Opioids Bad reaction to Opioids for chronic pain after many years of exposure

[pgrovetom]

Sorry in advance for the long but abbreviated story:

I was in a motorcycle accident and broke my neck and did significant damage to my spine. It resulted in chronic pain which would become severe if I accidentally or inadvertently strained my back. Initially I was prescribed hydrocodone and or oxycodone. I became dependent/addicted and even during good periods for my back and was unable to stop. I saw a pain/addiction specialist who put me on buprenorphine and I was able to raise and lower my dosage as needed but didn't have the "need for opiates feeling" so it worked well. When the pain became bad, I would increase the dose until the pain was controlled and then taper down as it seemed better. I fully tapered off the buprenorphine a few times so I could see if it was possible. That made me comfortable taking it long term. I did this for about 15 years as my spine actually got worse due to degeneration and aging. I had about 3-4 breaks when I fully tapered off for a few months each during this time. I did this by slowly reducing the dose weekly in increments such as 2 mg -> 1.5 -> 1 -> .75 ->.5 ->.25 -> .2....... stop

About a year ago I began to notice my muscles and joints were painful and it began in my hips, moved to my shoulders, then my torso, then arms and legs. It moved through my body like an infection so I saw numerous doctors who all had no idea what was going on. My muscle enzymes called CK and my kidney creatinine were always high. I also began to notice my lungs wheezing and filling with fluid at times. This sent me to the ER a few times due to breathing difficulties.

But not one of a dozen doctors from 3 major well known university class and multiple specialties had any idea about the pain or lung problem and just sent me away. It was worsening once it spread to my full body and I began to suspect the buprenorphine as it seemed to worsening as the buprenorphine was wearing off. My suspicion led me to tell the pain doctor who prescribed it and he wouldn't consider the buprenorphine being responsible. I began to insist on finding a way to stop the buprenorphine to test if it was the cause. He said I would just have to taper off over a month or so. I began to taper from 2 mg and the pain was killing me so I just stopped. I went through about 5 days of withdrawal with medication help and I began to notice the pain lessening. Over a few months it slowly went away. It seemed like it was probably the cause but I wasn't 100% sure. I wondered and worried if it was just buprenorphine or all opioid drugs?

After about 4 months off the buprenorphine, I injured my back and couldn't even walk. So my PCP gave me Hydrocodone to get through it and set up an epidural appointment but 5 weeks out. After about 2 weeks, the full body muscle and joint pain came back with a vengeance just as with the buprenorphine. I also began having the lung fluid problem again. I noticed the lung and body pain seemed to get worse if I ate food that raised my blood glucose. So I avoided them. It seemed that the pain and lung problems might be related to how the opioid was affecting my glucose metabolism which is critical to all cells and especially muscle and similar high energy usage tissues. My PCP switched me to Oxycodone to see if it helped and it too caused the pain and lung problems. I wasn't 100% sure the cause was the opioids or if they were aggravating some other problem related to glucose utilization in my muscle, tendon and lung tissue mitochondria. I had other testing that showed a mitochondrial problem but no doctor connected it with this as an opioid drug side affect.

So I now suspected I could never take any opioid medication without this rather severe muscle/joint/tendon/lung problem. So I quit the Oxycodone after 15 years of buprenorphine with a few months break followed by a few months of Hydrocodone and Oxycodone. I had modest withdrawal which lasted 3-4 days with the help of aleve, tylenol, clonidine, lorazapam, mirapex ( pramipexole ) and gabapentin. It wasn't that bad but I still have depression and restless leg probably from a dopamine deficiency. The mirapex controls the RLS but the depression is quite severe and my body feels like I don't even want to move and it takes hours to wake up.

Sorry about the long story. Now my questions:

Has anyone else experienced developing a reaction to any opioid that affects and causes near full body pain in all ones muscles, joints and tendons and causes fluid to cause ling wheezing ( like Asthma ) and fluid buildup in my lungs that makes it hard to breath? I had to get a nebulizer to control it. I wonder if this is permanent or will adjust away once off opioids for months or years. What if I need pain medication in a real emergency or surgery?

Does anyone know how to manage the dopamine deficiency depression and how long it might take to re-adjust? Diet, supplements ( L-tyrosine) or anti-depressants such as bupropion or selegeline that help increase dopamine? Or will they cause more problems?

thanks for any ideas, comments or help!

T

 

[Jekyl Anhydride]

Hi Tom and Welcome to BL,

I really liked your non narcotic WD comfort med list from the other thread btw, esp the NMDAr Antagonists.

I've heard of people having immediate reactions to opioids that was somewhat localized in the abdomen, but a slower build seems to open up even more possibilities. The CK/CPK-MB test connection is even more puzzling, a dozen doctors you say? Damn.
ime brief kidney troubles from opioids have been an issue causing a little bit of peripheral edema but nothing like pulmonary edema. Hopefully someone who has had a similar experience will come along soon.

As far as the PAWS or post acute WD syndrome that comes along there's just too much to list, but after 15 years I can only imagine that it's going to be an issue. I'm not crazy about MAOi's or Wellbutrin but if that's what it ultimately takes I can't knock it. I like the ideas of going with supplements first but have never found a foolproof method that works for everybody. I can say it slowly subsides but can't give a specific time with 15 years use, I can say that 6-18 months seems to be on par with some long term methadone users I've known. Our search engine or google and paws + bluelight will bring up a healthy list though.

Sure hope you get to the bottom of this one way or another, please keep up posted.

 

[pgrovetom]

Thanks

That list was a combination of what I read and what I was doing and looking for good options I could investigate. The reason for the NMDA antagonists is I couldn't help but wonder if I was experiencing what is known as hyper-analgesia where opioids begin to increase pain due to a shift in pain sensitivity. Both the back and body pain both became unbearable as the opioid wore off. If I took a pill before bed at 11PM, at around 3-4AM I would awake in agony with my large joints in my hips, shoulders and knees with the worst pain. I discovered that if I got out of bed and power walked around my home for 10 minutes and got back in bed, the pain would drop from an 8-9 to a 3-4. I couldn't figure out if it was tied to just awakening or if the walking caused increased blood flow and my liver removed a toxin buildup in my joints/muscles due to slow metabolism sleeping. I thought this because I was able to convince myself that my blood glucose level definitely increased the pain and lung problem. After avoiding carbs and sugar carefully I could lessen the symptoms. Then if I tested my theory by eating some sugar cookies, the pain and lung fluid would rise rapidly and in 30 minutes they would peak.

This was less if I was active and worse if laying down. Now that I'm off any opioid, the night pain is far less and feels more like damage caused by the earlier trauma. I can eat carbs and a little sugar and nothing happens. If I over do it, I get some wheezing so there is a long lasting lesser affect but it seems much better. Still not 100% sure the opioid wasn't aggravating an existing problem or was the original cause and now I have some left over damage in my muscles, tendons and joints. I'm going to check my CK, creatinine and myoglobin next week and see if they are normal.

I was also suspicious of an infection because I have Eosinophilia ( up to 30%) and very high total IgE ( 500-1200) suggesting my TH2 immune system thinks there is some offending substance or organism not yet detected. I'll also being checking those as it could be a response to the opioids but all the types I've tried have very different molecules and metabolites. Hard to believe the immune system and IgE would align with them all especially since some I only tried briefly. I've been to the Mayo Clinic in Rochester, UCSF in SF and Stanford and seen about 20 specialists covering just about every category from Neurology, Muscle Neurology, Pulmonology, Nephrology, and Infectious Disease, Allergy and Rheumatology at all three.

Not one doctor took my concern about the buprenorphine seriously including the pain specialist. It was nuts. I was the one who said I think its a problem and had to withdraw on my own. All this happened before my recent back injury so only my PCP knows the part of the story where it seems like ALL opioids and stopping has such a dramatic affect.

I decided to post on bluelight because its many users have far more experience in odd affects of drugs than these silly doctors and I'm wondering if anyone else encountered something like this or am I unique or does my "other cause" being aggravating have merit.

Another doctor I saw thought I might have a full body yeast infection because of the glucose response and some other things so put me on Voriconazole, a powerful anti-fungal. It too stopped the lung fluid but I didn't notice much impact on the muscle/joint pain but there are so many factors its hard to know. I wonder if its related to its co-usage of liver enzymes and opioid metabolism. Its possible but unlikely I do have a yeast growing in my body ( I've tested positive if trusted) and for some odd reason, it plus the opioid are somehow interfering with my mitochondrial utilization of glucose resulting in mitochondrial problems and a toxic buildup and pain.

That's an alternative theory but I'm hoping its just that the opioid has pushed my metabolic system out of balance and at the mitochondrial level its barely functioning. That in turn is causing the inability of the mitochondria to utilize excess glucose as I have awful fatigue a was diagnosed with CFS/ME ( wrong) and metabolomic testing showed some serious metabolic problems that implicated the mitochondria. But that could be the pure opioid or opioid aggravating the infection. None of the doctors except the metabolomics expert and a few alternative doctors would even listen to my theory and try and investigate.

Any ideas help or comments appreciated. Any questions too? thanks

 

[Patrickforsterter]

this happened to me but I realized I was taking to much and making myself sick so now I take my time and slowly stack my doses until I find that sweetspot. you may also just be to used to the drug and no longer get any positive effects if this is the case you will have to go cold turkey to feel anything you would be better of trying to quit and look for less addictive and safer pain methods in the mean time.

 

[Jekyl Anhydride]

Your lungs filled with fluid and you had terrible joint pain after using for awhile Patrick? Tell us more.

 

[checktest]

Baseless speculation ahead.

I'm guessing your doctors all did inflammatory polymyositis and stuff like that, and you are clearing the infectious route.

Given the eosinophilia, the properties of opioids as histamine releasers, and the allergic effects, maybe there is some sort of mast cell disorder, a systemic/pulmonary mastocytosis thing aggravated the opioids and/or specific food allergens.

Just a random thought.

 

[pgrovetom]

I'm guessing your doctors all did inflammatory polymyositis and stuff like that, and you are clearing the infectious route.

The rheumatologists and ID doctors from Mayo, Stanford, UCSF and one local considered all the forms of polymyositis but the lack of imflamatory indicators such as Sed Rate, CRP etc.. plus a lack of infectious indications in CBC and other immune system tests had them quickly rule out either an auto-immune or reactive (infectious) cause. My opinion is they were too quick to rule things out. I have seen doctors generally operate more like technicians following rules than scientists and engineers with imaginations and curiosity.

Given the eosinophilia, the properties of opioids as histamine releasers, and the allergic effects, maybe there is some sort of mast cell disorder, a systemic/pulmonary mastocytosis thing aggravated the opioids and/or specific food allergens.

What you are saying is quite general but you are in the right area of interest that no doctors felt like investigating. I appreciate that you have identified a legitimate possibility that's been partly investigated with an alternative doctor who showed some real intellectual curiosity. There did not seem to be any Mast Cell problems. The eosinophil pulses and high total IgE, high CK and creatinine seem to be the key markers. But hundreds of other blood tests showed no other consistent markers.

Just a random thought.

This problem is quite mysterious. As an engineer, I was quite surprised and distressed to discover doctors from such top institutions as Stanford, UCSF and the Mayo Clinic showed almost no imagination or curiosity given the odd nature of my problems and no competitive drive to solve a mystery their competition at the other institutions couldn't. They just didn't seem to care or show any intellectual curiosity. If the first round of tests didn't flag an answer, they just give up and say "Next patient". Its disheartening. I guess the curious people with imaginations who go to medical school mostly end up in research or working in big companies or start ups where they can play in the leading edge.

In medical school, doctors are taught the Zebra Principle. "When you hear hoofbeats, think of horses not zebras". Its related to Ocams Razor. The problem is that 10% of the cases are really Zebras. If you happen to be in the unusual category "a Zebra" and not a horse, they are taught its so unlikely don't bother to investigate. That really sucks if you fall into the medical "Zebra" category.

In my engineering life, when a problem baffled all the engineers around me, that caused most of us to want to find a solution even more. I've realized many if not most doctors ( not all) are like technicians who follow cook-book like problem solving with very little intellectual curiosity or drive to solve a mystery.

thanks for your random thoughts .... I'm hoping someone has seen this before.

I would prefer it was not a pure reaction to opioids but rather another condition that is being aggravted by the opioids.

 

[Patrickforsterter]

Your lungs filled with fluid and you had terrible joint pain after using for awhile Patrick? Tell us more.

eh? Sorry did I put that? It just have been a typo or something lol no I've never had pneumonia the only bad effects I mainly got was a feeling of restlessness or something I can't actually remember now I'm trying to I remember I stopped having the opposite reaction thing a few months ago it just sort of went away I had cut down a bit though.

 

[cdin]

I was hospitalized last year for 2 mos w severe injuries and infection. I have tapered myself off of all the pain meds and starting at the very end of my taper developed TERRIBLE spasm problems. Started in my shoulders, has moved to jaw and elsewhere. Keep taking opioids periodically to deal with pain but it seems like i'm stuck this way on or off them for the moment. Did find one thing that brought relief - TMS - transcranial magnetic stimulation, new FDA approved psychiatric treatment where they hit your brain with MRI strength magnetic pulses. Any other insight i would love to hear!