Hello everyone. This seems the best place for me right now. In 2004 I was diagnosed with Fibromyalgia, I even went to three separate doctors to be positive; my mother has fibro and growing up it affected...a lot. I managed okay, seeing a pain specialist for years, until 2007. In 2007 I was simply feeling ill constantly (in differetent ways than fibro) and my GP ordered a brain MRI. Suprise surprise, brain tumor. It's been two years of testing and treatment, and my oxycodone is all I've ever had for the pain. Looking back I wonder how smart that was of my team of doctors. For two years my dose has gone higher and jhigher and higher, the only reason it didn't become a crazy thing was steel will, the past ten months my dose has gone unchanged even though it no longer stops the pain level. Stop is the wrong word, it never has done that. But between my fibro and the massive daily head pain from the tumor......and as luck would have it, I was hit by a man in a truck running a light, which burst three of my discs and destroyed two vertebrae (doctor says the damaged bones cannot be helped but I need back surgery, however, my brain tumor has been front and center for two years!). WELL after two years without being remotely cured, I went looking for a new neurosurgeon. He wanted a few things done before he evaluated my head pain, one was, he said, to switch me from oxycodone to oxycontin. He said that the possibilities of rebound headache with shorter-acting ocycodone needed to be dealt with, so to switch to oxycontin. He sent me to a specialist who was supposed to help me transition slowly, my new neuro said it may take awhile. WELL. The specialist instead took me cold turkey off my oxycodone (huge, huge, huge daily doses), and put me on suboxone. I guess I was smart enough to check into a brief Detox because he told me he'd be there to closely monitor me, that they'd find a way to control the pain level.. Not. I am home today after the past five days being in Detox. Because I was a patient who only ever had the one doctor writing and following my meds, I was only pushed through fast detox. I say only because for the street drug users and alcoholics there, THEY got sent to suport groups. I didn't. Nothingfor me, which is insane. Mentally, I feel very, very fragile. I'm scared. Last night I was up till five am (this after having been jarred awake at the hospital at four am Tuesday by a heroin addict going crazy, and the male nurses barring my room since I was the only female on the ward, it scared me to death. I had no idea I was such a bad fit there and it was the ONLY place the so called specialist would send me. Frankly, anxiety and pain are my biggest issues. Last night my head pain, which has been daily for over two years, was so bad, I just sat in bed and cried. What else can I do??? The supposed specialist is also an arrogant chauvinist, and even though Ive never in my life touched street drugs, and only ever had these meds now from one doctor, always so, so careful, and now I am in hell. I also cannot afford it, I do have good insurance but they won't touch the Suboxone!! I cannot afford six hundred a month and more, I can't! I only had enough money for one week of suboxone, and that won't change, at its cost I can only afford one week a month. I don't know what to do. The "specialist" clearly believes fibromyalgia isn't real (darn it I am tired of that, though granted I myself was wary in the past, before I GOT it) and though my tumors show on MRI, and I have a slew of health problems from the tumor............the specialist told me two dayI' s ago that he didn't care about my head pain. All he wanted was to take me off narcotics. I said, well, what do I do, and he said pain wasn't his concern. Well, great. Howwill the neurosurgeon believe me?? Also I'm dizzy and my bp is very low. They put a Capacin (spelling?) aptch on in Detox, the nurse said to leave it on ten days......then the "specialist" took it off me Monday, only four days on it. I'm almost shocked I'm not rocking back and forth in a corner wailing. Inside, I am.
I need people to talk to, very badly. Im sorry this is huge. I hope that is okay this first post. I wanted to be sure my situation was clear.
Thank you guys. Just reading the old posts is encouraging.