Category Archives: Dealing With Doctors

Did Sexism Kill These Two Women?

Be warned: I’m about to make you very, very angry. Possibly enraged.

Still with me? OK, deep breath in, let it out s-l-o-w-l-y … and let’s dive in to this effed-up quagmire of outrage.

Last September, Anna Brown died in a jail cell in Missouri, alone and in agonizing pain. We know this because we have footage from the prison security cameras. We also know that for three days prior to her death, Anna complained of extreme pain in her leg and went to several different hospitals seeking treatment and relief. In each case, she was treated for an underlying ankle sprain and released by providers who said there was nothing more they could do for her. Ultimately, she ended up in St. Mary’s Hospital emergency room, where she refused to leave after once again being dismissed. So the hospital had her arrested for trespass . She was carted off to the local lock-up, where she died later that day.

An autopsy revealed a blood clot had formed in her leg — which undoubtedly caused the extreme leg pain she complained of — and had worked loose and found its way to her lungs, where it killed her.

Both the hospital and the local police department have issued statements disclaiming any responsibility for Anna’s death. The police say there was nothing they could have done — how could they know she had a serious medical problem? The hospital, believe it or not, is saying the same thing :

“Unfortunately, even with appropriate testing using sophisticated technology, blood clots can still be undetected in a small number of cases,” according to a statement released by St. Mary’s Health Center on Thursday. “The sad reality is that emergency departments across the country are often a place of last resort for many people in our society who suffer from complex social problems that become medical issues when they are not addressed. It is unfortunate that it takes a tragic event like this to call attention to a crisis in our midst.”

Anna clearly did have some “complex social problems” — the MSNBC article linked to above recounts a horrible tale of escalating tragedy that started with a tornado and ended in that jail cell last September. But let’s be clear here: Anna didn’t die because she had “complex social problems.” She died because hospital after hospital failed to take her pain complaints seriously and a lethal blood clot went undetected.

And now let’s travel to the other side of the world and meet Elizabeth Howan of New Zealand, who died from undiagnosed colon cancer after complaining of severe abdominal pain for six years . Her family is, understandably, also outraged, just as Anna Brown’s family is. Ultimately, she was told her pain was “all in her head” and was even diagnosed “probably schizophrenic.”

I’ll say it again: colon cancer. No MRI or full body scan was ever performed.

I’ll be the first to admit that we may not know all the facts on either case. But I will state this categorically and without hesitation: I absolutely believe that in both cases, their pain complaints were either ignored or significantly discounted, and I believe that happened quite possibly solely due to their gender. One of them was written off as a schizophrenic. The other was possibly dismissed as some drug-seeking homeless woman and arrested.

In Ms. Brown’s case, the hospital’s hand-washing dismissal of their own culpability is particularly infuriating. Yes, blood clots are hard to diagnose in some cases. But the critical factor here was that the hospital’s employees discounted Brown’s pain complaints; we know that’s true because they had her arrested to get her out of the ER, and had they taken her complaints seriously, that would never have happened.

Now, let’s pretend these same two events happened to men. Would the outcomes be different? I submit they very well may have been, for one simple reason: when it comes to being taken seriously by our medical care providers, the two genders are often treated wildly disparately.

If two people — one male, one female — with the same demographics (age, weight, height, social status, etc.) come into the same ER complaining of pain in the same part of the body, and each rates the pain as “6 out of 10,” the man tends to be viewed as downplaying his pain, while the woman tends to be viewed as exaggerating her pain.

I don’t know if any studies have been done on this phenomenon — I hope somebody looks at it, because I suspect it’s far more rampant than even the anecdotal evidence I hear would suggest.

So, did sexism play a role in these women’s deaths? Would a more prompt response for either have saved their lives? I don’t know – but I know at least Ms. Howan wouldn’t have died viewed by the people who should have been helping her as a schizophrenic, and Ms. Brown wouldn’t have died moaning alone in a jail cell.

And maybe I wouldn’t be so freaking outraged right now.

Does Pain Make Us Scared to Go to the Doctor?

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So I was speaking with a friend the other day. This is a friend who has recurrent acute pain, not chronic pain, just to be clear. But it’s still relevant to the discussion we started here the other day about how the war on drugs has created this adversarial relationship between doctors and patients.

She’s been trying to get a diagnosis of her pain, which recurs periodically and is pretty severe–severe enough to put her in the bed for several hours when it hits, anyway–for over a year now. After a series of tests revealed lots of little things but no smoking gun, she had to stop the process when her COBRA’d insurance coverage ran out in November. She’ll be covered again in May or June, but until then, she has to carefully manage her access to doctors because of the expense.

So, quite by accident, when she had two root canals in the space of 48 hours and was given tramadol (yep, my old friend) to manage the mouth pain, she found out that the tramadol actually worked on her recurrent acute stomach pain, too. In fact, it’s the only thing that’s ever helped. She’s deathly allergic to morphine and its pure derivatives, so a whole class of pain meds is out of bounds for her. Finding tramadol was for her, as it was for me, a life saver.

Except these pills came from a dentist.

And at the time of our conversation a few days ago, she had experienced two severe bouts of the abdominal pain in a week. And she had exactly four pills left.

She was panicked. That’s why she’d called me. She realized she wasn’t thinking clearly but here’s how she explained what she was thinking:

So, let’s say I go to the doctor. I ask for more tramadol. He says “no.” Because there’s nothing else I can take, he says “take Tylenol” — which we already know doesn’t work for me. And now I’ve got the expense of a doctor visit, no pain relief, and I’ve been labeled a drug seeker.

I get it, and I told her so. Then I suggested she go ahead and make the appointment now, while she had those four pills left, so she could show the doctor she’d carefully rationed the pills and used them only during her flareups. That she was, in fact, not a drug seeker. She agreed that made sense.

This is what it comes down to, dolls. We’re now at the point where we anticipate the suspicion and a lack of medical care.

Doctors, are you listening? We are afraid of you. More specifically, we’ve become afraid to trust you, to seek medical care, for fear that you will jump to unwarranted conclusions.

Now, true, a lot of the responsibility for this falls on us — your patients. And we’re doing what we can to educate ourselves, conquer our fears, and reach out to you.

Are you willing to meet us halfway here?

This Doll’s Story – Part 3: Painful Lessons and a Mini-Rant

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Green chalkboard with erasers on wooden stand

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.

This Doll’s Story: Part 2 – What We Have Here Is a Failure to Communicate…

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Frustrated woman on the floor next to laptop

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:

The after-hours line to the clinic is not for emergencies. That’s what 911 is for.
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?
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.

This Doll’s Story: Part 1 – Doubting Doctors and Terminal Relationships

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[Note from Annie: I know I promised this post over a week ago. Honestly, I wasn’t sure how to proceed. I was leery of putting this story “out there” because of the potential repercussions. That should make a little more sense after you’ve read the following.]

It finally happened to me.

After twelve years of coping with chronic pain, and for the first ten and a half of those years being blessed with a wonderful doctor who was a supportive member of Team Annie, I finally came head to head with the chronically pained’s worst fear: a suspicious doctor.

Only in my case, it was more like a suspicious team of providers. And it made me feel truly, totally crappy. And angry. Very, very angry.

Here’s what happened.

I became a client of a new practice about three months back, after I relocated to my new home. The clinic is a general practice, and its fees are based on a sliding scale (necessary due to the fact I’m uninsured).

At my initial visit, the provider gave me a one-month prescription for tramadol with a single refill, which I got thirty days after the first visit, without incident.

About a month ago, I realized I was getting close to the end of the bottle on the refill. I had about twelve pills left the Sunday I realized this, so I called the next day. I was told the phone lines were damaged by the construction crew building the new clinic, and I might want to call again the next day to make sure the message went through if I hadn’t heard anything.

I hadn’t, in fact, heard anything so Tuesday morning I called again. This time, I was directed to the triage nurse, who told me she’d get the message to the doctor who covering for my provider, who was on vacation. I heard nothing the rest of the day.

Wednesday morning, they finally called me back. The nurse delivered the message that the covering doctor “refused” to refill the prescription. I would need to see my provider. And she wasn’t coming back until the following week. I made the appointment for exactly one week later and then turned to the “in the meantime” problem.

I should say that I was a little tense at this point but wasn’t truly surprised at this development, nor was I really alarmed. I simply asked the nurse to ask the doctor for a one-week supply to get me through to the appointment I’d just made.

Let me interrupt with this observation: One thing is clear. The whole “nurse as relay messenger” system? Sucks. It’s inefficient and causes major problems, as will become clearer in a few paragraphs.

I waited several hours. No phone call. Complicating things for me at this point:

I was about to be out of pills altogether.
I had no readily-available transportation. My car wasn’t driveable and it would cost over $20 to get to the clinic in a cab. (As it turns out, there was public transportation available, but I didn’t know that at this point.)
I could get to a drugstore across the street, and could afford the cost of the medication there. But it required the assistance of a friend who had limited availability. I was about to lose my access to that ride, as well.

So, I called back twice. I told the nurse who took the call each time, briefly, about the transportation problems, as explanation for why it was crucial we get the issue resolved promptly. It was either “get the refill now” or “go through withdrawal.” Each time, I spoke to a different nurse and so had to go through the whole spiel all over again which is an incredibly inefficient way to communicate.

Another interruption: I am sure that long-time readers know the difference between addiction and dependence. For newcomers, I’ll be brief – addiction is an abnormal psychological condition, while dependence is a totally natural physical chemical reaction to long-term use of certain pain medication. Tramadol is not a narcotic, but it acts in some ways that are similar to some opiate derivatives. One of those similarities is that long-term patients who have become dependent on it will go through physical withdrawal symptoms when they suddenly cease taking it. The proper medical approach is to wean off gradually over time.

Ultimately, the clinic called back and asked what pharmacy I wanted them to use. I took this as a sign that the prescription was going to be called in as I had requested. I mean, I’m pretty sure that’s a reasonable interpretation, right?

I gave them the name of the drugstore I could get to (the first of two times I’d tell them this). I was able to get to the drugstore, thankfully, and I waited for the prescription. As I sat down in the lobby, it had been about 20 minutes since that last call, so I assumed I’d have no more than fifteen or so more minutes to wait.

An hour later, I finally called the clinic again. I was assured the covering doctor was going to call it in “to our pharmacy.” “No, no,” I said quickly, “remember, this is to go to Walgreens.”

Right, the nurse said. Walgreens. And you’ll get fourteen pills…

“No, no, remember, I take two pills twice a day. So that’s four pills a day. A week’s supply is 28.”

Ohhhh, the nurse said. I’m going to have to talk to the doctor …

Thirty minutes after that the pharmacist still hadn’t been called. I called back again to the clinic. This is what I heard:

Yes, I did speak to the doctor about that, and she said she’s not going to call in any more than fourteen. And by the way, are you sure you’re not getting this some place else?

At first, I had this split-second reaction of “no way I just heard what I thought I heard. Surely I made a mistake.” So I asked the nurse to repeat herself.

She did.

And — well, I’m a little embarrassed to admit this but I kind of lost it. Right there in the lobby of the Walgreens pharmacy. I know my voice rose, and I remember the words “malpractice” and “medical licensing board” came out of my mouth.

And I meant ’em, every single syllable.

I paid for my fourteen pills, and I went home, furious and incredibly offended. What on earth had given these people the right to treat me like an addict? They had never even met me. They had no reason to suspect that I was misusing prescription drugs. All I’d done was call in a refill on a medication I had been taking for over seven years without incident. And based on nothing more than that, I’d been labeled a probable addict.

At least, that’s what I thought at the time…

(The rest of the story will continue in tomorrow’s post.)

Resource Helps ME/CFS & Fibromyalgia Patients Find Good Doctors

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I’ve just updated the resources pages for Fibromyalgia and ME/CFS with a new entry: the Co-Cure Good Doctor Lists.

This page lists doctors suggested by other patients with fibro and ME/CFS (or chronic fatigue syndrome, as some still call it), by U.S. state and not-a-few other countries. The theory is similar to Angie’s List, the site that lists service providers with customer-written reviews — the doctor who is referred by other patients is more likely to actually be a good choice for women with these conditions.

That said, some of the doctors on the lists were self-referred — in other words, they submitted their own names with the affirmation that they were “fibro-friendly” or “ME/CFS-friendly” and had significant experience treating patients with these illnesses. All self-referred doctors have a note to that effect beside their entries.

There’s a reason I found and decided to add this resource to Euston Arch, and it’s not a pretty story. But it’s a story that needs to be shared. Share it I will — tomorrow. (It’s taken me several days to process what happened sufficiently to write about it cogently.)

‘Til then, take a look at the Co-Cure Good Doc list, and see if your primary care provider is listed — or if, perhaps, there’s a better choice for you out there in your community.

New Diagnostic Criteria for Fibromyalgia

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Well, this kind of took me by surprise.

It seems that while I was watching Grey’s Anatomy and Lost finales, and before that getting laid off and starting a new business, the American College of Rheumatology came up with alternate diagnostic criteria for fibromyalgia diagnosis.

Tender Points Versus the New Criteria

Up until now, the main criteria was the direct “tender point” palpation test, where if you experienced pain in 11 or more out of 18 specific tender points, plus widespread pain for at least three months, then you won the fluffy pink stuffed rabbit.

Now, it seems, the ACR has proposed an alternative diagnostic methodology. The new method consists of a multi-part inquiry into pain and other symptoms over the past week, in addition to the usual “for at least three months” and “nothing else explains your symptoms” requirements.

There are basically two sets of scores — the WPI and the SS. The WPI (Widespread Pain Index) is based on nineteen separate body areas (upper left arm, lower right leg, lower back, etc.) and your experience of pain in those areas over the prior week. The total number of these areas in which you’ve experienced pain is your WPI score.

Next, the inquiry looks at your Symptom Severity (SS) score. This is a range from 0 to 12, and is calculated by your assessment of the severity of your fatigue, waking unrefreshed, and cognitive impairment symptoms, plus how many other symptoms out of a prescribed list you’ve experienced. The diagnosis looks at both sets of scores – you need a certain score on both matrices in order to receive the FM diagnosis.

Potential Impact of New Fibromyalgia Criteria

FMNetwork has a somewhat critical take on the new methodology along with a fairly short survey you can take to see if you would fit the new diagnostic criteria. It took me about ten minutes to complete, is confidential (no identifying information other than age and gender are required), and gives you a much clearer idea of what the new criteria are all about than simply reading a blog post. The link to the survey is at the bottom of the FMNetwork post linked to earlier in this paragraph.

There is also a PDF copy of the survey you can print out and take with you to your doctor.

So what’s your take on the new criteria? I understand the skepticism voiced in the FMNetwork blog post — that this might dilute the “meaning” of fibromyalgia, that it could lead to more diagnosed cases which could further undermine credibility … I have to disagree.

It seems to me that we’re no longer simply talking about pain when we discuss diagnoses, but the entire range of all of our symptoms. I don’t see how that can be anything other than a positive development. Pain is always a subjective topic — your “2 on a scale of 1 to 10” might feel like my “8,” for all we know — and that’s one reason, I think, why it’s always subject to such skepticism from others. But when we’re talking about things like (sorry) diarrhea and constipation, blurred vision, bladder problems, cognitive difficulties … this paints a far more accurate picture of what it means to have FM.

Of course, it’s far too early to make any grand pronouncements on this topic right now. It’ll take medical providers using the new criteria for some extended period of time before we can say with certainty what effect it will have.

Grateful hat-tip to Deanna’s Blog for the head’s up on this.

Six Secrets of the Empowered Chronic Pain Patient

What Does “Empowered Patient” Mean?

It might be easier to start with defining the opposite of “empowered patient” — what I’ll call the disenfranchised patient.

This is someone whose state of health and well-being have been completely handed over to the responsibility of others. She’s thoroughly dependent on what the doctor says. She doesn’t ask questions. She doesn’t understand her own condition or what her options are.

Like a kindergartener, she simply follows the instructions of the authority figure who tells her what to do — usually a doctor, sometimes a well-meaning friend or family member, or even a specific website.

Compare that patient to the empowered patient. Here’s someone who treats her medical care as a team task — and she’s the captain of that team. She listens to the advice she’s given but she makes her own decisions about her health care and pain management plan.

Most importantly, she’s a fully invested and active partner in her own well-being.

The Seven Secrets of the Empowered Chronic Pain Patient

What do these empowered patients have to teach the rest of us?

I’ve done a lot of research on the subject, spoken with many patients who fit that description, and come up with a list of six “secrets” that they understand completely — secrets that aren’t common knowledge, but that can turn anyone into a truly empowered patient.

1. Do Your Own Research Into Your Chronic Pain Condition

The empowered chronic pain patient knows that she’s just as capable of understanding her condition and keeping on top of recent developments — maybe even more so — as her medical team. After all, her doctors have lots of patients with many different conditions; the patient has one (or perhaps a few) conditions to keep track of. She doesn’t abdicate the responsibility for maintaining that information to her doctor.

However, we all know too well that there’s a real problem with much of the health information available on the web — much of it’s patently wrong, some of it’s even dangerous, and it’s really tough for the lay person to figure out which sources are trustworthy. How can you tell the difference between a reliable site and one that’s better ignored?

Start with the .gov and .edu sites. These government and university research sites are generally considered by most health care experts to be the most reliable. For the government sites, they’re also typically written at a level that’s easier to understand for the lay person, because the audience of those sites is generally the patient herself.

Once you have a basic understanding of the parameters of your condition, you can expand your knowledge by searching for other sites dedicated to your condition. An excellent resource is WebMD, which has several condition-specific centers on its site where other patients share tips, resources, and new information. (I’m a member of the Fibromyalgia Exchange, one of those centers, and I can personally attest that it’s a terrific group, providing support as well as information.)

Another tip: set up Google Alerts including your condition’s name to deliver news about your illness straight to your inbox. This is an excellent way to stay up to date with recent developments.

2. Demand — And Give — Respect to Your Pain Management Team Members

Especially for conditions like ME/CFS and fibromyalgia, which are plagued by a small but vocal minority of medical professionals who doubt the disease’s very existence, it can be difficult for chronic pain patients to foster solid, helpful relationships with the doctors they see regularly.

For many of us raised to accept a doctor’s words unquestioningly, it can be difficult to insist on being treated with respect.

The bottom line, though, is this: if your doctor doubts your illness exists, or thinks it’s “all in your head,” how can he or she treat you properly at all? You’re just wasting his or her time, as well as yours. Find another doctor, one who’s better equipped to treat your condition.

Insisting on respect doesn’t mean treating the physician poorly, however. Just as with all our relationships in this world, the best doctor/patient relationships are fostered on mutual respect.

You can read further tips on developing a better relationship with your treating physicians here.

3. Prepare for Visits to Your Doctor(s)

We’re all guilty of it at some point or another: mumbling our way through a doctor’s visit, then realizing when you get back in your car that you forgot to ask the doctor about eight important questions and tell her about two new symptoms.

The culprit here is our failure to prepare for each and every visit as if it were a crucial business meeting. You wouldn’t go into a meeting with your boss for your annual review unprepared, would you?

Similarly, you should take the time before each impending visit to plan exactly what you want to get out of that visit.

Specific suggestions:

Keep a list of questions. Start this written list as soon as the last visit is over, and add to it periodically. Before your visit, review that list and select the most important issues to discuss.
Bring a tape recorder or a friend. It’s all too easy to forget every single word that’s exchanged between you and your doctor when you’re focused on trying to participate in the conversation. Instead of delaying things and interrupting the flow of conversation with written notes, consider taking a tape recorder or a friend into your appointment. Turn on the recorder (ask permission first!) or tell the friend to take notes, then you can focus on communicating with your physician.
Bring a summarized version of your pain log. (See secret #5 for more information on this.) Being able to show your physician the ups and downs of your pain, along with any patterns you’ve been able to discern can greatly improve her ability to make the correct adjustments to your pain management plan.
Take printouts of research or new treatments you want to ask about. Doctors are only human, and it’s easy for them to get distracted or not pay enough attention (or just not understand) what we’re saying when we ask about new research or developments into our conditions. During your periodic research (see secret #1, above), collect printouts of those points you’d like to ask your doctor more about, especially if it concerns a new treatment protocol. If she doesn’t have time to review it fully during your visit, you can leave the printout with her and get back in touch later.

4. Kill The Doorknob Moment Dead

There’s one point that comes in almost every doctor’s visit when most doctors say the patient’s goals go way off track. It’s also the moment that’s responsible, to a large degree, for the backlog of patients in the waiting room. It’s so common that doctors even have their own name for it: the doorknob moment.

You’ve experienced this yourself, undoubtedly: the visit’s almost over, the doctor’s given you marching orders, her hand is on the doorknob to open the door and leave, and you say “Oh, by the way, doctor, there’s this thing I wanted to ask you about …”

And almost invariably, that little thing that the patient almost forgot to ask? Is really the most important thing she could ask. It’s what’s been bugging her most. It may even be why she made a special appointment.

Keeping and bringing your list of questions to the visit will go a long way to killing this moment, but the empowered patient takes it a step further. She prioritizes her list and asks those questions right up front. This sets the tone and agenda for the visit, and gets the doctor’s mindframe where it needs to be (“OK, she’s concerned about a, b, and c, and a’s the most important thing for me to focus on right now…”).

Simply put, you’ll get better care by killing the doorknob moment dead.

5. Keep a Pain Log

Arguably the greatest tool in your arsenal against chronic pain, the pain log is simply any collection of data that you maintain on an ongoing basis about the key aspects of your condition. Empowered patients use the pain log to help their doctors pinpoint potential patters in their pain experience. (Wow, that was a lot of alliteration for one sentence.)

At its most basic, a pain log would simply track pain level and quality over time. For even more control over your treatment options, however, consider including notes on other aspects of your life that can impact your pain: sleep, diet, exercise, mood, stress level, etc.

The pain log can be “digital” or “analog.” I formerly used a moleskine, but have moved to a text document on my computer, perpetualy docked to my desktop. When I’m ready for a doctor’s visit, I simply pull it up and print out the changes since the last visit.

There’s also a new site called Relief InSite that appears to be a web-based version of the pain log. It also allows your doctor to log in and view your notes, which has a whole host of potential benefits. (NB: If that sounds like something you’d be interested in, please give it a try and then drop me a note here or on Twitter to let me know what you think so I can write about this site in more detail later, OK?)

Whatever format you choose, the two main components of a successful pain log are:

Keeping it consistently over a period of time; and
Being completely, brutally honest in it.

6. Trust Your Instincts

Finally, the single most important secret that an empowered patient knows is to pay attention to that little nagging voice inside. Accounts of women who insisted something was wrong, only to find out from shocked ER staff later that they were having heart attacks, are all too common, unfortunately.

As long as you haven’t been diagnosed as a hypochondriac, your intuition can be a powerful ally in getting the right diagnosis. Somehow, our bodies know — and tell us, through often-subtle physiological clues — when something’s seriously wrong.

It’s important not to get carried away, of course — headaches are usually not indicative of brain tumors, but stressing about it too much can wreak serious havoc on your health — but if you really feel something’s wrong, don’t settle for a dismissal. Get second opinions, insist on tests, and above all, try to stay calm.

Finally, if you feel you’re not able to be your own advocate, then find an extroverted friend or family member who’s willing to be your advocate during visits that are likely to be contentious.

Empowerment Is Within Your Control

By learning and putting into practice these six secrets of the empowered chronic pain patient, you can improve both your quality of care, as well as your quality of life.

Above all, remind yourself — out loud, if you need to, and often — that you are priceless, and therefore worthy of the absolute best in medical care.

Put forth the effort to become your own team leader. I guarantee you the results are worthwhile.

Are you an empowered patient? What secrets or tips would you share with other chronic pain patients to get the most out of their health care programs?

What Does Health Care Reform Mean For Fibromyalgia & Other Chronic Pain Patients?

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After much debate (some of it pretty damned vicious), President Obama finally signed into law the new health care reform legislation that will change the medical landscape for millions of Americans. But what does this controversial and fairly confusing legislative package mean for those of us with chronic pain conditions?

I should start with a warning: I used to be a lawyer. That means: (A) I no longer am a lawyer; (B) nothing herein is legal advice; (C) I may or may not have any special advantages when it comes to deciphering Congress-speak in this matter. So, read as much on this from other reputable sources as you can before you start making plans and decisions based on my interpretations of the reform bill, OK?

That caveat out of the way, let’s look at the bill version that was finally passed and sent to the White House for the President’s signature …

Facts and Figures on Health Care Reform

The numbers vary from source to source, but it looks as if about 32 million Americans will now have a better chance of getting insurance under the new law. Note: that doesn’t read “will have insurance” but “will have a better chance” of becoming insured. That’s a crucial distinction.

The new law mandates coverage for all but a small portion of Americans. Those excluded would be folks who seriously cannot afford it, Native Americans, and those who object to insurance on religious grounds.

2014 is the key year here: that’s when the majority of the provisions become effective. However, until then there are stop-gap provisions that will also impact folks without insurance. Of particular interest to chronic pain patients is the “temporary high-risk pool” provision.

Temporary High-Risk Pool and Pre-existing Conditions

Once the key provisions go into effect in 2014, those with pre-existing conditions (such as fibromyalgia and other chronic pain conditions) can no longer be denied coverage on that basis. Until then, starting 90 days from now, we can tap into the temporary high-risk pool for coverage, with subsidized premiums. Cost-sharing is limited to the figures applicable to the health savings account provisions, or $5,950 per individual and $11,900 per family (2010 figures; these are adjusted periodically).

Health Care Exchanges

The law now provides for state-based non-profit-administered “exchanges” which, if I’m reading this correctly, will allow individuals to buy into plans in groups of 100 or more.

This might be very beneficial for those of us who eke out our livings through self-employment, and for whom historically insurance has been difficult to come by, and prohibitively expensive when available (as compared to the group plans a W-2 worker’s employer can provide).

Overall Cost Restrictions

The bill also puts some caps or limitations on health care expenses. For instance, those with incomes equal to or less than 400% of the federal poverty line will have their out-of-pocket expenses capped at a certain amount.

More Information

For more information, including a look at how the new law will impact the 15 million Americans who are unemployed, see this article in Newsweek online.

Edit: Here’s another good review of the provisions — basically same information as in this post but some additional commentary you might find useful.

Calling All Patients: I Want Your Bad Doctor Stories

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I don’t know about you, but I don’t generally pay others to abuse me.

Now, I have the greatest respect for the medical profession. My own mom (rest her soul) was a lifelong nurse and nursing teacher, and I’ve been blessed with several good doctors. I’ve got nothing to complain of, currently.

But not all fibromyalgia and chronic pain patients are so lucky. And I think it’s high time we blew the lid off the big not-so-secret secret behind dealing with chronic pain: sometimes, our biggest detractors wear white coats.

Call it the God complex. Call it institutional arrogance. Call it personal fear or ignorance or – heck, call it Bertha, if you like. But whatever the cause, we deal with bad doctors and nurses all the time.

Whether it’s the general practitioner who thinks you’re making your pain up, or the nurse who’s consistently rude to you in the exam room when you ask for a medication refill, those stories need to be told, and I’d like to tell ’em here.

So send me your bad doctor/bad nurse stories — you can find me on Twitter, or use the contact form here on this site. Be sure to tell me how you dealt with the problem, if you did deal with it, or whether you changed doctors as a result of this encounter.

One request: please leave out any identifying personal information for the person in question. When I share the stories, I’ll redact all of your personal info as well, of course. If you want to be really anonymous, just leave me a comment to this post.

Let’s get this epidemic problem out of the dark corners and bring it into the light, where it belongs.