Practical Pain Management Community Advice

Thank you and help with joining action group.

From: Etowah - 40 weeks 1 day ago

Hi. First a little about me and my conditions...
I am a long term pain management patient, over 10 years. I have been on Avenzo 90mg with 3x vicoprofen a day for breakthrough pain. I’ve been on the Fentanyl patch, Mylan 5mg (50ug per hour) with the same breakthrough meds. With The Avenza, the constipation was a bit much but manageable with a tablespoon of KARO corn syrup every day. The patch worked well for about 2 1/2 years, occasionally one would come off but eventually I started to sleep 14 hours a day. They tell you that you cannot do this, but you can. I titrated myself down on the Mylan patch by cutting them, IIRC, I cut away about 1/8th of the patch per week.. no problems at all. Then I went on just Vicoprofen at 120 a month. I’m currently on Norco 10/325 at 4.5 a day and am in misery most days. I decided I wanted the short acting Norco so that when I had a good day I could take less and in a bad day take more. Currently 4.5 is barely getting by. I hurt all the time. I bought a Leesa mattress and highly recommend it. I’ve settled on a Casper pillow, it works pretty well. I tried the My Pillow and it works as advertised. It holds its shape but for me, that is not good. I laid in one position for too long AND the foam pieces in the My Pillow are a bit hard and with pain at C-5-7 and T- 2-3, it pressed too hard on those areas. It may work for you. The Coops Hardware Pillow is HUGE but you can remove some of the fill, though I could never get it right.
So... last month I asked and my PA at my pain management clinic switched me to 4.5 Percocet. However they were not 10/325, they were 7.5/325 because someone, somewhere with a chart decided that 7.5 oxycodone is about equivalent to 10mg of hydrocodone, it is not for me. I seem to have a high metabolism. When I was on the patch I had to change it every 48 hours rather than 72 hours, the third day was BAD, thankfully my doctor understood.
Last year I decided it was time for a change. Oh boy, what a nightmare. First my doctor wanted me to try another patch. Butrans, OUCH. Next month a stronger Butrans patch this time he would not prescribe any breakthrough meds. That was two bad months! Next month he wznted to try, again with nothing for breakthrough, something called Nucynta ER... ugh. Next month stronger Nucynta ER... I was REALLY happy to get back on Norco but.. it’s just not working. I hurt all the time in my upper spine, low back, left knee, sometime my left hip (I think that is bursitis) and both ankles if I walk much. I hurt when I go to bed, I hurt when I get up. I hurt when I load the dishwasher or do laundry. I limp to the mailbox and back.
I am now afraid to ask for change. I’m hoping to at least go to Norco 10/325 at 5 a day. That would still not be enough but I don’t think they are going to give me enough in any case.
I will be 66yo this month and don’t know what to ask for from my doctor. I don’t need something equivalent, I need something more. Maybe I should try another time release med but I’m worried that my doctor won’t give me any breakthrough meds if I try to go that way. A few years ago I asked and he wrote me a prescription for Exalgo... what I didn’t realize was that my insurance didn’t cover it and IIRC it would have cost me over $1k a month. I’ve never tried OxyContin but I read that it isn’t as effective as it was before they made it tamper resistant butthat could just be abusers complaining, I dont know.
I’ve tried epidurals, I break out with eczema for three weeks every time and get a couple days of relief. I’ve tried gabapentin and pregaba, both give me leg cramps. I’ve tried cymbalta, it gives me a headache, makes me grind my teeth, and makes me really stupid. Opioids seem to be my only chance.
Now.. about three years ago my parents died (at home, 96 and 97 years old 6 weeks apart.. God blessed them) but while I was down there I got some marijuana from a relative. It was the expensive stuff, the street name was LOUD, lol. It was really smelly, in a good way. I tried it three times. I knew I couldn’t use it because of the pee tests BUT for those afternoons I swear, I felt a good 20 years younger, I got up and started to do things, I forgot about my pain and I was happy. I didn’t take as much opioids those days either. I think marijuana is not necessarily a pain reliever but it distracts you and that really helps. This was two small puffs! I hope we will soon be allowed to use this for a better life.
So... my questions:
1: I read a reposted article on Facebook, on Pain News Network that was written by Dr. Tennant where he mentions joining advocacy groups. I am interested but I don’t know where to find them.
Can you guys please tell me about some groups to join and help with?
I surely thank you and I will do all I can!
2: Pain advocacy groups that involve the legalization of marijuana and not the stupid pill they allow here in GA but of course not for chronic pain...
I’m interested, retired, and want to help. I can’t get out as much but I can read and write and contribute time and some mine. I’m not rich but I’m not poor either.
I want to help.
3: Any advice on where to go with my meds. My doctor is open to change. I’ve never given him a reason to not trust me so he will likely approve of anything within reason but it’s become harder to get him to raise my dosage.
Thank you so much, I’ve tried to be candid and helpful but I need help and don’t know what to do.
Etowah

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Hello Etowah, I'm in Northern California and also want to help. My husband is the one with chronic pain. I want him & other responsible patients to have a constant persistent voice. I've contacted my Congressperson and starting to collect local stories. I plan to submit them to my Congressperson, my U.S. Senators & Bernie Sanders. I happened to meet the Commissioner of Human Rights in my town & he put me on his meeting agenda for June. I read a very good article about how the rights of responsible patients are being trampled on. I am going to contact the doctors in the article. I am basically following avenues that present themselves to me & staying open. I don't know where any of this will lead, but happy to keep you updated if you'll do the same for me. Thank you for your post.

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