Snapshots in Chronic Pain

It’s been two hours. I hurt from sitting up straight without anything supporting my back. My face feels tired from smiling and forced cheer. The paper of the exam table feels like sandpaper against the back of my knees, and I lost feeling in my hands after they asked me to squeeze and press and push and squeeze again, for some indeterminate test of muscle strength, when the problem is my nerves.

My medication history is nil at the moment; it’s been years since I’ve had anything prescribed to control the pain, and they know this. They’ve explained that they also cannot and will not ever prescribe pain medication for me–I’ll have to find a willing primary care physician. That’s deflating; why am I here?

They hand me a cup to piss in on my way out the door. No pain medication, hours of going over my history, and I still have to prove that I’m not on any drugs, just for the pleasure of their company.

The bill, before insurance, is nearly $1000 for the piss test. I’ll have to pay nearly $100 out of pocket.


The physical therapist wants to see me three times a week. My co-pay is $40 a visit. She talks of curing me in the next few months. I can’t decide what’s funnier: that I can afford $480 a month for physical therapy, that I can leave work early three times a week, or that I can be cured.

She cringes and recoils when she learns where my husband works. If he’s not with me, my physical therapy appointments only last 40 minutes. If he’s there, they always last over an hour.


I am soaked in a downpour earlier this week, fast-moving thunderstorms that overtake me on the way home. I lose track of the number of times I change temperature environment, going in and out of air conditioned buses and building, first dry and then dripping wet. My skin is now on fire, like I’ve been severely sunburned. But there’s no proof, there’s just the flinching if I am touched, the desperate attempts to find the softest clothes to wear, the effort at hiding my body from any direct air.

It is the middle of summer, but I’m bundled for late fall, arms covered and gloves on. My T3 is so ineffective as to be laughable, and it’s my own fault; opting–no, arguing–for the weakest opioid possible after my experience with the pain management doctors. To reiterate that I’m not drug-seeking, I’m not a junkie, I should not be judged or stigmatized, I am strong and only want the minimal medication possible to stop the pain.

I only want the minimal medication possible to stop the pain.

The pain has not stopped.

Long-term Antipsychotics May Be a Medical Mistake

I’ve debated whether or not to post this since seeing Robert Whitaker’s lecture slides and heard about the results of his talk to NAMI from friends who were there, but ultimately decided that since this is an actual personal issue for many people, due to your own health or those of people you love, it’s worth making sure the information is available as far and wide as possible. Consent to medication needs to be informed, blah blah bioethics stuff.

Before the TLDR, the gist is this: evidence suggests that the best treatment for schizophrenia is not continual medication, and that

a significant percentage of those with schizophrenia who did not receive antipsychotics or took them for a very limited time had better long- term outcomes than those who took them on an ongoing basis.

And perhaps even more importantly, there’s significant evidence that the long-term use of antipsychotics creates a vulnerability to future psychotic episodes.

It’s important to note that Whitaker isn’t saying antipsychotics shouldn’t be taken, or aren’t needed by all people who are on them. But he’s gone over something like 60 years of data, a lot of which is from longitudinal studies spanning 20-30 years, and it looks like fully 50 – 75% of patients could make a complete functional recovery sans long-term antipsychotic use:

Medication compliant patients throughout 20 years: 17% had one period of recovery.

Those off antipsychotics by year two who then remained off throughout next 18 years: 87% had two or more sustained periods of recovery.

The data was so compelling by 1992 that Finland switched to a selective-use of antipsychotics that year… and now has the best long-term outcomes of anywhere in the world. Fully 79% of people – not just schizophrenics, but anyone who might be given a neuroleptic for psychiatric issues – are asymptomatic at five years, with 80% either in school or the workforce.

A lot of the issue appears to be what is known as “oppositional tolerance.” Anyone with chronic pain recognizes the concept if not the phrase: it’s what requires a gradual dose increase in medication to continually receive the same pain management. Essentially, the brain compensates for blocked dopamine or serotonin receptors in two ways. In the case of dopamine, postsynaptic neurons increase their receptors for dopamine as presynaptic neurons increase their firing rate. The opposite happens for serotonin: as the presynaptic neurons decrease their firing rate, the postsynaptic neurons decrease the density of receptors. In each case, the brain is trying to compensate for the effects of the drug being released into the system. Depending on the kind of drug being taken, we change the structure of the brain making it even more (or less) sensitive.

And, in fact, it’s the very recognition of concept that makes me wonder if Whitaker’s results can be extrapolated beyond neuroleptic use for management of mental health related illnesses and into chronic pain management; perhaps it’s better to treat acute instances of pain (“flares”) and then gradually decrease dosing until the patient is off medication than to continually dose the body with drugs “just in case.”Of course, I also have some admitted bias towards this idea, because it matches my experiences. We could easily call this revisionist history attempting to establish narrative control, too.

Anyhow, the very accessible and easy-to-read slides for Whitaker’s NAMI presentation can be found at this link, which includes detailed citations for those who’d like to read the journal literature. There’s also a good mother-of-patient perspective from Kathy Brandt at Mad In America. And if you really feel like having a sad today, you can read Carl Elliott’s comprehensive coverage of the death of Dan Markingson in the Seroquel studies, which should be required reading for anyone contemplating participation of themselves or a loved one in a drug study, or exposure to contemporary antipsychotics.

The Invisible Made Visible

While I have never been terribly quiet in discussing my disability, I also acknowledge that I am, for a disabled person, in a privileged class. I can “pass” as normal – that is, I don’t look outwardly disabled. There are a host of issues that come with this, including a lack of “validity” from both normals and disabled folks. (I don’t look “sick”, so how can I be “sick”? Comes from both sides of the aisle.) But, problems aside, I fully acknowledge that it is nice to go out in public and not have the public gaze focused on me. Been there, done that, definitely didn’t like it.

Which is what makes this so strange
The invisible made visible. on Twitpic

I haven’t been visibly identified as disabled in a long time. When I fly, for various reasons, I normally fly United, and I pay for the upgrade that allows me extra leg room and space. This comfortably addresses my issues, and there’s nothing else I really need to do, other than make sure I select smart seating when I am booking my flight.

For various reasons, I am flying Southwest today. I haven’t flown Southwest since I was a child, so I had no idea what to “do”. I tried to contact Southwest air via their Twitter account, and they promptly ignored me. Their customer service agents, over the phone, told me there was nothing they could do – just try to sign in early enough to get priority boarding. Sigh. So I read over the information on the website, and they said to contact customer service at the airport – so I did. I explained that I am disabled and that I do need advanced boarding and he asked for a doctor’s note.

Oh, from the doctor I haven’t had since August. Sure, I’ll get right on that thing that wasn’t mentioned on the website.

I volunteered to show Adam, the customer service rep, the pain patches covering my right arm. He laughed, said that wouldn’t be necessary, and explained my boarding process, handing over the above blue tag.

Now I am sitting here, and irrationally, I feel branded. Like everyone is staring at me – which of course isn’t true, unless you count the adorable moppet who appears to find me the most fascinating thing ever. Still, next to me is this bright blue boarding pass, clearly printed PREBOARD – and why.

Is the person across from me looking over his newspaper to look at me? Figure out what is wrong with me? Wonder why I have armwarmers on, which cover most of the pain patches and hide them from visibility? (Practically speaking, they keep them on, but is that what it looks like?)

Is the woman with the three young children trying to figure out why I get to board ahead of her?

Is that a scowl from the very well-dressed man the fact I might get the seat he wants?

Maybe more importantly, why do I care? Why does it feel so exposed and vulnerable to have people know I get to board a whopping few minutes ahead of them? These are people I don’t know and will never know; we will be spending at most three hours together on a packed flight.

And yet, and yet. I sit here and wonder: should I exaggerate my limp? Avoid full mobile range of my right arm, to emphasize that I am indeed broken, and not just gaming the system? Should I put on airs and affected manners just to verify I am legit, really and honestly? And ultimately, if the gate agents don’t care, why should I?