I have finally had it-I'm giving up - page 3

by ER-RN2

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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... Read More


  1. 0
    ER-RN2, I feel your pain, I was diagnosed with IC about 1.5 years ago after 1.5 years of being misdiagnosed from various doctors. Its so frustrating when nobody understands the extent of the pain, and the detriment to your quality of life. My urologist referred me to someone who specializes in treating IC, and my life has been much better as a result. Have you looked into any providers who specialize in treating IC? PM if you have any questions.
  2. 0
    I have to say, reading these 'pain' threads are a bit discouraging to me, both as a nurse, and as a family member of somoene who is in pain.

    I came into this forum looking for some insight. Sorry if this is a bit of a hijack. My bf had spinal surgery 2.5 weeks ago, after years of back pain. His L5 disk was pretty much gone, they replaced it with a cadaver and fused it. He is up and about, going to his second outpt PT session today. IMO, he is doing very well, but still says he is in pain. He is on oxycontin, and still c/o a tingling next to the incision (when he is standing, walking, or exercising). I asked him about a million questions related to his pain. Then I asked him if anyone has asked him this many questions about his pain... his answer was 'no'. He sis tall the PT about it, and his answer was 'we have to stop PT if there is tingling'. I told him he needs to be more proactive in this, and we need to find out what is causing this, because the answer is not more drugs. I am already not happy that his surgeon gave him a scrpit for 60 pills and said 'see you in September'.

    I used to work in Peds Oncology, where we gave out narcs like it was candy, so that's not my issue. My issue is that he is not being properly assessed and reevaluated. And yes, call me crazy, but I am very afraid of dependence, so I don't believe more drugs are the answer. In school, we teach our students that there are other alternatives, nonpharmacological methods. Should the PT office (who is affiliated with the surgeon) be evaluating his pain? Should there be some kind of pain management team there?
  3. 0
    First let me say, I understand all about chronic pain, and you truely do have my sympathy.
    I have had chronic pain syndrome for about 5 years now. I suffer daily.
    It wakes me from my sleep, so, of coarse my sleep is broken up, my self asteem has really taken a hit, and I keep getting told, learn what your limitations are and work with-in them. OK!
    Knowone can feel your pain. It effects everything I do. I had to quit nursing 4 years ago. I fought hard! Had splints on my hands, bedroom slippers on my feet, and knee braces. All I could do was, eat, shower, work and sleep. I had no time for my child or my husband.
    My conditions can not be "fixed". I take alot of medications, and that is what worries me. If I don't take them I am flat on my back, breaks the pain cycle and I end up having to go for an IM injections to the doc's office. I will tell you to hang in their. Is it that you have to much calcium in your blood? Is it or something your ingesting causing these stones? You probubly can tell through your education and some research just what's up. Do you take IM B12? Have you tried eldeberry extract? Who sent you to a pain clinic? Neuro?
    You hang in their. I believe in pain management. Some nurses don't like to give pain meds or suggest to the pts doc they need something.
    What's your take on that? I know when I get admitted (to often to suit me) it's the same senerio, "Look at the meds she takes". Well, I would gladly give my handicapped sticker, all my meds, and my meager
    SSD to whomever wants it if they would trade that to me for their good health. Many of my problems began when I had radiation to my thyroid and the rest I was lucky enough to inherit.
    I've been thinking about a pain clinic. Could you share your experience with me through private EM?
    Good luck to you. I'll keep you in my prayers!
    Chewchy
  4. 0
    Please don't give up ER RN2!!
    I am soooo sorry that you are having to go through all of this, it is so absurd, I can't even tell you how much I feel for you. Do you have anyone who can help you make calls and write letters? It can be sooo hard to do that stuff alone. There has to be answers for you. Don't give up, keep fighting!

    Do you believe in a higher power? I do believe in the power of prayer.
    Might help?

    icon_hug:
  5. 0
    I know what you are going through. I am an ER nurse and I have had multiple injuries to my back at work(due to understaffing/no help lifting), and car wrecks. So I had severe back pain I lived on 1200mg of ibuprofen every 6 hours with 1500mg tylenol and 880mg of Alieve every6 hours. I am fortunate that I don't have liver and kidney damage, but I am the single parent of a very sick daughter and 13 mo son. The day my son was born a resident anesthesiologist spent 15 min. digging into my SPINAL CORD, before the attending stepped in and got my spinal block in 2 sticks. My c-section incision wasn't bad but my back pain was so severe that I could not sit, stand, or lay down without severe pain. I kept telling the nurses and docs.
    Finally one of the Anesthesiologist came in and flat out told me that there was possibly permenant damage to my spinal cord nerve roots. He said the only treatment was narcotics and with any luck it might go away in 6 mo to a year. They still were not treating my pain, so I kept complaining. So they said they were putting me on Neurontin. I was breast feeding so I asked the Doc. up front is it safe while breast feeding. Without even checking she said "of course". After looking it up, you are never supposed to give Neurontin to a breast feeding Mother. It is one of the few drugs that goes into breast milk in the same strength as the mom. I took 300mg and next breast feeding my son got 300mgs. They put me on Neurontin and my son started loosing weight and his bili levels going up. I refused to allow them to give him formula while under lights, I pumped milk and they gave him that. Then strange things happened to me. I stopped bleeding completely, and started falling asleep without warning. I fell asleep while holding him and the nurse that found us sleeping(with rails up) didn't say much to me but documented out the wazu. It ended up with them accusing me of Munchausen By Proxy disorder. They said that I was deliberately making my son sick to get attention. Long story short. I was escorted out of the hospital by armed security officers and had court the next morning. I was notified at 6pm, so I had to defend myself. Fortunately the Judge didn't completely buy it. They were demanding that my son be placed in foster care for a 60 day eval.!! He ruled that I could take my son home with me if we lived with my Mother until court. I went back to get my son, and his BP was double what a normal babie's BP should have been. He was stroke level! I finally figured out that it was the Neurontin and threw that crap in the trash. He got better , after 3 weeks the Neurontin finally left my system and I could resume breast feeding. The judge ruled in my favor thank God. However, my back pain is keeping me up day and night.
    I go home to my PCP he put me on oxycontin which helped a lot but hen weaned me off to Vicodin 10/650 Q4 hours. Sounds like a lot to most but I have to take it every 4 hours or I can't even pick up my baby. Now he is trying to wean me off that. I can't take it. I also have other pain issues,but the spinal cord damage is the worst. I don't know what I am going to do. I have to work to take care of my kids. Also my daughter is very sick and no one will treat her pain. We are planning a trip now. She is being granted a dream from the Dream Factory b/c she is terminal if she does not have an extreme neurosurgery. She has already had 43 brain surgeries in the last 10 years. She will be 16 this Nov. and her pain has never been treated well. Once she was given dilaudid in the PICU and she thanked the nurse over and over b/c that was the first time her head had not hurt. JACO standards says that we have to treat pts pain. I can't tell you how many heroin addicts I have had to get high in the Er, b/c of JACO regs. But, my daughter and myself can not get pain management. And as far as Elavil goes been there done that. Topamax been there done that. I like another poster here would gladly give up the pills and lack of sleep and pain, and I am sure my daughter would. Anyone that wants it can have it. I don't want Narcs for fun. I don't get high off them. When you really have pain you don't get off on narcs. Nor do you get addicted. I was abruptly taken off narcs at one point and guess what I did not go into DTs. I just had pain bad enough to leave me unable to get out of bed. People who take narcs for fun are the ones who go into withdrawl, not those who really need them. I apologize this has turned into a rant, but there are so many myths about narcs it isn't funny. I am tired of giving narcs to make people happy in the ER, while my back is screaming with pain, and I am throwing up blood from the ulcers caused by the NSAIDs.:angryfire If anyone has any ideas that would help, please let me know b/c let me warn you being the squeeky wheel sometimes gets ou hosed not greased.

    Tired Brave Heart
    Last edit by Medicine Eagle on Aug 14, '07
  6. 0
    Quote from nurse educate
    I have to say, reading these 'pain' threads are a bit discouraging to me, both as a nurse, and as a family member of somoene who is in pain.

    I came into this forum looking for some insight. Sorry if this is a bit of a hijack. My bf had spinal surgery 2.5 weeks ago, after years of back pain. His L5 disk was pretty much gone, they replaced it with a cadaver and fused it. He is up and about, going to his second outpt PT session today. IMO, he is doing very well, but still says he is in pain. He is on oxycontin, and still c/o a tingling next to the incision (when he is standing, walking, or exercising). I asked him about a million questions related to his pain. Then I asked him if anyone has asked him this many questions about his pain... his answer was 'no'. He sis tall the PT about it, and his answer was 'we have to stop PT if there is tingling'. I told him he needs to be more proactive in this, and we need to find out what is causing this, because the answer is not more drugs. I am already not happy that his surgeon gave him a scrpit for 60 pills and said 'see you in September'.

    I used to work in Peds Oncology, where we gave out narcs like it was candy, so that's not my issue. My issue is that he is not being properly assessed and reevaluated. And yes, call me crazy, but I am very afraid of dependence, so I don't believe more drugs are the answer. In school, we teach our students that there are other alternatives, nonpharmacological methods. Should the PT office (who is affiliated with the surgeon) be evaluating his pain? Should there be some kind of pain management team there?
    back surgery is done for instability, if the surgeon said he would be pain free, he (surgeon) was not acting in an ethical manner. drugs may be the only answer for chronic pain..espicially if he has developed "central pain" syndrome.....good luck
  7. 0
    Quote from morte
    back surgery is done for instability, if the surgeon said he would be pain free, he (surgeon) was not acting in an ethical manner. drugs may be the only answer for chronic pain..espicially if he has developed "central pain" syndrome.....good luck

    I cannot say for sure whether the phrase 'pain free' was uttered, but I think there's a huge difference between 'pain free' and being dependent on oxycontin. I have a feeling that, since all this surgeon does is hand out scripts and sends him on his way, that he is not into discussing the plan for long term pain management (If indeed he feels there is a need for long term management). I know that there are many people who show a tremendous improvement after these surgeries. And I was well aware before he went in to this that there are no guarantees (I think he was a bit more gullible though, unfortunately).

    I guess I'll have to research 'central pain syndrome' now, as I have never heard of it. Thanks.
  8. 0
    Just wanted to give you ((hugs)). I have IC and I know exactly how you feel.
  9. 0
    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...
    Can the doc give you samples? I had IC for a couple of years and my life was so difficult, so many hours with pain that wouldn't go away...or lessen enuff to function well. I read all I could on it, went to a support group, drank lots of water, went to a urologist and gyn. Then all of a sudden it was gone.

    Hugs.


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