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scared and in pain

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  • scared and in pain

    I cant believe that I am sitting here crying and writing this. I was dx 19 yearsago and for the past 10 years have been almost symptom free. Recently I was hit with something called postural orthostatic tachycardia and have been under alot of stress and new meds. Two weeks ago I tried to swim a bit and I had terrible burning. I thought it was vaginal (bladder has been off my radar screen) and got treated for a yeast infection. Nothing helped and the pain was unbearable. Yesterday I finally called my uro from way back when. I saw him and explained everything and he said I am having a ic flare up. It is so bad and I just don't have the strenght to do this right now. I am afraid that my cardio meds are doing this but all drs assure me that they aren't. Uro thinks it is all the stress of my new illness. I just can't believe that after all these years it could come back. He has me on pain killers to get me through and get things to calm down. When you are in this much pain you just don't hink it will ever end. I took elavil years ago but I think it was just time and hormone mangement that helped me to get better. I don't even know where to begin in terms of meds. My pain is a burning pain. Does the kind of pain determine the kind of meds you should go on? Any suggestions would be great.

  • #2
    I'm so sorry you are in pain again -- unfortunately, long remissions are possible, but the IC never goes away, and it is possible to have pain again much later, as you've found

    I have a feeling the Elavil helped you more than you know back then. You may want to add it back to your medication regime and see what happens now. You probably also want to check out the Treatments section of our Patient Handbook (link at the top of the page) -- there are new treatments that have been developed since you were diagnosed way back when, and I urge you to read up on them and even take the info to your urologist.

    You WILL find a way out of this pain.

    *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.


    • #3
      First off {{{{{HUGS}}}}} I am sorry you are in so much pain. I know what you mean about it feeling like it will never end when you're in the midst of it. Are the pain meds helping at all?

      Sounds like it could be the stress or the new meds - or a little of both. I hope you and your uro can develop a plan for treatment so you can get back to where you were before. Good luck!

      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


      • #4
        remission will come again

        flares come and go
        don't let it scare you...freaking out makes it worse

        burning = azo
        or drink 1 glass water w/ 1 tbsp baking soda
        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


        • #5
          Hugs, sorry things are crummy right now, hope you feel better soon.


          • #6
            Sorry you are having a flare...just try to rest, keep your stress level down as much as possible and drink plenty of fluids. You will get through this. Continue to work together with your docs to get the best meds combination for your symptoms.



            "A heart is not judged by how much you love; but by how much you are loved by others."
            ~ The Wizard of Oz

            "If I ever go looking for my heart's desire again, I won't look any further than my own
            back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


            • #7
              I was up most of the night and the day started off terribly. I called all my drs and they argreed that I need some anti anxiety meds. The pain killers help but they don't stop my mind and body from racing. Now I just want to sleep. Anxiety really is a contributing factor isn't? Thanks all.


              • #8
                I hope that you find your remission again. I am currently out of mind and I can't understand why. It does scare you and it's hard not to let yourself get freaked out.
                Mom to:
                Ella~born 10/14/03
                Travis~born 5/8/06

                Elmiron~2pills 2X a day
                Elavil~50mg at bedtime
                Had great results with this for almost 2 years. Currently in a flare since 1/9/07 Trying Urised, lidocane cream, Cystoproteck and now Benadryl at night to try and stop it.


                • #9
                  and to the board! I wanted to tell you I agree that the Elavil might have really been helping you a lot. Many people here have great success from it and it should probably be something you consider in a treatment plan.

                  If you haven't checked yet, take a look at the patient handbook link at the top of the page. I know you said you've had IC for years, but don't know if you follow the IC diet. Sometimes just getting the diet under control and finding those triggers is enough and you might not need any other meds.

                  I'm sorry that you're feeling so awful right now. I have a burning pain in my bladder as well, and definately know how that feels.

                  Again, welcome to the board! I hope you feel better soon!

                  *IC-- Summer 2004; PFD--October 2005
                  *Fibro--Fall 2000; CFS-- Fall 2000
                  *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                  Total Abdominal Hysterectomy--adenomyosis--9\08

                  04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


                  • #10
                    Hi all,
                    Thanks for you kind words. When I was in remission I could do it all, drink coffee, eat tomatos, run 5 miles a day, have sex and not pay for it the next day. I even had 3 kids, 5 kidney stones and a hysterectomy with no flare ups. The only thing that I had to avoid was tight jeans! So I am really concerned that my high salt diet and florinef (for Postural Orthostatic Tachycardia) has triggered this. The timing is too perfect. The salt could be pulling water out of my bladder wall and the florinef makes you pee out potasiumm which could have burned my bladder. My pain is a burning pain - no ache or spasms. Both my uro and cardio drs are away on vacation so we can't start to solve the problem until then. I am just trying to stay at home and keep my pain meds near by until that time. The depression and anxiety are hard to deal with but inevitable at this point. I wish everyone a symptom free day.