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How did starting narcotic pain medicine change your quality of life?

2

Comments

  • itsautonomicitsautonomic LouisianaPosts: 2,561

    @dilauro , that is quite a difference and one I wonder what contributed to the free prescription pad, I would think there was abuse back then also, but maybe more is known now.  You know that is probably the one thing I can say about the treatments and meds I am on now after getting diagnosis and getting to team I am with now, I feel human, nothing is gone or significantly better, but I feel human again. Honestly I started crying to read those words because it triggered something and I flashed back to a time I felt like an animal, a human from the outside but an animal in terms that I don't even recognize who I was back then or at the time.  I always talk about my thinking felt so primitive during the worst times, its hard to even consider I functioned in society at that time.  Thank you for that description, for me it is a brutal, yet crystal clear analogy.  That one hit me hard

    @memerainbolt , same here seeing the psych changed my life.  I am a big proponnent of that in this journey.


    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  •  Great topic Itsautonomic..well, I was prescribed ER meds like Fentanyl patches, Oxycontin, and Methadone before being given the option of getting a pain pump. I had gotten worse despite a microdiscectomy and TLIF, so I decided go with the pump.. Opioids kept me from being bedridden and allowed for some quality of life. Due to new problems cropping up last year, I now have an scs and still take my breakthrough med for chronic pain.  
    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
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  • itsautonomicitsautonomic LouisianaPosts: 2,561

    @Meydey, would you have ever considered the SCS without trying pain meds first?  My PM is recommending SCS, but isn't pressuring me to get it and will be cool with pain meds first.  I always want conservative first 

    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Max_LeeMax_Lee New York, United StatesPosts: 389

    I went from going days without sleep and only being able to collapse from shear exhaustion for a few hours before waking up again to being able to at least get a few hours of sleep most nights; the pain kept me up and unable to even doze for days on end. I spend a little bit more time sitting upright and doing things like sitting at a desk typing for a couple hours and able to keep food down - the pain was making me too sick to even eat and I dropped a TON of weight (that I didn't have in the first place). There are fewer periods of complete mind-numbing agony and while it's not been under a 7 for a long time, it's not an 8+ most of the time.

    Kieran 
     "The loneliest people are the kindest. The saddest people smile the
    brightest. The most damaged people are the wisest. All because they do
    not wish to see anyone else suffer the way they do.''-Anonymous


    My Story: https://www.spine-health.com/forum/discussion/90688/pain/neck-pain-cervical/help#latest


  • nutcase007nnutcase007 United StatesPosts: 918

    Opioids have been a two edged sword for me most of the last 20 years. On the plus side, it allowed me to continue to work as an IT professional until 30 months ago, but on the negative side, I think it delayed the inevitable cervical surgeries and because of those delays likely left me with permanent cervical spinal cord damage. 

    I strongly recommend, if you so use any opioid, please do not use any that include any ibuprofen or acetaminophen.  Both are know to often cause damage/stresses on other body systems.  From my experience neither helped with my spinal cord injury. 

    Also, if you use any, try to get dosage level as low as possible to get that little quality of life improvement.  If you take enough to "get rid of the pain", you will likely be none functional. 

    Lastly, in my part of the U.S., almost all of the doctors that I've worked with or tried to work with on my spinal cord injury refuse to take me seriously while I'm still on an opioid.  With the use of some items from The Blend posted by @dilauro, some of my own self discovered homeopathic treatments and getting off a drug that was causing muscle spasms, I'm in the process of tapering down my dosage.  I don't know if I'll be able to totally get off my opioid without losing all quality of life, but I'm going to try.  I hate to bring it up, but this current negative attitude against long term use for pain management is totally nuts.  Those of use in severe chronic pain often need them for some quality of life. 

    I wish you well in your decision.

    -Nutcase           

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  • For me, starting and continuing pain meds has given me back a somewhat normal life.  Without them, I would be in terrible pain most of tne time.

  • MikethepikeMMikethepike MIchiganPosts: 673

    Aaron,

    Nothing is getting better. In my whole life. I have seemed

    To conquer the important things.

    This has been terrible for 3 1/2 years.

    It gets worse everyday

    I pray that it will change, 

    Take care and.  God. Bless. 

  • AkiraAAkira Redlands, CAPosts: 82

    My nerve pain(back/ribs) was screaming at me most of the night!  Now back to taking the Fentora Oral to keep me sane!

    Akira/Chuck
  • Hi,

    I have been on vicodin for the past eight years due to degeneration and bulging discs in L4-L5-S1. Without the meds, i am unable to lay down for more than a couple of hours at the most, which irritates my back more, and I am unable to sleep for more than 4 hours (max). My life became unbearable, and when my baby got diagnosed with autism, and he kept flopping on the floor, I had finally had enough. I had to go to admin of the clinic and complain about my suffering but finally they treated me. I had to try a pile of things first, physical therapy, useless shots in my spine, the "joke" drugs -- gabapentin and amitryptaline. Piles of stuff that wasnt even slightly useful and messed up my body worse in other ways (in my opinion). But overall, opioid pain meds gave me back my life and pulled me off the ledge (so to speak). With the meds I was able get my son through four years of therapies.

    Since starting my meds, I now have developed pain in both my feet...but they refuse to change my regime at all. They think its fibromyalgia, and they almost killed me with that horrifying drug cymbalta (I had a horrible reaction to the drug from a single dose. Lost control of my eyes, sweating and shaking.) I also tried the alpha stim which left me with continuous ear ringing.

    Of course I am aware that I am becoming kind of immune to the drug after the same level for so long...even though it worked great for five years. So I am back to suffering again, and now with the faulty studies that have been released (theyre blaming doctor prescribed pain meds for young people dying from tainted heroin and the number of deliberate suicides by opioids were not accounted) the stigma of being an opioid treated patient is horrifying. I cannot begin to express the indignities that I have experienced as a result of my treatment. The birth of my second child was while on hydrocodone, and I was refused an epidural and told my meds were "too high" and that I shoukd have had surgery years ago (i am considered a bad candidate for surgery because L5-S1 only has about a 5% success rate after 5 years, so my doc refused to recommend it.) i was treated in an abusive manner throughout the birth, and my pain level was so high I was sweating profusely, whipping my head around and nearly passing out. No lie. I called for anyone to help me, god, jesus, my dead mother...then I decided I wanted to die, so I was just going to push my son out early and bleed to death. I was grieving for my baby, but I couldnt endure the back labor plus what was going on with my spine.  I was still screaming and thrashing when the  horrible anaesthesia doc was dragged back in and his eyes opened wide when he saw me thrashing like that. He treated  me like a dog again after suggesting he could maybe do the intrathecal. (i later found out he coukd have done epidural or intrathecal).  I didnt find out why he treated me this way until later. Well, in late pregnancy, I had pneumonia and the associated breathing issues, so I was taking meds to stop coughing, to treat the pneumonia and just to breathe....it was all on my chart from my ER visit. Well I finally birthed my son, then a nurse came in and said something vague about her being unsure if I could keep the baby or not. I was confused at first, then the nurse said something about a positive test for meth!! Yes, they claimed i was on METH!! Yes, really. After all of the mistreatment I went through as a chronic pain patient at 42 years old, they had the guts to accuse me of the most dispicable thing. Disgusting junkie nasty METH...and I neber even smoked a cigarette. NOBODY SAID A WORD THROUGH MY WHOLE LABOR, HENCE THE ABUSE!  I was exhausted, wanted my baby and a nap... But instead I was asking for a phone book to call a lawyer and my friends at CPS and social services.  I hadnt even seen my baby since they took him, then THIS UTTER CRAP! I was raging. So angry!! So hurt!! 

    Another nurse came in a little fearfully and said that they needed to retake the test. Well no kidding, dummies. Of course it was clean. But I was still outraged. That test, proven WRONG, still sits in my file. I am still continuing to be mistreated by staff on occasion because opioid pain meds give me a way to live my life...and I received several "pop" urinalyses from my primary afterward too for the next several months. All clean. Obviously. But I am damaged for life. Bearing down too early left me with a cystocele and a rectocele. My sex life is forever messed up because I dont have much sensation anymore. I have lingering fear, hatred and distrust of doctors and hospitals because of the cruelty and degradation I endured. I should have had a retest immediately. None of what happened to me should have happened. I hate the team who did that to me at Essentia Health in Duluth, MN. 

    I am left now to live in constant fear that my pain meds will be cut off.  Obviously, my pain worse than it was in 2009. I still endure snide comments and rolling eyes from all the medical "professionals" who claim I can be cured with physical physical therapy and yoga. Yeah, right....thats BS. I tried it all. Now I have to keep my mouth shut about my abuse so nobody pulls my meds. They dont care about me....they continue to be cold and unsympathetic people that I need to deal with every three months for my refill. They deny that opioid meds saved my life, and tell me that opioids are bad for long term pain... both of those things are wrong. They claim that opioid meds are so BAD (other than toxing my liver with the extra tylenol in my meds, I have zero side effects and in fact it fixed my gallbladder removal side effects that they didnt tell me about either). So yes, i have benefitted from my pain meds physically, but psychologically the process to get help for pain is mortifying.

    There are chronic patients all over the nation with absolutely nobody to help them. Nobody to go to when their right to treatment is violated. There is no ombudsmen or agency to call to complain and investigate. We have no rights, and we sit in the darkness, afraid to speak out or rock the boat. Long term opioid patients could benefit from opioid rotation...its brilliant...but doctors dont know about it. 

    Anyway, opioid meds get a bad rap for no good reason. The lives of drug addicts are no more valuable than the lives of people in chronic pain. 




  • AkiraAAkira Redlands, CAPosts: 82

    I went from Advil to hydrocodone to oxycodone, what's the next stronger medication to get me relief?  I do have fentora oral for severe screaming pain, but it's over $2000.00 for 24 pills and I don't have much left.

    Akira/Chuck
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