12 yrs of chronic pain, 14 lumbar procedures, new Rx bad!

Posted by deankay @deankay, Aug 4 1:10pm

For reasons no one explains but, the DEA is simply eliminating all Opioids. A simple and easy way to treat the hundreds of abusers by punishing those with true regional chronic pain syndrome. So after 6yrs 10 months of taking hydromorphone 8mg 5XDay, I was able to managed a large portion of lumbar pain for a 6 foot 3 inch guy. Now a problem with a new medication, Buprenorphine and Naloxone 8mg / 2mg. Problems started fast with teeth. I have never had a cavity, crack or gum issues. Now, this film goes under the tongue until it melts. My rear teeth cracked, top & bottom and broke off. Besides severe gas, diarrhea and very marginal lumbar pain help, I was scratching my head. Looking for side effects on reputable websites listed; Teeth decay, back pain, etc. What am I in for in the future? With electrodes in the epidural space, I may not find a Dr. willing to correct the problem as now surgery is extremely invasive. Dr’s have to do this when fusing a vertebrae to and other. So know, it depends on the neurosurgeon’s experience and tolerance for risk associated with open time in the OR. They may pass on my complex problem and show me the door. No one likes serious surgeries, but even fewer want to live with bad pain and a non-existent quality of life.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@besmith57

Thank you for your advice. I go Thursday for my injection and was planning on asking him about ablation. I hope it can be an option.

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My first RFAs in 2000- 2002 last 15 years. Then I went back every couple years, and then I needed lumbar surgery. Heat not Pulse works for me. I had to fight for my stable use of percocet. I have pain in my sacral bones and tailbone that won't go away. The secret words ARE: "relieve my suffering." That is their job. They have to deal with "suffering." Make sure you have the best team of surgeons, pain mgt., and doctors. You have to kiss a lot of frogs. I had FOUR opinions over 20 years. I finally got into a great space. Don't give up. The medical "system" is a mess. Find good doctors. They are there!

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@loriesco

My first RFAs in 2000- 2002 last 15 years. Then I went back every couple years, and then I needed lumbar surgery. Heat not Pulse works for me. I had to fight for my stable use of percocet. I have pain in my sacral bones and tailbone that won't go away. The secret words ARE: "relieve my suffering." That is their job. They have to deal with "suffering." Make sure you have the best team of surgeons, pain mgt., and doctors. You have to kiss a lot of frogs. I had FOUR opinions over 20 years. I finally got into a great space. Don't give up. The medical "system" is a mess. Find good doctors. They are there!

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Thank you! I think my doctor is good. I go to a highly rated practice.
If the injection doesn't work I am going to ask about ablation.

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@deankay sorry for you plight regarding buprenorphine. Unfortunately you were prescribed the wrong formulation for chronic pain. Unless you’re in recovery for an addiction for chronic pain you need the buprenorphine patch. I’m prescribed 20mcg x7 days that provides 24/7 relief. The dose can vary. I was started on 15mcg but it was ineffective after 2 weeks and it was increased. If I may ask what type of provider prescribed your meds?

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I started buprenorphine in a clinical trial for pain patients in 2008 and took a year off 2010 to 2011 but am back on just subutex no naloxone but still have to melt it in my mouth. Gee I am getting several dental implants and wow they cost a lot but not sure if it is the medication because I went years without care-too poor and in fact lazy.
In any case I would not give up the medication because I live in great pain and it works well-Not great but takes the edge off, I used it post two elbow replacements as well. dr gave me oxycodone but there was no reason to take it as the bupe saturates the receptors.
I hope you find the answer. i am sticking with the buprenorphine.

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@gbear1953 im on buprenorphine too but the patch that provides 24/7 pain relief. Unless you need the pill due to past addiction issues I’d try to switch.

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@janisum

I can't find anything on the DEA or FDA site about eliminating opioids. I've been on methadone for 12 years for my advanced stenosis and spondolothesis. Now I'm worried that my only relief will be taken. I don't want multi fusion surgery at my age and with my health issues. The methadone at 5 mgs. twice daily at least takes the edge away

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No, it's the CDC's old recommendation that cut all our opioids. As a result of doctors then abusing their prescription pads before 2016. What happened (federally) is the CDC published new "guide lines" regarding the issuing of painkillers, for doctors. Some US States started in earlier (saw it all coming) in 2015. That's what happened in Alaska, the very week I was first given a script for hydrocodone at a real pain management clinic, which is the only reason I got any help while they worked on my spine. The CDC has since learned the error of their ways, which was that their action in 2016 scared the living whatever out of all the doctors in the USA. Other nations did the same to their doctors, since then. On Nov 4, 2022, the CDC issued new guidelines because they recognized (after so many deaths by suicide and PM patients turning to illegal drugs) the error of their ways. Of course, they blamed the doctors for taking their "recommendation" as law. It never was law they said, they only issued "guidelines". Yeah, tell that to the graves of all those now gone. The true problem now lies in all the up and coming doctors who have been through medical schools since and beginning in 2016, who were so convinced (brainwashed) that just about everyone can adjust to live "in pain" as if there is no upper limit that can not be adjusted to. We just need to take a few BH classes, right? The rest of us are whiners. I've seen some of the studies done that supposedly prove their (too often just plain sadistic) handling of pain in patients. One's that they can't even read properly, which prove in fact the opposite. It is some of those studies which have caused the CDC to repent. It all came about because of the invention of time released opioids by one family owned pharmacological company. They lied, lied, and then lied some more. Telling the whole healthcare industry in the USA (prior to 2016) how non-addictive it was. See "Painkiller" a TV series (I believe is at Netflix) or The Crime of the Century that's on Hulu, right now. Both tell the story. The problem lies with our medical schools now. Most of the young doctors I've met, and some whole medical systems (Providence/Swedish in Seattle, WA) are still functioning off of the CDC's old 2016 garbage regarding opioids. Still, the truth is, it was the overreaction by almost every MD and DO in the USA to that 2016 set of CDC guidelines that ended up doing this to us. That same kneejerk response to the CDC 2016 "guidelines" also in large is part responsible for many of the deaths that resulted from people then already living on things like fentanyl patches under the supervision of their doctors, who got cut off, and ended up doing heroin, or other illegal drugs. Then dying of that, or just plain killing themselves out of a complete loss of hope in the humanity of our medical professions. The run amok negative peer pressure that so many doctors turned on each other, is also partly to blame. Not least of which was the health networks they worked in, and hospitals they were in staff with. Apparently, the healthcare industry forgot they have drugs for such corrosive paranoia in individuals. China cranking out new and more addictive designer opioids, everyday, and a open southern border to send them into the USA though, is helping no one's pain. The problem is that all our young doctors/providers, and their nurses/assistants, have now already been systematically brainwashed.

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@yrm

I just finished 18 days of steroids starting with 60mg/QD X 3 days, then 50mg/QD X 3 days etc. I’ve gone from excruciating pain that landed me in the ER to being able to walk without a cane for a few minutes at a time. Now I’m trying to do everything I neglected for months due to pain in lower back and left leg pain and weakness. I’ve have multiple steroid epidurals and 2 neuro ablations, none of which helped. I have herniated lumbar discs , facet nerve impingement and “mild” scoliosis. I was told by my pain doctor that if I continued to be in pain that my only option is surgery. He never mentioned a nerve stimulator. Has anyone with similar medical conditions had a stimulator implanted and did it work? I was told by the surgeon that if I had surgery it would be very difficult and would be a long recovery. .

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I've tried two scs types for my back pain. The first one was a Nevro which did absolutely nothing for my back pain. I inquired about reducing my pain meds after the implant and the pain management Dr stated that he had implanted hundreds( he must be wealthy by now) and no one ever gets off the meds. We'll, it's because the stimulator don't work! I did try another from Boston Scientific with the same results. I must have met with the rep weekly for at least three months before he said this is not working for me. I had it removed a short time later. Now I just have the same lumbar pain but without having this big sore lump on my ass. I'm looking for a good neurosurgeon in San Antonio that will take on my Medicare advantage plan. I guess their called advantage programs because they take advantage of their patients? I don't know your pain of course, but if you get an scs, run through your programs and if you don't get relief get it removed. I wasted four years on those things. Hope your trials come out better than mine.

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Does anyone know anything about the intracept procedure? I have severe arthritis in lumbar with pinched nerves. RFA’s didn’t work and steroids didn’t work either and after six procedures and 7000 dollars out of pocket and yes I have insurance I’m done with expensive bandaids!

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@thenazareneshul

No, it's the CDC's old recommendation that cut all our opioids. As a result of doctors then abusing their prescription pads before 2016. What happened (federally) is the CDC published new "guide lines" regarding the issuing of painkillers, for doctors. Some US States started in earlier (saw it all coming) in 2015. That's what happened in Alaska, the very week I was first given a script for hydrocodone at a real pain management clinic, which is the only reason I got any help while they worked on my spine. The CDC has since learned the error of their ways, which was that their action in 2016 scared the living whatever out of all the doctors in the USA. Other nations did the same to their doctors, since then. On Nov 4, 2022, the CDC issued new guidelines because they recognized (after so many deaths by suicide and PM patients turning to illegal drugs) the error of their ways. Of course, they blamed the doctors for taking their "recommendation" as law. It never was law they said, they only issued "guidelines". Yeah, tell that to the graves of all those now gone. The true problem now lies in all the up and coming doctors who have been through medical schools since and beginning in 2016, who were so convinced (brainwashed) that just about everyone can adjust to live "in pain" as if there is no upper limit that can not be adjusted to. We just need to take a few BH classes, right? The rest of us are whiners. I've seen some of the studies done that supposedly prove their (too often just plain sadistic) handling of pain in patients. One's that they can't even read properly, which prove in fact the opposite. It is some of those studies which have caused the CDC to repent. It all came about because of the invention of time released opioids by one family owned pharmacological company. They lied, lied, and then lied some more. Telling the whole healthcare industry in the USA (prior to 2016) how non-addictive it was. See "Painkiller" a TV series (I believe is at Netflix) or The Crime of the Century that's on Hulu, right now. Both tell the story. The problem lies with our medical schools now. Most of the young doctors I've met, and some whole medical systems (Providence/Swedish in Seattle, WA) are still functioning off of the CDC's old 2016 garbage regarding opioids. Still, the truth is, it was the overreaction by almost every MD and DO in the USA to that 2016 set of CDC guidelines that ended up doing this to us. That same kneejerk response to the CDC 2016 "guidelines" also in large is part responsible for many of the deaths that resulted from people then already living on things like fentanyl patches under the supervision of their doctors, who got cut off, and ended up doing heroin, or other illegal drugs. Then dying of that, or just plain killing themselves out of a complete loss of hope in the humanity of our medical professions. The run amok negative peer pressure that so many doctors turned on each other, is also partly to blame. Not least of which was the health networks they worked in, and hospitals they were in staff with. Apparently, the healthcare industry forgot they have drugs for such corrosive paranoia in individuals. China cranking out new and more addictive designer opioids, everyday, and a open southern border to send them into the USA though, is helping no one's pain. The problem is that all our young doctors/providers, and their nurses/assistants, have now already been systematically brainwashed.

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I was lucky to get into a clinical trial of buprenorphine for pain.
A couple of years ago my pain doctor cut everyone off except for patients on buprenorphine.
Those that wanted it were offered to wean off their opiate medication and transition to bupe.
I know it is not the best painkiller but two things of note: Number one is I did not have to suffer another WD from opiates and number two. it works on pain.
Not telling you to try it but I find it to work well

Glen

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@koneil

I've tried two scs types for my back pain. The first one was a Nevro which did absolutely nothing for my back pain. I inquired about reducing my pain meds after the implant and the pain management Dr stated that he had implanted hundreds( he must be wealthy by now) and no one ever gets off the meds. We'll, it's because the stimulator don't work! I did try another from Boston Scientific with the same results. I must have met with the rep weekly for at least three months before he said this is not working for me. I had it removed a short time later. Now I just have the same lumbar pain but without having this big sore lump on my ass. I'm looking for a good neurosurgeon in San Antonio that will take on my Medicare advantage plan. I guess their called advantage programs because they take advantage of their patients? I don't know your pain of course, but if you get an scs, run through your programs and if you don't get relief get it removed. I wasted four years on those things. Hope your trials come out better than mine.

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Thank you
I am taking buprenorphine and I am grateful that my pain clinic is okay with that.
My low back and leg pain is "managed" with the bupe but night's can be a horror as I sleep on my left side or back and it causes pressure on the nerve. I was about to say I often wake up nearly screaming in pain but fact is I Always wake up with the pain.
I try and not take my dose but sometimes have to, Anyway, the rest of the next day I am okay
Clinic talked about this implant. I value your input and have heard from others so I am going to decline the offer of a nerve stim.

Glen

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