used to a particular dose of pain medication and requires a higher dose to have the same effect, and this requires you to take more over time to achieve pain relief. This is why most opiates have no "ceiling" dose. Where meds like NSAIDS have doses that you absolutely cannot take more of, things like morphine do not. In opiate-naive patients, there are doses that quite literally would kill them. In patients that take them long term for severe, chronic pain, these doses not only take away their pain (hopefully), they are alert, can function, and can also drive, do detailed work, perform their usual household work as well as their jobs outside of their homes, etc.

                        Physical dependence WILL occur over time. This is not the same as the psychological dependence, although I believe there are elements of that that play in to any patient with chronic pain patients on meds. You WILL freak out and be afraid if you do not have your meds or for some other reason, be unable to take them, because you are afraid of the pain. You are not taking them for the "high," however, and that is the most important part, and what people that DON'T take them for pain do not seem to understand. I think that when you have severe pain and take opioids, you do not experience that high that you would if you take them and DON'T have pain. Does that make sense? IMO, it is that way with any med. The more you have of whatever you take that med for, the less of the side effects you experience...to a point, of course. I know that I got REALLY drowsy taking Nerurontin, even though I have nerve pain that the Topamax helps with. I think that with opioids though it is especially true. I feel a little more of that head-buzzy feeling with the Percocet if my pain is a little less severe (and over time, that has lessened greatly). When I first began taking opioids for my endometriosis 12 or 13 years ago, I was absolutely loopy on 15 mg of codiene.

                        I hope this post is helpful!
                        32 years old

                        former Med/Surg RN

                        endometriosis x 13 years (with attempted/ failed complete removal in June 2008), IC diagnosed with cysto/hydrodistention April 2007, second cysto/hydro in June 2008

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