Extending the list to others in the field of pain advocacy and research
Professors and Doctors, and Medical Researchers (Please distribute this redacted version w/o names)
This is an email to my doctor who is wanting to taper me off all opioids because he thinks I have Opioid Induced Hyperalgesia, so sorry for the not introducing the topic part. If you feel like sharing my sitation with another others or first want more data, I can provide what I have. I agree one thing – I should not be having 9/10 pain on 50 ug/hr of fentanyl and 10 mg Percocets TID, but it is what it is. The question is -what is the cause and thus the right treatment? Would a spinal cord simulator at L4 or wherever the knee nerves emerge, solve all 4 root causes? Or would opioid rotation be your first choice to hit all possibilities? Share with anyone you like, for my life is on the line and I welcome all the help I can get. I hereby for HIPAA purposes in good mind and faith submit this to anyone you like.
No luck with RF ablation. I’m going out of my mind due to pain. During periods of decent analgesia, I have found 4 possible reasons for my predicament, and I have no clue which is right and if any treatment modality would help 2 or more or what testing might narrow it down.
- Opioid Induced Hyperalgesia – After long term opioid use, a person becomes more sensitive to less painful signals. The problem with this is that my pain is specific to the very targeted area of my knee medial meniscus. Improves with dose reduction.
- Opioid Tolerance – loss of analgesic efficacy over exposure to an opioid. Apparently this can happen to any opioid at any dose, and improves with dose escalation.
- Maladaptive neuroplasticity – the spinal cord “learns” a repeated pain signal sent over and over again.
- Central sensitization – the spinal cord becomes amplified much like maladaptive neuroplasticity.
I don’t know much about neuroscience, far less than you do, but it so it aeems that treatment needs to first figure out the right answer to 1-4 above, because for example 1) and 2) both suggest different dose strategies, though apparently opioid rotation treats both. I found one decent paper on hyperalgesia, but I have only scratched the surface. Do you know how to tell these apart? Here is what I know about each.
In January 2022, when swapped out Oxycontin for Fentanyl, for months my pain scores fell from7-9 to less than half or around 4-5. When my dose was increased for the trial of 4 percocets, the pain was a bit easier to manage, and at 3.5 its been a bit harder to manage, and at 3 even harder. When I say harder to manage, I mean its harder to catch pain at a 7 from going to a 9.5 with less medicine. While these changes are small as a percent of my dose, the though dose-equivalent MME switch from Oxycontin to Fentanyl both at 120 MME did give me a stronger opioid, and pain fell hard, just as you would expect with opioid tolerance.
OIH was new to me. I’ve asked professors, and I get mixed feedback. Some think it isn’t a real phenomena and said it was mostly due to intrathecal morphine pump users who when their doses were reduced, their pain improved.
Dr. C, the interventional pain guy who did my RF ablation, came up with number 3 on the list. He said over time, the nervous system becomes highly efficient at transmitting a pain signal over and over, but the rotation to fentanyl, even this was true, fixed the problem.
The fourth one came from Dr. B, but I found it in the literature. He said my specific type of spinal cord damage predisposed me to central sensitization, which he called “wind up phenomena” which I also found papers on.
I’m not being a whinny patient who wants more and more opioids. Yes the 4 Perocet was a band aide over the real problem. But which of the 4 reasons behind my severe knee pain escapes me, but I’m no MD. Dr. B did warn me about central sensitization long ago, and Dr.C pointed to number 3 on the list. In fact, since the swap to fentanyl worked for 3 if that is the culprit, opioid rotation should work for 1, 2 and 3. I deeply regret getting into this mess, and wish I never asked about my knees, but even Dr. J didn’t want to do a knee replacement before November 2021, and that is when I went to the head of orthopedics, Dr. R, who did my hip replacement in 1998 and got me in the clinical trial for the ceramic/ceramic hip, reportedly one of the top joint docs worldwide, and he told me no to knee replacement, so to check on his opinion I went to another medical univerisy orthopedics, who told me the same thing. They said I’d have just as much pain after surgery as before surgery, and that knees are not replaced due to pain, but due to mechanical issues like knees locking up or other such phenomena.
Filed under: General Problems
I know this patient and spoke with them yesterday. I suggest that all aspects causing their pain needs to be addressed by getting all the labs that Dr Tennant has listed on various websites. Inflammatory markers, hormones, cortisol etc.. Then find a dr who understands those issues and will work on getting all of those within proper ranges. I believe his pain will be reduced and pain meds will work more efficiently. Ask me how I know? Because I did exactly what I suggested and helped me alot. I would not be able to grow my own food and do my gardening with all my bodily systems out of wack. Meds can work better. Our bodies are complex machines. There’s more to pain control than just a pill to cover symptoms. Jmo.
Have you tried anti inflammatory OTC meds? My right knee is shot, have tri-compartmental OA meaning all three parts of the knee are bad. There is no cartilage, my patella is not where it’s supposed to be. I take the highest dose of a Tumeric-Curcumin combo I can find. Took a while to work however my knee pain is tolerable. Once in a blue moon if I twist it at an odd angle it feels like a knife is scraping the joint but overall when using heat, (ice and my body don’t like each other) the knee pain is okay not excruciating.