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  • #31
    Pain everyday for fifteen years

    I've had IC for nearly fifteen years. Since it reared its head first back in 1990 (perhaps even '89), I've suffered pain. In the beginning it was usually confined to nights. For the last ten years it's been constant; an everyday counterpoint to my daily life.

    It never goes away. The narcotics cut it to a dull roar. The pelvic floor spasms are helped by the Valium. But it never goes.

    In the middle of a bad flare as I right this. And that's after LOTS of Dilaudid for breathru pain. Well the pain's breaking the Dilaudid--not the other way around today.

    It tested my sanity at one point. But as an Auschwitz survivor once said, "Human beings can get used to anything."

    It's been so long since I had a completely painfree day I can't remember what it's like.

    I'd gladly take frequent urination (mostly conquered by Elmiron) over this pain.


    PS: I used to post under the name of Pain_Man.
    Last edited by Andrew_J; 08-11-2004, 05:50 AM. Reason: Word hashed up syntax.


    • #32
      I have everyday pain, I take demerol 50mg 4 pain & lortab 10/500 4 breakthrough pain. It still doesn't take the pain completely away! I hate waking up every morning cuz I know I'll be in pain. It is soooooooooooo frustrating!


      • #33
        Bloorze, :butterfly:
        I know just what you mean about waking up in the morning,that's if you have even had the chance to catch a hour or two of sleep.My psch dr gave me tranquilizers to help me sleep.I cant take them,they make me sleep way to long (around 4hrs max) and when I wake up I have so much pain that I crawl to the bathroom,crying in pain. It's to long to hold my urine.What in the heck are you supposed to do?I know one thing, something has got to give soon,because I can't go to much longer without sleep.I feel like a zombie.
        Love you all,


        • #34

          I have also had IC for a long time. 20 years. Waking up in the morning is the worst. I have to laugh when I hear the saying "God only gives us what we can handle". He must think I am some kind of superwoman here.

          Tranquilizers are not the answer for sleep. Every tranquilizer I have even taken has only given me 4 hours sleep.

          Elavil is much better for getting sleep. I still wake up about 4 times at night to go to the bathroom but I go right back to sleep. If you make sure you get 8 or 9 hours sleep the getting up is not so bad.

          There is an article on Fibro and IC if anyone is interested I will post the link.



          • #35
            Pretty much pain every day lately. In the past I had mild pain almost daily, but very mild. Now it's bad pain daily and when I can't stand it, I use Hydrocodone.


            • #36
              Hey Ginny,Could you post that site? I'd like to read it! Thanks!Hope everyone is hanging in there!


              • #37
                Dana :
                I too have pain every day and it gets worse at night. Uggg. i know how ya feel and by reading the post i see that many of us have pain every day. for me, everything can cause a "flare". to me, a flare is something which happens when the 24/7 pain keeps me in bed 24/7 for days at a time. unable to eat or even shower. thank goodness for my bother & fiance'! things like foods, drinks, vitamins, stress and gosh forbid i should even try ... sex ... oh gosh i pay for it days and days even for weeks after a few moments of joy! sorry not meaning to get too personal. but seriously it's so aweful. i use the prescribed Rx's everyday and lots of advil, heating pad and ice packs. and prayer. hope you find reliefe! take care. Lv. Kara


                • #38
                  Just wanted to say I am also a member of the 24/7 Pain Group.
                  What my URO and I call a "flare" are those days when my pain jumps up past 5.
                  I use a modified version of the ICN Pain scale. I have a little paragraph for each level. I gave copies to my doctors (PCP, URO, Psychologist) so they can correctly interpret my pain. My score is lower than what most people use but it gives my doctor a lot more info about my disease. Here's a brief version of my scale.
                  Level 1: No symptoms of IC
                  Level 2: Slight symptoms, but can "forget" pain if distracted.
                  Level 3: Mild symptoms, constantly aware of pain, can perform daily activities.
                  Level 4: Moderate symptoms, need to rest frequently, need to be near bathroom.
                  Level 5: Intense symptoms, using everything I have, I am in bed, sleeping a lot
                  Level 6: Intense symptoms, having trouble sleeping, nauseated, still feel in control
                  Level 7: Severe symptoms, can't stay still because of pain, starting to lose control, questioning whether this is "just" a flare.
                  Level 8: Out of control, may be vomiting, calling doctor for advice or going to ER if after hours.
                  Level 9: Pain is intolerable, I am crying, I am in ER regardless of time of day.
                  Level 10: Pain is excrutiating, I just want to die

                  I live at 3-4 mostly. Our goal of therapy is to just keep it below 5. I keep a daily journal and include void times (and amounts once a week) and pain score with each void. I was only at 10 once...before IC diagnosis when I had been drinking 1/2 gallon of cranberry juice a day!! UGH!!! I didn't know!! I was in ER for 11 hours that day!! My urine was bloody, but no infection. I was vomiting. And I was starting to pass out from the pain. It was awful!! They told me to stop the juice and research the IC diet online and an appointment was made to see a URO. Life has been difficult, but at least it has never been that bad.

                  My URO told me on day one, that IC patients who state pain as their biggest issue are the ones that are most difficult to treat. He warned me that I would, at the very least, have occassional pain for the rest of my life, and could possibly have some amount of pain every day for the rest of my life. Unless a cure was found. He said our focus was to give me the best quality of life and to protect my other organs from medication side effects. Some may say he is harsh, but I appreciate his honesty. And his trust. If I say my pain is over 5, we discuss options and he gives me a new prescription. IC is a horrid disease with different levels. The 24/7 club is the worst. It means your life has been forever changed. But we will survive....TOGETHER!!!

                  Hugs to all of you in the club!! You are not alone!!
                  Audrey Rose

                  PROUD ICN ANGEL SUBSCRIBER!!


                  • #39
                    IC and Fibromyalgia

                    Here is the article on IC and Fibromyalgia Ginny



                    • #40
                      I'm thinking the question should have been:

                      Does anyone NOT have daily pain.

                      I vary usually at a 2-3, but lately a 4 with an occasional 5 day.


                      • #41
                        I can sympathize with the 24/7s. I can't even imagine those of you who have had this pain for years. I'm just a 2 week dx newbie but 24/7 pain for 4 months. I started Elmiron and know it may take time but need some short term relief for the pain. I can't even stand at the sink to wash dishes or start a load of clothes without sending my bladder and PF into spasms that double me over. I've tried Pyridium, Prosed, and ibuprofen. I take Vicodin only to dull my brain enough so I don't care. The most comfort I get is on my back, with ice and Vicodin. Hope to see my uro or at least talk to him today. Linda


                        • #42
                          Welcome to the boards! i'm sorry you have ic but i know i felt better when i knew what the pain was from. it's a hard disease to have, well any disease is hard i suppose. i hope the elmiron helps you. have you asked your doctor to send you to a pain clinic? i know exactly how you feel about not being able to stand long enough to do the dishes or how it hurts to do laundry. also, i like to wear makeup now and then but i can't because i'm unable to stand in front of the mirror long enough. mascara? forget about it. or do my hair up nice? nope. always put it in a braid and call it good. i hope you'll be able to find some reliefe! let us know how you're doing. take care. Lv. Kara


                          • #43
                            Thanks for the support. Today is better! I started on Elavil two days ago. It seems to have made a difference. I am uncomfortable but not so much pain anymore. Hopefully the Elavil, Elmiron and diet are my answer. I didn't think I would write this a few days ago so all of you who are experiencing pain 24/7 hang in there. I got better and hopefully will continue to improve.



                            • #44
                              Ginny, Thanks for posting the article site.It was very interesting.Actually,I had an appointment with my GP today,and she basically said the same things.I don't know if she had read the article,or already knew.I hope all you 24/7ers are doing ok.This is such a hard thing to deal with and it's hard sometimes not to just feel hopeless.But we have to keep our hope.For the past five days,I have been taking only 1 oxycontin a day,along with all the rest of my meds.I have to kind of fight the pain for a few hours in the afternoon,but at least I'm not a zombie all day!Everyone take care! Melissa


                              • #45
                                Well, I'm definitely one of you 24/7ers....For years, the pain was constant, but I was able to push through it most of the time so I could work & take care of things at home. I loved my work and it was always an escape from my pain for me. In 1998, though, my pain finally got to the point where I could do nothing but lie in bed and cry. I started out screaming, but eventually I didn't have the energy to do that anymore. Once I was diagnosed, I willingly tried every option that I read about or my doctors suggested: DMSO & Heparin instillations, Flonase instillations, Elmiron, Neurontin, Elavil, Allegra, sachral spinal chord stimulator, Acupuncture, Relaxation & Biofeedback. Primary pain meds: went from 10mg methadone --> 20mg methadone --> 20mg Oxycontin --> 40mg Oxycontin -->80mg Oxycontin. Right now, I'm at 80mg Oxycontin every 12 hours. Breakthrough meds: started with Vicodin, then 5mg Oxycodone and now I have 4mg Dilaudid (2-4 every 4 hours for breakthrough).

                                I have to say that as of this moment, the most helpful treatment I have been given has been my pain meds. Nothing else has made the slightest difference in my pain. Even as it is, my pain is almost never below a 7 and often a 9 or 10 on a standard pain scale. I can't sit up, stand, walk, bend, ride in the car or do just about anything without my pain getting worse. I only sleep for an hour or so at a time because I wake up in agony as my bladder fills....I have had to accept the fact that my prior life is over and this is my new one.

                                As I have posted in other boards, though, God has brought me to an activity that I can do without making things worse: motorcycle riding. For whatever reason, the focused vibration on the perineal area tends to drown out the pain signal. Plus, the vibration on the erogenous zones stimulates my body to release endorphines and pleasure sensations which tend to negate the pain (at least while I'm riding). It's not a cure, or even an option that can help all the time, but it gets me out of bed and gives me a reason to hang on during the really bad days when even riding is not an option.
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                                Judy Sonnenberg [email protected]
                                "Most folks are about as happy as they make up their minds to be."
                                --- Abraham Lincoln

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