Hi again all. It's been a long time since I've been on the board here, mainly because I thought I'd achieved a reasonable level of pain control, but that seems gone now and I need some advice and information.
My *official* diagnosis is Disc herniations with spinal cord and nerve involvement at L4-L5 and L5-S1, peroneal nerve damage and a secondary diagnosis of chronic pain syndrome.
My current pain management doc is actually not a pain specialist but a family practitioner at our local small town clinic, and the "authorized treating physician" for the work comp back injury causing my intractable pain, but he has been quite compassionate and trying to get me to a decent level of pain control.
For more than 2 years before the WC finally was forced to pay for pain management, I had a P.A. (in small towns, they act as regular docs) prescribing 60 7.5/500 Lortab every 2 weeks, which left me at a steady 8-9 pain level all day with flares over the top, but it was all I had.
When I began seeing my current doc, he immediately put me on Morphine ER 15mg twice daily and we kept up-ing that dose until we reached 60mg twice daily, with 7.5/500 vicodin and 50mg Ultram each twice daily for breakthrough, until the morphine caused so much nausea I couldn't leave the bathroom or keep anything down at all.
So he switched to OxyContin ER 40mg twice daily, with 7.5 Percocet and 50mg Ultram twice daily for breakthrough. He increased the Oxy to my current dose of 80mg twice daily, with the same meds for breakthrough, and each time he ups the doses, I feel two things- #1, a cross of guilt and shame for needing that high a dose, with a reluctant acceptance of my current physical disabilities, and #2, a hope that maybe we've finally reached "it", the right levels of all meds.
I see the doc once every four weeks to refill meds, and
For a short while after each visit, usually 2-3 weeks, I feel as if maybe we're at the right dose, but then by the time its time to refill, I feel as if the current dose just isn't cutting it.
Right now I'm supposed to take 80mg OxyContin ER in the morning and 80mg OxyContin ER at night, with my two Percocet and two Ultram available at needed times throughout the day for the breakthrough pain. I've also got Lidoderm patches that helped a lot in the beginning but only sometimes now.
I told the doc at the last visit on November 9th that I feel as if I have somehow done something else to my back (though I am basically inactive and sedentary so I'm not sure what I could have possibly done) because my back feels worse and different than the regular pain I've been dealing with for more than 3 years.
I don't know if the 'baseline' meds of 80mg Oxy are what is not strong enough, or if my breakthrough pain is flaring up more than before, or if the breakthrough meds themselves are what are not strong enough, but where before the 2 Percocet and 2 Ultram each day for bt were ok, they are not now. It's only been 2 1/2 weeks since my last visit, when he gave me 60 Percocet, and I'm almost out ( 2 pills left), and even after taking them I still hurt, at about a 5-6 level. His (our) goal was to get my baseline at a 3/10, and although I can get that good of pain control about once a week, that is the exception not the rule.
When I began seeing this doc, I signed a pain contract, though since hes never urine tested me or questioned that I am taking the meds properly, I wonder if that wasn't just a formality required for him to cover his own butt for prescribing narcotics. Nevertheless, I am scared to contact him tomorrow about being out of Percocet, but I know I'll never make it until my next visit December 9th without something to control the pain.
My main questions are these-
1. Is it the baseline med (Oxy) that needs to be increased so I require less BT meds? Or do I need stronger, more or different BT meds? Or do both the baseline and BT meds need adjusted? I just don't know exactly how to explain the pain and situation to discuss it with the doc. In the past, he has just had me show him a chart of when I take my meds each day and the pain levels throughout the day, but I'm not sure that this is getting the correct treatments.
2. What is the strongest OxyContin ER dose, and what might be considered "average" or normal for my conditions? Like I said, I feel weird needing to go up in dose all of the time- it makes me feel strange because of the stigma associated with taking narcotic pain meds anyway, and though I've been going through this for more than 3 years, it is still hard for me to accept that I am only 39 years old, and will be in this condition and requiring pain meds for the rest of my life, (barring divine intervention or major medical or surgical breakthroughs). I also worry that at this rate, I will be at the maximum doses of everything soon, and there will be nothing else I can take, and then what will I do. Has anyone else dealt with these feelings? Why am I afraid to take the medications I clearly need? I think it's the need part that scares me.
Finally...since this is a work comp case, I have a court date on December 7th
which is a "Pre-Settlement Hearing Conference". They have previously offered 45k to settle. given that my pain meds themselves will likely cost in excess of $500 monthly, I feel like that is WAY too low an offer, and so far, my attorney tends to agree. However, I don't want to stretch this out much longer either. With Christmas around the corner, I'm more tempted to just take whatever they offer to get it over with (this will be my 4th Christmas without being able to afford any decent gifts for my kids - I know that it is not material goods that count, but still, I know we all want to be able to buy something nice for our kids. I'm not talking about any hundred dollar electronics, but even a 30 or 40 dollar something per kid would be nice.)
BUT, without being able to work or have insurance, I won't be able to afford the meds on my own either. Does anyone know if OxyContin and Percocet can be gotten through patient assistance programs?
Ok, I guess that's all for now. Boy do I miss this board, and the support of all of you!
Thanks in advance, and have a good week!