The Pain in Pain Management: Oxycontin + Stigma

A.K.A Me and Oxycontin.. . .The untidy world of pain killers and those people who need them is a bear to navigate. Doctor incompetence, stigma, recreational drug addicts, government pressure, and even pharmaceutical companies all take part in creating an uneasy, often unsuccessful route to ease a patient’s pain, namely mine.

I have never been a drug user or abuser, but now, Oxycontin is part of my daily living. Last Fall, I had an extensive injury and resulting surgery, the sort that any internet search will prove, leaves plenty of patients with chronic, debilitating pain. I am no miracle unfortunately, and I suffer from a spinal fusion from T-4-T11, 14 pins, three rods, and four laminectomies, missing bone. If you know someone who suffered a back fusion, they probably had 1-2 levels fused; I bet even so, they suffer. The hardiest of people might be perfectly fine and pain free within the next year, but apparently I am not one of those lucky people.

However, I am a good and honest patient.

My neurosurgeon and the doctor who ran the physical rehab center I entered right after the procedure came up with a mixture of pain meds. Prior to surgery, I was on a morphine drip and Neurontin. After the surgery for the first week I was on a combination of morphine, Dilaudid, and oxys in relatively high degrees compared to my current usage. I did not tolerate the dilaudid-waking nightmares. . .the sort that would make me try to climb out of bed to run down the hall. Since I could not even sit up without help, this was frightening. They took me off the dilaudid and started a combination of Oxycontin-which is a time released opiate, and oxycodone (aka Roxy), which is a quick acting form of the same medicine, Robaxin-a muscle relaxer, Neurontin-a nerve pain killer, and anti-vert-an anti vertigo medicine.

I left the hospital on all five medicines and could very well still be on all five in large doses. I am the one-not the doctors-who asked to wean down, partly because I didn’t like the side effects of my combo-drowsiness, absent mindedness, severe constipation-and partly because I was in denial and believed I could be back to work as soon as I was off of the drugs. I ignored the idea that maybe I would heal faster if I remained on the drugs. And I definitely seemed to think maybe I wouldn’t be in any pain. See. . . the pain killers work so well, I started to believe I was fine, sort of like people who think they don’t need antidepressants once their drugs start working.

Coming off the Neurontin wasn’t difficult. It is a drug that has to be weaned and cannot be stopped cold turkey. I followed my doctor’s advice. I also got myself down to taking the Robaxin only at night. It is still an effective medicine for me, but I don’t like its drowsy effects in the daytime.

With the doctor’s plan, I weaned myself down on the Oxycontin as well. However, once I got myself down to just 20 mgs of Oxycontin a day, with the oxycodone as my breakthrough medicine, I noticed I was in too much pain, and relying too often on the oxycodone. My doctor advised me to go back up to the time released amount of two 20mg pills a day of the oxycontin 5-6 months ago. And there I have remained.

I rarely ever have to take my break through meds, not because I am pain free, but because I actively try to suffer through medium pain simply because I do not want to raise my tolerance level. Plus, the side effects are almost negligible. Any chronic pain sufferer will tell you that their pain meds. allow them to feel normal, not high. When there is a real need, the brain adjusts. So I feel like myself most of the time now.

Which is where the incompetency of the medical world begins.

Oxycontin is one of the most highly controlled substances in America. Many legitimate pain clinics in the U.S. require patients to sign a contract when they receive oxycontin. Patients have to come in for blood tests periodically to make sure they are taking the correct dosage each day. They also have to appear with their remaining medicine on hand. If they are “over medicated” of course they are dropped from the practice. If they are UNDER, and they didn’t have the assumed correct remaining pills, they are dropped from the plan. The remaining pills that the patient carries are often dumped down the drain in front of the patient. The assumption is that over medication could mean the patient is using street drugs, too. Under medication could allow the patient wiggle room to sell his prescription drugs on the street for more than he or his insurance paid.

Makes sense. Apparently I am one of those under-medicators since I receive enough of my break through medicine- the oxycodone-better known as Roxy-to take 6 pills a day each month. If I did so, I would be on approximately 100 mgs of oxy a day, counting my Oxycontin. I don’t need that. I now probably take 1-3 a week on top of my time released medicines, so I have plenty lying around (locked safely away from teenagers). Which is a Doctor mistake. . .in my naïveté, it never occurred to me that real pain patients would suffer their pain just to sell their “extras.” I had a partying buddy once joke a few months ago that she could get me thousands of dollars for my left over Roxy. (Reread the word JOKE. I mean that, you government lurkers.)

I have always done what I am supposed to do (I follow my dosage of the time released pills though I use far less of the Roxy than I could): Only my doctor prescribes my meds.; I do what he thinks is right; I use the same pharmacist in his building each month. I create no red flags at all. What do I mean by red flags?

Well, like I said this is a highly controlled substance. Although it must be prescribed only monthly, on paper, not by email/fax, Abusers simply go to multiple pain clinics and pretend they have this or that ailment. They hit up multiple pharmacists. They create one person accidents just to go to the ER. They lay a serpentine trail that takes drug investigators too much time to trace. And of course, there are corrupt pain clinics, too. Just as marijuana shops in California have doctors on hand to pass out prescriptions to anyone who complains of a low appetite or eye pain, pain clinics across the country have former gynecologists or dermatologists ready to make quick money handing out scripts for bogus complaints. I do not fit anywhere into that picture.

When I first was released from the hospital/physical rehabilitation center, we had great difficulty finding a pharmacist who even had the medicines in large enough amounts to fill my prescription. They had to confirm this was a legitimate prescription, and then called around to sister locations to find enough to meet my needs. Apparently most of the locations keep very small amounts, sort of like Gas Stations that post they only have $100 on hand. This slows the Oxy thieves from robbing the place. Once the pharmacist found a place that had enough, we overheard him confirming that yes, he had actually seen the patient and was certain I needed the medicine (being in a wheel chair and with my armband still intact.)

We shifted after that first prescription fill to my doctor’s pharmacist, so we wouldn’t go through that every month (which is the broadest time frame this can be prescribed.). We have also hit the problem of our pharmacist sometimes not having enough, or my insurance company setting a weekly limit. We have literally walked away with 6 pills for the weekend because the pharmacist is not allowed to give me more until Monday. Some of this is caused by the FDA or insurance company restrictions. Some of this is caused by my surgeon. Because he is always in surgery, we have learned to ask for the refill a week before we need it, because sometimes it literally takes a week for his staff to get him seated with a pen in hand. And since this is a medicine that should not be stopped cold turkey, I cannot run the risk of waiting till the last second only to find they cannot reach him.

Busy as ever, he just auto-fills all my current prescriptions, So I always get just enough Oxycontin, way too many Oxycodones and Robaxin tablets. The last several times I picked up my medicine I just told the pharmacist not to fill the Robaxin and the Oxycodone, I didn’t need them. In my husband’s innocence, he joked with her that if she needed any-since they have so much trouble with supply-give us a call, we have plenty.

Har har. You should have seen the look on her face. This was before my friend who once managed a pain clinic told me about how closely doctors are monitored themselves, about how they make their patients throw out their extras. Most surgeons will send their patients to a pain clinic because they themselves do not want the FDA monitoring that goes with prescribing narcotics. But I did not go to a pain clinic. . .My neurosurgeon has always trusted me. I have never asked him for extra, Never asked him to move upwards in mgs. Never run out too soon from over use. Maybe it is trust. Maybe it is simply inexperience or inattentiveness on his part?

Enter the Devil in the Details.

Each year 15,000 people die from overuse or overdose of Oxy.. To put this in perspective, between 75,000 to 3.3 million alcohol-related deaths occur in the U.S. each year (depending on how the data fall and who reports in.) This is a huge difference. While no death is acceptable, there is a hysteria about Oxy that is ignored in much of the bigger picture of substance abuse. One Public Safety Commision report states that approximately 78, 000 people go to the ER annually for Acetaminophen overdose. Really? I am fascinated by how we pick and choose our battles.

The people I meet who swoon and tut-tut when they have learned of my medicine, never have any real-life experience to share. No legitimate patients who suffered or died. They’ve just “heard bad things. . .”

We vilify Oxycontin’s effectiveness by focusing on its overuse and overdose. But because alcohol (or even OTC painkillers) are so socially accepted, and because a ban on alcohol in the last century ended in the development of major crime families, no one is interested in this disparity. Maybe I should just drink my self stupid everyday. I’d be more socially accepted. In fact, we don’t even use the words overdose with Alcohol.

The danger in Oxycontin, as in alcohol or any drug, is exactly that: overuse and overdose.

Is there a difference? Yes. When I was in my Physical Rehab Center, the night nurses who are often second string staff had the right to give me a certain number of roxys (oxycodone) within a certain number of hours. I noticed they liked to give me extra pills, extra close, right before bedtime. Keeps me down for a while-no bed pan help-no roll over helps. . .one night a nurse I had not had before gave me that amount and tucked me in with a blanket. I woke a few hours later having sweated the bed to a pool. She had to change the sheets and my clothes and then promptly gave me an extra dose “to help me get back to sleep”. Within the hour, I was dozing and struggling to breathe. Have you ever had one of those dreams where you feel like you are awake but cannot move? This was very similar, but it was my lungs that wouldn’t move. This is how oxy kills. It depresses the respiratory system.

This is why people freak out about this medicine. But was that the med or the nurse?

No, this was an example of an overdose, and the nurse was reprimanded.

Overuse is when patients are like me, but they do not pay attention to their own body and push too fast to go up in dosages. Irresponsible doctors don’t slow them down
, so they quickly end up on 400mgs of oxy that no longer kills their pain. This is why I do not always give in to my own pain by hitting it with Roxy at every turn, and why some responsible doctors and clinics have some of their patients spend several weeks on methadone allowing their brains to see a lower amount of Oxy as effective. These are doctors who understand how to avoid overuse.

Sadly, some people, their pain is so severe that even this doesn’t work. When my sister-in-law was at the end of her decades long battle with cancer, she could walk around on enough morphine to kill a whale, yet she was still in pain. She was always tempted to do more and more, which is why the rest of us had the keys to her meds, and she did not. And of course, this is why Hospice played an important role at the end of her life.

Overuse is when people buy and use oxycontin recreationally. I personally have never felt any sort of high on my medicines since coming home from the hospital. Yes, in the hospital the Dilaudid and Morphine gave me some funky awake nightmares. Apparently I also liked to sing aloud in that first week. But now on my effective regulated amount, I do not feel any sort of altered brain state other than the inability to recall some words at the tip of my tongue. However, I did have a former student about five years ago OD and die on his pleasure of Oxycontin. I understand its a quick high and an awful death. Since then the pharmaceutical companies have been able to adjust the time released version so that when chewed, the tablets do not have the same effect they used to have. But people still overuse and abuse this drug.

There is so much negative stigma attached to this medication that true pain patients have to deal not only with their pain, but also the judgment of anyone who might find out they are “on Oxy.” And because of this, people make some pretty horrible assumptions about me. My own mother likes to call me periodically creeped out by what she reads on the internet.

“I am worried you’ll become an addict.”

“Mom, I am already an addict.”

“Whaaaat? What do you mean.”

I have to try and explain the difference between a patient who becomes medically chemically dependent and what she pictures in her mind: the gutter dwelling, hand shaking, drug fiend.

“I was dependent on this drug before I even left the hospital. It simply means that if I stop taking it, it will cause me to go into withdrawals. My body has to have it now. Sort of like you and coffee. . .”

Then she worries I will die of withdrawal. Or die in an overdose. You know how Moms are.

Some of my work pals crack jokes about it. (My real friends know better.) They seem uncomfortable knowing that I am on Oxycontin. After all, isn’t that the thing that kid was using that killed him. . .isn’t that the current “fun drug” all the kids are using?? They seem to think I am not “better” yet because I like my medicine.

They lack compassion for my dilemma: incapacitating pain or medication. Tough, limited choice, I have there, the woman who shifts from 3-8 on a ten point pain scale throughout the day

Even my former physical therapist seemed very uncomfortable that I was still on Oxy and seemed to be prying into why I was really taking it, as if the grimace on my face every time she wanted me to put my hands over my head isn’t enough. (Did you notice the word “former?” My surgeon helped me find a new, more educated PT). Chronic pain is so foreign and rare to most people, even in physical therapy centers, people do not really have proper sympathy for it, and pass judgment.

Given the recent revelation that the government is listening in to our phone calls and perusing our internet histories, I am even uncomfortable searching the phrase: “Weaning off of oxycontin.” That is how diligently it is protected. The other day, we got an unsolicited sales call from a company pushing a new pain product for chronic pain sufferers. Hmmm. Makes you wonder. So now, am I “THAT household with an Oxycontin user” to the unknown internet peeping toms?

I have simply learned not to discuss it. “Why don’t you drive?” Uh, cause I can’t turn my head. Notice how responsible I am even about driving. But that doesn’t matter. . .people equate Oxy users to heroin addicts. I mean do I have to carry around a little copy of my MRIs and show my surgery off like a baby sonogram? People do have botched knee replacements, they do have rare physical disorders, extensive back hardware like mine. There are people for whom Oxycontin is a God send that allows them to have a modicum of normalcy in their lives again.

Even some surgeons avoid prescribing Oxy. Giving him all that extra time he has historically needed, we called my doctor’s office one week early to get my prescription refilled earlier this summer. Low and behold, he was on vacation for two weeks. Uh-oh. Ignore how irresponsible it was of him to leave a narcotic patient without any notice. What’s worse, his partners, who were supposed to take his calls, never prescribe oxycontin (their poor patients-geez). I know now that they don’t feel any negativity about Oxy; they just don’t want to be watched by the government. My doctor is the youngest in the practice and the only one who does prescribe it. Unfortunately for me, because my doctor was not there, and his partners couldn’t care less about me, (or a lawsuit toward him), they were only willing to supply me with Lortab.

My pharmacist told me this was not enough of the opiate my brain needs, and I would be forced into withdrawal, which means anything from the sweats, creepy crawly skin, to pounding headaches, deep depression, vomiting, diarrhea and on and on.

How could they be so careless? They had my records. They could see I am not an abuser. . .but since it was not their responsibility. . . Since they care more about some FDA assessment than my well-being. . .nada.

Yet. . .Other doctors have done this to their own patients, dropping them from the drugs cold turkey. The patient is then forced into an expensive ER trip. How can an oath to “First, do no harm” equate into ignoring OPIATE PROTOCOL of weaning a patient? I believe this is what also causes overdoses. Patients, instead of being on a monitored weaning schedule, end up suffering withdrawal so badly, they get enamored by and then hooked into an illegal situation in order to alleviate their suffering. Suddenly they have a money grubbing pusher.

Luckily, my pharmacist knows me now and trusts me. She gave me a schedule to use my left over Roxy that fit with my original prescription to help me hang on until my doctor returned. But this was not the same as the time released Oxycontin and I did suffer through a mini-withdrawal, though nothing like what I would have gone through had I had nothing at all.

My doctor returned and was as frustrated as I with his partners: “You, I do not worry about. You have a major trauma. You’ve always been responsible.”. Thanks, Doc. I asked him if we should try going down again in mgs. Nope. “We tried that already. It didn’t work, remember?”

I get such mixed messages. I cut my finger badly this summer and declined extra pain meds from the ER doctor. He was impressed I was on such a low dose after such a major back injury, and ogled my scar. “Wow!” My dentist is concerned I’m still on Oxy. My old PT thought I was an addict. My new one thinks I am UNDERmedicating. . .Sigh!

Even one pharmacist my husband spoke to (not my own) said, “Ah, she has been on this way too long.”

Really? By whose/what standards? I read again and again of people being on this for years, on higher amounts. . .One case study I read in the NEJM, the patient has been on dosages for a decade. She is one who enters a methadone clinic periodically to bring her back off of it, and then restarts on a lower amount. Bless her doctors for understanding that some physical conditions are life long intolerable situations. She is a true pain management success.

However, this last month was my last visit with my neurosurgeon. Being a surgeon, and on call, he doesn’t have the time to monitor post surgical patients longer than a year past surgery if all is going well. My pins are solidly placed; my fusion is “taking”; my myelopathy is permanent. Other than my pain, my therapy, and my fluctuating numbness, there isn’t much to monitor. So I have been released to a reputable rehabilitative physiatrist.

We worried about what this would mean in terms of my pain management.

We worried for nothing. My new Doc was surprised I was managing on such a low dose, but he listened to me closely. “Yes,” he said, “Too many neighbors think they know best. You have to accept; this is your life. You are on one of the most effective pain killers available. I’m concerned you are too worried about what people think. . .”

We explored options. I will get a TENS unit soon to try. He considered epidural shots, but since I have a lot of what is called “light touch” pain, he nixed those. I’m far enough in the fusion to try NSAIDs again. I have now been taking Cymbalta which some research indicates is effective with the sort of pain I suffer. I can already, in just a few weeks, feel a huge difference. I am not pain free, but I feel less constricted in my movement, and “brighter in spirit,” more myself. Plus, my husband and I have figured how to navigate successfully the sexual side effects of Cymbalta. Maybe soon, I can begin weaning off the Oxy. . .?

Of course, after reading all the websites and chat threads about Cymbalta, I see that I’m just swapping one stigma-saturated drug for another. I’m still going to face opposition, maybe even suspicion and fear.

But this is my point in the first place. Chronic pain can be managed safely. Yes, there are foolish people who will misuse Oxy (or bath beads or Robitussin for that matter). Unfortunately, we live in a country where everyone wants to protect us from ourselves, and judge us harshly in such trendy ways, just so Society can feel better about itself.

And that can leave too many people with unnecessary pain. Quality of life really isn’t a relative term to people in chronic pain.

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