Pain and the lack of treatment thereof

I’ve had an epic rant on this topic brewing for years, but the CDC’s latest recommendations on the prescribing of opioid painkillers has finally given me the reason I needed to write the darn thing down.

See, here’s the thing: I think this country’s understanding of pain and approach to pain management is a clusterfuck of the highest order. And that’s me putting it nicely.

Dependence vs. addiction

I think the thing that makes me angriest when it comes to prescribing of painkillers in this country is the almost universal conflation of dependence and addiction. A great example of this is the TV series House. In the show, Greg House is constantly berated by everyone around him for being addicted to painkillers. Entire episodes are based around his terrible addiction to taking opioids and he’s pushed into rehab, arrested, etc.

Also in the show, a big deal is made out of the damage that occurred to House’s leg before the show started. He always walks with a cane and is frequently seen falling because the leg collapses under him. We’re even given occasional glimpses of the terrible scarring and missing chunks of the leg.

So…a reasonable human being might wonder if perhaps, just perhaps, Greg House might, I dunno, BE IN MASSIVE PAIN MUCH OF THE TIME? Just a thought.

And most of us, if we were in pain, would want to take something to make it stop hurting, yes? When we get a headache, we take medicine. For most of us, headaches go away in a few hours, so we only have to take one pill.

Unfortunately, House’s injury is not one that will heal completely and it’s not likely to stop being painful. So if he wants to not be in pain, he needs to keep taking the pills. This is dependence. House is dependent on the painkillers to keep from being in so much pain that he can’t walk or work as a doctor.

Addiction means several things, none of which the show ever conclusively proved about House.

Addiction is a primary, chronic disease of brain reward, motivation, memory and related circuitry. Dysfunction in these circuits leads to characteristic biological, psychological, social and spiritual manifestations. This is reflected in an individual pathologically pursuing reward and/or relief by substance use and other behaviors.
—from the American Society of Addiction Medicine

I just don’t think the show ever gave us any evidence of these things in the character of Greg House. Sure, they showed him getting angry when his drugs were taken away, but if someone deliberately put you in pain to prove a point, wouldn’t you be angry?

Being dependent on a medication means that you need it to function. I’m dependent on Zoloft, because if I stop taking it, after a few weeks I’m afraid to leave the house or speak to anyone, and I end up on the bed in fetal position crying. Does that mean that I’m addicted to it? I hardly think so. So why should someone who is dependent on pain medication be considered an addict if it allows them to function?

Horses vs. Zebras

We’ve all heard the old adage that when you hear hoofbeats coming, you should assume it’s horses and not zebras, right? So doctors are advised to start with the most likely diagnosis rather than the most exotic, because their patient is more likely to have influenza than Ebola.

This is pretty good advice in general, although it does lead to its own difficulties. For example, somewhere along the line, the default assumption for doctors (especially those in emergency rooms) became “A patient asking for pain medication or complaining of pain is more likely to be a drug addict than a person in pain.”

Although in some ways this is understandable, it’s extremely problematic, even if you are working in a position in which you encounter a fair number of addicts. Because yes, you may manage to withhold Dilaudid from a drug addict who was trying to con you out of drugs…but what about the people who were legitimately in pain?

Anecdotes Are Not Data, but They Sure Are Interesting

(All anecdotes below happened to real people. I’m using pseudonyms because I didn’t ask their permission.)

Treatment of Chronic Pain

A friend with chronic pain had her pain under fairly good control until recently. Serena had been working with the same doctor and found the right combination of pain medicines that allowed her to function and be reasonably comfortable. Then…disaster! Her doctor moved out of state!

Serena found a new doctor and went in for her first visit. The doctor was uncomfortable with the medications Serena was currently taking and asked about several different medications. In each case, Serena explained the side effects or ineffectiveness. Finally, the doctor (in irritation) asked what drugs she could take. “The ones I’m taking right now,” she said, pointing to her chart.

Despite her having tried all those other medications, the doctor insisted on taking her off the things that actually worked and made her try the others all over again. I’ve noticed that since that happened, she’s been having horrible migraines. Hmm…

(NB: This one happened to my mother too. It was lovely. Just lovely. Not as good as the doctor who decided she was an alcoholic, despite the fact she pretty much only drank on Passover. That one was super special. But I digress.)

Treatment of Acute Pain

Now Joe, on the other hand, is almost never in pain. He’s got several chronic diseases, but not chronic pain. However, when his system gets out of balance, he ends up in extremely acute pain. Agonizing pain that leaves him barely able to walk and almost unable to think, it’s just that overwhelming.

This happens a few times a year (sometimes more, sometimes less) and he always goes to the same hospital, because they have his records. He even has a treatment plan on file with the hospital so they don’t have to start from scratch.

Unfortunately, this is nowhere near enough to ensure that he will be treated promptly for this acute pain. The period in which he lies in a bed and moans in agony is always measured in hours; the question is just whether those hours get into the double digits or not.

Another problem is that he’s found he gets very little pain relief from the ER’s preferred opioid of choice but if he asks for the drug that actually helps, he’s labeled a drug seeker. And lest you think I’m exaggerating, I’ve been personally present during some of these ER visits. During a very memorable time, the doctor listened to Joe’s wife explain the situation, nodded a few times, and blandly informed us that patients asking for this other drug are generally drug addicts, so she wasn’t going to give it to him. And that was that.

It was many many hours before he got any pain relief and I watched my friend writhe in pain for much of that time. 0/10 for fun. Not recommended at all.

And you see, here’s the best part: It turns out that if you leave a patient with many chronic diseases in massive untreated pain for long enough, you actually make things worse. Once, they came within a few millimeters of damaging his heart and Joe ended up in the cardiac care unit because they were sure he’d had a heart attack. (He…probably didn’t?)

Another time, I was looking up at the monitor above his bed and I asked his wife what one set of numbers was. “That’s his blood pressure,” she said.

I stared. “I didn’t know the numbers went that high!” Turns out they do. And don’t even ask about his pulse or blood sugar. I didn’t know those numbers went that high either.

Treatment of Other Illnesses

This time the anecdote is about me. You see, I’m prone to developing a chronic cough after any kind of respiratory virus. And since this has happened to me for decades, I’ve had plenty of time to test out every single possible treatment for coughs.

I’ve tried hot lemonade with honey, hot showers, menthol cough drops, Tessalon perles, diphenhydramine (Benadryl), humidifiers in the bedroom, dextromethorphan (in most cough medicines), drinking lots of water, pseudoephedrine (Sudafed), guaifenesin (Mucinex)…

Seriously, I’ve tried them all and in various combinations. They either have almost no effect on the cough (e.g., Tessalon, humidifiers), make me ill (e.g., dextromethorphan), or only work for a half hour or so (pretty much everything else).

Every time I end up at the doctor with a cough, I explain that I haven’t slept properly in weeks and I’m nearly at my wit’s end. They sound sympathetic as they tell me to “try some Benadryl before bed.” Like I haven’t ever thought of that before. ::eyeroll:: Too bad it doesn’t work.

Alas, the only foolproof method I’ve ever found to treat my chronic cough is a) a few doses of codeine cough syrup or b) one or two doses of one of the opioids like codeine, hydrocodone, or oxycodone. However, I’m fairly sure you can guess what kind of reaction I get if I ask for those things. I request a small amount of codeine cough syrup, which I can assure you is not a large dose of codeine, which isn’t even a very strong opioid…and I get the look of “drug-seeking addict” even from doctors who should know better.

So periodically I spend weeks sleep deprived, miserable, and unable to function, when I could literally be cured within a night or two. All because of the fear of drug addiction. Seriously, people? How the hell does this make sense?

This and That

Holly had her most effective pain medication snatched out from under her one day when her health insurance decided to stop covering it. No warning, no appeal. She was without medication for something like a month, thanks to that brilliant decision.

Kay was told by a resident that she was clearly an addict because she said she had to get her pain medication intravenously rather than by pill. He snottily informed her that that was what addicts wanted. She pointed out in return that since she was in the hospital due to her inability to keep down any kind of food or liquid, he might want to rethink his judgment.

And I could go on. These are just the anecdotes I was able to come up with after thinking for a few minutes!

What’s the Answer?

I honestly have no idea how to solve this. We need a massive retooling of the way we think about pain and the way we think about addiction. Maybe the gradual legalization of marijuana is a step in the right direction? But I don’t know. All I do know is that far too many of my friends and family spend far too much of their time worrying about whether a doctor will arbitrarily choose to take away their pain medication under the mistaken belief that they’re being helpful.

I’m not saying that opioids should be handed out like candy. They’re not without risks…but have you ever looked at the rates of liver damage from taking too much Tylenol (acetaminophen)? How about the risks of driving your car on the highway? Pretty damn dangerous.

The question is risks vs. benefits. Not every patient should take opioids. Not every patient should start out trying opioids, but to deny them to patients with a clear and obvious history of pain and to deny them in small doses to someone with sudden acute pain all because we’re afraid someone somewhere might get addicted is just ridiculous.

Thus endeth the rant that’s been a decade in the making. I hope you’ve enjoyed the ride.

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About mamamara

I'm a 40-year-old, work-at-home mother of two. I'm pro-vaccine, pro-medicine, pro-science, and an avid reader of information about all of the above, and I want to combine my love for my children with my love for science. So here we are!
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2 Responses to Pain and the lack of treatment thereof

  1. chezperky says:

    I think I know who Kay is…

  2. chezperky says:

    Also, while I know that you know I agree with every single word you say here (can I get a “Hallelujah” over here?), there IS another component to this. Not nearly enough doctors are trained properly in preventive (vs. acute) care of pain management (and there aren’t nearly enough pain management professionals in the world – even in large cities like DC, Baltimore, and Philadelphia, which means primary care doctors need to be better trained in this area). Proper treatment of chronic pain *must* include preventive care medications that are not opiates. Because as much as I *do* rely on my opiates for pain relief (because I don’t have a lot of good options right now), opiates don’t WORK well for chronic pain. Your brain develops a tolerance for them very quickly and you soon need higher and higher doses for less and less pain relief (as I’ve experienced multiple times. The only reason the opiates still work for me is that I go on self-imposed breaks from them for weeks at a time where I suffer in silence (and tears) and I also don’t keep bumping my doses up anymore. My doses are already extremely high, so there’s no sense in continuing to make ER doctors squirm. (I already don’t tell them the real dose when I’m in an ER. I just tell them what I think they won’t give me the hairy eyeball about).

    But more should be made early on of preventives like gabapentin, lyrica, topamax, etc. (none of which work well for me, but they’ve done miracles for other people). Lidoderm patches do a great job for me for surface level pain (and even some degree of deeper pain) as long as I can actually pinpoint WHERE the pain is – sometimes “generalized pain” is actually a thing, though doctors don’t like to admit it. Nerve blocks are great but can only be done by a pain management specialist and not nearly enough pain patients are sent to specialists to treat their pain. Ketamine infusions are thought to be miraculous, but even among pain management specialists, ketamine infusions can be difficult to come by. I’ve had a hard time finding someone to do them (I had someone to do them in DC at GW, but then my insurance got pulled out from under me the day they were supposed to start – by the time I got that worked out, I had moved to Philadelphia and I can’t find anyone here who will do them except people who do not take insurance).

    There needs to be better treatment of the underlying diseases that cause the chronic pain, but that’ll be the day.

    And there needs to be a reversion to the days when ER doctors were trained to treat EVERY patient’s pain as if it were real, even at the risk that they were giving an addict their fix. That used to be standard policy in every ER, and then a new wave of residents came in and got all self-righteous about it and flipped the paradigm. And this huge bunch of research came out saying that most heroin addicts started out as abusing prescription opiates, so ER docs decided that they were just being enablers. But there’s a difference between treating an acute attack IN the ER and prescribing additional meds to take home. Prescribe 2 days worth to get through the weekend, don’t prescribe 2 weeks’ worth. That’s a reasonable compromise, but refusing to treat at ALL is NOT compromise.

    Ahem. I’m off my soapbox.

    No I’m not, but I know I’m preaching to the choir, so I’ll stop for now.

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