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  • What a day!

    I posted this under the pain management thread, but haven't had any responses yet and thought some of you here might have experience with this drug(yet another muscle relaxer) or may at least understand what this horrible day was like! Thanks for reading!

    I will get to my point soon I promise, but I need so badly to vent to people who understand! My hubby hasn't really gotten how awful this day was and how upset I am that he didn't want to drive me.
    Oh what a painful day this has been. I had a regular Doctor's appointment and as soon as I hit the road the pain hit too. I have an hour and a half drive thre and I had to stop 4 times to urinate. Then, I was 5 minutes late to my appointment b/c I had to park on the 7th level of the parking garage! UGH! I was limping by the time I got to his office (which sometimes happens, I don't know why with pelvic pain, but it does)
    Well, my Doctor was late and his patients were backed up. So I sat in the waiting room for an hour and a half and the pain was horrible. I had to get up 6 times to use the rest room and couldn't stop crying, even in front of dozens of strangers. It was humiliating. I am a very private person and I tried so hard to control myself but it was just too painful. Finally they found me a room to be alone. The only good thing about this visit was that my Doctor got to see how bad I can get. Usually I am put together and laughing. I told him I actually get worse than that about one day a month or so. I just felt so embarrassed that I lost my composure, but so much got to me today.
    We decided to continue the Valium (and everyone knows now that there are NO refills allowed, so I just have to call a week ahead of time and they will mail my prescription to me to avoid mix ups like last week) We are nixing the Nortriptyline b.c of the ringing in my ears and heart palpitations I was getting. I am going to start Amitriptyline again, but only 10 mgs so I am not eating everything in the house and drugged up the next day. Hopefully I won't gain back those 10 lbs I lost!
    On top of that he added Ophenidrine Citrate (which I have found is generic for Flexon, or Norflex) I had never heard of it and he wants me to take one a day (it's controlled release) He thinks it will help with my pelvic pain and back pain. He says it may help with my frequency too. He heard how I used the bathroom non-stop since I got to the office!

    So back to my point: any one tried this? This was not a drug I am familiar with. I thought we would try Neurontin like he brought up back in February, but he seems to keep thinking of other things to try instead. I have major issues with being very sensative to side affects of drugs, particularlly the sedating ones, so maybe that's why. I am going to try it for 6 weeks and go see him again. He brought up interstim again, but I told him I don't feel ready to try that yet and he understood. I would like to see if my Frequency/Urgency issues will get better once we get my PFD under controll before considering surgery. I told him I would constact the medtronic people for a DVD. He is straighforward with letting me know it is NOT for pain (thank God for his honesty!)

    Sorry this was such a novel. It was just one of the worse days I have had all around since my diagnosis. The Doctor really had to hear how frustrated I am. It has been almost a year now since this non stop pain started and I am so worn out. I see a therapist, but only once a month, so I am looking for some good self help books. I think I am going to start with the book here about not looking sick. That is such an issue. I go into that world everyday looking like a "healthy" 25 year old, yet my 78 year old Grandmother is in better health than me, takes less medications, and gets around better too! My support seems to be wavering too. My husband loves me, but brings up things to hurt me concerning my illness when he is angry. His well meaning mother thinks that bladder issues are all caused by basically being anxious and Pi**ed off (she reads too many weird books) My older sister wants me to self medicate and see a pshychic healer! NO WAY! I will not do illegal drugs under any circumstances and I am not paying money for weird stuff right now.
    I just need a listening ear and a hug and I get all that garbage instead! I know they mean well, they just want to fix things and what I need is just a "we love you and are sorry this is happening", not any more "solutions". This disease has no quick fix, I am finding that out!
    Thanks for reading and I hope to hear from anyone who has tried this drug, with good or bad results.

    Thanks for reading this here too!
    __________________
    Rachel
    DX's:
    IC; PFD; possible Fibromyalgia; IBS;

    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

    I've Tried:
    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
    Currently using:
    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!


  • #2

    Rachel,
    I have never heard of that drug but maybe someone else here has..
    I am sorry you had such a rough day.. I have been having that pelvic pain to but my GYN said it was my sciatic nerve causing this.. It gets to the point I cant even walk sometimes.. Well I hope you find out about that drug..Like I said I have never heard of it..Sorry

    Ronda
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment


    • #3
      Thanks Rhonda, I just needed to hear I wasn't alone! Breaking down ni front of strangers was realy scarey! You know I have been having a tough week too.
      I am doing some research on it, I haven't heard of it's use for IC, but it sounds like it works for back pain, which I have, and even headaches, and parkinson's. Now we'll see if the insurance will cover it! That's always fun!
      Talk to you soon!
      Rachel
      DX's:
      IC; PFD; possible Fibromyalgia; IBS;

      Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

      I've Tried:
      three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
      Currently using:
      Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
      Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
      I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

      Comment


      • #4


        I'm so sorry, Rachel. I do understand how hard it is. I wish you would not be so upset about breaking down in the doctor's office. We cope with constant pain, that frequency that is just torture, and still have to engage with life, raise our families, etc. It's just too much to expect that we can do all that, and still keep smiling all the time. It is good to try to be happy, but you just can't do it all the time. It's okay. Most of us have been there too. Sometime I'll tell you about a couple of my more spectacular breakdowns.

        It seems like it's a good thing this happened, anyway, because you got your doctor to listen to you.

        You are carrying such a heavy load, worrying about your sister, your daughter, being a good wife, having IC, working... I think you need to give yourself permission to lose it once in a while.

        I really hope you start to feel better. I'm thinking of you.
        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

        Comment


        • #5
          Rachel, I have a hubby that understands at his convience. I swear they have no clue. I am sorry that you had a rough painful day. I hope you feel better soon.
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #6
            Hi Rachel,

            Hope you know most of us know how you feel!

            I consider myself an extremely tough person and recently broke down in a doctor's office, too - to tell you the truth, I felt silly. On my next visit, so many of the office staff commented on how usual it is to reach your doc's office and have a melt down - especially if a HORRIBLE time precipitated it! IT HAPPENS!

            Feel better and have a nice weekend...Beth
            IC diagnosis 1999
            Meds: Elmiron
            hydroxyzine hcl
            DMSO as needed
            valium as needed
            librax 3x day

            TENS therapy



            Thanks to all on the boards - YOU have helped more than I can say!



            A person's true wealth is the good he or she does in the world.

            Comment


            • #7
              Don't feel so bad about crying in the waiting room. I did that a couple of years ago. Ended up crying going in. They had me wait in a room by myself too so I wasn't out in the waiting room crying. I was really crying when I was in the emergerncy room waiting but that was because I was tired of having to go through all the family problems with the IC. I have cried many times at my Uro's. At least by having that happen he knows just how bad off you were feeling. Sorry you didn't have anyone to drive you. WOuld have made it a little bit easier I think but I go by myself as well. Had a 3 hour drive one way to a doc twice. I didn't stop to pee at all because I didn't dare to at the rest stops on the highway and no stores or restaurants either.
              Last edited by waterflow; 06-01-2007, 11:20 AM. Reason: typo

              Comment


              • #8
                It's nice to know I wasn't the only one (not that I would wish that on anyone)! I had a day I left the Urologist's crying before, but that was my last Doctor who had just done another cystoscopy, and basically told me because my bladder looked good, he thought I was misdiagnosed. Then they didn't give me another appointment until 6 months later to come back to see him. I broke down and just got the he** out of there and cried in the car all the way home. That was back before Christmas and that was when I decided to see an IC specialist. Right after that I found out that he left the pracitice, so I really had no regrets. He was a good Urologist, but basically knew nothing about IC. I found out later only 10% of IC patients have bladders with obvious damage. I had bleeding during the hydro and my new Doc said I definately have IC and it is moderate to severe b/c of my symptoms and lack of response to several treatments now.

                This was different though, I was surrounded by people and couldn't leave and finally hid out in the bathroom where a very sweet nurse there found me and put me in a room. He was so sweet and I was so embarrased to be crying, but again, everyone there was compassionate and let me know that it wasn't my fault. They asked on the way out if I felt better, had me sit down for awhile untill my meds kicked in and called me later that night to make sure I got home OK. Again, I feel very happy with all the staff there, they go above and beyond.
                And I am a little better today. I just got back from work, but luckily we had a nice, uneventful night. Things have been very stressful there, and the driving all over four counties is getting to me too!
                I can't pick up my new meds until next week b/c of the co-pay, hopefully it will help so I can take less Valium. It is a muscle relaxer that is time released so I only need one a day and it isn't a controlled substance so it will be easier to get. I have Valium if I need it, I just needed something less sedative for everyday use. I almost fell asleep at the wheel twice last week and that was very scary!!
                Sometimes it just feels like there is no way to be pain free, or at least have functional pain without being a zombie!
                Sorry for complaining. Like I said, I am ordering some books b/c I really want to get past the frustrated stage I am in right now and try to go back to living my life and being happy, even with IC and unfortunately with pain as well.
                Thanks again everyone! I appreciate you all so much! It is so good to have a safe place to go where no one thinks I am lazy, or this is all "in my head". I don't know what I would have done without the ICN these past 10 months!
                Rachel
                DX's:
                IC; PFD; possible Fibromyalgia; IBS;

                Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                I've Tried:
                three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                Currently using:
                Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                Comment

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