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In worst flare I've EVER experienced

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  • #1

    In worst flare I've EVER experienced

    To whomever wants to hear a flaring vent~

    I have been in a flare now for 2.5 days now. Usually my flares are only a few hours long to maybe a day. I was having dinner on Tuesday night everything was fine, after dinner and after drinking a BUNCH of water during dinner, I had to pee. Once I peed I was thrown into a horrible flare. Bladder pain so incredibly horrible. As soon as I got home from dinner I took some Darvocet and hoped it would just go away while I slept. I woke up with even worse pain on Wednesday and had to go to work for 5 hours... took some more Darvocet while at work to make it through my shift. On my lunch break called my doctor's office begging for an instillation that day. My doctor called me back once I got home from work and called in more Darvocet (since I had only had 2 doses on me and obviously needed some more) and told me to be squeezed into a bladder instillation appointment on Thursday. I got a BI yesterday morning and was told to begin Singulair. I was told this is allergy season and it doesn't surprise her I'm in a flare.

    I hate allergy season. I don't even have seasonal allergies, but obviously my bladder does. How do we cope with flares like this? The Darvocet is only taking the edge off, it's not even killing the pain. I don't want to be on narcotics and Darvocet usually kills my pain. I am still SOOO new to all of this IC stuff and ever since my cystoscopy in January my IC symptoms have been worse... will it ever calm down to what it was before my cystoscopy?

    I am sorry for being so negative and annoyed, I know that won't help me get through this flare. I just want the flare to be over with. When will it end? This freaking SUCKS!

    ~Samantha
    IC Diagnosed: January 3, 2007
    Pelvic Floor Dysfunction
    Vulvodynia

    Meds:
    Estrostep FE
    Urocit K
    Prelief (as needed)
    Urelle (as needed)
    Darvocet (as needed for pain)
    Singulair (for seasonal allergies affecting the IC)
    Cymbalta (for the pain)

    Have been on and off too many to list because of adverse reactions...
    Tags: None
  • #2
    Samantha,
    Everyone gets negative at some time or another. It's really hard to deal with a flare and it can bring out the worst in us. Do you have anything to help with the bladder pain itself? You can get over the counter AZO or the dr can give you an rx for prydium which is the same stuff in AZO just an rx. There are also some other ones out there. I'm personally on Urelle, not only does it have something in there for the bladder pain but it helps stop bladder spams.

    Have you tried a heating pad. When I'm in a flare I usually have it just about attached to my pelvis. Some people say that cold feels better for them so you'll have to try and see what else helps.

    I saw that you don't like to take meds but alot of us are also helped by a low dose of an anti-depressent, I don't really understand the chemistry behind it but I know that it helps with nerve pain. I was pretty much having some amount of bladder pain everyday and then my dr put me on Elavil and I can have some days that are pretty much pain free now.

    I'm sure some other people will have some other suggestions. If you haven't already done so you should check out the patient handbook at the top of the page, you can find the IC diet there and that helps a lot of people with their pain once they figure out what foods trigger them.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment

    • #3
      Griffsmommy~

      I am on urelle and I do the IC diet. This flare was not a food flare. I had even taken Prelief since I was at a restaurant and wasn't 100% sure what the food was cooked in/with. My doctor doesn't like starting with antidepressants and I personally don't want to be on them. I don't like to take meds, that's true... but everything that my doctor is suggesting in regards to meds I am trying. I am just so ULTRA sensative to oral medications I have to be REALLY careful. I am prone to depression and anxiety so the side effects to some of these meds are just that. The heating pad and ice packs have definitally become my friend. I appreciate your suggestions... I HATE IC!
      IC Diagnosed: January 3, 2007
      Pelvic Floor Dysfunction
      Vulvodynia

      Meds:
      Estrostep FE
      Urocit K
      Prelief (as needed)
      Urelle (as needed)
      Darvocet (as needed for pain)
      Singulair (for seasonal allergies affecting the IC)
      Cymbalta (for the pain)

      Have been on and off too many to list because of adverse reactions...

      Comment

      • #4
        You are not alone. IC does suck. I hate my IC and my stupid bladder! I hope that you get to feeling better soon. I am in a flare too and have only worked 2 days this week. Don't have any advice just sending big hugs your way. This too shall pass.

        Comment

        • #5
          Welcome to the flare club, just wanted to tell ya I am right there with you now. Hugs

          Comment

          • #6
            Thank you for your support.

            Even though this is a horrible flare... my worst one yet... I am starting to feel gross because I am just laying around taking medicines and trying to rest. Should I even CONSIDER getting up and going swimming or for a power walk or should I just totally rest and take my medicine and allow myself to try to sleep my way through this flare? I am laying here looking at how gross I feel and how I want to lose weight but also know I am in loads of pain when I start moving around a bit. I HATE IC! ( I know I keep saying that... but I'm really frustrated)
            IC Diagnosed: January 3, 2007
            Pelvic Floor Dysfunction
            Vulvodynia

            Meds:
            Estrostep FE
            Urocit K
            Prelief (as needed)
            Urelle (as needed)
            Darvocet (as needed for pain)
            Singulair (for seasonal allergies affecting the IC)
            Cymbalta (for the pain)

            Have been on and off too many to list because of adverse reactions...

            Comment

            • #7
              I am sorry to hear your having such a bad flare. Maybe there was a hidden ingredient the food you had. Also, have been checked for a uti? My latest flare started with one. Whatever the cause is I hope you get some relief real soon.

              Hang In There
              TexasHoney
              TexasHoney

              Let's keep praying for a cure.
              IC Symptoms began in early 2001
              Divorced : Sept 2002 (Partly due to IC)
              Diagnosed with IC in April 2004
              Most recent injury - Rupurtured Left Achilles Tendon
              Wed Jan 28 2009               (Ice Storm Accident)
              2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
              Other Injuries
              Broken Left Ankle - July 2004 ( fell off ladder)
              Broken Left Ankle (Again) - May 2005 (car accident)
              Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

              CURRENT MEDS
              Elmiron, Pyridium

              Comment

              • #8
                Thanks TexasHoney. It could have had a hidden ingredient. However just in case I took 3 prelief. I haven't been checked for a UTI but i don't have burning. My bladder just still feels like it's being squeezed even with very little on my bottom or nothing at all. My bladder also keeps spasming. It started on Tuesday evening and it is already Saturday morning and I'm STILL in this flare. When is it going to end?!?!?
                IC Diagnosed: January 3, 2007
                Pelvic Floor Dysfunction
                Vulvodynia

                Meds:
                Estrostep FE
                Urocit K
                Prelief (as needed)
                Urelle (as needed)
                Darvocet (as needed for pain)
                Singulair (for seasonal allergies affecting the IC)
                Cymbalta (for the pain)

                Have been on and off too many to list because of adverse reactions...

                Comment

                • #9
                  I'm right there with you Samantha! I'm going on week 8 of my flare!! I've never had one this bad or for this long and it's really getting to me. I HATE IC TOO!! Will I ever feel normal again? I'm starting to wonder.

                  Hope your starting to feel better.

                  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!

                  Comment

                  • #10
                    Any reason your doctor hasn't had you try one of the classic antihistamines for treating IC? They have somewhat of a different action than other antihistamines.
                    Kim

                    Diagnosed August 2001

                    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                    *****************************

                    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                    Comment

                    • #11
                      SHe did try an antihistimine and I had panic attacks on it. Got pulled RIGHT off.
                      IC Diagnosed: January 3, 2007
                      Pelvic Floor Dysfunction
                      Vulvodynia

                      Meds:
                      Estrostep FE
                      Urocit K
                      Prelief (as needed)
                      Urelle (as needed)
                      Darvocet (as needed for pain)
                      Singulair (for seasonal allergies affecting the IC)
                      Cymbalta (for the pain)

                      Have been on and off too many to list because of adverse reactions...

                      Comment

                      • #12
                        Yikes! That's not good. I hope the Singulair works.
                        Kim

                        Diagnosed August 2001

                        Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                        Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                        I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                        *****************************

                        “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                        “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                        Comment

                        • #13
                          So at this point I believe I've had enough of this flare. I am taking everything prescribed to me and I'm still in this flare. It has now passed the week mark. I am so sick of this. I am at least now a bit more functional but it's really annoying. My bladder hurts, I am leaking a little bit, and I keep having to pee every few minutes. When is this flare going to ever end?!?!?
                          IC Diagnosed: January 3, 2007
                          Pelvic Floor Dysfunction
                          Vulvodynia

                          Meds:
                          Estrostep FE
                          Urocit K
                          Prelief (as needed)
                          Urelle (as needed)
                          Darvocet (as needed for pain)
                          Singulair (for seasonal allergies affecting the IC)
                          Cymbalta (for the pain)

                          Have been on and off too many to list because of adverse reactions...

                          Comment

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