The good news is it not only can be done, but I did it--while in chronic, often torturous pain, with no encouragement from the doctors, no hope that it was possible, and no hint that the pain might diminish.
The great news is that before I began I was virtually housebound, using a cane and other assistive devices and had a home health care aide 20 hours a week. Today, just nine months later, I am walking, sitting, driving, and independent. I have not only hours but days without pain, and it no longer rules my life. Best of all, the terror and isolation I lived in, the state of constant hopelessness--is far diminished.
My life has meaning again, and there are even full days where I do not think about what brought me to such a state, and if I do it does not trigger me.
I seldom think of painkillers, where they were once my life, as I lived for the short moments of relief. They never relieved my pain--only gave my mind a temporary escape. I began with 5 mg. of oxycodone once nightly; I was prescribed more, bought fought it for a year, as I knew I would become addicted, and as I knew it did nothing to heal me or help me get a diagnosis, treatment plan or cure for the terrible internal nerve pain; the onset was immediately following an injury in a doctor's office during a diagnostic procedure, and it was complicated by my breaking my left hand, and then my left foot.
This , coupled with some extreme traumas--including loss of my home after hurricane, and the death of my two closest friends. These incidents were not related in any way--not the injuries, or the disaster or the deaths--and yet they all happened in a short time period, and wreaked havoc with my neurological system, in terms of processing both physical and emotional trauma. I did not know this at the time, but gained an understanding of this over the years when I began to heal.
The situation was fed by seeing so many doctors and specialists, and not given a clear picture or any hope, beyond prescriptions. WHen I went to see a new doctor last week, the intake nurse read me the list of meds I had been prescribed. I was so proud to tell her I wasn't on any of them--she barely blinked. But when the doctor came in, I asked if he had seen the list. He said yes--I thought to myself, I have to meet this person, I can't beleive they could still be alive.
I was prescribed codiene, morphine, oxycontin, valium, neurontin, lyrica and two or three other medications. I am on zero now.
The one person who gave me great hope was a pharmacist who explained to me about pain receptors closing down as you take narcotics, and then new ones opening up, thus requiring a higher dose. I could see this clearly in my mind--and that helped. For once, I didn't look it up to confirm, as almost nothing I looked up about my condition or its treatment offered any hope. I asked if it were possible that as I went down on the dose of the drug--(bit by torturous bit as it turned out)--if the pain receptors then might go in reverse and shut down, and I might end up in much less pain. She said absolutely yes.
This small bit of information is what I kept in my mind, holding onto it during the most torturous days. I kept telling myself I did not know what would happen in the end, but I did know what would happen if I stayed in excruciating pain, terror and on a high dose of drugs that was only climbing higher with each passing month.
I also used ice packs all over my body--and use zero now.
I was on 120 mg. a day when I began to cut the dose. I went on some online boards to see how others had suceeded; there wer emany more stories than I imagined, including ones from people, who, like me, had been legally prescribed for legitimate pain. I want to add my voice to this group--that it is not only possible, but there is a chance you will have your life back.
Of course there were times when the pain was so bad--I don't know how I stuck to my gameplan--or rather I do know; by praying and admitting that I was powerless over the drug, powerless over the pain, and turning it over, and using a daily recovery program, with the support of others. There were times--when I was about two thirds there, that I called an emergency room and was told by the doctors to stop immediately--that what I was doing was dangeorus. And it was dangerous, so I don't recommend it without medical help and a lot of support and guidance. i wouldn't want to be responsible for anyone suffering more than they are. Yet I do want to encourage anyone who feels in their heart that it is time to get off the drugs--time to live instead of die.
The pain and discomfort of withdrawal was like nothing I had ever experienced, sweating, "kicking"--the whole lovely experience I'd read about, but it was absolutely nothing compared to the months of phsyical pain as my body screamed out that it wanted , needed and deserved to be out of pain. This is where my other great help came in. Dr. Howard Schubiner, who works with pain syndromes that involve the way brain processes, perceives and gives back images of pain that are identical to pain caused by physicological inputs, such as the pain from an initial and severe injury that requires immediate treatment. I had to continually convince myself that even though there was a physiological cause, that the signals were actually being produced in my brain, and the brain was quite malleable, and trainable, and perhaps, with the help of my higher power and my own effort and vigilance--that I could
convince my brain to stop offering such strong and disastrous signals, when after all, no help was ever going to come along--and furthermore, these signals were of no use.
All that pain signals do is convince you to get help, or to stop moving so you can not create more pain.
In my case, perhaps certain movements and positions were injuring me more--but I came to believe that this was not the case. It was fear that had convinced me, fear that had shut my life down to a pinhole, and fear that continued to produce the pain. No it was not in my mind, not a hysterical illness--
there were three key nerves involved and they cause some of the most heinous intractable pain you can imagine--the ilioinguinal, pudendal and genitofemoral nerves. I had also been told I had three herniated discs, an SI joint issue and other structural issues, and that these worked together to create constant muscle spasms.
I threw that all out the window. I marked on my calender the doses. I walked a mile every day even when it snows, regardless of pain. I engaged in my recovery program and made calls and helped others.
I turned my world into an outpatient rehab, or rather my higher power offered me the protection of a celestial rehab.
They had given me two drugs to get off the codiene--one a drug now classed as narcotic--I notice dthe effects right away and threw it down the toilet. The other was valium, and I used it carefully but was still up to a 5 mg tab by the time I was done. One week after being completely off the oxycodone, I began reducing the valium, which was probably insane, and I wouldn't advise it. particularly in my circumstance; however, I continued, and it was in some ways harder than getting off codiene, and
it has now been almost exactly 90 days free of that. It caused much anxiety, and I was afraid I would remain in that state for years--but less than three months later, I am so much calmer than I was, calmer and even saner, than all the years on those drugs.
I've been waiting to write this, but luckily so few read my blog! I've been waiting until I had the perspective to write something clear and hopeful--but I jsut want to share now, as something tells me there oculd be someone out there who doesn't need a perfect report, or perfect instructions, jsut some hope and encouragement that they will get better, and that they can do it.
YOU CAN DO IT--JUST NOT ALONE! god bless, and good luck, my prayers are with you.
I don't know you, but I believe in you. You deserve to have a good life--and to be free again--from pain, from anxiety, from isolation, from terror--and from dependency on drugs.
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