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  • I went to see my PM doc on Tues.

    I was supposed to have an app. with him on the 29th but I called last Friday and asked to change it to an earlier appt. I took in my btl of pain meds and Valium so he could see that I'm not abusing or taking too many of them.
    I just realized last Friaday that I'm seeing a pain management doctor and my pain was NOT being managed.

    I have turned over a new "IC leaf" in that I'm SO sick of letting this pain rule my life. So I decided to be proactive. And rather than just saying "the percocet works "ok" I was going to tell the truth. It still REALLY hurt!! He was SO understanding. He prescribed me Fentanyl 25 mcg patches which I started on Tuesday. OMG, what a relief!! I haven't had an honest to God, even pain free moment (except in hospital on IV meds) since OCT!!! I have been peeing every 15 to 20 min since then. But since I started the patch on Tues, my pain is SO much better. It's not exactly gone. I'm still very aware of "where my bladder is" most of the time. BUT, it feels controlled for the first time. I can watch a 30 min TV show (of course with Tivo, so subtract commercial time) without popping up every 5-10 min to go "try". It's BEARABLE!!!
    I know some people have different opinions, even on this board, about whether or not strong narcotics should be used as they ARE dangerous. But I went into this after a LOT of research. I asked my doc a LOT of questions which he gladly answered.

    All I can say is it's the best thing I've done for myself since I was Dx'd. I think that I was afraid to say "what we're doing isn't working" because I was afraid of looking like a drug seeker!! Nothing could've been further from what happened. He talked to me for 30 min about this and options if this doesn't work, etc.

    And it's working!!!

    Like I said I still have some breakthrough pain, but that is also being managed. I'm SO happy!!! The happiest I've been since Oct. I truly now feel as though I'm getting my life back!!

    I also ordered a cushion from the IC shop (thank you to everyone who helped me to figure out which one to get) and it really makes car rides, even short ones, easier!!

    Finally, I ordered a copy of Ending Female Pain. I started with doing some of the easier yoga poses and immediately felt a difference in the muscles surrounding my bladder. I will be working my way thru the book and have very high hopes!!

    I truly believed I was going to have to live with the constant level of pain I was in, and I was preparing myself to do that. Now I feel like I have a new lease on life.

    As far as side effects, I haven't really had too many. It doesn't zonk me out or constipate me like the oxycontin did. Then only problem was a little dizziness and a weird metallic taste when I first put it on. Those are long gone.

    I know I'm SO blessed to have such a great PM doc who was willing to learn about IC, even though he's a "knee, hip and neck" PM doc. I know he has talked with other doc's about the best way to handle my pain and I'm so blessed to have him.

    Based on the relief I've gotten from this med, we've booked our vacation (we were going anyway, pain or not) and now I'm SO excited about it. I feel as though when I changed MY attitude, things began falling into place. And I'm so grateful and not going to take one pain-free second for granted.

    If you're seeing a PM and your pain is not being "managed" I urge you to have an honest discussion with your doc. It's the best thing I ever did!!

    I'm wishing you all a great day!! I think I'm going to lay low today. I had my hair colored and cut yesterday (first time since Oct) and I don't want to push anything!! Just taking care of myself!!!

    Katie
    Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
    Lexapro-20 mg
    Aciphex
    Ambien-as needed
    Percocet-7.5 up to 3 per day as needed
    Valium-10 mg x2 per day
    Phenergan-1 at night
    Prelief w/everything
    Now recovering from acute pancreatitis

    Currents treatments that help somewhat:
    Heating pad
    Hot baths
    Ice
    Being VERY still while lying down with legs elevated

  • #2
    That sounds great Katie! It also gives me a lot of encouragement as well!

    I had come to a place where I was settling for what relief I have and just "dealing" with the rest.

    Recently I decided that I needed to re-evaluate where I am with my treatment. What is working and what isn't. I took the step to call my Dr and ask for a referrel to a fantastic pain management Dr that I have known about in my area for a while. I am just waiting for two things right now: 1. my new insurance to start on April 1 2: the call from the PM Dr for an appt.

    My pain has been controlled pretty well but my pain med has such a terrible side effect that I still am unable to have a productive life. By productive I mean, able to do housework, fold laundry, take the dishes out of the dishwasher. Essentially, I have been living with controlled pain but completely bed ridden. This is not acceptable to me any longer.

    I am so glad you got the book too! You have probably seen my previous posts on how much I love Isa's book. It is terrific and so user friendly! You can basically jump right in and find relief quickly.

    Enjoy your vacation, where are you going? I am so glad that you are doing better.

    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Comment


    • #3
      I'm so glad for you. I know these past months have been a real trial.


      Warm hugs,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      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: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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.
      [3MG]

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

      Comment


      • #4
        Katie so glad you are feeling fine.
        I also tried the patches and they do work, however my insurance (BCBS) won't pay for them!! So every once in awhile I get samples to last for a few weeks. In the meantime I get do get pain meds and neurontin.
        On a side note I too thought they were suppose to manage your pain, which for the most part this takes care of it, last month I noticed that when I got to refilling my medications that I didn't have enough refills (I usually get the prescription and 2 refills) go to the doctor every 3 months). Anyway the pharm. told the MA that I couldn't have it filled for another few days as it wasn't time (ok fine with that part) but they went on saying that I wasn't filling my prescription as I need to be doing - maybe going a week without doing so, plus they said that I transferred my prescription a few months ago and then went back to this pharmacy. (not true). Now when I go back to the docs later this week, they are going to say something, don't know what I will say except that there are good days when I don't need the pain med so I don't take them. So my question is to you that take pain meds on a regular basis is what do you do? go ahead and fill them whether you need to or not?
        let me know soon. thanks. (sorry Katie for butting in on this with my own question!

        Comment


        • #5
          Katie
          Glad you have finally found some relief!
          Now you will probably be able to enjoy that trip you are planning
          Cindi


          Gelnique for frequency/urgency - works great
          Macrobid after sex
          Prilosec, continuous birth control pills
          synthroid .088mg, mucinex-d, restasis

          Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

          Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

          IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
          AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
          AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
          Great treatment flowchart on page 19 of the pdf

          Comment


          • #6
            happy you found some relief
            Newly IC diagnosed as of February 2011.

            Medications I'm on that seem to work:
            Zoloft- one once a day
            Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

            Failed Meds:
            Elmiron-after 4 months,digestive side effects got to be too much
            tramadol-allergic
            DMSO treatments(5-6)
            probiotics

            THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
            AROMATHERAPY-candles,incense
            Village Naturals Aches and Pains Peppermint Bath Salts
            Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

            ACUPUNCTURE/HERBS
            Significant pain relief so far.

            MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

            Add me on facebook Angela Hasic

            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            Lord, make me an instrument of your peace;
            where there is hatred, let me sow love;
            when there is injury, pardon;
            where there is doubt, faith;
            where there is despair, hope;
            where there is darkness, light;
            and where there is sadness, joy.
            Grant that I may not so much seek
            to be consoled as to console;
            to be understood, as to understand,
            to be loved as to love;
            for it is in giving that we receive,
            it is in pardoning that we are pardoned,
            and it is in dying [to ourselves] that we are born to eternal life.

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