Not sure if this is the correct forum, but have been reading, and writing on, this thread for so long, that I know that you guys rock and can provide some support.
Some of you know my story, but it has gotten worse.
About 13 years ago I had a bad fall (while dancing nonetheless) and ended up with a shattered skull and emergency craniotomy. Despite the 3 plates in my head, my skull never healed—and skull fractures, like any fracture—hurt like a b***h.
At first I had no feeling in my head, and my brain surgeon joked I 'may be a numbskull forever', but then the feeling came back, with a vengeance.
I began taking high levels of codeine, and was soon switched to morphine. I was up to 365 mg of morphine a day (a mix of long and short acting—I don't find the long acting help that much because I can't control things like bright lights, noises, stress, my dog whacking me in the head.....
My doctor retired, and while I was finding a new one I drove 3-4 hours each way to a pain/opioid clinic every two weeks. I then found a local doctor who seemed willing to treat me, and cancelled the clinic, but he then reduced me by 25% our first visit, then another 10%, then another 10%.... Perhaps needless to say my pain was becoming harder and harder to control or live with. My pain scores more than doubled, and I couldn't work after 3 pm (I run a business and used to be a night person).
I never misused my opioids, I don't think, some days I would take a few more than others—like when a crazy weather system came in (pressure also kills me), but always had enough left to get through the month/2 weeks or whatever. Sometimes I would chew up the time release to make them work immediately.... (I would also often take them with vodka to help them work), ok maybe that would be 'misuse', but still, I am a professional and no one I know ever thought I had a 'problem'. If anything they hate to see me in pain.
But 'new' doctor and I (not just new to me, but the field of medicine) just didn't see eye to eye on anything. What ever happened to the duty to relive pain and suffering? I was in more and more pain, and my work/family life were suffering. He even accused me of taking drugs I didn't, because he didn't know how to read the urine test!
So, I dumped him and even launched a complaint after many such 'episodes'. He told me that my old 'pain/opioid clinic' 3-4 hours aways, would take me back.
So, that is where I went yesterday. First the 'evil' nurse (others in the waiting room told me that, I had never met her before) told me the doctor 'may not take you'. What? I have had this appointment for 6 weeks, and the doctor I complained about promised they would.
Then I went in a room with her AND the Doc, the doc is sweet, so I guess he uses her as 'the muscle'. They told me I would now have to visit WEEKLY (a new policy) and would be reducing me by 10% every two weeks. I just cried.... I have one car in the family and my partner has a combination of medical appointments and court all the time. I also volunteer at a society whose meetings are Mondays AND my yoga classes are Mondays as well. So there goes the 'mindfulness' aspect of pain management.
But they didn't seem to believe me or care that I sat 7 hours in a hot car to get my meds (with my partner and dog). Aside from the paying for gas and taking 20% of the week off work, paying a weekly dispensing fee on two meds, more than quadruples what I was paying for them. How can someone work while taking every Monday off (I have been looking for a 'real' job). But they don't care, this whole 'opioid crisis' will affect those of us who need and use these drugs safely. Doctors are now more afraid of losing their licenses than they are about treating their patients—and that has got to stop!
So, I figured I had a couple of options:
1) Jump off the nearest bridge, because I can't live with pain or with driving that way each week (I told them that too)
2) Find my meds on-line or on the street and have no idea what I am actually getting (in come the statistics of chronic pain patients dying from overdose who wouldn't otherwise)
3) Quit cold turkey and see how I feel.
So, I chose #3, for now. It is only day 1 and so far all I have is a headache (duh) and am hot/cold all at once.
I just made some mushroom tea and do have some poppy tincture if things get real bad, but I am not looking forward to the next few days. At the same time, I just can't afford the other option (particularly if I can't work), but options #1 and #2 are still on my mind.
So, I did look up 'clean Kratom' from the other post and was considering ordering some, but don't think it will get here in time. I can't make it to my appointment next Monday as my partner needs to be in court. They didn't care, or believe me ('your partner has bone scans and court?' 'Yes our lives really suck right now' and honestly just treated me like a junkie lying to get meds. It is a sad, sad world when doctors are treating their patients in a way that can make them lose their livelihoods or go cold turkey, but I don't provide any other options.
Anyway, I can't stop crying, mostly because of the state of this messed up world. But look forward to calling them Friday to cancel my appointment. I told them that those of us with chronic pain will be the real casualty of the crisis; the doctor seemed sympathetic, his brute of a nurse, not so much.
If anyone has any tricks to get through this, please let me know. I was taking (more than I should due to my old/new doctor doubling my script one month accidentally) 230-260 mg/day of morphine up until today.
You may hear from me tomorrow... Or may not. But I still don't know how I will manage the pain.
Any advice is greatly appreciated.