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  • #1

    Help

    Im a single mom my son(ADHD,ASPBERGERS AND PDD) think he has to take care of me hes only 4 and has allot to deal with Everyday i live in pain(extreme bladder pain plus ms,fibro,rsd just to name a few)and im sick of it what to do other than take pills then you take them and your body becomes addicted(ppl in true pain cannot become high..although sometimes i wish i could to take me out of this misery)... insurance wont cover break though meds so i have to take my 8mg diludid every 3 hrs and if i break though i have to take more but am only prescribed 240 pills which at 8 pills around the clock leaves for no extra diluadid is out of your system in 3 hrs which i have been on it for years and was just told today by pain management doctor that of the 64 mg a day my body problem only gets noty not even half of it so then im stuck with....withdrawals a ***** ive watched heroin addicts go through and have nothing compared to what ive faced.after so long your body becomes immune to the drugs and they dont work anyways. so what do you do stop taking the pills and live in severe pain and wonder if you will ever get out of bed and possible have to lose your kid because you cant take care of him. so now they want to put a pain pump in and then have to worry if im going to be paralysis and worst of all the meds morphone is suposably the only thing covered by the fda and im allergic and then the doctor said i have to go to the allergist to see if it is a true allergy i mean come one i already have had numerous surgeries and have l 2 interstims and have failed and no noone will touch me afraid of a law suit. Im sorry if this isnt making since im trying to watch my son at the same time. Im at my wits end and the pain doctor cant prescirbed the med and i have ran out and requested that my primary write a scirpt for an emerganncy break or something and she isnt in the office and no one else can write it due to a narcotic contract???? on top of havin to wait for the allergy appointment i have to go to an impatient detox to saftly detox of the meds when the decied to due to interstim WHY CANT ANYTHING BE SIMPLE.... IC HAS TAKEN OVER MY LIFE AND I DONT KNOW WHAT TO DO ........ ALSO WONDERING IF ANYONE HAS A INTERTHICAL PAIN PUMP.. i need help i have no supports unfortanly i have lost everyone that can help due to the ic
    Cara Age 25
    Single mother of Isaiah my big 4 year old hes been diagnosed with ADHD,OCD,ODD and Aspbergers.
    My dx Severe IC,PFD,VVS,IBS,Fibro,Ms,And RSD for years now although only diagnosed since 06
    Treatments:Trigger Point Injections ,TENS, Bladder Instillations weekly and rescue,Botox Injection, bladder distension,full hysterectomy,pain management and Nerve Blocks every 4 weeks,PT,Biofeedback,Acupuncture,interstim(currently only have left side still functioning with little relief,right side became infected after 2 surgery had to have emergency surgery to remove sill having major issues with site for the last 6 months)
    Medications Tried : Just to name a few i dont think there is anything out there i havent tried ...Enablex,Detrol La,Bitropan, Pyridum lidocaine hydrochloride jelly,soma, morphine, ms contin,all non narcotics and nsaids,currently have strong tolorance to all narcotics (i feel like a drug addict)
    Current Medications: Elmiron (3x daily 100 mg) Hydroxyzine (3x daily 50 mg) daily Valium (2mg 2x daily) Prelief (2 at every meal) Imipramine Hcl (75mg at bedtime) Ativan (1 mg 3x daily as needed) Dualidid 8mg every 3 hours round the clock for pain,Compazine 10mg and Phenergan 25mg along with Ondansetron ODT for nausea and vomiting every 6 hrs,Atropine-Estradiol 0.2%/0.01% twice daily and Instillation of Marcaine and 2 vials of Mucosa Compositum every week, B&O Valium
    GOING CRAZY FEEL LIKE IC IS TAKING OVER
    Tags: None
    • #2
      We used to have some people post regularly who have pain pumps. I hope one of them will respond to your questions.


      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

        • #3
          WOW...Cara I feel for you. What a nightmare. Your story left me speechless really...I mean what the hell can you do? Sounds like you have really fought to get the care you have so far which is amazing in itself. I swear every I.C. person stuggles with this crap. We are all in pain and in my case feel treated as a drug addict every time I have to plead with the doctor to give me something for the pain until I have a successful treatment. I don't understand why it is so hard for them to understand...that if a person is trying other methods of therapy to heal ourselves and they are not working..wouldn't the humane thing to do is ease our suffering in the meantime?!!

          As for being a mother to a challenged child (which I can only imagine not being a mother myself) I would try to get some type of help. Family? Friends? Are you on disability...because if you are there is so much help you can get with that..assisted living, medical coverage, ect. In your state is there any help you can get baby sitter wise for free...day care? I think if you could look into that the stress in your environment would be a lot less.

          Sorry I couldn't be more helpful but I was compelled to respond and at least offer my support. I pray things go better for you.

            Comment

            • #4
              My pain doctor also wants to put in a pain pump. I am also currently taking Exalgo it is extended release Diluadid. I take it every 24 hours. The problem is that it is really interacting with my Lexapro (and we tried others too). I got a severe rash on my back, dizziness, nausea (so bad I was taking Zofran like tic tacs), sensitivity to light and sound. It made me crazy when people just talked. I finally figured out when I stopped the Lexapro that was the problem. My doctor told me to do this cold turkey - oh it was bad withdrawl. I still need an antidepressant. I am going off the Exalgo onto the regular Diluadid. That never touched the pain in the beginning. This is just for withdrawl. I need the Lexapro to cope.

              My pain dr. thinks if I do the pain pump it may help rather than taking Diluadid orally. He hopes it won't interfere with the Lexapro. Lexapro helps my frequency too. But, when I take it with the Diluadid I retain and never feel the urge to go and have to push it out. Even on Diluadid alone I get this. I do think I am also having hot flashes on the Diluadid. My hormones were also changed at this time, but I felt the hot flashes on the regular Diluadid before trying the extended release.

              I have a very good pain management dr. He is trying. He just doesnt' know about IC or what to do for me. I also wish someone would post about pain pumps - I would really like to know if these have helped people. I have had MRSA too and that was one reason the pain dr. was unsure of me getting this pump. I feel this has taken over my life. I feel like I complain here too much, but at home I just sit and try not to complain for my family.
              Teresa

              We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                Comment

                • #5
                  I am so sorry you are going through what you are. I hope you are able to find you way to recovery. I don't really know how to help you still don't have my ic under control yet other than just to let you know there are many here who care about those going through the pain of having ic and sharing what has helped them. i hope soon i find what will help me and I hope you do too. Have a good day! shelley

                    Comment

                    • #6
                      Thanks, Shelley, I hope you find something to help you soon.
                      Teresa

                      We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

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