About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Sunday, February 10, 2013

How Pain Meds Work

Oh to be young and pain free...

With my Friday Tidbit post discussing fibromyalgia, there were three comments, all of which addressed very important points regarding pain medication and the unusual effects that these medications can have on different people.  It was interesting to see that all three readers who commented on the post stressed that pain management must be individualized and that there is no cookbook for it.  Yippee!  I was so happy to see that we all seem to be on the same page, so to speak: no rigid thinking and no one-size-fits-all approach. Hallelujah!  This was definitely music to my ears. (Excuse me while a shed a few tears that a) people are reading my blog; b) comments were made; and c) we are all basically on the same page!)  

However, there were a few points which I thought needed to be addressed and to answer them in the comments would be cumbersome as well as somewhat of a waste: these are points that I have wanted to address, or points I did address long ago, and deserve a second look, with this being a good chance to repeat some of them now.  See this link for one discussion, the "pain contract."

The first point I want to make has to do with my own experience.  Many years ago, my pain had become intolerable and the "gold standard" pain medications had no effect.  Fortunately, two things were on my side: first, my doctor had the insight and the courage to persevere and not give up on me.   

Second, he went so far as to admit me to the hospital to try to get the pain under control in a safe environment where I could be monitored.  That was a bold move even back then. Unfortunately, in today's state of medical care, this would be almost impossible, as I've stated in at least two posts in the past.  

As I wrote - and paraphrase to suit the subject at hand: 
My first GP, bless his heart, admitted me to the hospital (back in the late '80's) and was determined that "we" would find a pain med that actually works.... During that stay I was given a pump with a button to press every time I needed a hit of pain medication.  When the pain level was at least an 8, if I'm not mistaken, my finger would hit that sucker.  Though I didn't realize it at the time (how could I when I kept looking at walls and ceilings and wondering how I could pull off climbing them: desperate times and all!) the reading of how many times I hit that button showed how much the medication we were trying was actually working and when it looked like it was a no-go, we'd move on to the next med.  Morphine, as with every other pain med tried, made no difference. I was so afraid that there would be nothing that would help but my doctors kept reassuring me that something would be found.  And after about a week that "miracle" happened.  Once I was given Demerol, a medication I'd never even heard of at the time, MY magic bullet was found.

Yes, different pain medications were tried and were found to be totally ineffective, even morphine.  Now, understand that in the pain management field, morphine is considered the standard by which other pain meds are measured.  In fact, the term, "morphine equivalents," refers to the strength of different pain medications.  In my case, we discovered that the only medication at that time which could control my migraines (body migraines as well as head migraines) and my fibro pain was Demerol (generic name, "meperidine").  Unfortunately, many doctors and entire medical centers frown on the use of this medication yet it works for me and, without it, I would have even more problems functioning than I do already.  

Consequently, over the years I've often asked, what is the reason for this negative attitude toward meperidine?  Some pain specialists who keep opioids as options in their arsenal have told me it's because Demerol's by-product, normeperidine, has psycho-active properties. That is, it works on the brain and can change your mood. (Really? could have fooled me!)   Furthermore, in some cases, it can build up in the system and become toxic.  In taking this medication for at least 20 years, some years so bad that I would count every single pill every day, several times a day, other years when I was in better shape, needing the medication hardly at all, this has never happened with me.  I've never ever felt any "euphoria."   All I've ever felt with Demerol has been relief from pain that is worse than what I experienced when giving birth to three 10-lb babies, two of whom were "back labor."  Note: our Lamaze instructor said, "all bets are off if you go into 'back labor.'"  Aren't I the lucky gal?  

Considering how much help Demerol has been over the years (understatement!), I simply cannot understand why there is such a bias against this medication.  Perhaps it is because to treat patients with Demerol requires a great deal of skill - and TIME, which some doctors don't wish or can't afford to spend with their patients.  I am required to see my doctor each time I need a refill, which is essentially every month and each visit inevitably turns into at least a one-hour session of talk about just the most important things going on with me: there's never enough time for everything.  The question then becomes: how many doctors can afford such complicated cases as myself?  How many doctors are willing to take on such a time-consuming and headache-inducing patient such as myself? 

But getting back to the question of opioids, there's another issue at hand:  I personally have never experienced it, but there is a phenomenon called opioid-induced hyperalgesia.  This is where increasing doses of pain medication can actually cause increased pain instead of decreased pain.  The only way to know if someone is suffering from this problem is to cut the dose of the painkiller and observe what happens.  If the patient feels less pain after taking the decreased pain medication, then this is then an example of opioid-induced hyperalgesia.  Ideally, this should be done in a hospital where a patient can be monitored and protected.  Furthermore, we now know that there is more than one type of opioid receptor in the brain which may explain why some patients respond well to one type of pain med but not to another. (Another post, my lovelies, another post!)

All of this discussion about opioids is not just of theoretical interest.  As healthcare costs become more and more of an issue, there is a tendency on the part of 3rd-party payers to restrict the number of medications on their formularies, groups of medications that are "preferred" by the third-party payers. This is purely a financial ploy and not for legitimate medical reasons.  To make things even more confusing is that a patient may become tolerant to a particular painkiller and may need to be switched to a different painkiller for the pain to be brought under control.  This is known as "opioid rotation."

Therefore, as was the case with one commenter, the painkiller Vicodin (a combination of hydrocodone and tylenol) may not work to ease pain and may actually have caused the pain to increase.  This is a classic example of opioid-induced hyperalgesia.  

Although the exact mechanism is not known, one may be able to speculate as to the reason.  For example, before medications come to market, they (obviously) need to be approved by the FDA.  The FDA reviews clinical trials where the medication was tested on thousands of patients.  Typically, these subjects are of European background with almost no Native Americans and other minority groups.  My rheumy/immunologist/pain specialist told me that whenever one of his patients has an unusual reaction to a medication or is extremely sensitive to even a small dose of medication, the search for non-European ancestry usually provides positive results.  Yes, we are very similar but we are also very different from each other.  Look at peanut butter, for heaven's sake!  It's part of the lunch of choice for most American children, but look at what can happen to that tiny fraction of children who are allergic to peanut butter!  Yet another example: I can't live without animal protein whereas my own mother cannot tolerate most animal protein. Just saying!  (Especially since my mom cannot understand nor accept the fact that I absolutely need animal protein, which she considers to be "poison" - and worse!)

Another commenter reported that after long-term use, the pain medication simply stopped working.  (I do love the comments!  Thanks!)  

Likely, this is an example of "opioid tolerance."  Instead of giving up on the painkillers altogether,  the doctor might want to try rotating the pain medications.  So, for example, if hydrocodone stops working, perhaps a med like oxycodone (in Percocet) or hydro-morphone (Dilaudid) might be effective.  It's important to note (I'm so tempted to put this all into bold capital letters but will restrain myself): when a patient claims that the pain medications stop working that does not mean he/she is drug-seeking or has a psychiatric problem.  It is most likely that he/she may have simply become tolerant to that medication and needs to have his/her situation re-evaluated.  

Pain management is complicated and simple, all at the same time.  It's complicated because there IS no one-size-fits-all and it is a very time-intensive type of care for the physician.  I know that I'm biased.  However, not allowing a patient to be hospitalized in order to find the right medications that actually works is frankly insane and criminal in my book.  When I was hospitalized in order to find the right "pain med" back in the late '80's, it was a very gutsy move, though in the long-run it helped lower my hospitalization bills to my insurance company.  It took only a week, perhaps less, to find the pain medication that worked for me.  As I've stated in other posts, today to find the right medication would take months because the patient needs to keep running back and forth to the doctor's office.  

Furthermore, in giving me the medication through an IV pump, we could go through the various medications at a faster rate: if it didn't work within 8-12 hours, it was on to the next med.  In pill form, you'd need days to establish what worked and what didn't and you'd also need to take so many other factors into the equation: were toddlers at home throwing off results?  Were running errands factored into the medication not working? Was the music from your neighbor's house driving you nuts and thus perhaps throwing things off? (JOKE?)  I mean the list is literally quite endless.  And once we hit the right med, again, it saved the insurance company a lot of money because I had fewer hospitalizations.  In other words, everyone won.  Ok, back to topic at hand.... I do tend to get carried away, I KNOW!  Imagine how much the doctor vetting this piece is loving my asides!  (What?  You thought I would just throw this info out into the world without having all this stuff vetted?  I may only be a blogger, but I'm trying to be as responsible as possible!)

On the other hand, pain management is a relatively easy field in that so much is known about the way many of these pain medications do work.  For example, one area that we know a little bit about is: why does codeine not work at all for some patients?  Codeine's a pretty powerful pain med and yet some patients say that simple Tylenol helps more than the schedule 3 codeine. What's up with that?

It turns out that codeine is not active on its own but rather needs to get changed to morphine in the body for it to be effective.  About a tenth of the population lacks this conversion ability due to a particular gene not being present.  How many doctors know this?  It's hard to say.  The literature is out there but not all doctors keep up with it, due to many reasons, including the time-factor or specialization factor.  This is precisely why I think that if you have a real pain problem that is (almost) intolerable, it is wise to see an expert in the field. And might I add that if you're a praying type of person, pray for that doctor with your whole heart and soul because they ARE difficult to find!  My GP, etc, all take up quite a bit of my prayer allotment time! I do NOT want to have to start finding a new doctor when my almost-retirement age docs start closing their practices! Talk about the stuff of nightmares...

Pain management:  there is so much more to know and to be uncovered in this complicated and fascinating field of study.  

This is, at the very least, only one aspect of pain management and the way pain meds work.  I'd like to get into much more, but it's simply too much for a single post and will be addressed in a future one.  Therefore, as they say, stay tuned!

With that, as always, I hope all are feeling their best, only better.  Ciao and paka!

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  1. Great post! As always, you have a real in-depth insight on so many things about pain. No wonder though, considering how long you've been dealing with it :(

    I've only been dealing with acute pain for the last few years. Though I've had chronic pain that I managed with OTC meds for 15 some years. That was something that just was the way it was. A good example of how we put up with things and increase our tolerance to pain.

    The point I'm trying to make there is that it seems "natural" for us to just deal with increasing amounts of pain. Yet it is completely unnatural to me that we should even have to. Let alone the fact it just happens anyway lol

    In my opinion, the only reason why doctors and The Powers That Be bitch and moan about narcotics and opioids is because of accountability. Who's ass is on the line and how can we (The Powers That Be) protect our asses from liability? They quote pumped up stats to support their stance when all they care about is money and liability.

    I think is is well about time for The Powers That Be to actually BE accountable for the travesty they have laid at the feet of all chronic pain sufferers.

    I'd love to slap a negligence suit on all doctors who refuse patients access to pain relief medication. It's a lot more of an issue than people think.

    I'd also love to see the health care workers who slander and label chronic pain patients be penalized for it. Why should we constantly have to "prove" that we are really in pain to each and every person who is remotely responsible for our care? We have enough to deal with already thank you very much!

    One can only hope that voices like yours and mine will eventually be heard/read online. That eventually we will be taken seriously and that one day we will truly get the care we deserve.

    Light and love :)

    1. From your mouth to God's ears, as they say. Good going, Shannon. xx

  2. Amazing post! I'm a new fan and am on 185 morphine equivalents of pain medication each day while still rocking quite a bit of pain each day. Additionally, I have an SCS TO DEAL WITH nerve pain in my legs from failed back surgery. Anyway, thanks so much for such a comprehensive post. I'm looking forward to many, many more.

    1. Has your doctor tried the anti-convulsant or anti-depressant families since the opioid medications may not be the best choice for the nerve pain? That's not to say you should stop taking the opioids. Your doctor may want to add a member of another medicine "family" to what you're taking now.
      I do so hope that this helps! xx