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  • Nervous

    So I should start off by saying that my pain is better than it was when I was first diagnoised.

    However I still get flare ups and still have pain that tynenol will not handle and taking Motrin is iffy because it can make pain worse. My uro was great about a month ago and called me in some vicoden when I was having a big flare because of my period.

    He doesn't seem to want to give me more than 20-30 vicoden at a time. I used the ones that he called in for me on May 4th and now I'm in another flare and have no more left. I called the nurse and left a message with her. She said that my uro is in surgery all afternoon but she will leave a message on his desk so he will see it first thing tomorrow morning.

    I'm afraid that he won't want to give me more but I'm also afraid to ask to go to a pain managment clinic because I don't have pain all the time where I need to take meds and it seems like from what others have said they want you to be on them all the time. Ugh, I hate having to call and ask for pain meds and being worried that the dr won't give you any because he thinks you are using them too much/going through them too quickly.

    He gave me 30 last time and the rx said that I could take 1-2 pills every 4-6 hours so obviously I didn't take the all the time or I would have used them up in a couple of days.

    Okay, I feel a little better now that I vented,now I'll just have to keep my fingures crossed until tomorrow morning.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

  • #2
    I know how scary it is to ask for pain meds! In fact, I went to my primary doctor for pain meds because my uro wa out of the office and she was awesome. When I said I was having an ic flare, the first thing out of her mouth was, 'man, that can be really painful.'

    Hopefully your uro can give you more meds. If not, it might be a good idea to talk to your primary care doctor.
    mom_in_ma

    Comment


    • #3
      OH ..... Christine I know how you feel, I am the same way some days I do not need any pain meds and then some days I just cant move.. I am like you though I cringe when I am out or start getting nervous when I get low.. My Uro will only give me 20 at a time and thats only if I beg...We should not have to go through this its not not right...
      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


      • #4
        Not all pain mgmt doctors will want you to be on full time meds like oxycontin, mscontin, etc. It's worth a try to call around, make a few appts and see a few doctors, and see who is willing to work with your current needs. Then, heaven forbid, if you should ever need to take meds every day, you've got a doctor who's trained specifically in taking care of those needs for you. I know most uros are funny about rx'ing narcotics. You won't lose anything by checking out a couple pain docs.

        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.

        Comment


        • #5
          WOW!!!! I totally missed that post, President's Award and all. Amy, that really is a great post and you deserved the recognition. *Applause...Applause* Sorry it took me over a year to read it. I think I will take the time and print it. Thanks.
          Sharon

          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

          Where I can be found most days.



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

          Link to the IC Diet:
          http://www.ic-network.com/diet/


          IC 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


          • #6
            Thank you so much everyone. It's nice to know that I'm not alone!

            I didn't even know that post was out there Briza. That is such a great post.

            I haven't been going to my uro for very long but he seems to be pretty understanding. I just hate that he doesn't give me more than 20 or 30 pills at a time. Not only do I run out and then I have to worry about getting more but I have to pay more for them because he's not even giving me a months supply at a time. I almost made them stretch to a month this last time though.

            I even mentioned to the nurse today about him possibly referring me to a pain clinic. I just hate having to call and ask. I guess I'll see what he does for me this time and go from there. I have my next appt scheduled for July so if he calls me in something tomorrow hopefully I can make them last until that appt. Ugh
            Christine



            I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
            1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
            2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
            I have tried every oral medication as well as rescue instills and DMSO.

            I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

            Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
            Also proud mom to the best Bullmastiff on earth, Claus

            Comment


            • #7
              Thank you so much Briza, it's so nice to hear what worked for other people.

              Well I'm on lunch, it's about 12:14pm and I still haven't heard back from the uro's office yet. Yesterday afternoon the nurse left me a message saying my uro was in surgery all afternoon but that she would leave a note on his desk so that he would get it first thing in the morning. I would think they should have called me back by now?!?

              I really don't want to call again and leave another message because I'll start to sound crazy, they always call back but I don't know, ugh!
              Christine



              I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
              1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
              2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
              I have tried every oral medication as well as rescue instills and DMSO.

              I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

              Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
              Also proud mom to the best Bullmastiff on earth, Claus

              Comment


              • #8
                Christine,
                I kept calling back every day until they gave me an answer either way.. I am going tomorrow think I am going to have that talk with him that Amy had posted..You know it cant hurt.. And if he cant help then he needs to send me to someone who can...Its just not fair to us.. We have no reason to lie about this pain.. I am not a drug seeker I hate having to take anything!! This has been so humiliating to me.. And it causes more stress..I truly just do not understand

                Your friend
                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


                • #9
                  I know Ronda, it's not fair

                  We bought a new living room set this past weekend and I'm so excited to get it but I'm sure with the cleaning up from getting it and the cleaning for my parents coming on Saturday I'm going to flare up even more. I did over the weekend.

                  I broke down before my staff meeting and right before 2pm I called again and left another message with the nurse. She never answers the phone I always need to leave a message. It's now 3:20pm and still no response.

                  They better at least call me back and let me know what's going on even if he doesn't want to give me anything. If they won't I can always try my gyn's office, they will at least give me wygisc(I think that's how you spell it) they don't work as well as the vicoden but they at least take the edge off.

                  I hate this stupid crap that we have to go through
                  Christine



                  I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                  1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                  2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                  I have tried every oral medication as well as rescue instills and DMSO.

                  I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                  Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                  Also proud mom to the best Bullmastiff on earth, Claus

                  Comment


                  • #10
                    Christine:

                    Hey I sure hope you were able to get ahold of your Uro today??!!! I'm so sorry to hear about ur flare.

                    I'm sure u have tried it but heating pads help me a lil bit. I would also call around or go threw ur insurance to find a pain doc. They are really very helpful and this is what they practice. I'm sure that you can't be the only one out there that just has some bad flares every now and then u know.

                    Please consider calling a pain doc....it would really be worth your copay to even talk to one just to find out if they can help u know. At least way the stress part of being in a flare and not having anything might go away.

                    Best of luck to you
                    Live your life to YOUR best, and Love to YOUR best!!!



                    DX in 03 with Shingles
                    Removal of Left ovary due to Cyst in 2005,
                    I have had cyst since I started my period as a child age 12
                    Hysterecotmy December 06
                    IC DX March 07 by PST
                    2 "rescue" instills in March 07
                    Cyco May 07 confirmed IC
                    Uro study June 07
                    1st Pain Block July 17,08
                    Hydro/Cysto Nov 11, 2008
                    12-11-08 was told I had alot of inflamation

                    Meds: Allergic to 6 things
                    Premarin......taking the gen cause I get it at Walmart for 4$$
                    Presique for my drepression :woohoo:
                    Abilify for my depression
                    Adderall ...found out I'm ADD...makes sense now
                    Kolopin for anxiety
                    Noroco for my pain
                    Valtrex for my shingles as needed

                    Sorry if my spelling is off on the meds [/FONT]


                    http://community.webshots.com/user/s...host=community

                    Comment


                    • #11
                      Update

                      So I got a message from my uro's nurse finally around 4 I think. She is the normal nurse who does this stuff the one yesterday must have been filling in for her.

                      She said that she had been out all week and was catching up on messages and that my uro was in surgery again and hadn't even seen my message yet. She didn't know if she was going to be able to get a hold of him today and said it might be tomorrow. At least she called me back to let me know what was going on.

                      After I got home she called back and he did call me in some more. It's 20 vicoden which I will stretch as long as I can and then I'm either going to have to make an earlier appt if I'm still have a lot of flares or hold off until my July appt and ask for a refferal to a pain clinic. Guess we'll see how it goes.

                      Thanks for all the advice.
                      Christine



                      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                      I have tried every oral medication as well as rescue instills and DMSO.

                      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                      Also proud mom to the best Bullmastiff on earth, Claus

                      Comment


                      • #12
                        (((((((((((((((((((Christine)))))))))))))))))))))))))))
                        I know you are in pain and wish I knew what to do to help you.
                        'The will of God will never take you where the Grace of God will not protect you.'

                        Comment


                        • #13
                          Oh thanks Cindy, it's okay, I got 20 vicoden, anybody who takes it knows that can go really fast but I'm going to try to stretch them as long as I can. I did take one as soon as I got home though because I did need a break from the pain.
                          Christine



                          I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                          1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                          2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                          I have tried every oral medication as well as rescue instills and DMSO.

                          I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                          Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                          Also proud mom to the best Bullmastiff on earth, Claus

                          Comment


                          • #14
                            Oh Christine, I went through that too! My first Uro basically made me beg and roll over to get pain meds. And his nosey receptionist would tell him I was getting too much! I am so glad I left there! I went to my GP in between finding a new Uro and leaving that one and just let her know what was going on . She gave me 40 pills of Vicadin and 3 refills . She also was the one to start me on Elavil. Have you tried talking to yours? I will admit mine is very up to date, she knew more about IC than I could have dreamed and really helped me out until I found my current Uro. The important thing is that she knows me well, she knew I had no history of drug abuse and gave me the benifit of the doubt. I was too scared to call her at first, thinking she would treat me the same way the Urologist was, but my husband talked me into it and it was good I tried. I too have had to ration out Vicadin and now Valium as well and it is rough. It adds more stress for me because I am then worrying I will run out and worrying gives me more pain!
                            I hope you get some help soon. I was in the same boat as you, being treated with suspicion and like an addict, not getting my calls returned for sevral days and it was unecceptable for me.
                            I am thinking about you and hope you feel better soon!
                            Last edited by RAS6; 05-31-2007, 02:45 PM. Reason: spelling :)
                            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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