So as a result of feeling a bit better lately, I have been trying to go off all of my opioid pain medications, which at one point totaled as much as 60 mg. a day — three, eight-hour time release 15 mg. morphine pills and then as many as three, short-acting, 5 mg. hydrocodone as needed.
I worked my way down from 60 mg. a day to 15 mg. a day over the course of a month, and then tried to drop down to zero. It did not go well. You can read more about that here.
A little over a week after trying to go cold turkey, for various reasons involving a fresh pain flare and horrific withdrawal symptoms, I ended up back on the drugs. And I have spent the last few months working with a team of doctors trying to figure all this out and attempting to slowly taper off those last 15 mg.
This is what it’s been like:
Withdrawal is sneezing. Every three or four minutes. As soon as the opioids wear off at all — it’s sneezing.
And it’s anxiety. And waking up drenched in sweat. And it’s the kind of diarrhea that you have to learn to accept as a part of your life now. The kind that fills the toilet multiple times a day and leaves your legs weak.
It’s calling your high school boyfriend at 2 p.m. on a Friday because you’re in Target having an anxiety attack for no reason and you need to talk to someone, anyone, or you might actually die right there between the fitting room and the yoga pants display. It’s immediately regretting that phone call and then having anxiety about why you made it in the first place.
It’s not sleeping. God is withdrawal not sleeping. It’s, you’re lucky if you get four hours in one night. And waking up at 3 a.m. like normal people wake up at 7 a.m. or 8 a.m. or even 9 a.m.
It’s giving up, and then trying again tomorrow.
It’s realizing that cutting your pills in half and taking them in a different time configuration actually helps a lot. And it’s tracking every dose and every symptom in Google Keep.
It’s deciding that maybe dating isn’t the greatest idea when your fight or flight response is literally kicking in every time it takes a guy more than seven minutes to respond to a text message. It’s giving in and hooking up with a guy on a Tuesday night anyway because the escape is worth the mess you’ll have to deal with in the morning.
It’s doing a lot of things you aren’t proud of.
It’s your primary care doctor telling you that other people have no problems at all going off these drugs, then qualifying his statement with, “But, I mean, I believe you,” which somehow implies he doesn’t.
It’s reaching out to your old psychologist and pleading for help, and then getting referred to a psychiatrist who specializes in this sort of thing and finally finding one person on the whole entire Earth who actually has some idea of what you’re going through.
It’s a glass of wine, and a handful of Advil, and lots of sugar candy, as you try to find anything to help manage the symptoms.
It’s slow. Withdrawal is maddeningly slow. It’s going down 1.25 mg. in a day and feeling like the world is ending and waking up more anxious than you’ve ever been. And wondering if you can actually do this.
And then it’s a post anxiety-crash four hours later, and being so tired that you can’t even move your arm to check your phone.
Withdrawal is multiple people calling you a drug addict to your face because your body is physically dependent on a medication you were given by a doctor. It’s multiple people saying you just need more willpower and more prayer and more desire to get off the drugs.
It’s wondering if maybe you are a drug addict.
It’s trying to eat Taco Bell because Taco Bell usually solves everything and then realizing that you can’t even stomach a cheesy gordita crunch because the withdrawal has destroyed your appetite.
It’s working out to help the anxiety, and using the stupid Calm App for meditations that never work, and texting your best friend 72 times an hour so that you know you’re not alone. And then texting her again. And it’s breathing her oxygen for awhile because you don’t seem to have any of your own.
It’s intestinal cramping so severe that you’re literally doubled over in pain on the couch, crying out in pain, wondering if this is the end.
It’s deciding to go back to church because for some reason, for that hour each week, you feel maybe a little bit of peace.
Withdrawal is feeling weak.
It’s wondering if you’ll ever feel normal again. It’s wondering that over and over and over and trying to convince yourself that someday you will get a full night’s sleep and you won’t wake up covered in sweat and you won’t have diarrhea first thing in the morning and you won’t have the crushing feeling of anxiety as you greet the day.
Withdrawal is trying to live a normal life while your body goes through hell every day. It’s trying to work and be a good friend and a decent human being when all you want to do is die. It’s trying to figure out how much information, exactly, you should give your boss about your opioid dependence.
It’s having a pain flare and thinking that maybe the drugs were doing more than you thought, and wondering if you’re even doing the right thing.
It’s saying that John Green quote about survival to yourself 59 times a day. The one that goes, “I’m not saying that everything is survivable. Just that everything except the last thing is.” And then it’s reminding yourself that this is probably not the last thing.
And it’s reaching out to your Facebook friend who has the same chronic pain you have and him telling you that you have to do this — it’s important that you do this — because if you don’t the next best option is in-treatment and you don’t want that.
It’s trying to distract yourself with The Hobbit, and Spotlight and Downton Abbey, and Facebook.
Withdrawal is still happening. It’s ongoing. It’s a long-term goal. A hope that one day you’ll be clean — whatever that means.
It’s praying, and crying, and giving up, and trying again.
And it’s sneezing.
Editor’s note: Like most of my posts, a version of this story originally ran in Pain News Network. This version contains profanity because going through opioid withdrawal is seriously fucking hell.
This weekend, as I tried to get off morphine once and for all, one thought kept going through my mind — if the devil is any good at his job, hell will just be eternal opioid withdrawal.
It’s like, have you ever had the flu, and also food poisoning, and also been hit by a train, and also had the fight or flight anxiety that comes from being chased by a bear for a week straight — all at the same time? Well it’s worse than that.
It’s fucking hell.
And it’s all made even worse by the fact that I had the cure the whole time. Every single minute that went by, I knew that I all had to do to make it all go away was pop one of those little blue pills in my purse.
I made it to the 72 hour mark last night at midnight. That’s 72 hours without a morphine or a hydrocodone. I haven’t gone a full 72 hours without an opioid in almost two and a half years.
I swear to God I was tapering. I spent all of November tapering down my dose. Going so effing slow. Like three pills, then two pills, then three pills, then two pills, then after a week, I’d do one pill then two pills, then one pill.
But I was down to one pill every other day, of the lowest dose, and I knew the next step was going through withdrawal. I thought maybe it wouldn’t be that bad since I had been going so slow with the tapering. I was wrong.
Honestly, the first 24 hours weren’t so bad. My body was just chilling, all expecting another dose in a day or so. But then, at midnight, exactly 24 hours in, the involuntary leg movements started. Yes. This is a thing. I was lying in bed, in the middle of the night, and my right leg would just move. Also, my anxiety started skyrocketing so high you’d have thought I was in a war zone.
By the morning, about 31 hours in, the muscle aches had set in, and everything I had ever eaten over the last two years had started to come out. Diarrhea doesn’t sound like the worst thing in the world, until you literally spend so much time on the toilet that your legs go numb. And then when you do get up, you are so dehydrated that you can’t even walk without holding on to the wall.
There’s other stuff too, the kind of stuff that maybe sounds minor until it happens to you. Like, my nose was randomly running, and I was sneezing like there was a secret cat hidden in the bathtub. And I could not sleep. At all. And if somehow I did get a couple minutes of shut eye, I would wake up drenched in sweat. Also everything made me cry. Seeing the sun? Tears. Facebook posts about makeup? I’d start weeping. Basically the fact that I was alive was enough of a reason.
Again, all these things don’t sound so horrible, but when they are all happening at once, it is literally hell on earth.
I spent most of the 72 hours watching Breaking Bad — which is either the worst show to watch during withdrawal because it’s all about drugs, or the best because it’s all about the horrible things drugs lead to.
I also spent most of the 72 hours trying to process how I got to this point. Morphine has been so good to me over the last two years. And I stand by the fact that it literally saved my life. If it wasn’t for the pain relief I got from the drug, I don’t know if I would have been able to endure. And I am thankful to morphine for that.
But I wouldn’t wish the morphine withdrawal on Hitler.
And I thought about everyone who has ever had to endure this for whatever reason. And my heart filled with compassion and love for them. Some people like to say that drug addicts are just weak, or lack self control. Those people are assholes.
I also thought a lot about how much I wanted to just pop a morphine and make everything better. I thought about it so hard. Vividly picturing the little blue pill in my head and fantasizing about how good it would feel to take just one.
And I thought about how going through this withdrawal was a good thing because I wouldn’t even be going off morphine if I wasn’t feeling better.
I felt like this was a final step. A last stand by my pain to suck me in. I had to get off this drug to move on with my life. But it was so incredibly hard.
And I kept thinking about how, I am a good person. I am a strong person. I should be able to get through this. Why am I struggling so much?
My best friend was extremely supportive during the whole thing, constantly checking on me, praying for me, and sending me encouragement. And at one point she sent me a text that said, “I think the last two years were the toughest times of each of our lives (in different ways). Glad I get to see you on the other end.”
The other end. Wow. I honestly never thought I would ever get to see the other end. For a long time, I didn’t even think there was an other end to get to.
The idea that I could get to this proverbial other end though, it was enough to keep me going.
Honestly, I still feel like I was jumped, and then tossed in front of a train. But I’m doing a lot better than I was doing on day two. From what I can tell the withdrawal symptoms can last anywhere from a week to months, but it’s those first 72 hours that are the most horrible. And I have made it through those.
I also discovered that there’s a cocktail of over-the-counter drugs that help. Specifically, I have been popping handfuls of Advil, Imodium and Benadryl.
I saw my brother this morning. And as I walked toward him, I felt like I was just regaining my footing after being in a plane crash. Still shaken up, disoriented and feeling like hell, I said, “Well, I’m finally feeling a little better. I made it to 72 hours.”
“Great. Now you have to make it a week,” he said.
Fuck, I thought. He’s right.
Hello! My name is Crystal Lindell and I’m on opioids — specifically, morphine and hydrocodone.
I need these medications on a daily basis to help manage my chronic pain. And by “chronic pain” I mean daily pain so horrible that I literally want to kill myself. Daily pain that feels like someone literally took a razor blade to my rib bone, whacked me with a golf club and then dropped a car on my chest.
The morphine is time-released, so I take that every eight hours, every day, all day. But it isn’t always enough to control my chronic pain, so sometimes I also have to take hydrocodone pills to help ease something called “breakthrough” pain.
Recently, the U.S. Drug Enforcement Agency decided that the hydrocodone I take should be reclassified to a Schedule II drug. That means I can’t get a prescription for the drug from a nurse, or a nurse practitioner. I can only get it from a doctor. It also means that I have to have an actual hand-written prescription to give to the pharmacy — no more calling or faxing it in from the doctor.
A lot of people in chronic pain, myself included, are really upset about this. But, if you’re not enduring agonizing pain on a daily basis, I can understand why you might not get what all the fuss is about.
So, below are some common questions those who don’t have chronic pain usually ask about hydrocodone, as well as some answers. Hopefully this helps to clear some things up about the whole situation.
Why are you so upset about this?
I’m upset for few reasons. Personally, this means I now have to get my monthly hydrocodone prescription in the mail, which throws a bunch of new factors into the situation. (More on that later).
Also, those who live in rural areas and only have access to a nurse practitionerwill no longer be able to get prescription for the drug, regardless of how much they may need it.
But more generally, it’s also one more way that hydrocodone, and opioids in general, are being demonized by our society. For me, hydrocodone has been a life saver in the purest senses of the word.
It has helped me to keep my job, take regular showers, and even travel. Without it, I can assure you that I would be spending every day of my life in bed or on the couch. I see the medication as a miracle drug.
But as the DEA continues its fight against opioids in all forms, it not only gives the drug a bad name, it also gives its users a bad name — whether they’re a legitimate user like me, who only takes the recommended dose each day, or a drug addict or dealer who sells the pills for profit.
It also opens up the door for others to treat hydrocodone users as they would an addict or a dealer. Pharmacists already give opioid users the third-degree when they try to fill a prescription for morphine or other similar drugs. And some will even outright refuse to fill it, regardless of how much pain the patient is in.
The new regulations also will likely make doctors that much more gun shy about prescribing hydrocodone, which for many patients is the only path to any sort of relief. Those in pain shouldn’t be forced to endure a fight with the medical community to get the relief they need — the daily battle they’re having with their body is tiring enough.
If you take hydrocodone every day, aren’t you an addict?
No, I’m not. There’s a big difference between “addiction” and “dependence.” My body does have a dependence on the drug after being on it so long, and yes, that would make it hard to go off of it cold turkey.
However, if I was addicted, I would take it for the “high” it can give rather than the pain relief, and thus I’d likely take larger and larger doses each day, and run out sooner and sooner each month.
I personally stick to my recommended dose not only because I’m not “addicted,” but also because I need the pills on a daily basis to help me function. If I took the whole bottle on the first day, I’d spend the rest of the month sinking into the couch in pain and despair.
If you’re on an opioid like hydrocodone, shouldn’t you be seeing your doctor every month anyway? Can’t you just get the prescription then?
Actually, no, I don’t need to see my doctor every month. I have an ongoing chronic illness that has no foreseeable end.
I also have an ongoing relationship with my doctor. We often communicate via email and phone calls between visits, but unless there are any major changes in my health status, I don’t need to see him every 30 days.
Also, my condition is so rare that I have to be treated at a university hospital. However, I live in a small town, so the closest one is about two hours away. Driving such a long distance every 30 days wouldn’t just be impractical — it would be torture for my body.
And of course, there are many, many other patients out there in similar situations who are enduring long-term pain. Just like me, they need a monthly hydrocodone prescription, but they don’t need to see their doctor every single month.
Well is it really that big of a deal to have the prescription mailed to your house?
Yes, it is, for a few reasons. One, the mail doesn’t always get here when it should, meaning I could go into opioid withdrawal if there was a delay.
Two, my morphine prescription also has to be mailed to my house each month. In the past, if there were any delays caused by the mail and my morphine prescription didn’t get here on time, my doctor was able to phone in a hydrocodone prescription so I wouldn’t go into withdrawal. Now, I will no longer have that option.
If you have never gone through cold-turkey opioid withdrawal, the best way I can explain is this: It’s feels like you are literally having years of your life sucked out of the very bones of your body.
Can’t you just take a different medication? Why do you have to be on hydrocodone?
I’ve tried a bunch of other medications and none of them are as effective as hydrocodone at relieving the sudden bouts of strong pain I experience throughout the day.
But really, that doesn’t matter. All you need to know is that I’ve discussed it with my doctor, and he and I have agreed that it is the most effective medication with the fewest side effects for my health situation.
Think about it, if you were sick, isn’t that all you’d want to matter?
Aren’t thousands of people dying from opioid overdoses each year? Won’t this new law help with that?
You are right. A lot of people have died from opioid overdoses. Starting with 4,030 deaths in 1999, the number increased to 16,651 in 2010, according to the Centers for Disease Control.
I do feel genuine compassion for those who have died from drug overdoses as well as their families. I have had many personal experiences with loved ones dealing with drug addiction and I wouldn’t wish that on anyone.
But, I also feel genuine compassion for the 100 million Americans living each day with chronic pain.
Right now, the pendulum has swung really far in one direction, and the needs of those suffering with chronic, as well as short-term, pain are being ignored at the expense of drug addicts.
Also, it should be noted that suicide rates among those with chronic pain are significantly higher than the general population.
In fact, “White men, white women, and white worker compensation men with chronic pain in the age range of 35-64 years are twice, three, and three times as likely, respectively, as their counterparts in the general population to die by suicide,” according to a study in the U.S. National Library of Medicine.
That’s a pretty dramatic difference. But I can tell you from personal experience that the right medication can go a long way in giving someone the will to survive.
If pain patients really fell this way, why didn’t they voice their side of the story to the DEA?
Aside from the fact that it’s incredibly difficult to take on the DEA when you’re healthy, much less when you’re enduring chronic pain, it’s also been hard to get them to understand why anyone would want more access to a drug instead of less.
The anti-opioid community has done a great job getting their message out into the world — but just because they’re the loudest, doesn’t mean they’re right. Those of us suffering from daily, treacherous chronic pain may be quieter (we are dealing with daily pain after all), but we have a point to make too.
We just believe that if there are legal medications out there that can make a huge difference in our quality of life, that we should have access to them. And that access should only be dependent on a conversation with our doctor or nurse practitioner. No more, no less.