I am fighting the purveyors of the false narratives (1) that any exposure to opioid medications automatically make a person turn into a raving drug addict frothing at the mouth for the next hit, (2) that opioid pain relief is not appropriate, and (3) that restriction of opioid prescriptions and combination therapies with benzodiazepines or stimulants is needed because we have a prescription overdose crisis (completely untrue). And, I am so done with the DEA seizing the assets of our pain doctors and jailing them. These liars must be STOPPED. And we’re coming for them.
I found it very interesting that we had a press release this week about Congress asking the DOJ/DEA to stop funding predictive policing software programs, especially ones sold by a paid “expert witness” whose testimony used to incarcerate doctors has come into question (which are all things that I notified my Congressman about). And, that I got this letter from him yesterday!
This fight is VERY personal to me. In 2022, I suddenly returned to North Texas after being away for 8 years, after losing my long-term condo lease in Palm Springs, CA, due to the owner’s sale of the unit. My mom was very sick at the time, and I could not find suitable, immediately available housing anywhere within my budget. I decided to return all the way to North Texas, thinking that I could return to the pain clinic at the hospital where I was seen between 2011 and 2015 during last time I was there, but instead I was denied my 14-year pain medication regimen, by FIVE different doctors, all citing “medical board policy.” Of course, I knew cannabis was prohibited there, which was one of the MANY reasons I left Texas in 2000. I had been using non-decarboxylated, non-psychoactive THCA tincture, which is good for pain and a feeling of general well-being. And,
I was smoking a tiny bit of cannabis in the water pipe before bed sometimes when it was REALLY bad. (I can’t just smoke cannabis all the time, as much as I would benefit from that, because my 82 year-old mother lives with me since 2011, and I have my hands completely full, it is comparable to a full time job at times). I left CA April 28, 2022, with one month of medications, and my doc prescribed one more month AFTER I left, so I had my friend send them to me. It took 54 days to get a clear urine screen, and I could not even GET an appointment with a pain doc until that happened.
So, they put me into sudden discontinuation, full opioid withdrawal, uncontrolled pain, NEW pains that I usually did not have at all, high blood pressure, cortisol/adrenal shock, crazy nerve pain, tingling, the WORKS. I had to buy a super heavy weighted blanket to even be able to lie down at all, much less rest. Then when I was finally seen, I was offered only a Buprenorphine patch and an epidural. The patch burned my skin so badly, itched and burned the entire week it was on, and each burn would take more than 2 weeks to heal. They did not control pain, and they did not even control withdrawal symptoms for an entire week. The doctor ignored my protests, and I guess since I could drive, walk, talk, and get dressed to show up at his office, I was “stable” in his twisted brain.
I stopped using the patches after 10 weeks, found a cash-pay only doctor who allowed me ONE of my medications, at $400 per visit. That was unsustainable, so I then did frantic research and learned about the Arizona Intractable pain law of 2022 and found a doctor in the Phoenix area, found a rental home, and paid for packers to come and pack and move us AGAIN. I am on an increased dose of that opioid pain medication now (but still under 50 MME – my usual dose had a 90-105 MME), plus Lyrica for crazy nerve pain and sensory disturbance below the knees (I could not tell the temperature of water with my feet and legs, and thought the hot tub was boiling hot, always had to check the temperature with my hands and then ease into the tub over a period of five minutes), a mild muscle relaxer, a heavier one for spasms or at bedtime if needed, and Naprosyn, but still no long-acting opioid. Under-medicated, miserable, had to stop my part-time job, file bankruptcy, and that’s OK with me because I need to stick closer to home as my mother is aging fast now, so I am not upset about not working at all, other than the fact that my credit is all FUBAR again, and that does limit the freedom that I have to do things when needed (like move across the country twice within one year).
My life as an intractable pain patient began in 2008, during diagnostic workup for the second radical surgery as treatment for scoliosis. I have a consult for a hardware revision surgery pending, and I have 18-level spinal fusion all bolted into the back of my pelvis, Harrington Rod implant, torsion rib cage hooks to counteract rotation, lumbar pedicle screw fixation L-1 through pelvis. (I also had facial bony deformity that caused my teeth to be set way back in my head with a protruding chin and an unaligned bite that was corrected with a difficult orthognathic surgery where they saw off the mandible (upper jaw) and reset it and screw it into position, and shorten the maxilla (jawbone) and reduce the chin size, after wearing braces for 6 years, but that it a side issue and is NOT my disabling condition or main pain generator).
The top-down level of control of pain medication distribution was so utterly locked down in Texas that I was treated like some recreational drug user instead of a person with daily, intractable pain who needed proper, appropriate, low-dose opioid pain relief in order to have any quality of life, or even the required level of functioning to survive. I was in the ER there in June 2022 for a completely different issue, and when reviewing my medications with the ER doctor, he looked at me like I was from MARS. Did I mention that all of this is VERY personal to me?
I’m convinced that Congress and certainly the DEA are getting their pain needs met without hesitation. Therefore, particularly those in Congress do not think there is any problem for the rest of us when it comes to getting necessary medication for chronic intractable pain. The DEA of course knows we’re not getting our medication because THEY are the reason we aren’t. As such, I propose that all of Congress and everyone in the DEA be required to have surprise urine testing done on a monthly basis. And since they work for us, these results should be made public. With the DEA seizing patient records when they raid doctor’s offices, they certainly have access to this information about US. We deserve to know the same about THEM.
I’ll be 70 in a few months, I’m widowed and living alone, and I have Ehlers-Danlos Syndrome as well as numerous other medical problems, AND the typical age-related pain issues. I had been stable in pain management until 2016 when my urine test showed low-level THC (I was using OTC LEGAL CBD oil which I had made my PM doctor aware of but the company had assured me that it did NOT contain THC). I was using it because my doctor had started to force-taper me. I was not allowed a re-test, I was automatically let go as a pain patient. It took nearly 3 years and 8 doctors before I finally found one who would even CONSIDER treating me. For 1 1/2 years he had me on medications that in the past had proven to be completely ineffective for me. Then he finally put me back on what I knew worked for me. Then at the start of 2023 my medication was on terminal back order. After 5 months on something that never had worked, my daughter went with me and my PM provider finally agreed to switch me to something else. However, he had me on such a low dose that it was impossible to know if the medication worked or if the dose was just too low. It took to January 2024 to convince him to raise my dose to an intelligent level. However, THAT medication is now on terminal back order. I was able to get my January prescription filled finally but had to drive 70 miles to the only pharmacy in Virginia that had it in stock. Going forward, I have no idea whether or not I’ll be able to get this medication at all ever again.
I now have high blood pressure and heart disease as well as metabolic disorder, all directly attributed to under treatment of my pain. I honestly do not believe that I’m going to survive this.
The DEA certainly knows the effect this is having on chronic pain patients, and I believe that many in Congress do as well. And they simply do not care that many of us have “unalived” ourselves, and many others are no longer able to function. I feel like I’m in a nightmare that I cannot wake up from. It’s cruel and barbaric.
Well said. Sadly, your story has become the norm..and they DO KNOW IT! What is happening seems to be “darker” than what it appears. Most of us with severe, intractable pain will not survive very long without adequate pain control. The zealots are now flooding media and medical journals with “opioids don’t work” nonsense and a new made up phenomenon of “OICP” or opioid induced chronic pain…claiming that it’s the medication that’s causing the pain. They’re milking this for profit, that’s a certainty…but what else is going on has yet to be confirmed.
I’m sorry you’re in this sinking boat with us. Congress has the life rafts but as you stated, since it’s not affecting them personally, it doesn’t matter. Today’s politicians are more corrupt than ever and they have forgotten about The People. They’ll only address issues that score large numbers of votes, issues that the media deems relevant.
My bet is that if they would acknowledge & propose solutions to our plight, they’d score our vote-which is not small-and many would happily cross party lines to give them that vote. Wake up, Congress! We The People are paying attention!
Perhaps it’s a way you save on what may of them refer to as “entitlement” programs…as we send endless amounts yo other countries. It’s nothing short of sickening.
Thank you, David!!! Accountability is long overdue!!!
As a fellow zebra and CPP this story is all too familiar. I hope you are able to make some headway with your Congressman…we HAVE to fight this. No matter how hard it is.