Central Sensitization, Chronic Pain, Creative Writing, Healthcare, My Story, Nervous System, Pain Neurophysiology Education, Pain Science, Treatment Approaches

The doctor who *almost* helped me (How I developed central sensitization, Part 6)

Okay, so here’s the story of the time I thought I’d found the right person to help me, which of course, made it all the more disappointing when it didn’t turn out to be the case.

In telling my story, I’m choosing to gloss over every little ache and pain I had; every time I thought I had some kind of injury, but no one could actually find anything wrong.  It’s not really necessary to the story, and I don’t want you to get bogged down in negativity.  The point, again, is that I did eventually find answers.

But here’s the story of the first time I thought I’d found them.

***

It was 2006; my first time seeing a physiatrist.  Physiatrists are doctors who specialize in non-surgical options to treat musculoskeletal pain– so, basically, they do everything else.  Their approach is generally thought to be more holistic.  They can provide options such as lidocaine and cortisone injections, but they also look at the patient as a whole person and can recommend lifestyle changes as well.  It’s a pretty cool specialty.

And I was pretty much seeing the best one.  I loved Dr. V. the first time I saw her.  She’d won all kinds of awards for going above and beyond to help her patients.  And she was just so… nice.  She provided me with so much hope.

Dr. V. reassured me that there was no reason, as a healthy person in my early 20’s, I shouldn’t be able to do all of the things I wanted to do.

She recommended a bunch of promising options, including trigger point injections, as well as medical acupuncture, which she actually performed herself.

And she was the first person to really explain to me that my brain was magnifying the sensations of pain I felt, “like a computer.”  My brain was “zooming in” and making what should be a small problem, or no problem at all, look like a big problem.

For a time, I really thought Dr. V. was going to be the one to finally “fix” me, to finally reverse this impossible pattern I’d been dealing with for so long.  I felt like she really got me.

***

Dr. V. seemed to understand that, from time to time, I would come in with pain in a new part of my body, and would need someone to tell me whether, in fact, I had an injury or whether it was just pain.

There were so many times. I felt safe; I felt believed.  I just needed a place to go where someone could tell me whether or not I had an injury or not.  I didn’t always need to be referred to physical therapy, or start some new treatment.  Sometimes, the pain would just diminish once someone actually told me it was safe to ignore it.  (Which, as I later learned, makes 100% sense once you learn about how the nervous system works).

The only thing is, Dr. V. did want to refer me elsewhere: to therapy.  She seemed to understand that my brain was distorting my perception of pain, but she kept coming back to the idea that it had a psychological or emotional cause (which, I would later learn, is not a prerequisite for central sensitization).

She offered me the names of a few different therapists she had come into contact with over the years.  I would go and see them, but nothing ever really “clicked.”  Because we were looking for something that wasn’t there– my pain wasn’t being caused by my emotions.

***

What I really needed, again, was for someone to help me understand my physical pain.  As I’ve explained in my Calming Your Nervous System section of this blog, when you have the kind of chronic pain I had (and still have, to an extent) it’s like your body’s pain protection system has gone into overdrive.  It’s trying to protect you, but it’s stuck in the “on” position all the time.

Luckily, the nervous system is complex, and although there are multiple components involved in keeping this process going, there are other aspects of the nervous system which can be used to turn the system “off.”

One way to do that is to understand, rationally, that your body isn’t actually in danger; that you aren’t actually injured.  This is actually the pain principle behind Pain Neurophysiology Education, the approach to chronic pain treatment that finally helped me.

Of course, I didn’t know any of this at the time, but I sort of stumbled upon this principle myself.  A new part of my body would hurt (or an old one would start hurting again) and it would feel real.  It would feel like something was wrong; something was injured or on the verge of breaking.

That’s why it helped me, to go in and see Dr. V.  To be examined by an actual doctor and be told nothing was wrong.  It helped my nervous system feel “safe” again.  Usually, I’d start feeling better within a day or so after my appointment, before I even got to physical therapy or whatever next treatment she’d recommended.  Because she’d already given my nervous system permission to relax and stop hyper-focusing on that part of my body.  The pain would be able to fade into the background.

And I was okay with this pattern.  It wasn’t ideal, but it was better than anything I’d found yet.  We hadn’t actually been able to break this cycle of mysterious pain that roamed throughout my body, but at least, with Dr. V. I’d been able to find a way to stop it from taking over my entire life when it started to get bad.

***

But here’s the thing.  I was okay with the holding pattern, but Dr. V. was not.  Because I wasn’t actually getting “better” in a linear fashion that she could write in her notes.  And because she could never actually find anything wrong with me.

There was one day I was 10 minutes late for an hour long appointment.  I’d had to take the Red Line to Mass General, where I saw her, and everything about that morning commute had just been a disaster.

And from the moment she walked into the room, everything had changed.  Her face seemed cold, like there was less color in it than usual.

And she told me she didn’t have time to see me that day.  That I’d been taking time away from her other patients; other patients who actually had horrible diseases and disfigurements and reasons to be in pain.

She said she’d tried to help me, but I hadn’t successfully utilized any of the options she’d given me.  And that if I wasn’t going to be responsible about trying to fix my issues, she wasn’t going to have time for me in the future.

And that was that.  I started to cry and attempted to explain myself, but it didn’t matter.  Her mind was made up.

She said she didn’t have time to stay and talk to me if I’d already missed 15 minutes of our 30 minute appointment.   Her secretary, who I’d sort of become friends with, overheard the whole thing and poked her head into the room, gently reminding Dr. V. that my appointment was actually supposed to be for a whole hour.

But it didn’t matter; Dr. V. was so angry at that point that no new information was going to make a difference.  It wasn’t really about the time; it was about getting rid of me.

She didn’t outright tell me never to come back and see her again, but by walking out of the room after 5 minutes, she’d made her message pretty clear.

So I never did.

***

Now that I know so much more about central sensitization, I can see that Dr. V. was wrong on multiple levels.  This is why I like to remind people that central sensitization was actually discovered in rats.  It has to do with brain function and neurons and neurotransmitters, not thoughts and feelings.

Somehow, it was like Dr. V. had vaguely heard of central sensitization somewhere, but hadn’t really gotten the full gist.  A lot of people are like that, actually.  They accept that the nervous system can process pain abnormally, but still think it must have to do with emotions.

And I never actually heard the term from her.  I only learned it once I requested a copy of all of my visit notes and saw it there, in my list of diagnoses.  It was #1: central sensitization.

That whole time– she could have just told me the name for it.  I didn’t even know there was one.  I could have learned about it myself– I could have Googled it.  It was discovered in 1983.  There was more information out there than I was given.

But no.  Central sensitization was just there in two small words, right under a lot of passive-aggressively worded comments about exactly how much of my appointment time I’d missed that last time.

***

It’s sad and it’s really shocking.  I do believe that Dr. V. is a good person who just didn’t have enough information, and who got frustrated.

But it shouldn’t be my job, to get “fired” as a patient and request my own office visit notes, only to finally learn there’s a scientific name for what I was going through that she’d never even bothered to tell me.

I could have looked it up myself and learned about it, instead of going on countless wild goose chases to psychotherapy and the terribly disappointing pain clinic she once sent me to.

***

But at least I have answers now, and you know what?  I think I’m sort of proud of myself for getting as far as I did, on my own.  After all, it basically means I’m a genius, since I was able to stumble upon the main principle of pain neurophysiology education all on my own (right?).

***

As you may know, what really did work for me eventually was to meet a physical therapist who had studied PNE with Neil Pearson.  This physical therapist taught me how to understand my nervous system, and to work with it, instead of against it, and to learn ways to get my body to turn the “volume” of the pain back down.

This is why I feel so, so strongly about PNE, and why I was originally inspired to become a physical therapist.

In a way, Dr. V. is part of my inspiration as well– I see how important it is for healthcare practitioners to actually understand the specifics of how chronic pain works.  It’s not enough to just be an empathetic person, because apparently empathy can be replaced by frustration over time, if a patient isn’t getting better.

If you want to know more about PNE, you can check out the Calming Your Nervous System section of my blog, and also definitely check out the work of Neil Pearson!

Hope this was helpful!

Healthcare, Interesting Articles

New York Times: The Heart Perils of Pain Relievers

An interesting look at the risks that come from taking anti-inflammatory medications.

http://well.blogs.nytimes.com/2013/06/17/the-heart-perils-of-pain-relievers/?_r=0

The article quotes one doctor as saying, “If these drugs are making your life a lot better, that may be worth the risks.  But a lot of people will tell you, ‘I can’t tell if they’re doing anything, I just take them every day anyway.'”

I think a lot of people with chronic pain are told by their doctors to take these medications.  They are considered by most doctors to be a lot safer than some of the alternatives, which carry a risk of dependency and have a potential for abuse.

But NSAIDS have never really done much for me.  They help if I’ve  strained a muscle in a very acute manner, or when I’ve had a specific injury such as an ankle sprain.  But for ongoing, chronic pain where the original injury happened a long time ago, NSAIDS don’t seem to do much.

Don’t take NSAIDS just because your doctor recommended them.  Make sure they are actually producing a reduction in pain before subjecting yourself to the risks.

Healthcare

Why do some hospitals get away with charging such exorbitant prices?

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The Center for Medicare and Medicaid Services published a ground-breaking report yesterday looking at the average prices charged by 3,000 U.S. hospitals for the “top 100 most frequently billed charges.”

The report shows that different hospitals appear to charge wildly different prices for the same procedures, seemingly without any rhyme or reason.  While one hospital might charge $5,304 for a hip replacement, another might charge $223,373.

While it’s true that the same types of procedures can be more or less intensive depending on whether or not the patient experiences complications, this study was based on an averaging of costs.  This means that the data is unlikely to be skewed by patients with complications.

Here are a few more choice pieces of data, as summarized by the Washington Post:

  • For heart failure with major complications, the average price ranged from $13,960 at one hospital to $75,197 at another.
  • For kidney failure with major complications, the average price ranged from $16,366 at one hospital to $80,919 at another.
  • To treat esophagitis and digestive disorders, the average price ranged from $7,107 at one hospital to $37,750 at another.
  • The prices charged by for-profit hospitals to Medicare were, on average, 29% greater than the prices charged by nonprofit or government hospitals.

Unfortunately, I wasn’t too surprised by some of these findings.  I think that, at this point, pretty much everyone knows someone who’s been screwed over by a crazy hospital bill.

One example is this story about Robert Reed, a patient who was charged $1,525 by a hospital he had not even been to.  Reed had had a procedure performed by a dermatologist who was affiliated with the hospital, but whose physical office was 1.5 miles away.  The doctor only charged $354 for her services, but the hospital charged $1,525 in fees for an “operating room” and “facility” Reed had not even been to.  This kind of price inflation is legal, and it happens all the time.

If you ask me, this is the problem with the American healthcare system.  Until now, medical institutions have been able to keep their prices a secret.

I can’t think of any other industry where it’s legal to keep the price a secret from the consumer until after he or she is legally obligated to pay it.  Buying clothes at a store?  There’s a price tag on them.  Getting your hair cut at a salon?  There’s a sign on the wall with prices on it.  Buying a car?  There’s paperwork to fill out once you and the salesperson have come to an agreement.

Now, to be fair, the prices hospitals list for various procedures are often much higher than the prices individual patients are asked to pay.  For one thing, many insurance companies have their own special “agreements” with hospital networks.  I see this on my own medical bills all the time: the first few lines represent the “actual” price which the hospital would like to charge, and the next few lines show what is called the “allowed” charge—in other words, the special deal my insurance company worked out as part of its contract with the hospital.  As the subscriber, the price I pay is based off of the “allowed” charge, not the much-higher “actual” charge.

But as you can see from the Center for Medicare and Medicaid services report, these “special agreements” don’t do much to level the playing field in the long run.  When hospitals are able to inflate their charges to Medicaid and health insurance companies by tens of thousands of dollars, we all pay in one way or another.

Regardless of where you stand on the political spectrum, it should bother you that up until now, hospitals and other medical institutions have been able to ride roughshod over the consumer.  If you’re inclined to defend these hospitals out of a belief in the “free market,” I’d like to point out to you that it’s not a free market when consumers are unable to make informed decisions.  If we are going to rely on competition to reign in cost, consumers need to be able to know the estimated cost before they undergo a medical procedure.

This report was step in the right direction, and I am cautiously optimistic about the future.  The Center for Medicare and Medicaid Services says that the report is part of an increased push for transparency in the healthcare industry on the part of the Obama administration.  I think we can all agree that the price discrepancies shown this report are totally ridiculous.  Private hospitals may have the legal right to set their own prices, but we as consumers ought to be able to know what those prices are, just as we would for any other purchase.

**Money picture published by 401 K (2013) under a Creative Commons license.

Healthcare, Interesting Articles, psychology, Treatment Approaches

“Science-based” vs. “evidenced-based” medicine

Over the years, I’ve seen the words “evidence-based” used to justify a lot of concepts I find dubious.  (Trust me– I saw some pretty ridiculous things during the time I worked in a mental health group home).

This article from Paul Ingraham at PainScience.com in favor of moving from evidence-based to science-based medicine was music to my ears.  I realized that, although I hadn’t consciously thought of it in those terms, advocating for that shift has been one of my motivations for working on this blog.

A lot of the treatments for fibromyalgia sufferers might be “evidenced-based,” but that doesn’t mean they shed any real light onto its causes.  For example, an “evidenced-based” course of treatment for someone with chronic pain or fibromyalgia might be cognitive-behavioral therapy.  It’s true that multiple studies have shown CBT to be helpful for patients with these conditions.

However, I don’t believe it’s reasonable to infer that because CBT has been shown to benefit fibromyalgia patients, those patients must have had an underlying psychological problem in the first place which contributed to their fibromyalgia.

To me, that’s confounding variables.

It makes perfect sense that someone with chronic health problems is going to appreciate having a sympathetic person sit with them, listen to them, and teach them new coping strategies.  However, this does not mean that fibromyalgia or related conditions are caused by depression or anxiety.  It simply means that therapy helps patients feel better.

***

What I try to do on this blog is to present the scientific evidence in favor of what I’m arguing.  That’s why I am always linking to academic articles.  Even though I know people don’t always have time to read them, it’s important to me that the citation is there.

It blows my mind that there are still practicing medical professionals out there who are unaware of all the research that has been done on the complexities of the nervous system, and how people experience pain.  In my opinion, the research that has been done on the process of central sensitization is a lot more convincing than the research that has been done on the overlap between mental health conditions such as depression and anxiety and fibromyalgia.

For one thing, it makes sense that you’re going to find a higher rate of depression and anxiety among the chronically ill.  I don’t know why anyone is surprised by this. To me, it makes perfect sense that those suffering in chronic pain and discomfort would experience an impact on their mental health.  It’s a chicken and the egg problem, and I find those studies relatively meaningless.

For another, the people who write these studies apparently don’t know anything about the process of central sensitization.  They appear to be completely unaware of the ways our nervous systems can physically change in response to chronic pain, in a way that is beyond our control.  Physical abnormalities have been found not only within the brain but within the spinal cord of chronic pain sufferers.

To say that depression and anxiety are responsible for chronic pain is to focus on only the tip of the iceberg.  If the people who published these studies would at least acknowledge the rest of the iceberg, I would be able to take them more seriously.

But it seems that academic knowledge is too compartmentalized.  Some people go into psychology and study people’s moods and thoughts.  Some people go into neurology and study the nervous system.  Even the people within neurology end up specializing.

This is why I am inspired to see people beginning to criticize the concept of “evidenced-based.”  I’m tired of people throwing those words around as though it means what they are doing is automatically great.  There is a difference between evidenced-based and science-based.   When you can see physical abnormalities in the brain of a chronic pain sufferer under a fMRI, that is science.   Assuming that people with fibromyalgia must have a problem with depression because psychotherapy makes them feel temporarily better is not. 

Anyway, that was a bit of a rant (but I’ve been told my rant-y posts are some of my best!).

Do you agree with me? Disagree? Let me know your thoughts!