[image quote]: "Along the way you start to see the truth in a lot of people around you; where they think you're being dramatic, or...you're exaggerating, or hypochondriacal, or med seeking, or any of the other labels and dismissive and discriminatory ways people with chronic pain are treated. I experienced every single one of them down the line." - Dr. Jill, episode 12; Pain psychologist + chronic pain patient

[image quote]: "Along the way you start to see the truth in a lot of people around you; where they think you're being dramatic, or...you're exaggerating, or hypochondriacal, or med seeking, or any of the other labels and dismissive and discriminatory ways people with chronic pain are treated. I experienced every single one of them down the line." - Dr. Jill, episode 12; Pain psychologist + chronic pain patient

CW: Suicide
11 What a Pain w/ Jill Fancher PhD (episode page)
Description: On this week’s episode, Cara talks to Jill Fancher PhD, a pain psychologist who lives with chronic pain herself. They talk about how she came to study pain, the devastation of being stuck in diagnostic limbo, stigma, existing in the liminal space between patient and provider, and the feedback loop between chronic pain, anxiety, and depression.

Trigger Warning: we do briefly discuss suicide toward the end of the interview. If you are in crisis, or know someone who is, there are a list of crisis hotlines on the resources page linked to on the episode page.

[intro]
Hey there and welcome you to In Sickness + In Health—a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.

If you’re new to the show, welcome! Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. As will come up again and again on this show, unsolicited medical advice is almost never not annoying.

I am so, so excited to bring you this week’s episode of the podcast—and for those of you living with chronic pain, I think you’re really going to enjoy this one. I talked to Jill Fancher PhD, a pain psychologist who lives with chronic pain herself. We talked about how she came to study pain, the devastation of being stuck in diagnostic limbo, stigma, existing in the liminal space between patient and provider, and the feedback loop between chronic pain, anxiety, and depression.

And as a trigger warning: we do briefly discuss suicide toward the end of the interview. If you are in crisis, or know someone who is, there are a list of crisis resources on the vocabulary page linked in the show notes.

This episode is also pretty heavy in pain terminology, and Dr. Jill was nice enough to help me out with defining those for you. This stuff is interesting, I promise... once you get past all the boring vocabulary stuff, anyway. I’ve linked to a more detailed vocabulary list in the show notes, and we’ll go over some of them right now...

There are different types of pain, with different causes, that are treated differently. For the sake of brevity and not getting too dense, I’m actually not going to get into that in this episode, but will link to more information about it on the vocab list. Instead, let’s start with the difference between chronic pain and acute pain.

I’m going to use some of my own experience with pain to illustrate some of these points for you. As you may know, I have a connective tissue disorder called Ehlers-Danlos Syndrome that results in frequent full or partial dislocations of my joints. This—as I'm sure you can imagine—is very painful, and those pains are acute pains; they are specific pains with an identifiable cause that generally resolves within the short term, once the joint is relocated. On the other hand, I have all kinds of chronic pain on top of that: more types of headaches than I can keep track of, pelvic pain of mysterious origin, soft tissue pain from the repetitive stress of my joints bending and sliding much more than they’re supposed to, inflammatory pain in the cartilage in my chest and elsewhere, and others. All of these are present every day, lasting far longer than the chronic pain definitions that use a minimum of 4-6 weeks in duration. The most basic difference between acute and chronic pain is time frame, but it’s more complicated than that.

All of those chronic pains continue to send pain signals to my brain, and every day I wake up feeling like I’ve been shoved through a meat grinder or beaten mercilessly with a baseball bat for mostly no reason. When my rheumatologist diagnosed me with secondary Fibromyalgia, it seemed like an unnecessary addition to my laundry list of diagnoses. Like do I really need to add to the list yet another poorly understood chronic condition that many people don't believe actually exists? But over time, as I’ve learned more about Fibromyalgia, my pain and how it behaves, I’ve come to understand why she made that diagnosis.

The constant pain input to my spinal cord and brain over a long period of time has created a feedback loop where as more pain goes in, even more comes out. Researchers are starting to believe that this may be why chronic pain has been such a difficult nut to crack for so many; that regardless of how the pain started, this is a common pathway to how it wound up being chronic, and so dang hard to get rid of. So let’s talk a little bit about how and why we think that kind of thing happens.

Some of the Basics:

  • The Nervous System is the network of nerve cells and fibers that transmits nerve impulses between parts of the body. This network coordinates voluntary and involuntary actions, and transmits signals—like pain—to and from different parts of the body. Like other vertebrates, we have two main parts of our nervous system: the Central Nervous System (which is comprised of the brain and spinal cord) and Peripheral Nervous System (which consists mostly of the nerves that connect the CNS to the rest of the body).
  • When Dr. Jill refers to neurobiological systems, she’s talking about the nervous system’s interaction with the rest of a persons biology.
  • Neuroplasticity is a buzzword you may have heard all over the place recently, but put simply, it’s the way that our individual biology changes over time. Our neurobiological systems change to adapt to different situations. Whatever it practices doing the most over time, it will change to become more efficient at doing that thing.

Which brings us to central sensitization; this is that feedback loop I was talking about, and it occurs in most people who experience chronic pain, regardless of what you actually call it. They think this is a big part of the puzzle at work in chronic pain syndromes like Fibromyalgia and Complex Regional Pain Syndrome. Patients become more sensitized to stimuli, get more pain with less provocation, and can experience “echos” where pain lasts longer than it otherwise would... like when I bump into a door frame and it hurts for way more and for way longer than it should. And it’s not just pain signals that get turned up all the way to 11 with central sensitization; for many chronic pain patients, other sensory stimuli can be amplified, including sense of smell (called hyperosmia), hearing (called hyperacusis), sensitivty to light (called photophobia), and sense of touch… which brings us to our next two terms:

  • Hyperalgesia is the term for increased pain from normally painful stimuli
  • Allodynia is the term for experiencing pain from otherwise unpainful stimuli

With allodynia, even a gentle touch can be painful—a perfectly normal, not-supposed-to-be painful thing that is often very painful for me is just having hair growing out of my head. With hyperalgesia, the things that are supposed to hurt, can hurt a whole lot more—like bumping into that door frame that might cause brief soreness for most people will, for me, often feel like I got hit by a truck. Yes, it is just as fun as it sounds. None of this means we’re “too sensitive,” or exaggerating, or that chronic pain is some failure of will; our nervous systems are just doing what they know how to do best—central sensitization is actually a normal thing for someone who is in pain all the time. It’s neuroplasticity at work!

So now let’s talk about how that pain is experienced. Dr. Jill uses three terms to talk about how we experience chronic pain:

  • Intensity: how loud the volume of the pain signal is
  • Agony: how much that signal bothers you
  • Salience: how important a signal is, so that brain devotes attention to it

She used the example of a paper cut, which is deeply unpleasant for anyone, regardless of whether they experience chronic pain. A superficial cut like that might be low in intensity, but high in agony and salience because it is so bothersome, and is often so easily aggravated.

In the interview, Dr. Jill mentions some specific areas of the brain that we know are linked to the experience of pain and are responsible for things like fear, attention, emotion, and executive function. I won’t get into the specifics of those now, but you can find more details on the vocabulary list. It is these areas of the brain that she refers to as the Agony Circuit, which makes pain more than just a sensation like other sensations—together they make pain a tortuous sensation, making it difficult not to think, 'I don't like this, I want this to stop, why won't it stop, this isn't fair…'

And who among us living with chronic pain hasn’t thought that before?

All of that said, as we touch on in the interview, there is still very little known about chronic pain conditions, and this is only a tiny part of that. There is also a ton of research on the role neurotransmitters play in all of this. As usual, we know more and more about less and less. We don’t talk much about actual pain management, and pass no value judgements on the various treatments for pain—prescription or otherwise. This is something I do hope to go in depth on in future episodes, though. As the pendulum swings, more and more patients are being left without adequate or individualized pain management, and that’s something I didn’t want to touch on only lightly.

So I hope you enjoy this episode, learn some things about chronic pain, and if you’ve been feeling down on yourself for being in pain all the time, I hope this helps you understand that it’s not your fault. If you want to learn more about Dr. Jill, her approach to pain, and find her book, you can go to masteringpainmethod.com. And you can find more stuff from In Sickness + In Health at insicnesspod.com, and on social media @insicknesspod.

Dr. Jill didn’t set out to study pain, but now I’m going to let her tell you about how she learned pain is so important...

[interview]

[outro]
And thank you so much for listening to this episode of In Sickness + In Health. If you are contemplating suicide or worried about someone who might be, please contact the National Suicide Prevention Lifeline at 1800-273-8255, or find other resources linked to in the show notes. You can find more from us at in sicknesspod.com, on social media @insicknesspod, and more from Dr. Jill at masteringpainmethod.com. Please rate and review us on iTunes, it helps other people find the show.

And don’t forget to be excellent to yourself and each other.