Wednesday, August 31, 2011

Book Review: The Pain Chronicles by Melanie Thernstrom

I've been talking about pain quite a bit lately, probably because it is such a major part of my life. I recently read Melanie Thernstrom's The Pain Chronicles, a book I would recommend to anyone who deals with pain or knows someone who does. Thernstrom is a great writer and this is an engaging read. It is part memoir, about her personal experiences with chronic pain, and part research-based academic examination of the subject. There is a lot of information about what chronic pain is, from both scientific and emotional/spiritual points of view. There is also much information about pain treatments and the hows and why of whether or not they work.

Included is information about some disturbing studies about brain atrophy caused by chronic pain: "While normal aging causes gray matter to atrophy by half a percent a year, the gray matter of chronic pain patients atrophies dramatically faster: the pain patients showed losses amounting to between 5 and 11 percent, the equivalent of ten to twenty years of aging."  Um, yikes. Neuropathic pain has an even greater impact on the brain than other types of pain: "The loss in brain density seemed related to pain duration, with 1.3 cubic centimeters of gray matter being lost for every year of chronic pain." Like the author, I "couldn't bear to complete the calculation." Understanding the physical changes in the brain caused by chronic pain reveals the "secret of the chronic pain cycle, why it worsens over time without new nerve or tissue damage: pain causes changes in the brain that diminish the parts of the brain charged with modulating pain, which results in an increase in pain, which further atrophies the brain...and so forth." I think Thernstrom later referenced a more hopeful study suggesting that the decrease in gray matter is a matter of cell shrinkage rather than death, and that some regeneration may be possible if the pain is successfully treated, but I can't find where, so maybe I'm making it up in a desperate attempt to cling to something positive.

the doctor is in!
Beyond pharmaceuticals, some of the most effective means of dealing with pain seem to be in the manipulation of expectation, attention, or both. The expectation of pain causes pain to be worse, a serious issue for those with chronic pain: of course you expect to be in pain when it is a continual presence in your life! But I'm going to work on expecting to feel better, in as much as that is possible. Issues of placebo come into play here. Belief in a treatment can do a lot for how the brain's pain modulating system works. As far as manipulating attention, distraction has long been one of my best tools. When the pain is really bad, I turn to passive attention grabbers like watching tv shows on hulu or listening to music. My favorite form of distraction by far is my niece. Hanging out with her, even just watching her play is the best form of medicine I know. Being out in nature and focusing on the natural beauty all around us is also great distraction.

some great OTC pain relief!
Here is a great quote by pain specialist Dr. John Keltner about the importance of finding experiences what can command your brain's attention in the way that pain does:
"Pain is such a persistent, relentless experience, it actually poisons and infects your brain. Pleasure and relaxation are at a disadvantage compared to pain because, while pain dominates and imprints on consciousness, they are typically quiet, subtle states. People need to find a way to have experiences that are not only pleasurable but are as important and riveting as pain. Religious experiences can be that powerful, but unfortunately, doctors can't prescribe religion. But by whatever technique - sex, intimate conversation, listening to music - people need to create moments when their attention is sufficiently drawn away from pain that they are almost pain-free, so that they can begin to recondition and reclaim their brains." 
This is great advice, and I'm going to work to include more of the things on my personal list in my life. Of course, with MS fatigue thrown into the bag of fun, including lots of the kinds of experiences that are the right kind of riveting for me is easier said than done. This reminds me of  Kate Wolfe-Jenson's "Fill-the-Bucket dates." A great idea for all of us, pain or not.

One treatment Thernstrom discusses that I'm extremely interested in and would love to try is a biofeedback-like f-MRI technique called neuroimaging therapy, which I also mentioned here. It's still in its early stages, but it essentially allows you to train yourself to control your pain to an extent. Unlike distraction, here attention is manipulated by focusing attention on pain, as opposed to focusing it elsewhere. While in the scanner, you see activity in a certain part of your brain represented by a graphic of fire. More pain = more activity = bigger flames. Less pain = less activity = less fire. Thernstrom describes it like a high-tech form of meditation. One of the creators of the technique worried it was just "the world's most expensive placebo" but they were able to determine that the placebo affect is not what is occurring in this case. I really dig the idea of this technique, as it is based in neuroplasticity, something I've read a lot about and find utterly fascinating and just plain cool. I also, of course, love the idea of having control over my pain and without drugs and their stupid side effects. I don't know how widely this is available yet, but I'm going to bring it up at my upcoming appointment with a pain specialist neuro.

Another intriguing tidbit I took away is the effect smell can have on pain. Studies have proven that pleasant smells can serve as analgesics and that unpleasant odors actually enhance pain perception. Bring on the essential oils! And what a great excuse to have a pan of cookies in the oven with great frequency!

Lots of great information in this book, but for me the best part of the read was that feeling of connection.Chronic pain is a very lonely experience, because it's very difficult for others to understand. There were many moments where I felt blown away by how accurately Thernstrom described some of what it feels like to be in pain. And she often describes it in beautiful, lyrical language. At the risk of making this the longest post ever, I would like to share several long quotes that really connected with me. For others with chronic pain, I hope you feel a similar little rush that comes from realizing that other people really get it. For those without, including those who know me in real life but don't know too much about my pain experience, I hope it helps offer a little window into what it's like.

  • To be in physical pain is to find yourself in a different realm - a state of being unlike any other, a magic mountain as far removed from the familiar world as a dreamscape. Usually, pain subsides; one wakes from it as from a nightmare, trying to forget it as quickly as possible. But what of pain that persists? The longer it endures, the more excruciating the exile becomes. Will you ever go home? you begin to wonder, home to your normal body, thoughts, life?

  • She feels haunted persecuted by an unseen tormentor. Depression sets in. It feels wrong...maddening...delusional. She tries to describe her torment, but others respond with skepticism or contempt.

  • As has often been observed, pain never simply "hurts." It insults, puzzles, disturbs, dislocates, devastates. It demands interpretation yet makes nonsense of the answers. Persistent pain has the opaque cruelty of a torturer who seems to taunt us toward imagining there is an answer that would stop the next blow. But whatever we come up with does not suffice.

  • You try to wake yourself out of pain - it's not an infinite realm, it's a neurological disease - but you can't. You are in a dreamscape that is familiar yet horribly altered, one in which you are yourself - but not. You want to return to your real self - life and body - but the dream goes on and on. You tell yourself it's only a nightmare - a product of not-yet-fully-understood brain chemistry. But to be in pain is to be unable to awaken: the veil of pain through which you cannot see, the vale of pain in which you have lost your way. To be in pain is to be alone, to imagine that no one else can imagine the world you inhabit.

  • Elaine Scarry characterizes pain as not only not a linguistic experience, but as a language-destroying experience. "Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language," she writes.

Monday, August 29, 2011

Magazine Monday: Pain in Poetry

I've been using this little scrap as a bookmark for quite some time, meaning to use it for a Magazine Monday post. It's a letter to the editor response to the Time magazine issue devoted to pain that I've discussed previously here and here. I agree with the writer of this letter that Emily Dickinson's few words hit the pain experience right on the head. 

Pain has an element of blank;
It cannot recollect
When it began, or if there was
A time when it was not.

Sunday, August 7, 2011

Moving Madness

Well, we managed to get all moved into the new apartment. The unpacking and organizing process is coming along, but there's still a long way to go. No internet until next week, so I'm currently hanging out at a Starbucks, enjoying a few moments on the web after a going a week without. The no-web time was good for me, though, as I tend to waste a lot of time I could be using more productively or restfully.

the remains of my delicious iced coffee with milk

Monday, August 1, 2011

Magazine Monday: Time Mag & Pain, Part 2

As I noted a few weeks ago, the March 7, 2011 issue of Time magazine was focused on pain. Since nerve pain is a major part of my particular MS package of never-ending delights, I found the issue to be very interesting. The most substantive article in the special issue was Alice Park's Healing the Hurt. Park summarizes pain and points out how vital and necessary a function it is. Until it isn't. She then describes this scenario (when pain is chronic and not an important signal to stop whatever is causing it) and points out its less-than-pleasant-ness: "persistent, unceasing torment." True dat.

The bulk of the article, though, is positive and hopeful in its overview of new research into understanding the complex processes involved in chronic pain and in new treatments. I found to be particularly intriguing the idea of a biofeedback-like process using fMRI technology. A major potential upside to this kind of treatment is that it is non-pharmaceutical so it lacks negative side effects and the potential for addictions. I'm not sure how much of my brain fog to attribute to my pain drugs as opposed to just the MS, but I often daydream about the idea of not having to rely on meds to control the pain at all and thus not having to deal with any of their side effects. Beyond the brain fog, which is bad enough, I'm tormented by dry mouth which is a pretty major issue since I play a brass instrument for a living. I also think that the more body and mind-body awareness a person can have, the better, so I love the idea of retraining neural pathways to lessen pain.

Also discussed is the so-called talking cure, rightfully connecting pain and emotion on both a neurotransmitter and human level. A cure? No, but like meditation, I think therapy or any emotional outlet is an important line of defense to consider. I'm also a big believer in positive distraction, from art to media to people. If the pain's at its worst, I can't really be distracted, but most of the time, healthy distraction goes a long way.

Also worth noting from this issue is John Cloud's article Beyond Drugs which deals with CAM approaches to pain management such as massage, acupuncture, herbs, yoga, and qigong. With the possible exception of herbs, I'm all for CAM approaches to dealing with pain. Yoga, qigong and meditation have been helpful for me. I've not tried massage or acupuncture, though I'm intrigued by both and would like to try them at some point.

I just thought it was great to see a major media outlet like Time magazine deal with this issue in such a prominent way. I'm eager to see what transpires in pain research, especially with nerve pain.