No announcement yet.

Up & Down a Lot

  • Time
  • Show
Clear All
new posts

  • Up & Down a Lot

    Lately, I've been up & down a lot. It's frustrating.

    Friday, I felt okay in the morning, but by afternoon was flaring. So, I made it til the end of work day, then went home for Darvocet & heating pad.

    Saturday morning, felt great, went hiking 3 miles with a friend (short! 2 weeks ago did 9-10 miles no problem), had a picnic lunch, did grocery shopping. A friend came for dinner & we talked & laughed. Great time.

    Sunday: Woke up at 2:30 am in flare, did instillation, sleep 4am. Woke up at 9, ate, went back to bed. 12:00 Checked with home test for infection (none), did instillation & took pyridium. Stressed because I have an appointment & church this afternoon. I'll make it to the appt, but come home instead of church. (Fortunately, church posts sermons online). The instillation has worked, the pain is almost gone, I'm just sad.

    What set these flares off?
    Ritz crackers & American cheese Friday afternoon?
    1. My teachers' union is about to take a strike vote for possible strike before the end of the month. Very ugly & angry labor contract negotiation.
    2. Unpleasant problem with pharmacy formulary this week. They took nearly a month to fill the Darvocet prescription. Took so long, I had to request emergency refill at local pharmacy. Then when the mail order finally arrived, the pills were bright pink, even though my file says "dye free" & the doctor's prescription said "no red dyes". I had to fight & argue for nearly an hour to get them to redo the order & mail it express. Then when they mailed it, they charged me twice. Then told me that I have to mail them back the pink pills, which will cost me about the cost of the medicine. Jerks. But if I don't do it, it looks like I just got double the amount of painkillers I was prescribed...

    Allergies? (ears & skin itching)
    Scones containing buttermilk-had 1/2 Saturday night. ? Had 2 Sunday am. ?
    Blueberries--had 1/4 cup Saturday night. ?
    Hiking had some hills, but was short & I felt fine, so what the ?!!

    I am so tired of IC.
    (I wish there was an icon that could cry).

    I am not a medical authority nor do I offer medical advice. In all cases, 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.

    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest

    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

  • #2
    don't have any idea what caused your flare but it could be all the stress of work and the pharmacy and posting back costs etc?
    or that you are run-down and stressed and a normal hike tired you out even more and bladder not happy?

    It is frustrating when we don't know why a flareup happens or then goes away and then comes back pronto! I had been better lately but these last few days have had a few hours fine, then major flareup and then back again- would be tempted to say it was a UTI, but my symptoms do decrease sometimes. The Elavil that you told me about starting helping a lot - got rid of the constant urgency and working my way up to a dosage that will help even more. My doctor told me to increase it as needed. So when I upped to 20mg felt less pain as well as no constant urgency and flared last week so upped to 30mg and did well for a while.

    hopefully the instills will kick in and you can say goodbye to this flare
    IC diagnosis: Aug 2005
    Symptoms: Urgency, urge and irritation and urethral symptoms
    Flareup for 1 year til July 2007 (had constant urge and pain et al....)

    Elmiron 100mg 3x daily April 2006 - present
    Enablex 7.5mg nightly Sep 2007 -present
    Atarax, Elavil 10mg nightly (Dec 2007)
    Acupuncture - November 2007 - present

    (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)


    • #3
      I vote for stress! Stress can do awful things to us.

      Sending gentle hugs,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help:


      Diet list:

      AUA Guidelines:

      I am not a medical authority nor do I offer medical advice. In all cases, 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.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Yep, I think the stress. I can look at something that bothers me and instantly feel the tension start in my pelvis, and then the pain is not too far behind.


        • #5
          Make that another vote for stress. I know I get the worst flares from stress, and it sounds like you've got quite a bit of it going on!!

          *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.


          • #6
            Hi Kadi,

            It could be stress??? I hope you are feeling better today. I have also been having a up & down week. I can only pin point mine to some physical work I have been doing. I was going really well, I had not had a flare up for two months straight. Sometimes you can go crazy trying to work out why the flare ups have happened.
            Formerly lorenab


            • #7
              I have been in the same situatuon lately. Good days and bad days. Sometimes good weeks and bad weeks. It's one the frustrating elements of IC, never knowing when a flare is going hit. Another problem I am having is not knowing whether it's a flare or a uti. Stress seems to always make my bladder feel worse. I hope you start feeling better soon.

              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


              • #8
                I also agree with stress. Hope things even out soon and you feel better.


                • #9

                  I am a very stressed out person...always have been.
                  A regular old worry wart if you will..

                  Do you think that is what caused this for all of us?

                  It was at a very stressful situation my IC first emerged...severly.

                  But retrospect...I recognize..that buring feeling..after I having been there for years..and years..
                  it just to stress to bring it out...

                  I still think it was something you ate.
                  Quit ELMIRON due to hair loss
                  Cystoprotek ROCKS!

                  find me on FACEBOOK -
                  search my email [email protected]

                  Current Meds:
                  AM Cystoprotek & ATARAX 50mg
                  Dinner CYSTOPROTEK
                  PM Elavil 25mg