I have finally had it-I'm giving up

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    I'm giving up on ever being painful or even close to it. I spent a whole year in and out of the hospital with kidney stones, bladder infections, etc. Finally found someone who would actually listen and give me a diagnosis-interstitial cystitis. I was so relieved...I finally knew what what wrong and now I knew what to do about it. Boy was I wrong. I was spent the past 2 years doing everything I could to stop the pain-and I really mean everything. Never given anything for pain. Finally got thrown to a pain specialist-"because I don't know what to do for you". Spent over 2 months to get in there and finally...someone listened. I got a script for 1 month of topamax. It helped some-it was loading doses. Today I went to pick up my scripts and my insurance won't cover them--and they are not narcs. So I am just giving up. I wish I knew what I did to deserve this. I feel like I have a knife in my right kidney and bladder. All I do is scream and cry when I get home because there isn't anything else to do. I live on tylenol and motrin. I know that long term use of those aren't great but at this point I don't even care. If I had an hour of being pain free I don't even know what I would do.
    OK...I'll stop venting....Thank you for listening...
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  4. 1
    Quote from ER-RN2
    I'm giving up on ever being painful or even close to it. I spent a whole year in and out of the hospital with kidney stones, bladder infections, etc. Finally found someone who would actually listen and give me a diagnosis-interstitial cystitis. I was so relieved...I finally knew what what wrong and now I knew what to do about it. Boy was I wrong. I was spent the past 2 years doing everything I could to stop the pain-and I really mean everything. Never given anything for pain. Finally got thrown to a pain specialist-"because I don't know what to do for you". Spent over 2 months to get in there and finally...someone listened. I got a script for 1 month of topamax. It helped some-it was loading doses. Today I went to pick up my scripts and my insurance won't cover them--and they are not narcs. So I am just giving up. I wish I knew what I did to deserve this. I feel like I have a knife in my right kidney and bladder. All I do is scream and cry when I get home because there isn't anything else to do. I live on tylenol and motrin. I know that long term use of those aren't great but at this point I don't even care. If I had an hour of being pain free I don't even know what I would do.
    OK...I'll stop venting....Thank you for listening...
    Don't give up. There's somebody out there that can help you.

    Just keep looking. As you said, you don't know what you'd do with that painfree (or at least greatly reduced) time till you find the doc/healthcare provider that can get you there.

    ~faith,
    Timothy.
    pajamas2007 likes this.
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    I am so sorry. It sounds like you have been absolutely miserable. It is unexcusable that your doctors have done nothing to bring your pain under control. Can you go to a different doctor? Pain is what the patient says it is, and they are obligated to help. Why have they refused to give you narcotics?

    Lori
  6. 0
    Can you talk to your physician about writing a letter of apeal on your behalf?
    If you apeal this even though the med is non formulary you might be able to get them to cover it. The only other thing I might suggest is check with the doc and see what he feels may help that is on your formulary.
    Good luck.
  7. 0
    I'm sorry you're in so much pain and I hope it gets better for you soon.
  8. 0
    Understand your frustration re pain relief efforts.

    Many anticonvulsants are helpful with neuropathic pain. Topamax is in this class. Manufacturer is Ortho-McNeil Neurologics.

    Safety info found here: http://www.topamax-epilepsy.com/phys...fessionals.jsp includes risk of kidney stones (in cause you were not aware).

    Since this med helped you, many manufacturers offer help paying for meds. Check out:



    This drug is available for assistance---check to see if you qualify.
  9. 0
    gosh, i feel for you. i've lived in severe pain for the last four years. had procedures done, thrown from one doc to the next, kicked out of er's for "faking it", accused of forging scripts cause my surgeon was too dumb to remember what he wrote, etc. been to docs who didn't give a rat's a** that i hurt. when to two different pain specialists, before i found one who would listen....and you know what? he doesn't accept my insurance. so i have to pay cash. finally, i got the meds that have at least made my life bearable, cause, to tell you frankly, with everything going on in my life, i was ready to end it. and i'm 28. i won't say i know what you're feeling, but i sure know how it feels to not be listened to, and to live in PAIN. pain so bad i was unable to function, do basic adl's, work, take care of my two children. i'm slowly turning it around.
    i was on topomax for a month...for migraines. my neuro gave me samples, cause i had the same problem...insurance won't cover. insurance is wonderful, isn't it? i pay 300 dollars every paycheck, have to pay cash to go to half the docs i have to see, then get scripts written and the med isn't on "the list". could you get samples from someone? my pcp and my neuro both had it, and gave me enough for a month. could you try that? or maybe contact the med company for pt assistance programs?
    do you take anything else for the pain that works? i hope you find some relief. if you want to chat about chronic pain, or just want someone to listen who understands pain.....feel free to pm me, i could give you my email address then if you want to chat.
    take care of yourself!:icon_hug:

    duh...guess i should have told you my pain is from three herniated discs in lumbar spine, radiculopathy and now a comp fx of L3. i have osteoporosis and i am too young!
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    Thanks everyone!! I am just so tired of fighting with everyone just to get some relief. It doesn't help that when the doc gives me a med rx (finally) and i have to wait forever to get it cleared by insurance. so basically i'm stop-start-stop-start meds which everyone knows that isn't good. also annoying is seeing those who don't work, lay around, etc get everything for free-no questions asked. but if you actually work and have insurance you get screwed.....
  11. 0
    I am so sorry, but please don't give up. Someone out there CAN help you.
  12. 0
    See about trying amytriptiline 25mg at hs. Its an old one for nueropatic pain, and its cheap.


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