Going into the final week of this program, I am thinking about change. I came here to find a different way to deal with pain. If this experience is not transformative, then what’s the point? It needs to have a lasting impact. “Re-entry” into everyday life next week will be one of those “rubber meets the road” moments.

I can’t be sure that what I have learned here will consistently lower my pain going forward. There are so many variables on any given day:  Is it some random neurological event? Do I feel better because I am sleeping better? Is it the new dosage of the pain med? Is all the deep relaxation kicking in? Maybe it’s the gluten free diet? Will the warm weather help? I may be carving new neural pathways that will ultimately diminish my pain, but this remains to be seen. But I can already call the program a success in any case.

This is more about managing pain than treating it.  We manage things that we live with, not the things we are trying to rid ourselves of.  Doctors treat pain, but patients need to learn to manage it themselves. Doctors help by prescribing medications -- and medications play a big role. But they are only a part of the picture.

One important change is that the daily ups and downs of my pain don’t freak me out the way they used to. This is, as they say, HUGE. I am learning to internalize the notion that not every uptick in pain is a major flare-up and that a even a big flare-up is not a first step on the road to hell, or an indication that I have an as yet undiagnosed pathology that is going to make life unlivable.  Maintaining my equilibrium is not only good for me; it is good for friends and family who deal intimately with me on a day-to-day basis. I hope I can keep this up.

Chronic pain makes you feel very apprehensive, at least until you get your head around it – and I am finally getting my head around it, after a tough year. But I am pretty lucky. For some people it takes much longer, either because the pain is so bad or because the social, medical or psychological circumstances of their lives make it so hard to learn to cope with this. But learning to be less apprehensive seems to be a crucial step.

This is challenging because when you have a bad day you naturally extrapolate it to the next. This isn’t some crazy personality trait; it is what you instinctively do when things hurt. Your brain tries to protect your body from whatever may be coming next. (You might say: “It’s the neurology, stupid”). So internalizing a different understanding of the ebbs and flows of your pain is an achievement – and I am sure it is something that will require continued effort.  You even need to learn to keep a level head when the pain gets better: Don’t get elated, because the pendulum is likely to swing back. If you do, in fact, have a longer term remission, let it come as a surprise. The important   thing is to actively work at managing pain rather than to wait passively for it to go away or to panic when it gets worse. Easier said than done but doable.

Another change is to understand that the details of daily life really matter. Sometimes the little picture really counts and it is better not to let your ego get in the way of acknowledging that. I have been dealt a hand and I have to play it well. So I need to focus on the details of how I walk, sit and stand --not to mention the CRUCIAL details of how to breathe. Breathing is worth a whole post in and of itself but I am afraid that I might lose some of you if you see what a missionary I have become about the value—for everyone – of learning how to breath diaphragmatically. The point is that medications only get you so far in managing pain but these other things, which are thankfully within my own control, really help a lot. If I structure my days deliberately I can do the things I need and want to do without aggravating my pain to unacceptable levels. I have to accept the fact that I am more prone to fatigue than I used to be but I can still be confident that, with a little forethought, I can get a lot done. And the clearer I am, the more my friends and family can be relieved of the anxiety of worrying over me.

So, yes, I am changing the way I think, walk and breathe and these things make a big difference.  So we will have to see how all this plays out in the weeks ahead when I re-enter the path of  “normal” life. In the meantime, so far, so good. Stay tuned.

April 3, 2106

I have been thinking about the words "chronic,” and "pain" and about what happens when you put the two of them together.  As awful as chronic pain can be, it seems to me that this phrase is itself  more inflammatory -- and less precise -- than it needs to be.

Technically speaking, pain is considered chronic whenever it lasts longer than it should, given the underlying cause: a successful surgery leaving pain long after the wounds have healed; a broken bone that heals leaving nerve pain  long afterwards; a patient whose successful cancer treatments leave her body  in pain, seemingly unconnected to the disease that has been cured. They say that, as a rule of thumb, if it still hurts after six months, it is called chronic.

But this clinical definition doesn’t fully explain the valence of the term. No one ever says: "she is chronically joyful" or "I am chronically peaceful." Anything chronic is, by definition, undesirable, out of control and, usually, sad.  It is not just that it is with us all the time but that it is with us against our will.  We can make peace with all kinds of unplanned things, but the word “chronic” doesn't suggest a productive peace process. It doesn’t suggest anything fluid or manageable.  When a conflict is chronic, even a ceasefire seems unlikely. It is more like of a war of attrition – it just drags on and on.

And then there is pain. We think of pain as something solid rather than malleable, out of our control, something, at best, to be endured. Most of the time, we feel viscerally that pain is destined to go away.  And it usually does. Except when it is chronic.

When pain is with us, it is also outside of us: it is forced upon us. We feel that we have no control. No negotiation or integration is possible. Pain -- as opposed to, say, sensation – is unpleasant, aggressive and beyond our control. It insists on being in the drivers seat.

And when we put these two words together things really get intense.  With chronic pain, you are up against a formidable adversary.

But when you enter the world of pain management you need to (gradually, step-by-step) unlearn these things in order to regain a sense of control. Until I had chronic pain -- and began to research some of the ways to deal with it -- I never imagined that you could soften pain, work with it, integrate it into your life, to turn pain into mere sensation. All of this is easier said than done. Managing chronic pain is about learning a variety of practices that once sounded flakey to me. These include meditation, biofeedback, breathing exercises and various techniques of occupational and physical therapy that often touch on the seeming minutiae of they way you conduct your daily life.

You learn to distinguish between primary and secondary pain, about how habits of the mind can inflame our pain. You learn techniques to reprogram your brain (really!!) so that you don’t turn a relatively minor pain into something worse  than it needs to be. (BTW: this is something that happens all the time. There is an underlying biological reason for it. It keeps us running from the threat that caused the pain in the first place. But in the case of chronic pain it is dysfunctional: the wild animal that attacked us is long gone, so the “fight or flight instinct” only inflames things further without helping us to escape the predator). I can’t really explain the neuroscience of all this, although some of it has been explained to me over and over. But I can say that as a twenty-first century person, it is hardly shocking to hear that our minds are not fixed and inflexible, that they are constantly changing through various neurological processes and that we can deliberately influence how this happens. I can even believe that the phrase "chronic pain" suggests some outmoded concepts about how our minds and bodies work and about how we can influence them.

This is been in interesting an intense few days. It is indeed a lot like camp: the patients are the nervous campers, unsure of themselves in an environment that is different from any they have been in before. The staff  are like any good group of counselors -- ebullient, competant, kindly and encouraging. In this camp, every one is a first-timer. There are no older kids who have been coming here every year since they were first graders and just love it.

We each have a daily schedule of individual and group activities. For me, today was  Physical Conditioning, Biofeedback 1:1, Intro to Mindfulness, Psych Group, 1:1 Physical Therapy and 1:1 Occupational Therapy, all of which are oriented to the specific needs of people who suffer from chronic pain. Everyone is here because whatever they have can't be cured. Even if the original problem was fixed, the ensuing pain stayed on longer than it should have. (That is the definition of chronic pain). There are no magic bullets when this happens. And my guess is that a lot of people started this process expecting to find one. Everyone here  has their own story, usually much worse than my own: catastrophic illness and accidents, decades of uncurable pain, destroyed careers, troubled families, financial difficulties, broken dreams. Still, they  soldier on, which is humbling and inspiring. Even in pain camp, I feel like a lucky guy, through no particular merit of my own.

Many  have  doctors who think that there is more to do -- and sometimes there may be  -- but to be accepted to this program, the doctors here must first determine that nothing likely to work has been missed.  Sometimes surgery, medications and infusions can only get you so far. So this program is an attempt by the health system to help people who have reached this point to pick up the pieces. Everyone here is on lots of medications already and we meet with doctors to review how those meds are working and to consider alternative ones. But  we are here for something more. 

By definition, no one here accepts a dead end. Each one goes  through this as part of a struggle to live with something they never asked for. This means is learning how not to inflame your own pain and how to pace yourself. You learn to know your triggers, how to employ better sleep hygeine, how to manage the minutae of daily life. The goal is to be calm in the face of something totally unwanted --  because, to quote John Kabett-Zinn, it is already here. 

Like any new camper in the first week I have had moments of doubt about whether or not this is for me, whether I really have that much to gain by turning my life upside  down and moving to Chicago for a month to learn some of what I already know or could learn more simply at home.  ( FWIW, my corporate apartment is quite acceptable, albeit sterile. At least it has a Whole Foods just downstairs.  But, still, I love home and this is just not it). But, for the moment, I am listening to my own parental voice that is telling me, as my parents did many times when I was a child, to stick it out because things will seem different every day. 

I will keep you posted.

March 21, 2106: Day One of Pain Camp


Very interesting and stimulating day. It was powerful and humbling to meet the other participants in this program: a  diverse group of people united by a history of pain. Most have grappled with this for a lot longer than I have and many suffer from complicated medical conditions: A young man who travelled from the Persian Gulf to participate in this program who had spinal injury from an auto accident ten years ago and has had terrible pain since then, which responds only to opiates. He spends most of his days in bed. There is a sweetness about him and he really seems to want to find a different way. A 50-something bank executive who "has the bones of an 85-year-old woman". She is currently on medical leave and badly wants to get back to work. A cancer survivor from rural Indiana, who developed nerve pain following chemotherapy after breast cancer six years ago. She wants to be able to be a better mom and wife and leader of the family and maybe to find a job in a shop. Each one has travelled a long way medically (and sometimes physically). Another haunted looking women stated that she hasn't slept for days. 

If nothing else, I will have learned something from this program about how badly people can suffer  and that when you see someone who is in tough shape it is clear that "there but for fortune go you or I", to quote the late, great Phil Ochs. Yes, this is obvious to anyone who has lived more that a few years but I confess that it is difficult to know this emotionally.


The guiding notion of this program is to take advantage of the concept of neuroplasticity to help people deal with pain.  In layman's terms (the only terms that I can use) this means that we can learn practises that "rewire" our brains to mitigate pain or, in other terms, to break the link between sensation, pain and suffering.  Ten years ago all this would have seemed flaky but recently the science, as well as the anecdotal experience of many desperate people, has moved in the direction of practises like this. Early on in my research about this I spoke to a very well-credentialed  pain doctor in Boston who sensed my skepticism  and she told me:"In case you think this stuff is flaky, I am here to tell you that it is science." Some doctors don't get this but others do. I have been motivated to come here, in part by a successful experience with Mindfulness Based Stress Release for pain. So this will be an intensive boot-camp in practises of this nature. I look forward to seeing how it works out. Stay tuned.

Friends--

Welcome to my blog -- a chronicle of my experience dealing with chronic pain.

As some of you know, I have been dealing with this condition for nearly a year, following what should have been a fairly routine surgery to fix an arthritic thumb. For some reason, which I couldn't begin to explain  (notwithstanding a year of perpetual doctors visits) my nervous system went batshit (technical term) after the surgery. The result has been on-going nerve pain, which has gradually spread to much of my body, varying greatly in intensity, depending on triggers that I haven't completely figured out. It is a combination of burning, tingling, tightness and itching. It is always there, in varying degrees of intensity. It makes sleeping a challenge, because pain wakes you up. I  am also kind of sleepy a lot of the time because the medication has that effect. My powers of concentration are not what they used to be, which changes how I spend my time.The prognosis is unclear. It could get better, or worse, or stay more or less the same. The pain is not associated with any underlying illness, so I remain a pretty healthy guy. The illness ( or the "syndrome" or the condition" -- I haven't decided how to characterize it in my own mind) is the pain. The pain is the illness. There is, fortunately, nothing else to it.  FWIW, it is not age-related, even if it makes me feel old. It is something to be lived with, rather than cured. In case any of you are getting depressed already from reading this, please don't: I am pretty optimistic that I can learn continue to learn to live well with this, and I am a fortunate and happy person. But there is no doubt that I passed through a fork in the road with this and that it feels different to be me than it did before.

Which brings me to why I have decided to start this blog. I am currently on my way to spend about a month in Chicago at a rehab program for the management of chronic pain. (For you East Coasters out there: no, there is nothing like it this in New York or Boston, just Chicago or Rochester, Minnesota or Cleveland, or Jacksonville , Florida). So I thought this would be a good occasion to share my thoughts about the experience of the program in which I am participating, as well as my thoughts on what brought me here. Who knows, maybe these thoughts can be of some help to others in s similar situation.

So, welcome to my first post. More to follow in the coming days.