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.