Be Your Own Advocate, Take Your Life Back

For those worried about pain management here is a short version of my story, I had 6 major surgeries, worst was 9 inches ( instead of the one I was suppose to have) of spinal surgery due to adult spina bifida. For a year prior to it I could barely walk and was in severe pain.. Was told it was in my head by two neurologist. Received steroid and cortisone injections from pain management that ended in plastic surgery as the injections deteriorated my muscles and tissue! After my surgeries the Pain management Drs put me on 100 mcgs of Fentynal patch every 2days, gave me so much Vicodin, muscle relaxers, phenergan, fiorecet, ect I could have started my own pharmacy! Kept doing it for 6 months.. Ok after that they refused to see me stating since I can't have the injections they needed the space for those that could. (They get paid a minor surgery fee for injections)..they gave me a refill on everything and that was it! I went to the Drs Office ( it was an internal med clinic but was also followed up by neurologist, surgeons, ect). After losing two years of my life and going through 3 drs in the same place, I was told I was depressed and needed to go on antidepressants! I advised them I was not depressed I was drugged out! I refused the meds and asked many times if there was anything else we could try ( I did do a lot of physical therapy). So.. Now they decide to drop me and tell me I need to go back to the same pain management dr that messed me up! I reached my bottom, I left crying and despondent...but as I was leaving the office a Dr I had not seen asked what was wrong and actually listened when I said I wanted my life back. It took almost two years but I was weaned down to 25 mcgs of fentanyl every 3 days and 2 to 3 Vicodin.. Just when I was almost feeling normal my Dr left and the same routine started..once again I left the office after being told to I needed to go to pain management..walked out crying and another Dr . Stopped me and asked what was wrong.. When I told her she actually hugged me and said I am aware of your case and I just started my acupuncture clinic.. If you want, WE will try and get you feeling better! Some days she did acupuncture, some days she just listened, and some days she was my Internal med Dr! But she saved my life! She left about 6 months ago, but never abandoned me! She let me know I was not a drug addict but needed to be my own advocate. Before she left she arranged an appointment with a neurologist who specializes in pain management and believes in acupuncture, non steroid/cortisone shots, and massage therapy! He is brutally honest and respects the same. I still have to take meds as my nerves are permanently damaged from the spina bifida and the neuropathy can take a toll as well as a few other issues, but I now have a life, I am on 12 mcgs of Fentynal and take norco only when I have breakthrough pain! I am learning to pace myself, but still stay active! The Moral of this is to keep notes, be HONEST with your Drs. And be your own advocate or find someone that will.. But the first thing is don't Tell your Drs you need meds, tell them what is wrong, ask for alternatives, and if you can't communicate with your Dr, then obviously he is not listening, or you are not getting through to him! There are some amazing ones out there, but remember they are not Always going to tell you what you want to hear!

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Hello Blaze! Thanks for sharing your store, I am so glad that you're doing better and got your life back.

One thing I do want to point out though is that Cortisone is also a steroid, so if you're getting shots of that, they are still steroid shots.

Learn more Cortisone details here.

As you can see from that link, it is a corticosteroid.

And I find myself repeatedly explaining to people on here that they aren't obligated to take any medication, just because a doctor prescribes it, nor are they obligated to keep seeing any particular doctor, it is their right to pursue other treatment options or get opinions from other medical professionals.

Does anyone else have similar experiences to share?

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