Hi James! Happy Holidays to you and yours (if you can
In 1992 I had a bad skiing accident, tore up my knee and my thumb so bad if it weren't for a little bone and my skin it would have been attached at all. The thumb had to have surgery immediately, but the knee had to be immobilized for 8 weeks. Nobody told me that if you immobilize even a healthy joint for 8 weeks, bending and using it again will be painful. Well turns out I am a real champ at producing scar tissue or keyloids with an injury, so my knee didn't want to bend at all. They tried for 5 months through my screaming and crying and then finally had to put me out and then bend it all the way. Then in Sept. 1992 I had Spinal Menegitis, not fun a all.
In 1994 I had a double rear-ending. First car hit hit at about 35 mph, and the second car hit of both at abput 60-65 mph. That really screwed up my neck and shoulders. In Feb. 1997 I had the first of four knee surgeries, I had to be in a leg machine 18 hours a day for 3 months. Needless to say my back and neck did not react well at all. Another knee surgey Jan. 1998, March 1999, and March 2000. In 2001 I was rear-ended again when I was on my way to see a neurologist about my neck.
He sent me to a Pain Management doc, she tried nerve blocks for my upper back (6 of 'em) and my neck (6 of 'em) and then she put me on a fentyl patch and pain meds.
Just wanted to qualify myself as a bonefide "mess" of pain, docs, tests, and fear of drugs.
I don't know how you've found drugs to be; when I had spinal menengitis I was in the hospital and they gave me demerol. When I was first admitted I had such an awful headache I remember telling them, "If you can't make it stop, shoot me!" I was in the hospital for 10 days. The day I was to go home, I got into my clothes and packed my stuff and got a headache again. The doctor said I would likely have headaches when I overdid something. Then the nurse came in and said I was scheduled to have my last demerol shot. I told him I was leaving, he said, "may as well have it, it will help to trip home be easier." So I agreed and he gave it to me. Boy did I feel great! I was really glad I was leaving! So I have come to the conclusion that when we have terrible pain and get medicated it medicates the pain, not us. But as/or if we get better, then the medication medicates our brain. That's what we don't want to happen. Though there is no tried and true way to gauge that part.
Anytime I ever got medication that made me feel like, "whew, get me cigarettes and a glass of wine," I called the doctor and told him I broke out in hives and must have an allergy to something in the meds and could he call my doctor and get a different drug.
Your doctor actually should have been watching your treatment and as your pain decreased brought you meds down just a little. But we can't go back and change something now. When I was taking the oxycodone I only took 1 in the morning and 1 at night, I don't remember the dosage. The darn things kept me awake anyway so I was happy to try and cut out the one a night. I did that for about three weeks, then when I saw the doc I told him what I'd done and he became angry with me. He was suppose to be the one in charge and I wasn't suppose to do anything without consulting him first. Then he cut the last dose in half and gave some kind of pills designed to help with withdrawal symptoms.
Sounds like you are at a much higher plateau than I was so what I have to say might not help you as much as both of us would like it to.
I am 100% Native American, when I was young I tried drinking, but I didn't do it very well at all, in fact I was a real screw up. So I went to AA to stop drinking. I haven't had a drink in more than 25 years. It is for this reason that I am dearful of drugs and getting off them. I have heard more than one story of people going back to booze after having a dance with medications.
We are addicts. I hate the sound of that, and I hate it when my husband calls me that, but point in fact, that's what we are. The reason the drugs entered our lives was for pain, we did not seek out drugs for recreation or highs, but we are now addicted; we need them to manage pain. I have been very frightened when I would come down in my dosages.
In 2003 I found a physcial therapist that used a fairly new PT system that could reduce scar tissue. At that time only 7 physcial therapists in California were using it. Anyway, they did their thing, and I did the exercises to make my weak muscles stronger and in 9 months my pain was much better. I went to my Pain Management doc and asked her if I could reduce my patch, which then was 50 mcg. every other day plus break through pills. She said she thought if I did it would not be enough to manage my pain. I went back to my physical therapist and told her what the Doc had said and she got angry and reminded me, "It's your body, if you want to go down just tell her, you want to go down!" So I went back and told her I wanted to go down to the next lower patch, which for me would be half. That is alot. To cut your meds in half. A 25 mcg patch a less than half the pills.
I don't where you are spiritually, if you have a belief in a Power Greater than yourself, but I got in touch with my friends and told my husband, and I decided to give it a try. I was squirrelly as hell, couldn't sleep and my back hurt and was tight. I went to physical therapy for the back tightness, I used a couple of tubes of IceyHot and wrote a lot of letters at night when I couldn't sleep. But I connected with Mother Earth and Father Sky twice a day when I meditated and I got through it.
If you are like my husband, you won't buy any of that crap. He is much too logical, but then again he won't take drugs no matter what.
Please James consider my alternative. I have had huge doses of meds in the past for all the surgeries, illness, and manipulations and hardware installed I've had to endure, but my belief system and by reaching out (which you have done, that's great!) get someone to come play cards with you all night if you need it. Where are you in the world? If you were near-by maybe we could put a network together for you.
I have been a proponent of Pain Management patients talking to one another for years, but my affiliation to AA has made it hard for me, there are certain people in the program who think you have undone your status if you have taken drugs. My original sponsor told me I should never tell doctors I am an alcoholic because they do not know what to do with that information, they just flag you as a risk, and don't treat you. My sponsor said it is a cop out that you tell your doctor and make him responsible, you and you alone must be responsible for your sobriety. So many people think, if I tell my doctor I'm an alcoholic, then it's up to him not give me something bad. That's bullcrap, it is your responsibility to monitor yourself not his. If you have done your steps, then you have gotten to know this vast stranger of your life -you, and you need to be able to "see" what you look like when you are preparing to "set-up bar."
Sorry, didn't mean to go all weird on you. Each and every time I have gotten patches or pills, I pray to my Greater Power, I say, "Here I am, you know me, you know where I want to be and where I don't want to be, help me now to use this for my pain not my brain." To this day I have not taken a drug that has made me feel "great" in the wrong way.
I mean to sound preachy about that either, for those of us cursed with chronic, acute pain, is it so bad that we want just one day where we don't borderline awful. Aren't we entitled to a few days of feeling pretty good? Yes, I know that one. So most days I take only 50% of what I need, then on holidays or precious days with my grandchildren I take the full dose prescribed so I can enjoy a bit of the day.
It's bad enough that the people in our life only get "half of us" most of the time, they don't understand we feel just as bad about that.
If it is possible that have more nerve pain than other pain, there is a nerve pain med out there, and the switch from one to the other isn't too bad. Is this an option for you? From there cutting down is easier than the oxy. What are your options? Is it insurance related or have you been labeled?
Hope I have helped in any way at all, I just surely do know how you feel. For me it was the drug and a fear of death through alcoholism first, and I do not want to die of drugs and alcohol. I am willing to do whatever work it takes to get stronger, better, and move health in and drugs out, slowly so as not to wake the other demon in my body.
Forgive my typos, I have so much to do before Xmas, and only so much time and body-clock time.
Respond if you feel any similarities or hope, it's a sign that your heart heard my heart. Otherwise, I hope you find someone that does have the similarities you seek.