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  • #16
    I have pain every day. It ranges from a 6-10 on the pain scale. This has been going on for well over a year. My pain is worse in the morning. It feels like hot shards of glass poking around in my bladder and coming out my urethra. I also have severe bladder spasms that I feel into my back and down my legs.

    My uro started me out on Percocet and Vicoden. When that wasn't controlling the pain he put me on Oxycontin. Then our insurance started refusing to pay for it! grrrr
    So, I was put on MS Contin. Now our insurance pays for the generic Oxycontin.

    I now take (generic) Oxycontin 80mg every 12 hours. Morphine Sulfate 10mg sublingual tablets as needed (up to one pill every hour), Vistaril 50mg at bedtime, Elavil 75mg at bedtime, Prelief before meals and Phenergan suppositories as needed for nausea.

    I have tried the instills, Methadone, Elmiron, Neurontin and many other things... nothing has helped other than the narcotic pain pills.
    My GP thinks that I need to increase my pain pill dose, however I am refusing to do so.
    If and when the pain gets sooooo severe that I can't handle it I will reconsider.
    It seems like my dosage now is extremely high, but I have been on them for a long time.

    I should mention, I have had a second opinion for the University of Washington (Urology and the Pain Clinic). They feel the above treatment is all I can do at this time.

    I do wish you well and hope that you can find something to ease your pain.

    Comment

    • #17
      I wanted to update my reply as it has changed. I am now on oxycontin 20 mgs three times a day and have been diagnosed with Fm as well. I hurt every day but it has become easier to live with since being on the oxycontin. The oxycontin usually wears off in the night and I have unbearable pain in the am when i first wake up until the meds kick back in. I'm much better off than I was when I only took lortab 5 each day.

      Wishing all of you a pain-free day/night :-)
      Morgan Stone

      Comment

      • #18
        I 2 am in pain 24/7. I was diagnosed 01-02 & have been in constant pain ever since. It really sucks! I used 2 work full time & go 2 school part time, now I can do none of that. I am in tears writing this, I really want my life back! I can't work or go anywhere cuz of the pain. I have 2 take demerol 4 the pain. I don't know why the pain won't just go away. I am so depressed, I just had a nerve block, with no results. How is that possible? The pain hasn't changed at all. I even have an interstim. It helps the urgency & frequency perfectly, & the pain somewhat. When its not on the pain is a million times worse! So it does help, but not enough that I can be w/out my pain meds.

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        • #19
          Well...
          Add me to the list of chronic 24/7 pain...My PM is great, and I tried a 24 hour er morphine, Avinza, but it made me so sleepy and nauseated, I am now trying the Duragesic patch, but am not sure it is going to work, either...I also have IBS and my stomach constantly hurts, too, so I can hardly stand to live with myself, can't imagine how my poor family feels...I asked my PM about the Oxy as I noticed that several of you are on it, but she said it would "tear up my stomach"...??? Right now my stress is really making it worse as my Mom lives with me and she has lung cancer, has had surgery, lots of complications and now we are waiting for new tests as they think the cancer is not gone, like they first thought, next to my husband she is my best friend and I just feel like crawling in a hole and staying there...anyways, good luck to you all and I hope we can ALL get some relief...
          Take Care,
          Kif
          Always try to do the right thing; it will astonish some people and gratify the rest- Mark Twain



          DX: IC-2003, Systemic Lupus w/secondary Sjogren's-2009, Total Hysterectomy with BSO-2005, IBS-forever it seems, Renal Tubular Acidosis, Vitamin D deficiency-2008, Vulvar Vestibulitis-2002, Pudendal Neuralgia-2008
          I also try and manage depression/anxiety, Migraines, Too many kidney stones to count-starting in 1991 to the present
          I had my 1st urethral surgery at age 4, have had urethral syndrome from then on.
          Failed treatments: Elmiron both instilled and oral caused severe increase in liver enzymes
          Elavil and Ditropan-severe bladder retention
          Currently on pain mgmt, lidocaine gel topically also gives some relief after initial 2-4 min burning when applied.
          Prior treatment included pelvic floor therapy and TENS unit, both of which I still do as needed.

          Comment

          • #20
            Kif,
            So sorry to hear about your Mom. It's bad enough to be in pain all the time, but then you're thrown into something happening with your family. Sending an to watch over you.

            I also have pain 24/7. Two Interstims have controlled the frequency/urgency/burning most of the time...and, brought things under control enough that, with meds the pain can be brought down sometimes. After 9 years of IC and much experimenting with meds, here is where we are:
            My "cocktail" is Elmiron, Neurontin, Hydroxyzine, Vicodin, Trimethoprim,for medications; but it is only during the twice daily instillations of 0.5% marcaine into the bladder that I have such a low level of pain that I feel normal.
            Just started Algonot Cystoprotek in Jan., and still take 2 tablets twice a day....I truly believe it is helping, and may opt to increase the dose if my uro OK's it.
            Even though it's so hard to even think sometimes at my doc's...with the pain and the medication fog....that's where we are.....not great....and NOT the way I want to live my next 50 years....what keeps me going is thinking that there are others...and even children who cannot speak for themselves....who are worse off than I am.....Not pretty, but some days, that's what I have to do.

            Hope this helps!
            Best to all
            Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,

            SusanC

            Comment

            • #21
              I have had pain every day for the last 2 months. But my pain medicine seems to be taking off the egde of the pain

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              • #22
                I,too am in constant pain.It's much worse than frequency.Now taking oxycontin,klonipin,surmontil,zoloft,neurontin and sometimes phenergan.Was on duragesic patch,but stayed nauseated.As far as weight gain,it is definitely a problem for a lot of us.I discussed with my doctor the effects of elavil and weight gain,and was switched to surmontil.It is new,does the same thing as elavil without the weight gain side effects.I don't get on the scales,but I have dropped a clothes size,so that is a positive! We all just have to hang in there,and keep trying things until we find what works for us.It seems everyone has there on combination that works,at least for a while.Blessings to all.
                Melissa

                Comment

                • #23
                  HAND UP....Me too....I too am in pain 24/7. Althought I hate to see so much of us in constant pain, I am glad the post is here. I was wondering if it was only me. Thank goodness my dr. believes in pain meds and understands the pain of IC. I have 750 mg. of vicodin for my pain and I have morphine suppositories for when the bladder spasms are driving me crazy. This past Tues. I took 2 vicodin and a suppository and was still in pain. Thank goodness it's not that extreme every day...I'm not sure I could survive it. Some days I just break down and cry...it is so depressing & frustrating. Love to all my fellow ICers.

                  DIANE

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                  • #24
                    clarification

                    Originally posted by donutgirl
                    I have 750 mg. of vicodin
                    Just so no one panics..the 750 is the "Tylenol" component of the drug Vicodin. The hydrocodone is likely 7.5 mg (or 5mg or 10mg). There are two numbers separated by a / - the first is the hydrocodone, the second is the Tylenol. Just thought it might be good to mention that.

                    I am sad to see so many of us suffering but as I suspected, it truthfully no longer is only a very small percentage. My doctors suspect the 24/7 pain and/or close to it is much higher than first reported.

                    Sadly, many uros report the frequency/urgency and "suspect" that the pain is tied to those two symptoms when in fact for many of us the pain is severe 24/7 regardless of the f/u symptoms.

                    Thank you to ALL of you who have come forward and shared in this thread and others. It's so hard to take it one day at a time but that is what we have to do because everytime I think of living like this for another 20+ years I go "black". I've had 24/7 pain 4 years, 6 months and 14 days now but hey who is counting.

                    I do get angry at the VERY SMALL PERCENTAGE of ABUSERS of our medications that are making it more and more difficult for those us who need our pain meds to live to get them.

                    Comment

                    • #25
                      A warm hello to everyone in THIS thread,
                      Im right with all of you on the 24/7pain.It is so hard to deal with every day life having to live with so much pain everyday.Im also so sorry that there are so many suffering everyday,but glad that I am not the only one.It is also nice to read the stories of those whose pain is under control,on the other hand hard to read them because I am sort of envious of you,and praying for my ship to come in.So far though,my ship is sinking.Could someone please throw me a life-preserver?
                      Wish you all better days.
                      Amy
                      Last edited by Amyinagony; 08-09-2004, 01:34 AM.
                      Love you all,
                      Amy

                      Comment

                      • #26
                        Hi Amy...

                        I'm sorry to hear you too are in pain 24/7. When my IC began, it began with just frequency and urgency. However, it quickly progressed to pain for me and now I am forced to include myself in the 24/7 group... *sigh* I take MS Contin (long acting morphine sulphate) 2x a day, and keep Lortab (hydrocodone) around for breakthrough pain... in addition I am going to be starting physical therapy for my pelvic muscles.

                        I really believe a lot of this "progression" had to do with a toxic job situation that I have just recently decided to leave... as we are doing okay financially I've decided to hold off on looking for another job. Instead, I am going to dedicate the next 2 months to my health and see if I can get myself out of this vicious pain/frequency/urgency cycle.

                        I feel for everyone posting in this thread...
                        ****
                        Jen

                        *Diagnosed with severe IC in 2004
                        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                        **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                        Comment

                        • #27
                          Hi Jen,
                          Good name for this group: The 24/7 Pain Group
                          I have a 'toxic' job to,but cannot quit.I am in debt up to my eyeballs with mega medical/doctor bills (over $10,000. and that is after my insurance paid)and bills that I could not pay while I was out of work the hole time before being diagnosed and since to.I am writting down all of the pain meds that everyone here is mentioning and taking the list to my doctor to let him know what other people take.Maybe I can try something different that would help me get better relief.This is just flat out and totally rediculous to have pain like this everyday.
                          Love you all,
                          Amy

                          Comment

                          • #28
                            Amy-- it stinks to feel trapped in your job doesn't it... I stayed at my own toxic job for 3 years longer than I should have, first for financial reasons just like you, then from some screwed-up sense of duty and a desire to further my career. So I know what it's like... I hope things improve for you as soon as possible!!

                            In the meantime, I hope you're able to find some pain relief options that work for you!!! I think it's a great idea to compile a list of options to take to your doc with you.
                            ****
                            Jen

                            *Diagnosed with severe IC in 2004
                            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                            **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                            Comment

                            • #29
                              Hi all,
                              Wow! I hate to see that there are so many of us! Amy, here is a life preserver for you...hang on, tho I can swim, the undertow can get rough...LOL... Seriously, tho, I hate that you are not getting much relief, the chronic pain cycle, if not broken can really be hard on the body! I ordered the books from here, and I have also read Dr. Brookoff's papers on chronic pain and found it helpful to show to my PM Dr., too. Maybe that will help some of ya'll... I knew my pain was bad, I have had lots of kidney stones and one child, and when my IC is at it's worst it blows all of the other pain away!!! And, even tho it is not awful all the day every day, it does hurt every dang day...I am not having trouble getting the Dr. to help me with my meds, but I am having trouble trying to get used to them, and still try and work part-time, and be my Mom's full-time caretaker...I think probably something might work, if I could just get beyond the side-effects...(oops, I almost wrote side-defects, kinda think that may be appropriate, too)
                              Take Care,
                              Kif
                              Last edited by kiffy313; 08-09-2004, 05:04 AM. Reason: spelling
                              Always try to do the right thing; it will astonish some people and gratify the rest- Mark Twain



                              DX: IC-2003, Systemic Lupus w/secondary Sjogren's-2009, Total Hysterectomy with BSO-2005, IBS-forever it seems, Renal Tubular Acidosis, Vitamin D deficiency-2008, Vulvar Vestibulitis-2002, Pudendal Neuralgia-2008
                              I also try and manage depression/anxiety, Migraines, Too many kidney stones to count-starting in 1991 to the present
                              I had my 1st urethral surgery at age 4, have had urethral syndrome from then on.
                              Failed treatments: Elmiron both instilled and oral caused severe increase in liver enzymes
                              Elavil and Ditropan-severe bladder retention
                              Currently on pain mgmt, lidocaine gel topically also gives some relief after initial 2-4 min burning when applied.
                              Prior treatment included pelvic floor therapy and TENS unit, both of which I still do as needed.

                              Comment

                              • #30
                                Oops...you are right Pain...guess that's what happens when I try to post at 2:48 in the morning. It is 750 tylenol and 7.5 hydrocodone. Sorry if I confused anyone. Hope today finds at least a few of us feeling better.

                                DIANE

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