Even bad experiences can teach us something about our chronic pain

I’d been accused of pharmacy-shopping, apologized to and then ignored, was on the brink of withdrawal, and found out I’d lost track of 21 tramadol pills.

But somehow, probably due to the power of email, we finally got on the same page and I picked up the remainder of a one-week supply on Saturday afternoon.

Almost one week later, I found myself back in the clinic’s waiting room, anxiously eyeing the clock. It was my first appointment since the whole kerfuffle went down, and I was understandably nervous. I didn’t know how much my P.A. had been told about the various head-butting and misfires, which meant I didn’t know how to approach the whole thing. Should I start off with a complaint? Should I pretend like nothing had happened and then do a “now, about last week” thing at the end?

As it happened, I needn’t have worried. She brought it up, right off the bat, after the preliminary “how are you doing?” inquiries. Now, I should be clear here: the P.A. wasn’t confrontational or rude. She was very polite, she listened actively, she took her time … overall, I had no problem with the P.A. during this visit, except for the script she’d apparently been handed right before my appointment.

First, I brought up the issue Dr. C had raised with me: that the medication should have lasted to the end of the month. “I did the math, so to speak,” I said to her, “and it wasn’t exactly as it had been represented to me. I was actually short 21 pills, which is five days plus one pill.” I went on to explain the two possible times I remembered in which the pills could have been taken.

She listened politely, and cleared her throat when I was done. Here’s what she rattled off to me next:

• “As a medical practice, we’re going to be treating tramadol just like Percocet.”
• “Tramadol is already treated as a scheduled drug by 17 states. We’re just waiting for the others to fall in. It’s just a matter of time.”
• “We’ll need you to sign a pain medication contract.”
• “Also, since we don’t have your records from your old provider yet, we’ll need you to come in every week or two weeks to get refills for the tramadol.”

Well, the hits just keep on coming, don’t they?

I toyed with the idea of tearing down her spiel, point by point (which had been read off to her by one of the doctors, I’m guessing, during a staff meeting about that horrible patient who kept calling and emailing last week…). After all, tramadol is not anything like Percocet; it’s nonnarcotic, even though it does need to be tapered off to avoid withdrawal; and seventeen states isn’t even half, and our state isn’t one of the seventeen, so what does that have to do with the price of tea in China? And don’t even get me started on pain management contracts or why I’m being held hostage by my former doctor’s willingness to fax over hundreds of pages of medical records.

We went through a pain evaluation survey, and when I mentioned muscle spasms that I’ve been experiencing lately, she offered me Flexeril. I found that really strange. If they were so worried about me and my drug use, why suggest an additional drug? One of the riskiest of risk factors in pain medication abuse is mixing drugs like pain relievers and muscle relaxers — say, for instance, tramadol and Flexeril. Yet here she was bringing it up, after all the fuss about the quantity of tramadol I was (supposedly) taking. (Truth: I am NOT complaining. One Flexeril at night has turned out to be a godsend for me in terms of guaranteeing me a good night’s sleep.)

Overall, I left rather stunned, and unsure what to think or conclude. On the one hand, there’s “every two weeks” and a pain medication contract. On the other hand, there’s proffered Flexeril and a very mild-mannered approach.

I debated with myself for a few days about what to do. I could have complained to the layperson director of the clinic’s board, but there was that possibility the clinic would simply dump me as a patient. I finally decided the best approach was to go ahead and keep the two-week appointment, but at that exam, show the P.A. my pain log and explain the nature of the hardship they were placing on me.

Two weeks later, I marched in armed with my pain log and my medication bottles, and a printout of the costs to me, compared with my limited income, to be required to come in every two weeks. The exam portion of the appointment went just as smoothly as the prior one had, and as she was wrapping up and segueing to talking about my next appointment, I said, “Well, I wanted to talk to you about that…” and prepared to go into my rehearsed speech about how I should have earned a little trust here by now …

And she cut me off and said, “Yeah, no, you’re fine. I’ll see you in a month.” When I picked up the refill, it was for a month, with a one-month refill.

Exactly what she’d given me the first time I ever saw her.

It would kind of be funny if it wasn’t so infuriating, I think. What changed between the prior visit and this one? What justified changing the two week schedule to a monthly one? I hadn’t even gotten around to showing her that I’d been responsible with medication. She didn’t have the old records yet (I know that because they asked me to sign yet another release because they “couldn’t find” the one I’d signed the first time I saw them), and that was the rationale she’d offered for the bi-weekly requirement.

So what was different?

Or am I to conclude that this clinic simply runs on whim?

Granted, there are a number of potential explanations in between those two extremes. I am likely never to know with any certainty.

What I am certain of, however, is that even in such an infuriating situation, in which things were done to me, as opposed to things I did , there are lessons to be learned:

• Keep a pain log. ALWAYS. That pain log helped me figure out that I had never taken more than the prescribed dose, and it could also have offered support for my position about the frequency of the refills, had we gotten that far. Over and above the potential use as evidence for the defense, the pain log is crucial to show your doctors how your medication helps you. (It’s got a ton of other uses, too. If you don’t keep one already, start one today. At that link, you’ll see five other ideas to help you be an empowered CP patient as well.)
• Keep a running count of your medication. Had I counted the pills periodically, I would have noticed the problem a lot earlier and could have alerted my P.A. then and there, which might have countered the suspicions of her coworkers.
• Maintain your calm. Always. I lost my temper a little bit, and I’m sure that prolonged some of the brouhaha.
• When all else fails, try putting it in writing. I have absolutely NO doubt that the first email to Dr. A was what saved me, ultimately. Writing allows you to get out the emotional angst, then go back and edit that out so that your email or letter paints a portrait of you as a rational, even-tempered, responsible (i.e., not addicted) adult.

So, there it is — the sordid tale of my experience being unfairly accused and suspected of drug addiction or, at the very least, prescription medication abuse. I appreciate the ongoing comments of support and empathy, but I also hope you pull something of value out of this story. Something like this could happen to anyone. And the horrible part of it is that you cannot prove you are not an addict. Then again, unless you demonstrate a pattern of abuse indicators, you shouldn’t have to prove anything.

Until reality catches up with that ideal, though, I’m counting my pills and filling out my pain log, every damned day.

Yep, that's pretty much how it felt...

So, after being accused of pharmacy-shopping, I was a little floored, as you can imagine.

Standing there in the Walgreens’ pharmacy waiting area, having just raised my voice considerably, I became acutely aware of people staring at me. I felt a sudden rush of shame, of all things. I’m not even sure a coherent thought or rationale attached to that emotion — just a hot rush of shame.

But what did I have to be ashamed of?

It didn’t really matter, I realized. Because to any casual observer, I was the woman screaming at a doctor’s office at a pharmacy. Clearly, I was drug-seeking and had been turned down. Right?

No, of course not. Wrong, wrong, wrong. But try explaining that to someone — anyone. The futility of defending yourself against implications of this kind was rammed home with particular force a few days later, but there and then, in the Walgreens, I decided I didn’t care what these strangers thought of me. I took my fourteen pills and went home to plot my next move.

I’d decided initially to file a formal complaint — something I’d never done in my entire life. My state’s medical licensing board’s website contained everything I needed to know to get that process started. Yet something made me pause for a moment. I wanted to know who, exactly, I was dealing with.

That’s when I found out that my provider — the one who was on vacation — was a physician’s assistant, not an M.D. That didn’t matter to me so much — P.A.s are great, in my experience. But the doctor who was covering her wasn’t just a full-fledged M.D. – she was the chief M.D. for this practice. She was the boss, in other words.

So what was going on here? Had my P.A. violated some clinic policy in giving me the prescription in the first place? Would complaining about the doctor get the P.A. in trouble? Did I care?

I actually began to consider not saying anything to anyone.

That embarrasses me now, in retrospect. Me, the health and chronic pain blogger — the woman who preaches the need for patients being their own best advocate — I was considering letting this whole mess slide without comment.

What kind of hypocrite would I be if I remained silent?

So, yeah, I had to say something. But to whom? And how?

I did a little more research on the medical licensing board site. There, I discovered something that appalled me: doctors in my state could discharge patients — refuse to treat them altogether — if the patient lodged a formal complaint!

This may not be news to anyone but me. It certainly knocked me for a loop, and suddenly I had a much bigger concern. It had taken me months to find a practice with fees I could afford. There were very few remaining options for medical care, and given my conditions — scoliosis, degenerative disk disease, fibromyalgia — all incurable, all chronic, all very painful — I couldn’t risk losing access to a doctor.

Even one that thought I was an addict? It felt at that moment like an unsolvable problem.

Then a middle ground approach occurred to me. I brought up my email program and began to write. Using the chief doctor’s email address, which I found on the practice’s website, I composed an email to her.

In that email, I laid out my medical history pertaining to my chronic pain conditions. I discussed this blog. I told her where I stand on the intrusion of law enforcement into medical care decisions. As I wrote, I was vaguely aware of how important this email was — more important than any blog post or email I’ve ever written. This email was my last hope to get the care I desperately needed.

I’ve edited out the identifying information from that email, and turned it into a PDF, so I can share it with my readers. You can get that file here (PDF link). But I wanted to share one excerpt here — after recounting the facts of what happened (which you can read in the first post, here), I wrote:

I don’t know if you can appreciate the feeling of humiliation and frustration that naturally arises when you’re placed in such a position. I felt unjustly accused and labeled, without any justification for such treatment. You have never seen me professionally, nor do we have any sort of relationship. We have never even met. Yet, simply because I called and asked for a refill for a medication that I have taken without incident for over six years, you apparently assumed that I was a drug addict.

I have never experienced this before, in over ten years of being a chronic pain patient. If I handled it badly, I apologize. Yet I maintain that I have not been treated with dignity and respect, and I have given you absolutely no reason to question the legitimacy of my treatment protocol, of which medication is an important (though certainly not the only) part.

I have maintained a website devoted to patient advocacy in the chronic pain context for several years, most recently at https://www.eustonarch.org. Even so, I confess I feel some trepidation even writing this email to you, for fear you may retaliate by dropping me as a patient from your clinic’s family practice. This sort of chilling effect is not conducive to good patient/doctor relationships or to the practice of good medicine, as I’m sure you realize. I see from the clinic’s website you are the medical director for the clinic. In such a leadership position, I am sure you would want a patient to feel free to raise a legitimate concern over his or her medical care. Yet even I, with my educational opportunities and background, and with my professional interest in patient advocacy, thought long and hard about writing this email.

I re-read that email several times, and though I was generally pleased with it, I was still very nervous about rocking the boat with this clinic. So I decided to ask for the input of two people I trust, and sleep on it myself. The next morning, having received full-throated approval from both friends and feeling somewhat stronger emotionally myself, I sent the email.

Within a few hours, I received a telephone call from the clinic’s main number. It was Dr. C, another M.D. who was apparently Dr. A’s second in command. He told me Dr. A had asked him to deal with my situation and forwarded the email to him. Right off the bat, he apologized for the miscommunication and the way I’d been treated, which earned him some goodwill from me.

The very next thing he said was, “I’ve already called in another 21 pills for you. That should be enough to get you to your appointment with Ms. B.”

Phew. “Thank you,” I said. “I do appreciate this.”

“There’s just one thing, though,” he continued, sounding hesitant. “We went back and double-checked your medical records and you should have had enough tramadol from that refill to last to the end of the month.”

It was the 21st of April.

For the second time in 24 hours, I was flabbergasted. This time, however, words failed me. I sputtered and stammered something like “I don’t think that’s right…” as I frantically searched for a calendar and my old bottle of tramadol, to match up the dates.

Pretty quickly, I realized that my addled brain wasn’t up to the simple addition and multiplication tasks inherent in figuring this out. Somehow, I managed to catch my breath, calm down, and say somewhat intelligently, “I’m not sure what happened there, but I will certainly look into it immediately and discuss it with Ms. B next week.”

He said that was fine, and he apologized one more time before hanging up.

OK, I thought, trying to calm my racing heart, this is a very different scenario. My mind raced back through the last four weeks, trying to figure out what had happened, and when. I knew I hadn’t taken more than the prescribed dosage, so when I got to the bottom of the pill bottle, I just naturally assumed it had been four weeks. But after consulting the calendar and doing the math, I had to admit that Dr. C was right: I was off by about 21 pills.

What had happened? When had it happened? This was pretty much all I thought about for the next two days. I retraced my steps mentally, going all the way back through a very busy month in which I’d moved (yet again) and coped with all the stress that brings.

Was it possible I’d taken more tramadol than I was supposed to, or been careless with the pills and dropped them, somehow? That didn’t seem plausible for a few reasons. First and foremost, I knew from the past when my old doctor raised my dose that taking more than I was used to taking produced severe waves of nausea. I hadn’t experienced anything like that. Also, we weren’t talking about one or two pills — five whole days’ worth of tramadol was missing here. Over twenty pills. That, I would have noticed if it had been accidentally dropped or spilled.

After combing back through my memory of the preceding weeks, I could pinpoint two possible scenarios: one in which I’d walked out of my motel room the day before I moved so the maid could clean it, and the other on the day I’d picked up the refill, courtesy of a ride from a fellow motel resident whom I didn’t know very well. On the way back to the motel, we’d stopped at a fast food restaurant and I’d grabbed my wallet and walked in, leaving the driver, my purse, and the pills in the car. I was gone for about ten minutes.

So I was pretty sure I knew what had happened, but it didn’t make me feel any better. If I told the doctor or Ms. B, my P.A., what I suspected, would they wonder why I didn’t file a police report? Should I report it? I couldn’t prove anything at all had happened, and wasn’t it just as likely suspicion would fall on me? I mean, if someone is of the opinion I am an addict, is anything I do going to change their minds?

What a mess.

And it got even messier, if you can believe it, the next day. I had left Walgreens with 14 pills — enough for 3.5 days. My last dose from that batch would be Saturday morning. Dr. C had called me Thursday morning and assured me he’d already called in the prescription for the remaining pills (plus seven extra, which I figured it was best not to even mention). So, I figured, if I get to Walgreens Saturday morning, I’ll be good.

Something nagged at me Friday night, though. (I only wish it had nagged at me before 5 PM…) On a hunch, I called the local Walgreens just to reassure myself the prescription was ready.

You can hear this coming, right?

They had no record of any prescription for me having been called in during the preceding 48 hours.

I hemmed and hawed a bit, but ultimately realized there was only one thing I could do: call the clinic. Again. This time, of course, it was after hours. The on-call nurse took the call and, after checking some records, told me she thought my medication was a third pharmacy which was open on Saturday. I was pretty sure that Dr. C had called it into the clinic’s pharmacy, which was not open Saturdays, but I agreed to call the third pharmacy in the morning to check, all the time thinking to myself I was going to be making yet another call to the clinic in the morning.

And, in fact, there was no pharmacy by the name the nurse had given me in my area. So, I called the clinic again. This time, a very helpful triage nurse offered to check my records and call it in herself to Walgreens. She put me on hold for several minutes, but when she came back on the line, her voice was very different — stressed, apologetic.

She’d called the P.A. on call to verify she could simply transfer the prescription, and the P.A. had read her the riot act, apparently. Here’s what I heard from the apologetic triage nurse:

Um, she said to tell you that this line is for emergencies only, and this isn’t an emergency. She said to tell you that tramadol doesn’t cause withdrawal symptoms, but that she’ll try to take a look at your file if she can sometime today and maybe call you back.

How many problems can you spot in that quote? I see three:

1. The after-hours line to the clinic is not for emergencies. That’s what 911 is for.
2. This was an urgent issue, requiring immediate assistance. If I did not get the medication I needed, I would go through terrible physical withdrawal symptoms. On top of my already-compromised immune system? Seriously?
3. Tramadol most certainly does cause withdrawal when a patient stops taking it abruptly.

I was so frustrated at this point, I almost started to cry. It was unfathomable to me that a physician’s assistant could be so blase and so uninformed. And, still, the undercurrent of accusation leaped out at me from the nurse’s repetition of the P.A.’s words: you’re an addict, aren’t you?

There was nothing more I could accomplish by continuing to talk to the nurse, I realized — her hands had been effectively tied. I simply stressed once more that withdrawal was imminent for me, and the P.A. or someone really needed to do something about this.

A few hours later, I got a call back. It was pretty much what I feared: “Sorry, can’t help you. Call on Monday.”

I was totally out of medication by now, and angry about it. Had I known this was going to happen, I could at least have reduced my dose or tapered off a little to minimize the impact somewhat.

Then my eyes fell on the laptop. Email worked pretty well the last time, I thought … so back to the computer I went. I sent another email to Dr. A and cc’d Dr. C, explaining what had happened and what I’d been told by the P.A. through the nurse.

I didn’t get a response via email, but I did get another phone call around 1 PM (about the time I usually take my second dose) from yet another triage nurse. Suspicion and attitude were fairly dripping from her voice. “Mmm-hmm,” she said repeatedly, as I reiterated my request, in that way that clearly communicates “I do not believe one word coming out of your mouth, lady.”

I just stopped, mid-sentence. I took a deep breath, and I said, “You know what? It’s clear to me that you’re not interested in listening or helping, so I’ll just reiterate this: I am not asking for more pills. I am asking for what was already called in to be transferred to the correct pharmacy. That’s all. Goodbye.”

An hour later, having heard nothing in reply either via phone or email, I tried calling the pharmacy.

My prescription was ready for pickup.

Tomorrow, I’ll wrap this up and discuss the lessons I learned from this horrible, humiliating experience.