That sent me down a scary rabbit hole. If OIH expression isn’t as frequent as believed and the patients misdiagnosed are being treated in a way that’s contraindicated that’s not good news for the patients.
What to do about such a thing?
Sorry in my glee that you found the study I missed the question re: solutions.
Buckle up it's a long one! I am so disgusted with our "health care" aside from acute emergent needs it is most typical to see your doc and leave w / script. Pain meds aside, & we are blasted with ads in the US, describing varied symptoms leading us to just request medication X medication directly from our docs.
What needs to happen based on my experience is really a political solution, not one I think to happen in my or even unborn grandchildren's lives. When there exists a 2:1 Pharma Lobbyist to State Senators and corporations have more rights than citizens I see little chance for progress.
Cash creates legislation which is why I make my small donation to NORML as possible. It has only been through activist & lobbyists that MMJ legislation has come as far as it is. But still not federal WTF? In addition to paid lobbyists grass roots movements & demonstrations by citizens.
I am officially on AARP radar a few years now, as such don't have time or energy to start something. But for those of us struggling with chronic pain of any type my experience is this. Change in diet whole food and organic as possible, to deal with existing aches and chronic pain the only thing I see is lifestyle change. Diet, Exercise, Stretching, & Yoga has been especially helpful. I do not mean exercise in form of physical therapy either, working with a good trainer, yoga & perhaps pilates. Basically someone to assure correct form and what you should experience in a given stretch or exercise.
Cannabis no doubt helps me most times tune in to muscle groups I am trying to either activate or stretch. Ironically I worked with a trainer a bit who was more helpful than the physical therapy mills I have tried. Anyway early on I asked his opinion if vaping before training would impede our work. Turns out he suffered shoulder injury & said he really felt cannabis gave him similar focus / awareness of his muscles during training. As I got to know him he tended to imbibe a bit much, after I was able to tune more into him I saw how forgetful he would be training me!
As he is trying to start his own practice as a trainer, I suggested minimally a mint or gum before meeting clients that perhaps don't appreciate the benefits especially in their fitness trainer! Turns out he also struggles with opiods but appears not to be having success or motivation to get off at this time. But as usual I digress...
The biggest take away I have is when anyone has used prescription or illicit opiods for pain at least if they are like me, we tend to take enough so that the pain is prctically non existent while on the meds. I would tell my doc pain level was always a 2 of 10 when taking meds. W/O them I would most likely not have even been able to walk. Arthritis & Patellar Femoral Syndrome just killed me.
At my final in office visit with my orthopedic surgeon like the day or two before my scheduled Hip replacement # 2 my knees hurt so badly I asked if maybe we should try an alternative. I don't recall the reply but paraphrasing he said well the new hip may help resolve the knee issues...NOT.
Total hip replacement was the early days of pain Mgt Practices & Oxycodone was the staple with breakthrough Percocet (Oxycodone w / Tylenol) or initially hydrocodone w / percocet x 4 daily. After my 1st Total hip the surgeon stated no car rides for like 6 weeks. I didn't have enough pain meds at home & he wouldn't write a script. The first total hip was absolutely a horror show. I was in so much pain I recall the surgeon and pain mgt doc debating what they could increase my morphine does to. This was maybe year 2000 or 2001, imagine being in the hospital bed and requesting pain meds, nurses saying the doc must order it.
This pain doc certainly was new my surgeon was fearful & rightfully so that I not go into respiratory depression and die!
But the process of MD's becoming a "specialist" is pretty minimal. I think at least some states it requires like an 8 hour training, most likely done online. You know it's basically an open book test, if there is even a test. Sometimes just attending the training and you're off as a new Cannabis Doc, Pain. Sleep Specialist etc. That first pain mgt doc from the hospital did not even write a decent sized script for me to make the required 6 week ordered no travel rule imposed by my ortho surgeon. So I call the pain dude he says sure c'mon down, & I say I am not allowed to be in a car for 6 weeks...
I think he called in clonodine and I had some leftover hydrocodone a few percocet & a few 20 mg Oxycontins. At that time I was maybe 40 mg oxy daily with 7.5 or 5 mg Hydro's or percs. He could have called in Hydrocodone not Percocet silly DEA rules again. But he would not call in any pain meds w/o in person visit. So I had a pretty fast taper with only the few remaining pills & clonodine. Clonodine is extremely helpful and as I was what I considered fairly low doses it was not the worst thing.
The takeaway is Doc A may have a "specialty" in whatever but what does that exactly mean. None of 3-4 pain mgt docs really have a clue about weaning. My last hopefully pain doc somehow believed morphine & oxycontin were equal pain relief per milligram. Well a quick search on the web show an ignorant patient that oxy is at least 1.5 -2 x stronger than morphine. If you go back and report such you begin to be labelled as a drug seeker. In a sense that was true for me, I wanted to be out of pain, I wanted a semblance of normal life so I sought increased doses, the euphoria was an added boost for motivation, but I did need the meds to function with minimal impact on my physical life.
Maybe 5- 6 years in as my dosages were increasing after scores of injections I tried arthroscopy to cleanup debris and torn edges of cartilage, I was able to wean down from maybe 100 mg Oxy daily to just 2 perocet 20 mg day total for a while. Don't recall how long before I needed to increase doses again, ultimately I was on my highest dose daily about 200 mgs Oxycontin daily. Some days were better so I took less but took more on worse days. The pain docs just followed what the drug companies recommended when prescribing.
Another thing I learned in hindsight after that scope was done I was on my normal doses of meds which really numbed the pain and since I did not really feel the amount of pain my body was inconsequentially I did some things theat probably irritated the joints. I ended up in surgeons office at least 3 x to have fluid drained because the swelling got so bad. Did I mention my ADHD not easy for me to sit still and I had things to do that I probably should have let be. Were I on a lower dose at least experiencing more of the real pain perhaps I could have learned lessons sooner about how to rehab myself.
Then post withdrawal I was off pain meds for a bit, but 2nd hip was still very painful so maybe 5-7 months back to surgeon & pain mgt. doc post 2nd THR . I changed pain docs the one I was seeing felt like a Florida Pill Mill all the pill ppl lined up monthly BTW, doc would see you 5-10 mins get scripts & off to pharmacy. At least my new doc was willing to spend time with me and entertain options. One example is first hip was always getting n painful spasm and my attempts stretching provided minimal relief. So he mentioned Botox this after probably 6 + steroid injections and the lube stuff etc. Well Botox worked but only for maybe 6 months maybe longer. I had to buy the Botox as insurance would not cover the med just the procedure. That was $500 a vial. And he only used half so I took remained home to freeze. That only last 6 months so ended up in trash. If any of these doctors had a more didactic holistic type approach they could have driven home the point that there were options to PT like yoga & good trainers to possibly target the troubled areas.
When I started increasing my dosages I always kept asking about any new options, I tried nerve blocks, steroid injections, the "lube stuff they shoot into the joints" you name it I would try it just to not have to increase pain meds or have surgery. Oh yeah and many trips for PT, the physical therapy today is so different than the first time I had it in my late teens or early 20's. I worked individually wit the same PT and 100 % focus was on me so he would guide me what I was working and should feel. Today typically even solo practices have several pts going at once they bounce from cube to cube instructing you. At least in the in the US.
FF about 12+ yrs I could not take anymore higher does of pills my preference & doc's resistance & I got a beefier heath care plan, waited until that was almost do to end & scheduled bi-lateral TKR. If you can't tell I tend to research the hell out of medical procedures. Unfortunately I relied on my earlier Hip Replacement experience and research I trusted my cocky surgeon's opinion that as the Rolling Stones put it "all I had to do was send x dollars to the "church of the sacred heart of Jesus & all my dreams would come true, so I did" But.. unlike the song next week I got an appt for my surgery and horrors began. I did not research TKR much because he assured me the newer polymers last so much longer yadiyada... I am self employed and wanted to minimize time out of work, that turned out a bad plan.
I forgot to mention that since this nightmare post knee replacements I have done massive research re: TKR and found as many as 10-20% of those getting the surgery are not happy actually usually they are absolutely miserable! My fault for not digging more I listened to the Preacher (Ortho Suregon) remember the Stones " All my dreams would come true" I had Bakers Cysts, osteo arthritis I think, who knows may very well been something else. But I can't unring that bell now.
So just based on my personal journey & years of working with addicts before buying what I strongly believe for anyone being told the suffer from OIH assuming they can achieve very minimal to zero pain while on the opiods is to begin to wean down. Maybe not tell your doc you are doing so in this current climate, you may need to have a partner / spouse or family member hold your meds.
Next step is to get to a point that you can begin to become aware of the muscle groups that need either balancing or strengthening etc. & begin to either do DIY yoga on youtube or other sources. My recommendation is Yoga with Adrienne (SP?) she really helps me tune in emotionally and relax. In my case I actually sobbed & probably will more during sessions. I have come out of bad knee replacements & caring for a terminally ill relative almost immediately after my surgery. The yoga poses and coaching from her attuned me to the amount of stress I carry daily. sobbing is an appropriate response, it produces endorphins & enkephalins which lest you know are our own bodies produce which bind to our oipiod receptors. That's why intense exercise produces "runner's high" exercise it usually the last thing I want to do when my joints hurt but does help.
We were in serious denial of how bad her cancer was, it had to be metastasizing to her brain, it got to the point the visiting nurse left pain medication & I think liquid morphine. Her pain became unmanageable & they put her in the hospital to try to stabilize it they said over the weekend...that was the last time she left our home. Passed within 4 weeks after. Meanwhile I was asking Medicare for a second oxygen unit for when she could come downstairs. I think she maybe came down twice after that. The nurse told us "she is dying" like imminently very straight forward. I sadly kinda blew her opinion off (denial again) she called the oncologist & got the order so nursing care could at least come daily. The doc was literally on the phone saying what do you mean she is my star patient.
That was 2 or 3 lobectomies & several chemo treatments later BTW. So there was I guess a fast progression that even surprised him. But looking back after realizing there had been really strange behavior happening for a few months. I was so grateful she had friends that would visit. Well mostly grateful, I hated the disruption with my dog and I was nothing more than a lump on the couch at that time. So my long winded point is trauma death and dying, surgery less than successful, chronic pain can put us in a place that we really do not see the proverbial writing on the wall that a 6 year old would see.
It is gradual as was my increase in pain meds, 40 mg not working up it, until I thought the side effects outweighed the benefits. Along the path however when I was effectively numbing the pain I led a fairly active lifestyle summers I would mountain bike up 3 + hours, cut my lawn etc. push mower, do basic home maintenance. Had I listened to the pain rather than turn it off, & spent time god the time spent now attempting to heal myself is incredible. If I slowed down & tried diet change learned how to balance muscle groups,maybe done yoga. Also maybe tried cannabis my journey would have been different.
For these reasons I really encourage anyone trying to get off opiods for pain, please taper as much as tolerable & explore some of the options to try to heal yourself. It beats surgery & certainly will enhance your life 100 fold! We have to be our own health care advocates, the medical community for the most part are a surgical & medication machine. I hope I have at least organised enough for some kind of guide for chronic pain ppl here. Just medicating to reduce is not the best solution, less is typically more in this situation. I firmly believe with the right exercises and diets many of our issues can be severely improved and dare I say cured permanently.
It's BIG business, through all this convalescing I watched probably more documentaries than most humans will see in their lifetime! The first to really wake me up I think was Forks Over Knives, which for anyone unaware is based on "The China Study book" which is the longest and most comprehensive long term health study. I forget why Emperor whoever started it, but it was because either he became ill or increased population death spikes.
Excerpt from the website:
The major story line traces the personal journeys of Dr. T. Colin Campbell ( who by the way grew up on a dairy farm), a nutritional biochemist from Cornell University, and Dr. Caldwell Esselstyn, a former top surgeon at the world-renowned Cleveland Clinic. On separate paths, their discoveries and groundbreaking research led them to the same startling conclusion: Chronic diseases including heart disease and type 2 diabetes can almost always be prevented—and in many cases reversed—by adopting a whole-food, plant-based diet.
I believe it was around the 70's the US Gov't commissioned a study for dietary recommendations & it was not the pyramid I grew up on. I forgot the politician it was named after but a name those us not as spry as we may have been will remember. Guess what at least according to this and at least one other book or doc I have seen report that the Dairy and Beef Lobbies had major impact in the new FDA recommendations. It is really a good read The China Study or do the Forks over Knives doc it's no longer free on maybe their site I believe YouTube as well. Worst case Netflix or Amazon should have it. Or rent for $2.99. That is just one doc about effects of processed foods and their associated chronic illnesses.
The biggest impact on me was this doc asks for some patients to perform a study on cardiac patients. He ends up with the worst of the worst ppl that at least one was told just go home and sit. Basically just wait to die, I am pretty certain all patients not only don't die they reverse heart disease.
Just changing to whole food vegan diet I lost over 50 lbs came off 10+ years of blood pressure meds. I remember my history teacher discussing earlier cultures think Kings and Dictators she said the rich ate the best fattiest parts of the meat and the poor ate little and much less fatty meats. This led to the wealthy often dying much sooner than their impoverished counterparts.
I tried to find a link for the study the Dairy & Beef Corps suppressed & pushed changes to keep us eating their products but found a similar one here from Minnesota:
Raw data from a 40-year-old study raises new questions about fats
One big thing about oils Olive and others high in linoleic (SP?) acids are the really beneficial oils to prevent many diseases. Same history teacher explained the changes in the industrial age in the US where it took a while for us to figure out that all the "new" processed grains mostly rice and flower had been stripped of most of the nutrients so they had to "enrich" those products to stop a rash of malnutrition disease. That means if you are a white rice eater and it doesn't say enriched they haven't sprayed on the B vitamins stripped away. Check the nutrition info see if any B vitamins if not its mostly empty carbs, I think all white flower has added vitamins.
The website somewhere mentions food as medicine, sounds kinda familiar to MMJ & other herbal possibilities. Corporations can't patent plants, so they isolate molecules & sell Sativex or Marinol. We really have to be our best advocates & numbing the pain IMHO is rarely a cure. Unless terminally ill reduce pain meds including MMJ if it numbs the pain. We tend to live an extremely stressful lifestyle for the most part, I only even gained awareness of how whacked health care is until I was knocked flat on my ass for quite a while maybe as long as 12 months.
Now wouldn't it be awesome if we had a proactive real "Wellness Care System" that really addresses many underlying causes of our woes. There have been a few times in my life that I allowed myself to slow down enough to realize I was on a hamster wheel. That nature to return to what we know is typical human nature, that's why meditation is called "practice" it's freakin' work to shut up and listen. Be that our sore body or emotional stress or trauma that makes us turn to medicate somehow. We have been conditioned to it, I didn't realize the programming we get until I started to learn marketing for my own business. Compounded with some clinical training in my former life as a counselor I so get it. Most of us will not realize much of this until like me we are playing the back 9. Too busy having kids, succeeding just pick something.
Going vegan / whole foods is a bigger challenge for my partner who is a bit of a sugar fiend who also has been conditioned to having to eat protein which is code for meat and dairy. I said everything we are eating if whole food has some protein, but it was beaten into our heads if not meat it's incomplete protein. So it is about progress not perfection. But i have seen enough science and my own experience with BP meds that I am convinced it is one of the first steps toward health. The other thing about those less affluent in the dark and middle ages was they did manual labor & probably lots of it!
Everyone wants our hard earned cash & they don't really care about us much. It's human nature to want to succeed and get instant gratification or relief. We are very efficient in how we try to process info & our daily tasks at last I recall it only takes 21-30 days to develop a habit. That breaks down to repeating a behavior or thought pattern which we then kinda program to the un or subconscious part of our brain. So we keep the belief or behaviors at such a time it becomes more challenging to alter it. Just think about nail biting and how difficult it can be to stop doing it. If you got more of a chemical, emotional, or financial reward in addition it becomes almost exponentially more difficult to change a habit.
Convenience foods and snacks today are manufactured with perfect proportions of salt, fat, sugar etc. these hit our pleasure centers as well. Not to the degree the tobacco industry has engineered additional adulterants to make cigarettes even more addictive. Just remember P.T Barnum I think said it best, "There's a sucker born every minute."
Our old pal Sigmund Freud's son became the latest incarnate working with advertisers how to condition the masses to buy product x y or z. One quote was he stated he can make ppl do anything he wanted because it will be their choice! The methods used in marketing encouraging mas consumption are extremely effective. Corporations spend billions researching how to best influence us.
It begins at an early age as kids we see an ad or commercial for a toy and now we gotta have it, usually the toys fell way short of the promise in my experience. Well look into how drug studies are done, this is one of the biggest shell games I have ever heard of. I thought medical studies really meant something. Basically they just have to show a margin of safety acceptable side effects & efficacy that the drug works for illness "X". Well studies are far from equal and like Tobacco if there is info contrary to their goals well they go to some dark cabinet not to be seen again.
If you are not aware recently I think Bush 1 administration removed regulatory controls & many drug companies almost overnight just raised prices sometimes to insane amounts. In the US Medicare pays the prices which mean our taxes increase, private insurance stays on scale with the Medicaid rates so we just pay higher and higher premiums for less coverage. And they are always increasing earnings, again I think little to no regulations on cost to consumers.
I have no health insurance presently last cost was $33,000 annual for my spouse and I.
We are I believe one of two countries that allow drug companies to directly advertise to consumers on the planet. We also I think are 5% of the total populous and use like 80-90% of all opiods produced. Also we use tons of antibiotics that no where I am aware of allows. The trend is less today but over prescribing according to those smarter than I have created the super bugs which is why they try to talk you out of them for a cold today.
The biggest reason I turned to cannabis use is it is natural and we have a clue about the ECS and it's impact on health. That falls in line for me with looking at how to best care for my own well being, beyond " eating a balanced FDA diet and exercise" When I started BP meds I said to my doc well if I lose wieght and exercise more I cna probably get off right. He said, That's possible but unlikely, genetics BS yadiyadda!
So to try to keep on topic another great resource is Dr. Sulak Healer - Medical Cannabis (Medical Marijuana) Information from Dr. Sulak he is big on body mind awareness especially re: MMJ. I use the 2 day T-Break every so often to minimize need to just keep upping my intake of MMJ. There just are no short cuts, lifestyle changes make a huge difference. The struggle especially for chronic opiod use & pain is to tune in to our body and minds. He has some really good videos and self checklists. But it requires time and effort. Not my strong suits oh yeah and you have to fight through the depression and other emotional physical discomforts along the way.
Anyway I hope that answers some of a plan, I was going to edit some of the lengthier parts but,for one it's kind of cathartic, two I dosed a bit of GreenDragon & am a bit hyper focused. I am an adult ADHD'r too so maybe if there are some useful things we can build into some suggestions for oipiod tapering, I know because I had such relief I most likely overdid things after surgery. If I had not become ignorant of how other muscle groups compensate for the weaker ones etc. maybe I would be in a better state now. Time will tell, but I am at least 60% better than 18 months ago today. The hardest part is finding and keeping the motivation and a positive mind frame. Very difficult when coming through a PTSD type existence. I even feel a bit guilty describing my experience that way, that's what the stress and years of pills can do.
While not always the best pain reliever for me MMJ helps me slow the eff down in my head. Awareness increases tremendously for me. I will see where this journey ends & keep posting as able, and one day I will perfect my decarb to make some of these oils for longer term dosing with less psychoactive deterrents.
For now I look to taper Kratom provided I continue to avoid suboxone for at least a few more weeks if I can keep my current forward momentum. There is a quote in one of Kurt Vonnegut books he was a pretty depressed dude. Again I paraphrase: He stated he doesn't what "Real Love" is, the closest he could describe was rolling around on the floor with his dog! I so get it, to me it means more about being in the moment, closest I get is taking my dog to the park and running him, he's pretty small so he more hops than runs. People must think me a bit off cuz I talk my head off to him as I typically am laughing the whole time. Of course mediation slows me to that point as MMJ but it's not the just a pure sense of joy when I am so tuned in to this creature who depends on me & it's more work meditating if I am honest!
There is a doc close to me that most likely costs way too much for regular consults but he owes me one free one. He swears food and lifestyle can reverse many of our chronic "western" illnesses. We need to get like minded medical professionals but somehow make it affordable for the average working populations. I am on board to help should anyone have some ideas.
Hope I am within forum guidelines but this is really the only comprehensive way for me to give just a slice of my journey.
Best to all & thanks Sue for the question. I just kind of threw up what may not feel like but is just a brief synopsis of what I have learned the past 3 years along with my decades of pain medication marketing treatments. I beg anyone suffering with chronic pain to seriously explore some of the resources and options I have mentioned. Once I started scouring the net I was able to find a tidbit here and there since I would say the past 12 months especially I have reduced my pain and pain meds.
If I can continue to progress I will get rid of the other prescriptions & hope to study herbalist methodology. Before when I had upset stomach I would grab antacid or anti gas pills, now fresh ginger sucked on I find probably works at least 2 x better and has anti inflammatory benefits as well. I also literally dump Turmeric into any dish I make, one good thing about vegan diet most of what I cook are one or two pot meals. We also discovered one night I was in too much pain so I just did a rough chop of the ginger root and my partner said what is this ginger? Yep I said sorry I could not mince tonight, well now larger chunks are staple because we just love the taste so much!
best to all!