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  • #1

    They won't give me the pain medication!

    After all I have been through and all of the doctors that I have seen and all of the pain management clinics that I have been to.....I thought I had found ONE compassionate doctor regarding the pain I am dealing with. After explaining extensively with a nurse that did not really understand me AFTER my nerve block doctor already explained to this doctor what to write for me, they still would not do it. I can't take narcotics at all except for Fentanyl. They only have patches and lollipops. The patches don't work well without the breakthrough lollipops. The secretary said he wouldn't write for anything but the patch. I HATE the patch! It will be in my body all day, every day. I did it for 3 years and hated it but it was the only thing that worked for some of my pain issues.

    I have to defer once again to my Primary and he hates doing Narcotics to begin with. He's also on vacation for a week, so I am stuck suffering until the 26th at least.

    Pain Management Clinics won't see me due to the complexity of my situation.

    Unless they can find a medicaton exactly like fentanyl that comes in a pill form. My point is that I don't want the patch to have the drug in my system 24/7. I would like something I can take only when I absolutely have to.

    You'd think they would be more understanding because I am asking for LESS drugs here, not more. I fought tooth and nail to have them understand this but they simply would not.

    I just don't know what to do. I need some pain relief. Narcotics usually do nothing for me so I stay far away from them but this one time, I am willing to take the Fentanyl as it's the only thing that works for "some" of the pain and I am in a LOT of pain.

    In your own experiences, does anyone have any idea of a medication that works like Fentanyl for pain but doesn't have to be worn as a patch? Something I can just take when needed.

    I am allergic to Morphine, Compazine, Demerol, Methadone, Anzamet, Bacterim
    (which is why this is so hard)


    The doctor is supposed to call me back and I don't want to sound difficult when talking to him. I just want to get across this issue. Fentanyl with the breakthrough lollipops or something equivalent.
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.
    Tags: None
    • #2
      Kara, have you ever tried OxyContin?
      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
          Ronda

          Ronda,

          No I have not tried that.

          Kara
          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

          I also have some journals of my journeys, past and some present at:
          http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

            Comment

            • #4
              Kara,

              I am so sorry that they are not being helpful there. Maybe the Dr. that made the recommendations can call this Dr. and talk to him about it. I definately think it would help, if he would be willing to do it. Or, maybe he will be willing to R/X it himself, since they won't.

              Whatever happens, I hope that one of your Drs. will come thru for you and find something that will help you feel better.

              Love and hugs,
              Amy

                Comment

                • #5
                  The problem

                  The Doctor that was trying to help me is just my Radiologist. He can't prescribe. He has already called this doctor to explain everything. Apparently the message got lost in translation somewhere and now I have to explain it.

                  I wanted to just go home but Allen says there is three feet of snow there and it's still coming down. 6 foot snow drifts. He wants me to stay put and not come home, which is not like him to say unless it's really, really BAD.I have to stay with my Parents the weekend. The Pelvic Pain appt with this doctor was to be next Thursday so I may as well just stay here. Only problem is, I don't want to see this doctor right now.

                  I've been all over the east coast for pain relief.

                  Kara
                  Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                  "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                  I also have some journals of my journeys, past and some present at:
                  http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                  Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                    Comment

                    • #6
                      I'm so sorry. I have no suggestions (I do fine with standard issue narcotics) but just wanted to offer my sympathy.
                      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

                        • #7
                          I know you understand the lollipops but I found a great page from the American Cancer Society that might help your DOCTOR understand it. They do, however, suggest using the patch with the lollipops. Doubt this will help you but I wanted to see if I could find something.

                          The oxycontin might be worth trying. It's meant to be long acting and taken every day at regular times, but I dont see why you couldnt take it as you needed it.

                          The requested page was not found
                          http://www.cancer.org/docroot/CDG/content/CDG_Fentanyl_citrate.asp


                          Another thought.......why don't you ask for a SMALL dose of the patch, like 25 mcg? That might be enough to get into your system to give you a bit of relief without the added side effects? I know fentanyl comes in IV form, but trying to get that...well, it would be easier pulling teeth.
                          Last edited by SandyRN; 02-16-2007, 08:38 AM.
                          *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

                            • #8
                              Thank You

                              Thank You Sandy!

                              The office has closed for the day so I will be stuck another weekend like this. Oh well. At least I did my part and made the phone call to try.

                              Kara
                              Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                              "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                              I also have some journals of my journeys, past and some present at:
                              http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                              Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                                Comment

                                • #9
                                  So sorry to hear about your problems. I am praying for you

                                  Robin
                                  The happiest people don't neccessarily have the best of everything, they just make the best of everything that comes their way!!



                                  Meds:
                                  IC: Elmiron, Tofranil, Hydroxyzine, Prosed DS, stool softener
                                  UC: Asacol

                                    Comment

                                    • #10
                                      Kara, I try to keep up on pain management issues... there are a couple new things coming out.... one is called Opana, which is a new synthetic drug (oxymorphone). It is supposed to combine the best of oxycodone and morphine without the side effects, and has a potency about 20 times that of morphine.

                                      They are also coming out with a buccal form of fentanyl, if I am not mistaken. It's a pill that you stick in between your teeth and cheek and allow to dissolve, rather than a lollipop.

                                      Most doctors don't know about these, but Opana is definitely on the market now, and the buccal form of fentanyl should be out, if not now, shortly.
                                      ****
                                      Jen

                                      *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.

                                        Comment

                                        • #11
                                          Kara Im so sorry you are having to go threw all this, Im praying for yourself & your mom! I will call you there tomorrow night .let me know when is a good time for you.sending love & Hugs & support .Sandra & family
                                          "Never Give Up."

                                          To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/7769467@N03/

                                          My Photobucket Link:
                                          http://s237.photobucket.com/albums/f...ramack_photos/

                                            Comment

                                            • #12
                                              I will ask about the Opana

                                              Jen,

                                              I will ask about the Opana. Thank you for the info. Unfortunately, this doctor is turning out to not be helpful. I will have to wait until the 26th when my primary doctor returns. He says he wants to be around when he gives me something new due to all of my Allergies. I think that is fair and safe. It just sucks so bad to have to keep waiting. I have one Opana pill at my house. The last pain management clinic had me try 2 of them but I don't recall anything bad happening with it. I would like to ask one of my doctors if I can try it again. It's worth a try! I'm up for trying anything under the care of one of my doctors. I am pretty upset about this pelvic pain specialist not calling me for 3 days. I'd like to know the reason for that so it does not happen again. From now on I am going to tell the "gate keepers" of that office that I need to speak directly to him and that it's something I wish to only discuss with him. They don't need to know. It's personal at this point and too complicated for them to possibly understand.

                                              Sandra,

                                              Feel free to call anytime. I am going home Sunday.

                                              HUGS!

                                              Kara
                                              Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                                              "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                                              I also have some journals of my journeys, past and some present at:
                                              http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                                              Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                                                Comment

                                                • #13
                                                  Oh, Kara, I'm so sorry you are not getting the help you need right now. I hope the doctor will speak with you directly soon, maybe it's only his staff that is being difficult, and not him. I hope you find something soon that will help you.

                                                  Blessings,
                                                  Lori

                                                    Comment

                                                    • #14
                                                      i hear you

                                                      In 1992 when I got IC and was diagnosed a year later no one would give me pain meds. I had been a paralegal for 17 years, had no history of drug abuse and was told by various urologists "You just want drugs" "this disease does not warrant pain meds" even tho it is a horrible diagnosis at least now people can get into pain management groups that will help them, drs that understand chronic pain. I will never get over the humiliation I suffered. I was in horrible chronic pain and treated like s____ on top of it all. No one knows what we go through. Thank God for sites like this (no internet in 1992) that people can correspond with each other and get references to good drs.

                                                        Comment

                                                        • #15
                                                          Kara

                                                          I read the list of drugs you are allergic too. What type of reaction do you have to those drugs?

                                                          I didn't see you list any hydrocodone or oxycodone. Although they are both derived from the same type of opiates. Vicoden,Lortab,lorcet,norco are hydrocodoens. Percocet, Percodan, oxycontin (time released) are from oxycodone.

                                                          Another one is Darvocet, but is the weakest pain relief there is, which probably would not control your pain.

                                                          I just weened myself off of oxycontin and lortabs. Problem I am having is my bladder pain came back with a vengence. I had to go to the bathroom every 15 minutes and the urge never left me. I was forced today to get percocet, I wanted so bad to be done with the narcotics and I made it through the w/ds but my bladder is in a tailspin. I just went through 6 nights of not sleeping at all, and when I mean at all, I mean maybe 1 hour a night and that was with prescription sleep aids, you name it. I took a percocet this morning and my bladder feels great. I just don't understand.


                                                          Do you have trouble sleeping at night? Do you have urgency that is so bad you cannot lay in bed without the constant feeling of having to urinate???

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