By Crystal Lindell, Columnist
Look, I get it. I really do. Heroin is just such an easy thing to be against. I mean, it’s a drug. It’s a bad drug. It’s illegal. And people literally die after using it.
What’s not to hate?
But here’s the problem. Somewhere in this conversation about how heroin is bad, people started thinking that all opioids are bad. Even the legal ones. The ones that help people. The ones that actually save lives.
And thus, we have now ended up with another government agency trying to regulate medications that so many of us need. Not medications we want. Or that we think might be good. Medications we need.
Last month the Centers for Disease Control and Prevention (CDC) released new draft guidelines that would -- if adopted-- sharply reduce the prescribing of opioids for both chronic and acute pain in the U.S. It’s mostly an effort to curb heroin use and non-medical use of opioids. Which, again, I get. Those are easy things to hate.
The CDC has since come out and said they would review the guidelines and look at public input, before finalizing them. But what changes, if any, they’ll make is unclear.
Among the 12 guidelines are recommendations like doctors should only prescribe opioids as a last resort, and chronic pain patients should have comprehensive treatment plans that go beyond just handing them a bottle of hydrocodone.
As someone who literally needs daily morphine to take showers, I’m extremely wary about the recommendations. And I’m also extremely weary of how the CDC chose to announce them.
They revealed all of them during an online webinar, which I wasn’t able to attend live. Seeing as how it’s 2015 though, I assumed I’d be able to watch it later on demand via my computer. Alas, although the CDC recorded the webinar, it didn’t make it available to watch on demand. I even went so far as to reach out to their marketing person and ask for the slides or a special link, but I never got a response. The whole thing seems pretty shady.
Thankfully, Pain News Network editor Pat Anson did attend the webinar and was able to detail all 12 guidelines. The best way to explain how wrong the CDC is about all this is just to take them one by one. You can see the official language here, but I’m just going to use laymen’s terms to sum them up:
1. If possible, use “non-pharmacological therapy" and non-opioid pain relievers for treating chronic pain. Use opioids as a last resort.
First of all, because of all the stigma associated with opioids, many doctors are already doing this. But it’s to the detriment of those suffering. When I first got sick, the doctors tried to give me prescription-strength Aleve. It literally did nothing for me. And eventually I was in so much pain that I would lay in bed at night and plan out how I wanted to take a knife to my wrists in the bathtub. That’s not hyperbole, that’s the truth.
Eventually, the doctors gave me a really low dose of hydrocodone. It did nothing for me either, and it wasn’t until I tried doubling the dose, and then doubling that dose, that I realized I didn’t have to live every second of every day feeling like someone had just dropped a cinder block on my ribs and then stabbed me with a butcher knife.
Also, I’m guessing that by “non-opioids” they mean nerve medications like Cymbalta and Lyrica, which people have somehow started to believe are a one-to-one swap for opioids, without all the side effects. But that’s just not the case. Nerve medications come with their own set of horrible side effects and withdrawal symptoms, and many people, like myself, find that they don’t actually help treat the pain.
It took way too long for me to get the medications I needed. And requiring doctors to try everything else first will only exacerbate that. You wouldn’t tell someone who just go out of surgery that they should try acupuncture before giving them pain pills. And you shouldn’t do it with someone in chronic pain either.
2. Establish a treatment plan.
Well, duh. Doctors should be doing this even if they aren’t prescribing opioids.
Unfortunately, doctors aren’t neglecting to create treatment plans because they want to give away opioids like candy, they’re neglecting to create treatment plans because they don’t have the time or the patience to have these kind of in-depth conversations.
3. Discuss the risk and benefits of opioids with patients.
Again, duh. But this should apply to all prescription medications. There’s nothing special about opioids.
4. Favor short-acting opioids over extended-release/long acting opioids.
This is the recommendation that makes it most obvious that they didn’t actually consult with any chronic pain patients. Anyone who uses opioids will tell you how much better extended release pills are than short-acting, quick hit opioids.
That’s because extended release pills don’t result in that insane cycle that a typical hydrocodone dose will give you — a burst of pain relief, followed by a crash that leaves you begging for death, and reaching for more meds before it’s time for your next dose.
One of the best decisions I ever made was to go on eight-hour time release morphine. The steadiness of the dose has helped me maintain the same dosage for almost two years. And by avoiding the insane lows that come with short-acting opioids, my pain stays at a more manageable level.
5. Prescribe the lowest possible effective dose, and implement additional precautions when increasing the dosage to 50 mg (morphine equivalent) or more per day. Also, avoid going over 90 mg a day.
I’m just going to say it. I’m on as much as 60 mg of opioids on the daily. There. Now you know. I take a lot of drugs.
But you know why I take that many drugs? Because every day when I wake up it feels like I just got whacked in the chest with a baseball bat, and then hit by a freight train, and then thrown off a bridge. Every day. Again, that is not hyperbole. That is my life. And proposing arbitrary limits on how much medication you think I need to deal with is infuriating.
6. Long-term opioid use usually begins with treating acute pain. So, when opioids are used for acute pain, doctors should give out the lowest possible dose of short-acting opioids and they should only prescribe enough for three days or less.
Look, I’ve had surgery. And it took me a serious week to recover from having my gallbladder out. And I needed that hydrocodone every single day I was on it — all seven days. I’m glad the folks at the CDC can hop out of bed three days after having their stomach cut open, but we aren’t all so lucky.
7. Doctors need to check in with any patients on long-term opioids.
Again, duh. And again, this is something that should apply to any person on any drugs.
8. Doctors should go over the pros and cons of the drugs. Also, they should give patients naloxone if there’s a chance of things going wrong with the opioids.
Okay. Look. It’s always a good idea to go over the pros and cons of any drug. I’m not sure how many times I have to write this, but yes, doctors should do this with EVERY drug.
As for naloxone, I don’t personally feel like I need it because I only use my opioids responsibly. But if a doctor thinks it’s a good idea, I’m not going to argue about it. The key word there though is “doctor.” I don’t believe the CDC needs to be involved.
9. Doctors should review the patient’s history of controlled substances.
I mean, yeah, I guess if someone just got out of rehab for heroin that should probably be a red flag. But I don’t think someone with trigeminal neuralgia should be denied treatment because one time in high school they got caught with pot.
10. Providers should drug test everyone on long-term opioids.
Look, this is already pretty much policy across the country. While my doctor doesn’t do it to me, I did sign a contract saying he could. And, yes, it does kind of suck.
For example, what if you’re being under medicated and need some Mary Jane? What if you just don’t want to feel like a common criminal every time you go to the doctor? Or what if you already just peed? It sucks. And it just adds to the stigma that so many opioids patients already deal with.
11. Doctors should not prescribe opioids and benzodiazepines together.
If your doctor is doing this, find a new doctor. This is basic “these medications don’t mix” stuff.
12. Doctors should offer treatment for people with opioid use disorder (aka addiction to opioids).
Yes. Yes they should. It’s called medical care.
So there they are, all 12 guidelines. Most of them can be summed up as, “Doctors need to talk to their patients more.” And like I said, that’s a philosophy that could apply to all doctors, all patients, and all drugs.
It’s quite obvious from reading through these guidelines that the CDC didn’t really consult with anyone in chronic pain who is using opioids responsibly — and that’s really the worst part about all this.
Look, it’s not like I’m saying you should be able to get time-release morphine over the counter. I get that there has to be some regulation. And I truly do believe that doctors should do a better job explaining various drugs to patients before they hand them a script for hydrocodone.
But I think doctors need to do a better job explaining all drugs. And when the CDC releases uneducated guidelines like this without input from as many as 11.5 million Americans who are on long term opioid therapy, all they’re doing is perpetuating an unfair stigma that does more harm than good.
People who don’t know any better are always making off-handed remarks to me about how, “You need to get off all those drugs.” And I always stop whatever I’m doing to explain to them that it’s “all those drugs” that give me the ability to live my life. Would they rather I laid on the couch all day contemplating suicide? Because that is the alternative.
Again, no hyperbole. That’s just my life.
Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.
Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.