Thursday, February 18, 2010

In Re: Percieved Pain v. Actual Pain

I probably shouldn't be writing this post. I've been having quite a bit of pain in my wrists and I have a lot of computer work I need to do for my externship, not to mention for my classes, so I probably ought to spare my limited abilities for that. But I can't seem to get this post from Kelly at RA Warrior out of my mind, and I don't think I'll really be productive until I do. So here I am, typing.

Kelly's post is about several medical studies that attempt to define the difference between "actual pain" and "perceived pain" experienced by RA patients. I must admit upfront that I haven't had time to read all of these studies myself. But Kelly has been through 66 footnotes and includes links to many of theses studies and it's her conclusions that have got me thinking. She concludes that the overarching theme of these studies is that RA patients actually have low pain thresholds and thus perceive pain to be worse than it actually is. This perception of pain is then worsened by RA patients through catastrophizing.

To start with, I have to admit that I feel wary about any overarching claims about RA patients as a whole, or even as a majority. I only know a few people personally who have RA, but I have met quite a few more through blogging. And if there's one thing we all have in common its that we have all experienced RA differently! While we often have similar experiences or can relate to each other because of RA, I have not had the same RA journey as anyone else, and no one has had the same RA journey as me. The only RA I can hope to truly understand is my own. And, even though this is my 168th blog post, I'm still struggling to figure my own RA out!

Kelly's post made me think about my own RA. My first thought was: wait...I thought I had a high pain threshold, not a low one. That was quickly followed by an overwhelming desire to analyze this issue, which, I guess, is why I'm a law student!! For the past four years I've been professionally trained to analyze the best points of both sides of an argument. So it got me thinking about the doctors and researchers' side of the story.

For the sake of argument, let's just assume that these studies are right. Let's assume that I actually have a low pain threshold and that most of my "pain" is in my head. Let's assume that I am actually making my own pain worse by catastrophizing my situation. But after making this argument in favor of the studies, I ran into three sets of questions that I was unable to answer:

First, if most of my RA pain is in my head and I am making it worse by catastrophizing my situation, how do you explain the sudden onset of this way of thinking? A year and a half ago I was an overachieving dual degree graduate student who also worked two jobs and played on a water polo team. I knew I could achieve anything I wanted to and I was convinced I was going to change and/or save the world. Suddenly, a doctor utters the diagnosis "RA" and my entire mode of thinking changes? Suddenly I think everything is going wrong for me and giving everything an negative spin? Suddenly my brain decides that exercise and every day tasks are just way more painful than they used to be? How do you explain this sudden onset of low pain threshold and irrational negative thinking?

Secondly, if most of my RA pain is in my head, how does this affect my RA treatment? Why am I being given cancer drugs and extremely expensive biologics if I could lessen my pain just by changing my thinking? Why does my rheumatologist encourage me to ask for vicodin if I think I need it? And why have not one but two of my doctors encouraged me to see a therapist, not to deal with my perceived pain, but to accept my diagnosis and properly grieve over what I have lost? What am I grieving for if it's all in my head?

Lastly, I wonder how the studies take into account the effects of chronic pain? Let's say RA and non-RA both have the "same amount" of pain in their wrists. Non-RA's wrist pain is from an injury (too much tennis?) and it lessens and goes away after a couple of days. RA's pain is from RA, and it doesn't change in intensity or go away. For weeks. Maybe for months. And there doesn't seem to be anything RA can do to help with the pain - the meds aren't working. Isn't it reasonable for the "same amount" of wrist pain to hurt more when it's chronic? Isn't it reasonable for chronic pain to wear you down a little bit?

In the end, I simply don't buy the conclusion that my pain is mostly perceived, rather than actual. And I don't buy the conclusion that I am making my situation look worse than it actually is. I will certainly admit to having some negative days in the past year and a half. But, overall, I think I've been pretty optimistic about adjusting to my life with RA.

After all, if you look in my "Topics" sidebar you'll see that I have 54 posts labeled "Discouraged Days" and 48 posts where I complain about different kinds of pain. But I have 94 posts labeled "Optimism," 17 posts about laughter, 17 posts about hope I've gained from strangers, and 46 points about my amazing family. And the title of this blog is "From This Point. Forward." As I claimed in my first blog post ever, I'm looking forward. I'm adapting to RA and living my life. I can still achieve anything I set my mind to.

That doesn't look like a catastrophe to me.


Kelly Young said...

Extremely well done. Makes me think we will move the ball.

Rebecca said...

I am wary of anything that makes you in particular minimize your pain because I know you. Some days I think you could be being trampled by elephants and scale it a 3. Obviously the rest of us would be dead.

I'm also somewhat skeptical about the usefulness of categorizing pain as "purely mental" or "in your head." If it hurts, it hurts--what does it mean to say real or imaginary?

Ok, that's my human interaction for today. Hope you are enjoying APL's old person b-day!

~kelly marie~ said...

This is so wonderfully written. You captured so many things that I have thought for so long. Nothing makes me angrier than being told it is all in my head. Articles like this just belittle what people who suffer from chronic pain, whatever the cause might be, go through.

Helen said...

A fascinating post. Thank you!

I'm excited to have found your blog. I'll be a law student with RA beginning in September. I'm looking forward to reading more from someone who's already there.

~Mariah~ said...

Hi Helen,

It's nice to "meet" you! I'm glad you find my blog useful! If you've got any specific questions about balancing RA and the horrors of law school ~;o) please don't hesitate to let me know! I'm just an email away:


~Mariah~ said...

Also: Rebecca, hahaha!! Trampled by elephants. ~;o) Thanks for the smile.

Anonymous said...

Hi, I really like your post. I have fibromalgia, and have had 2 knee replacements. In physical therapy, they had me read this notebook they put together about real pain vs perceived pain. I was not a happy camper when I read this book. While I was reading it, I had the feeling that I was looked upon as someone who was making up the pain I was experiencing. I guess I just wanted to say thank you for arguing both sides of this abstract thinking regarding pain. Everyone's pain cannot be quantified. People who have a chronic illness, such as RA, fibromalgia, etc have good days and bad days. Nothing makes me feel angrier than being told it's all in my head. Lisa