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  • Devastated!!!!

    Went to my pain management appt. today and found out that my doctor is weaning ALL his fibromyalgia patients off of pain medication and is going to manage the fibro with benzodiazapines (xanax, valium, etc)

    I'm completely CRUSHED right now! He's weaning me off the mscontin and norco and I'm supposed to go back to a life of FULL TIME PAIN AND MISERY!

    FInding another pain management clinic around here is IMPOSSIBLE because there are NONE. None that do medicine treatment anyways so I'm basically screwed!!!!!

    I don't know what to do, my attitude is SOOO bad right now.

    Again............WHY won't doctors take this pain seriously???????? WHY do they think its all in our heads??????????? I've already lost 7 lbs from the last cut in meds and now I just might waste away because I won't eat anything and I don't CARE anymore.........I give up!

    I'm so crushed!!!!!!!!!

    Hugs and Wishes for Pain FREE days!!,
    Kara ~reducing plastic waste one bag at a time~

    Facebook: Kara Kaiser
    Twitter: Love4Earth

    Me and my Guccigirl... she helps me through those painful hours!

  • #2

    I completely understand..I dont understand doctors..Mine will not even give me mild pain meds, so I suffer from pain every day..
    I am so sorry you are going through this, but please dont give up, maybe if you go to him and plead your case he might see things differantly...
    Good luck and God Bless You!

    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:

    Diet Reference Sheet:

    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.


    • #3
      Hi Kara.
      Wow, I am sorry about what you are dealing with. I dont get his approach as not everyone can take benzodiazapines. I know my GI doc has me take ativan which is like valuim for when I have severe stomach pain and nausea with my motility disorder. I do not take them all the time though as they say your body can become addicited to them in a short period of time. So like if you take them for more than 3 weeks straight everyday and try to suddenly stop them, you are going to have bad withdrawl issues.
      I mean I just dont get it. If you are doing well with what you are taking, I think he should leave well enough alone, why screw things all up again and have you in pain. I honestly dont understand some of these doctors and their way of thinking. Good Luck Hon, and dont give up, if you have to, keep searching and maybe you will find another doctor, even if you have to travel a little further.


      • #4
        Has your doctor said why he is doing this? If he's worried about addiction then surely he's got it backwards because benzo's are way more addictive than pain meds.
        Wish I could offer more advice, but sending instead.


        • #5
          I am so sorry!!! I will never understand why the wont believe the IC patients. If they could walk one day in our shoes just maybe they would understand
          God grant me the serinity to withstand the days ahead!!!

          My myspace link...


          In Memory of My Father (Lawerence) 1/25/2007

          Interstim Sept 2001
          1st InterStim Removal May 2005
          2nd Interstim Implanted May 2005
          2nd InterStim Removed March 2007
          Hysterectomy 1999
          Tubes Tied 1997
          C-Section 1996

          Me and my kids

          Taylor (my daughter) Me and my daughter My son Cody and Taylor


          • #6
            Hopefully if you will work with your doctor, together you can find the right combination that will help with your pain.

            Sending healing thoughts,
            Stay safe

            Elmiron Eye Disease Information Center -
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            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.

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            Diet list:

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            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.

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


            • #7
              So sorry to hear this. I don't understand why when someone is stable that they would want to mess them up. THis really stinks to hear this.


              • #8
                As sad as it is to say, most of these doctors are not in the business to help people, but rather to make as much money as they can. I would not be suprised if your doctor didn't have some deal going with the pharmacuetical company and is getting a kickback for prescribing these other meds. It just dont make sense that he would stop all his patients from using their meds for no reason. There is always a reason, and I rest assured it is a reason that will benefit your doc. I may be wrong, but it just seems fishy to me.


                • #9
                  Gosh Kara!!! That is so wrong!!! I don't even know what to say. I think maybe you'll have to drive or be driven somewhere far away, or maybe can you go to a primary and get meds?

                  I feel ill for you.


                  • #10
                    I am sooo sorry also. I wish sometimes they could live in our shoes for about a month, without all the foods they like, not doing the activities they like, and see if they feel the same way.


                    • #11
                      That is awful. I am always terrified I'm going to walk into my pain clinic and they are going to say something like this, because, yeah, doctors can get very strange regarding pain. I think it was Donna who asked if he had said WHY... if so, I'm curious....


                      *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.


                      • #12
                        I am so sorry to hear this too. I know that had to be a terrible blow to hear that, especially since you have done so well on your meds. But, please dont lose hope on this. First of all, you are not like all his other Fibro patients, you also have IC. He may no longer think that narcotics are the optimal treatment for fibro, but there are tons of Drs. that agree that thet are entirely appropriate for the treatment of IC pain. I would start with that angle first.

                        To back your arguement, start keeping a pain journal. I know you used to keep one. Hopefully, you can find it and show this Dr. the evidence of how bad off you were prior to narcotic therapy and the vast improvements you have made while on it. If you cant find it, (or if I am mistaken and you didnt ever have one), then go back and print out your old posts here from before you had pain meds and then some from after you were on them and show him those. The difference is dramatic!

                        I would also take your husband with you to the appt, so he can "testify" as to the dramatic difference in your functioning and quality of life since you have been on pain meds.

                        I would also print off several of the articles on pain mgmt, including the ones of Dr. Brookoff's about the rat and his others. Also, the one about how the quality of life of IC patients has been demonstrated to be worse than (or similar to that) of patients with end-stage renal disease.

                        If you are still working, I would explain to him that it is because of your pain meds. If you are on disability, I would explain that it is b/c your DRs and the US govt all agreed that you are in that much pain. You get the idea. Use every tool you have.

                        You are a very eloquent woman and are always very persuasive. I truly think that you can change the mind of your Dr. when you do your "full-court press". But, if you still cant, then it is still no reason to give up. You see all of our signatures and know what meds we are taking. You know that there are heck of a lot of us on heavy duty pain meds. We all get them from Drs, so there ARE DRs out there who believe in our pain and believe in treating us compassionately with pain meds, if that is what it takes. You will find one too. You may have to travel to get to one, like I do, but you WILL find one. I have to travel 5 hours round-trip once a month to mine, and believe me, it is no picnic those days. As a matter of fact, I suffer worse that day and the next, than the whole rest of the month, just b/c of the drive. But, I have to do what I have to do in order to have pain meds the rest of the month. We are all stronger than we realize, and you will do what you have to do too.

                        I pray that your Dr. changes his/her mind. I know if anyone can change it, that you can. Please get your pain diary in order and your info printed off, and then make an appt to sit down and talk to your Dr. soon. Please let us know what happens. I am so upset for you, I will be worried sick until I know that you are okay.


                        P.S. If you need any support, feel free to pm me and I'll give you my number. Also, if you think it would help, I'd be glad to send your Dr. a letter from another patient's point of view who has Fibro and IC to tell him how much the pain meds help me function and that as a Moderator here, I have heard the same from patient after patient. I will also send copies of lecture transcripts with my letter, as well as copies of my medical records so he what I take and how it has impacted my quality of life. I will do anything I can for you. There is no detail in my life that is too private to put in my letter, if you think it will help you. Like I said, just say the word, and I will get right on it!


                        • #13



                          • #14
                            Wow, that's awful! I seriously don't understand those doctors. I've luckily never encountered doctors who did not want to prescribe medication for my pain... on the contrary my doctors have always been way to free with prescribing pain medication....... In what part of the country are you? I seriously just don't get why these doctors are so reluctant to treat pain!
                            current meds:
                            cytotec 200mcg twice daily

                            ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

                            dx: hashimoto's thyroiditis 1998
                            dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
                            dx: endometriosis 2003
                            dx: innapropriate sinus tacchicardia 2005

                            meds tried but failed:
                            elavil (6months)- severe tachycardia
                            elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
                            a bunch of others

                            Me and my best friend's baby (also my Godson!)


                            • #15
                              Wow- I'm so sorry. I can imagine just how you feel. I went through months and months of doctors refusing to help me because they didn't believe that I was really hurting. I guess for now, I would try the OTC and home remedies until you find a doctor that works better for you. Keep coming here for support... Best of luck!
                              **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