Category Archives: The Unbelievers

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

[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.)

Canada Doesn’t Fund Fibro Research – But Won’t Take Fibromite’s Donated Blood?

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OK, what’s up with this, Canada?

A lot of that stems from the fact that fibromyalgia, chronic fatigue syndrome and Multiple Chemical Sensitivities aren’t recognized as chronic illnesses, Bested notes, and consequently receive no funding for research. Nor do they figure well in resident training.“At the government level, they’re invisible.”

Yet last month, Canada became the first country in the world to ban blood donations from people diagnosed with chronic fatigue syndrome in the wake of groundbreaking study published in the prestigious journal Science, advocates point out. U.S. researchers discovered a human retrovirus, XMRV, that could be linked to CFS. The move was a precautionary measure as it’s feared the virus, which closely resembles the AIDS virus, could be transmitted through blood transfusions. Australia followed suite a few weeks later.

“We can’t get funding because we’re not considered a chronic illness, and yet they won’t take our blood,” Saraiva says.
“We’re dealing with powerful, wealthy insurance companies who have a bottom line,” Samosas says. “A lot of people have had horrendous cases in court with CPP and fight for years.

Clinical depression often blamed before diagnosis of fibromyalgia, Healthzone (Canada)

Seriously, what gives? How about we drag you kicking and screaming into the 21st century? With all the talk about how the Canadian system is a model national health care policy, can we not live in the Middle Ages here?

I seriously doubt the U.S. is much better in its level of funding of fibromyalgia and other chronic pain research but here’s the thing: chronic pain costs money. A lot of it. Add up the doctor’s bills, the prescription costs, the lost time and productivity for businesses whose employees suffer from it … you’re looking at a big number.

Fibro and chronic pain conditions are not a “lifestyle choice.” They’re debilitating diseases, and it’s time to stop treating those of us with these conditions as if we’re lying liars who lie and just want to sit on our asses all day eating bon-bons. I don’t know a single fibro sufferer who wouldn’t give her or his right arm to be able to work and live like they used to again.

So shut up, already, and be nicer to us. It could be you in this position one day.

Fibromyalgia and Dr. Unbeliever: A Horror Story From Texas

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@PaperBackChic on Twitter alerted the world to this story, which is linked to off the main FMS Community page.

I read it, and was appalled — you will be, too. (Or should be.) I also have questions, but first, let’s recap. From the page, which is titled “Fibromyalgia — A Horror Story,” we gather the following salient points — the names have been changed, according to the unnamed author of the piece:

Rita, the patient in question, has been diagnosed with fibromyalgia, a thyroid condition, and diabetes. She also has IBS (irritable bowel syndrome, which is often associated with fibromyalgia).
She approached the doctor in question (“Dr. Jones”) for treatment of the thyroid condition. However, Dr. Jones also knew about her earlier FMS diagnosis.
On an early visit, despite exhibiting some symptoms suggestive of cardiac issues, the doctor sent her husband to get an OTC medication. Yet when the husband himself showed up at another point sweating profusely, the doctor immediately ordered several tests (I’m assuming to rule out cardiac trouble).
The doctor told Rita that his best friend has ALS and that Rita had no right to “whine” about her problems, the clear implication being that ALS is a real disease but FMS … isn’t?
Despite several therapists and psychologists concurring that Rita had no psychological issues, other than the mild and occasional depressive episode that accompanies nearly all chronic pain conditions, Dr. Jones repeatedly insisted that Rita had some sort of psychological disorder. This insistence apparently was the primary focus of her visits with this doctor, instead of the thyroid treatment she had sought from him.
Ultimately, after an abusive visit, Rita lost her cool and said “Maybe I should stop taking my medications and die. Then maybe an autopsy would prove that I am sick!”
That was all the ammunition this doctor needed to have Rita held on a 72-hour suicide watch in a local mental health facility based on his insistence that she was bipolar and a danger to herself and/or others.

I won’t go into the horrors of that situation. Anyone with half a brain can imagine. All I can think right now is, “Here we go again.” But before I rant, a warning to all chronic pain patients — and a “Yeah BUT” to that warning, which is just as important — so promise me you’ll read both, OK? OK — here’s the warning:

If you say ANYTHING in front of a doctor that could potentially be interpreted as a threat to kill yourself, or harm anyone else — even if it’s said off the cuff, or in jest — you could be subjected to a hold just like Rita was.

Just don’t do it. Ever. Now, here’s the Yeah BUT:

If you are feeling suicidal, you need to tell your therapist or doctor immediately and ask for help.

I hope that makes sense. Where Rita went wrong was in assuming that Dr. Jones would act rationally, even after his refusal to treat her for the problem she came to him for — the thyroid treatment — made it patently clear that he was not rational.

Rita should also have bolted the minute this idiot opened his mouth to denigrate her, or her condition. The second he didn’t at least make an inquiry into a possible cardiac issue with her symptoms.

Am I being too tough on Rita? No, not at all — I hope it’s clear to all that the problem here was Dr. Jones, not Rita.

But here’s the thing, friends: There are LOTS of Dr. Joneses out there, and they cannot be allowed to treat us. As soon as you know or even have reason to suspect that you’ve found an Unbeliever, you need to leave.

I know it’s unfair. It’s putting the responsibility on you, the patient, instead of (pardon me) the asshole who’s causing the problem. You shouldn’t have to go find another doctor to treat you like a human being with rationality and respect.

But you do, and you must.

Guys — by which I mean ladies and gentlemen and children of all ages and their parents — we can no longer afford to mollycoddle these medical pretenders providers. I used to think the unbelievers were a small minority — a vocal one, to be sure, but small enough to ignore.

Then came the NY Times article questioning the “realness” of our very real disease. Then came another piece, this one by CNN. And now, with Rita’s story — with the story recently of a woman suffering from FMS who will go down in history as the first person in the UK with “fibromyalgia” as the cause of her death, all because her Dr. Jones thought she was crazy, too — well, folks, the conclusion is inescapable:

We are at war.

And it’s time we (by which I mean all chronic pain patients ) started getting a little more assertive about our rights and our health.

Savella, Third FDA-Approved Fibro Drug, To Be Released Earlier Than Planned

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Fibromites will have a third FDA-approved choice next week, earlier than anticipated. Savella(tm), the new drug, is produced and licensed by Forest Laboratories, Inc., and Cypress Bioscience, Inc. Originally scheduled for release in March, following a January 2009 approval decision, the manufacturers went back to the drawing board for what was described as a minor cosmetic change (i.e., they didn’t like the way the pill looked). That change also had to receive FDA approval, and release was anticipated sometime in the middle of the year.

But the approval came more quickly than expected, and shipment of Savella is scheduled to begin this Friday, with availability in pharmacies as early as next Monday, April 28, 2009.

About Savella

Savella is the tradename for milnacipran HCl. It’s classified as a selective serotonin and norepinephrine dual reuptake inhibitor; both neurotransmitters are believed to play some part in the biochemical dance that becomes our fibromyalgia symptoms.

Safety Concerns

As milnacipran is similar to antidepressants and other medications prescribed for psychiatric disorders, there is some concern over an increase in suicidal thoughts, especially in individuals under the age of 24. Contraindications include simultaneous MAOI use (or use within a 14-day period following the last dose of the MAOI) and patients with uncontrolled narrow-angle glaucoma.

Another Times Article?

Is perhaps now a good time for another NY Times article taking back all the crap about this being a “real” disease? How many drugs do you need on the market to establish that this is not some modern-day hysteria (I’m looking at you, Elaine Showalter) or BS need for attention?

Of course, the unbeliever responds: “No number of medications will convince us, because all it means is that there are a lot of you out there deluding yourselves, and the pharmaceutical companies don’t care where their bucks come from.” All right, that’s fair enough, I suppose. But here’s my question: what on earth gives you the right to decide that anyone else’s pain is not “real” in the first place?

Nobody (well, nobody sane) thinks a cancer’s patient isn’t real. Yet, until the X-ray and later the MRI and PET scan technologies were commonplace, no one could “see” the cancerous cause of the pain inside the body — at least, not until the autopsy. And yet, with fibromyalgia and CFS, we have a whole host of otherwise intelligent, educated men and women ready to dismiss the reports of thousands of other intelligent, educated men and women simply because … why, again? You can’t “see” a cause?

You mean you can’t see a cause yet .

And even that’s not the whole truth, for of course there are observable, measurable differences in the fibromyalgia patient’s biochemistry.

But, no. We’re the cranks. We’re the crackpots. We’re the ones who need attention. Frankly, I think it’s quite the other way around. I think the unbelievers are the ones who are a little unbalanced — or at the very least, incapable of rational thought — and greatly in need of some attention. I think that’s why they go against the great majority of doctors and researchers who understand the quite simple truth: that even when we don’t understand a disease’s origins, cause, or mechanisms, the fact of our lack of understanding has nothing to do with whether the disease exists.

In other words: just because you don’t understand fibromyalgia thoroughly, it doesn’t mean fibromyalgia isn’t real.

Other Resources

More information on Savella from the manufacturer

Here’s another article on Suite101 about Savella.

Did a UK Woman Commit Insurance Fraud By Claiming Fibromyalgia?

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I have a Google news alert for “fibromyalgia or chronic disease or chronic pain” (and some other search terms related to this blog’s purpose), and that’s the only way I would have ever found the following snippet from a site called No Claim Discount. This seems to be a news site in the UK for the insurance industry.

Joanne Kirk of Preston, is suffering from, what has been deemed as, a landmark judgement against her for insurance fraud. Initially attempting to claim £800,000 in compensation after a rear-end shunt in 2001 the claim was finally settled for £25,000. Of course, such a case will involve a level of investigation and it seems Ms Kirk had no inkling that insurance fraud investigators might be filming her driving, walking and carrying shopping despite her claiming she had developed fibromyalgia, a condition which causes chronic pain in muscles and ligaments. She originally stated she required crutches or a wheelchair to get around and could only walk a few steps without the assistance of another person.

Unlike most insurance fraud convictions which see defendants given no more than a slap on the wrists, Joanne Kirk was fined £2,500 and ordered to play the insurance company’s legal costs. The tables were certainly turned as her legal protection insurance was revoked leaving her with the cost of the entire bill – somewhere in the region of £125,000.

Realizing that:

We don’t know the full story from this blurb, much less have any of the details from the trial itself;
We don’t have Joanne’s side of the story; and
This piece, if not the site as a whole, is obviously biased in favor of the insurance industry (it’s titled in an entertainingly sexist way “Women, Their Handbags, and Faking It For Money”)

… we just don’t get enough information from this piece to draw any kind of conclusions. But I can tell you my first reaction upon reading that Joanne was filmed walking and shopping after claiming fibro: So what?

Is this just a case of not understanding fibromyalgia? That’s certainly a possibility. In my own experience, I frequently have days that are much better than others, in which tasks like shopping and going to the park with my child are an absolute breeze. I also have days in which I can’t get out of bed, and days that fall anywhere in the middle.

Of course, the piece also states that Joanne had told someone involved in the case that she could only get around with the aid of crutches or a wheelchair. Still, I have to wonder if what she actually said was something more along the lines of “when I have a flareup, I need crutches or a wheelchair.”

The truth is that we don’t know — we just don’t have enough information here. The only conclusion I can draw is that whoever wrote this article is a bit sexist, or at least felt comfortable pretending to be for the sake of being entertaining, and that s/he has a lot of disdain for Joanne, if not fibromites as a whole.

I’m also concerned that, even assuming Joanna did commit willful fraud here, this story will just give more ammunition to the unbelievers.

At a minimum, it’s a good object lesson in dealing with legal issues concerning your chronic disease:

Be precise with your language. Don’t make sweeping generalizations. Be exact, and consider thoughtfully how your words might be misconstrued.
Keep a diary of your symptoms. This is probably the best advice any chronic pain patient can take, no matter what the purpose. It helps in so many ways, and I hope to write about that in much more detail later on. But for legal purposes, a diary or log that’s kept contemporaneously with (at the same time as) your symptoms is invaluable evidence.
NEVER EXAGGERATE. No matter what. Just don’t do it.

Euston Arch

One Doll's Story of Life With Chronic Pain