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  1. #1
    ICN Member DaniMSC's Avatar
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    how do people get pain meds besides tramadol???

    I have tried many kinds of TCA's, SSNRI's, OAB meds, NSAID's etc and just about every other procedure, supplement and medication for IC and pelvic pain. Despite two years of suffering and constant new attempts at treatment (and thousands of dollars), none of my doctors have prescribed me anything but tramadol or valium to deal with the pain I'm in, and I don't take more than 2.5 mgs of valium a night, and I rarely take the tramadol because it doesn't do much and I don't like the side effects. I see on the forums all the time people on xanax and other anti-anxiety meds, percocet, fentanyl, soma, butrans patches, ADHD meds etc. It's not that I WANT to be on these more heavy-duty drugs, its that I've literally run out of all other options now, two years later, and I need to have hope that there is something that will help me still. If I don't keep trying things what do I have left?

    What do you say to your doctors to be allowed to try these meds? I've been pushed into getting the interstim trial, I've had hydrodistentions with capsaicin instills, I have done self-instills; all excruciatingly painful procedures that should prove to any doctor there is nothing I won't go through for a chance for relief from IC-and that I"m definitely not doing this for drugs! And yet none of my doctors will provide me with tools to actually cope with daily pain and symptoms after their ideas don't work. I don't understand what I must do or say to be prescribed legit pain meds- I've got my mom and step-dad advocating for me, I've had Rx's to vicodin and tramadol etc for two years that I haven't used up- I clearly don't have an addiction problem. I can't tolerate very much of those meds due to side effects (sicca/sjogrens).

    Who do I go to for a chance to try some medications that might actually help me?? The two pain management clinics I've worked with and the urologist i see won't "go there." When I finally brought up some of the meds I wanted to try, they all looked at me suspiciously and said "no". They've just pushed me into painful and traumatizing medical procedures. It's kind of sick actually, when I think about it. Any advice?
    IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
    Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
    Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

    Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
    Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
    Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
    Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

  2. #2
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    We sound very similar as far as IC, I too have been thru just about every treatement out there possible. I also did an interstim trial, which did nothing for my bladder and gave me horrendous menstrual cramps. My first uro gave me a few scripts for narcotics in the beginning, but said she does not keep anyone on them. She referred me to a pain clinic, when I got there I learned it was an alterantaive clinic that does not use meds (sorry I can get in a yoga position when my bladder is on fire.) My new urologist wants to do the stage one of the interstim, and I dont. Its a big chunk out of my wallet and time off of work- which I am already on thin ice at work. I thank God for my pain clinic, they give my oxycodone 10mg's 3x a day. I dont always take that much, but I really need too. I am also afraid of getting addicted- and being an ER nurse for 12 years I am so familiar with going down that road. But what do you do? Live in pain and just wait to die- why should we not be entittled to pain relief. Trust me, you will see people in the pain clinics that are not in half the pain we are. So if they can get help, then so should we. I am so sick of the stigma doctors have about pain treatment, and the worse doctors that dont think IC hurts. IC'ers are all different, what helps one may not touch another. Some have urgerncy, frequency- some like me- primarily pain. I dont know how CA is with pain clinics, but you need to go to one. And if they dont help you, go to another.
    I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day and UTA. My diet is so strict that I now have multiple vitamin deficiencies and my bladder will not tolerate any vitamin replacements. I have also tried numerous alternative therapies. I take Desert Harvest Aloe, don't know if it helps, but am afraid to stop taking it. I would do a cystectomy, but my insurance will not approve it. Currently taking Zrytec, Synthroid, Percocet, flexeril, Valium, melatonin, calcium-vit D-magnesium. Desert Harvest aloe. Evening primrose oil, krill oil.

  3. #3
    ICN Member DaniMSC's Avatar
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    Yes we do sound very similar. Thank you for responding to me. I have only ever been prescribed tramadol for IC which doesn't help me at all. The dry mouth is so bad for me because I have sicca. I was given percocet after sinus surgery in the summer and found that it did not make me sick and depresse like vicodin. I was very grateful to my sinus doc for that. I know this sounds "bad" but that percocet really went a long way in helping my quality of life. I rationed it for months- I took a quarter of one pill to get my through my friends weddings, and to get me through a bridal shower and bachelorette party I had to host (with a lot of help from family and friends thankfully!). The hard part for me was just BEING there, when I really felt that I needed to be home, resting. So having seen that a tiny amount of a pain med actually makes a little bit of normal living possible for me, after two years of literally trying everything for this IC, I also feel like I deserve this chance. I deserve this option after going to hell and back in all my attempts to improve my IC and not finding anything that helps me. But I was told by a former-addict friend that asking for percocet is a huge red flag for doctors so I've been afraid to say a peep about it. I have been in two pain clinics, and like I said, I don't even understand how to GET them to prescribe pain meds since both of mine have acted like there is nothing more they can do for me after cymbalta and the interstim trial respectively...
    IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
    Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
    Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

    Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
    Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
    Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
    Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

  4. #4
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    You are in a state with legal medical marijuana. Have you thought of pursuing that avenue? It really does help. If your doc won't prescribe, there are many others who will. Maybe just ask him casually what he thinks of it without looking like you're trying to get it. The best way to approach the pain meds is not to mention or suggest things by name, just insist that what you are taking is not working and let the doc take over from there. It's not good to bring up specific meds to a doc, it's gotta be "their" idea so they will look like the hero. Good luck! Jill, wife of Bob

  5. #5
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    Please dont ever think that it sounds bad that percocet helps to improve your quality of life. I was to the point of suicide if it wasnt for getting to a pain doctor and starting meds. So I can say it didnt just improve my quality of life, it saved my life. Unfortunately, I fight not taking the meds when I need them for fears of addiction. But Bob does have a good point, you are in a marijuana legal state (maybe not as legal as Colorado.) I would love to try it, just once to see if it does help. I am a nurse, so I could not go down that route due to drug testing at work (and I get drug tested at the pain clinic regularly.) Good luck and let me know if anything works out for you. You can always private message me
    I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day and UTA. My diet is so strict that I now have multiple vitamin deficiencies and my bladder will not tolerate any vitamin replacements. I have also tried numerous alternative therapies. I take Desert Harvest Aloe, don't know if it helps, but am afraid to stop taking it. I would do a cystectomy, but my insurance will not approve it. Currently taking Zrytec, Synthroid, Percocet, flexeril, Valium, melatonin, calcium-vit D-magnesium. Desert Harvest aloe. Evening primrose oil, krill oil.

  6. #6
    ICN Member DaniMSC's Avatar
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    I have tried medical marijuana multiple times. I live in one of the most famous cities for pot smoking in the country, LOL, and there are tons of pot clubs here, all very friendly and helpful. Unfortunately it actually makes my pain worse. I had such high hopes for it after doing research, but it puts me in a state where all the pain in my body is magnified and I can't think about anything else. I curl up into a ball and just wait for the "high" to be over. Using medical marijuana seems to incapacitate the mental powers I use to distract myself from pain. I even researched the right strains for me (i.e. more indica, less sativa, high cbd and low thc). I tried edibles- cookies, honey, tincture as well as smoking it. Always had the same effect and no pain or frequency relief whatsoever. :-/ I polled my immediate family and we all tend to have bad reactions to MJ unless it's just a tiny amount, so it must be in our genes. Also it greatly worsens my Sicca/sjogrens dry-mouth symptoms. :-( THanks for the other tips Jill and Sorrel! I also don't *want* to become dependent on strong painmeds!! But I want something to fall back on for all these life and career events I have been missing the last two years as a result of being too flared up or exhausted.
    IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
    Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
    Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

    Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
    Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
    Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
    Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

  7. #7
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    It's very hard feeling like your doctor isn't completely on-board with your pain management. Every time I have to renew my prescriptions for Ambien and Vicodin I feel angry and depressed that I'm dependent on someone else for these medications I can't make it through the night without! I go to a pain clinic, but they don't deal with opiates. It's my PCP who prescribes and tracks those. She does do it and is nice about it in person, I just have to make sure to come in regularly so she can confirm I haven't turned into a drug-seeking addict. I find the problem with the opiates is that they cause so many other problems--depression, constipation. So sadly the search doesn't seem to end with them. You've got to keep trying to find other things that help. I only use them at night because I can't function during the day on them. I used a TENS unit for ages without it doing anything. A new PT told me that if it's working you will feel an *immediate* reduction in pain and we experimented until we found good probe placement. If I'm in a lot of pain I do a lidocaine instillation and put on my TENS unit. Sometimes I have to wear it for hours, or all night.

  8. #8
    ICN Member DaniMSC's Avatar
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    Well, I found the answer to my own question- it's called a Psychiatrist! That is someone who isn't "afraid" of prescribing pain medication to chronic pain patients. I've seen mine once so far and the first thing she did was look at my (six-page-long!) treatment and procedures-tried list, and she saw that percocet was one of the only drugs that has helped me, so she said, "do you need some." I was like, "oh my God, finally someone who is trying to help me with the PAIN!" So that answers that question. I look forward to continuing work with her since I've tried every procedure for IC besides a bladder-removal, and all that's left for me appears to be to keep messing with meds, and since most of them tend to be off-label psych meds it makes sense to work with a psychiatrist on them. Just an example of how important it can be to work with a psychiatrist instead of pain docs- both my pain docs told me to take cymbalta once in the morning and once at night. When I told them that I found cymbalta too agitating and disruptive of my sleep, they did not suggest the blindingly obvious answer of taking both doses at once in the morning!!! I thought of this myself and confirmed with my psychiatrist...

    questions for PDXmom- first thank you for your response- I use an IF unit (like a TENS, supposedly better but I have both and don't notice a difference) and I find it reduces pain in the moment, but has no long term benefit. But its still nice to have something to grab and use when I'm home and able to lay down and rest. You mention "probe placement" though, and I haven't heard of that. Do you have something that goes inside you? I've never heard of that, and would be very interested in your experience. I've just used four electrodes. Second, about the lidocaine instill- this is a home instill you do yourself? I've had instills and was trained to do them myself. Always a horrific experience for me, and the urethral burning and spasms that turned in to irritation for the following days completely eclipsed any benefit I felt in my bladder. How did you get around the urethral discomfort from the instillations if you had any? Thanks!!
    IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
    Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
    Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

    Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
    Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
    Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
    Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

  9. #9
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    I'm so glad someone is helping you! As for your questions: I originally was told to place my TENS electrodes around my c-section scar and over my bladder. That didn't do anything for me. Another PT was interested that acupuncture helped me (but only for a matter of days). She gave me different placement points for the TENS electrodes and for my low-frequency unit. The points are on my back and legs to target specific nerves. These work great. At first I alternated between the units all day. The idea was to interrupt the pain signals and stop the vicious feedback loop of chronic pain. Question 2: I do use home instills daily. I use a pediatric low fric catheter and lidocaine jelly to minimize irritation to the urethra. It took a while to figure this out--the urethra pain from the catheter overshadowed the helpfulness of the instills until I did. Good luck!

  10. #10
    ICN Member DaniMSC's Avatar
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    Thanks for your quick reply! That's really interesting about the acupuncture points. How did your PT know about them, or did you tell her? I'd be interested in trying that but not sure where I'd start. I just do an X shape- two on either side of my bladder and two on my inner thighs or lower back. One more question about instills- how often do you do them and how long is the benefit? Thanks so much.
    IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
    Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
    Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

    Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
    Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
    Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
    Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

  11. #11
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    I told her that acupuncture had helped and she quizzed me about where my acupuncturist placed the needles. This PT was the first to guess I had damage to my genitofemoral nerve (which was later confirmed by the pain doctor through nerve blocks). The bladder pain goes through related nerves so it all adds up. If I'm in a lot of bladder-only pain, I'll do a straight lidocaine instillation anytime. I use topical lidocaine, which was tremendously more soothing for me than injectable lidocaine. (So many variables!) My daily instillation is 10 cc lidocaine with 4 Elmiron pills mixed in. The Elmiron makes a big difference for me when I take it this way; I can feel less overall pain and sensitivity after about a week of daily treatment. Still, I adhere to a very, very limited diet even with all that. (Only a tiny subset of foods from the "safe" list.) But, it does work so that motivates me to keep restricting my food. I hope over the long term with more treatment I'll be able to eat better again.

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