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.
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| 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.
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| 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.
magazine. A previous issue had included an interview with Michael J. Fox and the writer of this letter talks about being diagnosed with MS and adopting Fox's motto of "Don't play the result."
