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  • I No Feel Good :(

    I'm just going to complain for a second. I'm hurting and it sucks. I'm a Division I tennis player and it is so hard to keep my head up when I'm so early on in my Elmiron treatment and am really struggling. It helps that I just started a new quarter so I have lots going on, but it only goes so far. What kills me is that I have all of these narcotics around because of my Fibromyalgia and they don't even put a dent in the pain!
    **I could have my long list of current medications and diagnoses and the other medications that I've tried, but I'm going to focus on something more: words that inspire and motivate me to keep my head up and keep fighting.**

    "A bird doesn't sing because it has an answer, it sings because it has a song."
    "The honorary duty of a human being is to love."
    "The main thing in one's own private world is to try to laugh as much as you cry."
    "If you find it in your heart to care for somebody else, you will have succeeded. "
    "If you don't like something, change it. If you can't change it, change your attitude. Don't complain. "
    "The most called-upon prerequisite of a friend is an accessible ear. "

    These are all the wise words of my hero: Maya Angelou

  • #2
    Hoping you start feeling better soon, dear!

    Diana
    (\__/)
    (o.O )
    (> < ) This is Bunny. He's on his way to world domination.

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    • #3
      Hi Andrea,

      I can take vicodin and percocet like they are candy and it won't touch the pain. I had to get on long acting pain meds, MS Contin 120mg, to be able to touch this kind of pain.

      I hope you start feeling better soon. Hang in there, no matter how difficult it seems, and I know you will start to see improvement one way or another.

      Take care,
      Moonheart
      http://www.TheCraftyEwe.etsy.com

      Comment


      • #4
        I hope your tomorrow is better.

        Warm healing thoughts,
        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

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        • #5
          I've been on Elmiron now for a year and feel so much better. I started with 100mgs 3xday and am now down to 2xday. Next week I go to 1xday!!! I also take Elavil with it. I have seen such an improvement for the Elmiron and Elavil. Hopefully it will take your pain away too! Feel better.
          Leah

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          • #6
            I am sorry to hear that you are hurting. I know the Elmiron takes a while to work, but I hope that it will kick in for you soon.

            I am sure you are probobly already on it, but just in case, I thought I'd ask, have you tried the IC Diet yet? If not, there is a link for it in the Patient HAndbook here: http://www.ic-network.com/handbook/ There is also all kinds of other information for tips, tricks, hints, meds and therapies that might help you.

            I dont know if you have tried them or not, but I get alot of relief from Rescue instills. If you havent tried them, you might read a little on it and see what you think and then discuss this option with your Dr. Alot of ICers get relief from them right away. They help me so much, I do them every day at home. They contain a numbing agent like Lidocaine or Marcaine that is very soothing to most ICers. It numbs up my bladder right away. Relief can last from several hours to even weeks!

            Also, alot of ICers find TENS units helpful. You could wear these anywhere and can use them in addition to your meds.

            I know you have tried several meds, but just in case you havent tried these, I thought I'd throw them out there: HAve you tried: neuropathic meds such as Neurontin, Keppra or Lyrica? Have you tried antidepressants that help with pain like Elavil or Cymbalta? Have you tried meds like Urelle, URimar-T, Pyridium etc. (I take the URimar-T, since it has an antispasmodic in it, as well as something that turns urine blue and keeps it from burning. It also has an antibacterial to ward off infections.) What about B and O suppositories? (Belladonna and opium) Lots of ICers are helped enormously by those. Have you had a cysto/hydro? Some find they make them worse, but others get releif from them for months at a time. What about mucsle relaxors like Zanaflex, Flexeril, or Skelaxin, etc.? Alot of us take those in addition to (or instead of) other pain meds to help with the bladder spasms. Even meds like Valium or Ativan are used by some ICers, (particularly those with PFD), as they help to relax the pelvic floor muscles.

            Have you tried Cystoproteck? What about any of the alternative things like herbs and supplements? Lots are helped by Marshmellow Root and Various others.

            What about adding Phenegrin or Zofran to extend and boost the powers of your meds?

            I am just throwing stuff out there to make sure that you have tried everything. There is plenty more I havent written here, that might help you get some relief now. I am just tired and cant think of all of them, but there are TONS in the Patient Handbook.

            I am sure you have tried heat and/or ice. But, if you havent recently, try it again. Sometimes it is just the thing that is needed.

            Anyway, I hope you find something that helps you soon and that the Elmiron will start working for you soon too. I know it is a huge adjustment to go from being healthy and carefree to suddenly have this lifestyle thrust upon you. But, you will find the things that work for you.

            I hope you feel better soon!

            Hugs,
            Amy

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            • #7
              Here's the thing... I really don't believe that I have IC. I really don't. I feel like I know my body pretty well and, from what I've read about IC, I can't see it applying to me. I don't have any bladder problems... none. No pain, no frequency, nothing. I'm an athlete, and the only time I'll have to pee multiple times in a short period is if I drink too much water. I am completely convinced that I have Endometriosis. I just saw my GYN last week and he does not think that I have it, when he was originally the one that diagnosed me with it nine months earlier.

              ihurtoo... thank you soooo much for the suggestions. The next time I get hit with another flare, I'll definitely use some of your suggestions. I do use heat regularly when I'm in pain and it provides me with relief (albeit temporary). I've seriously tried most of the things you listed... neurontin, effexor, medrol, relafen, flexeril, vicodin, klonopin (worst experience of my life), tramadol, cymbalta, norco, valium, lodine, lunesta, baclofen, skelaxin, oxycontin, ativan, trazodone, lidoderm, the list goes onnnnnnn. Now that nothing's working anymore, my doctor will be emailing me tonight with a new treatment plan. I'm sure by tomorrow the list will be even longer.
              **I could have my long list of current medications and diagnoses and the other medications that I've tried, but I'm going to focus on something more: words that inspire and motivate me to keep my head up and keep fighting.**

              "A bird doesn't sing because it has an answer, it sings because it has a song."
              "The honorary duty of a human being is to love."
              "The main thing in one's own private world is to try to laugh as much as you cry."
              "If you find it in your heart to care for somebody else, you will have succeeded. "
              "If you don't like something, change it. If you can't change it, change your attitude. Don't complain. "
              "The most called-upon prerequisite of a friend is an accessible ear. "

              These are all the wise words of my hero: Maya Angelou

              Comment


              • #8
                Andrea, have you thought about trying a different gyn? If you have endo, you need a laparoscopy probably; the treatment would be quite different than for IC.

                I sympathize with you, as a fellow (mostly former) athlete. I'm 40 now and my joints can't take too much of it, but I used to compete in trampoline and sprinboard diving. I have been coaching the local dive team for the past few summers, but I don't even know if I'll be up to it this year. I would hate to lose that. But, I know what you mean when you say you know your body very well. Trained athletes really do have a special level of body awareness. Even my twelve year old, who is a JO level swimmer, has this ability. If she says something is wrong, even if we can't see it, she always turns out to be right.

                So, now she has mono. Imagine a 12 year old, who last week could swim 4,000 kilometers in a single practice, and then come home and play DDR for an hour; one day she wakes up and she can hardly get herself down the stairs. It's like someone unplugged her energy source, she's just completely depleted. I don't know why I'm yammering about this to you, probably because I know you'll understand how devastating something like that is.

                So, for you, I strongly advise seeking a second opinion about the endo, and I just want you to know that I'm thinking of you and I understand the particular frustrations that chronic illness brings to a serious athlete. Feel free to PM me if you need to vent about that!
                Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                Wishing you happiness and good health, and all the best out of life.

                Peace, Carolyn
                ___________________________________________________

                Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                On the Beach with IC

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