March 16, 2021

 I haven't posted in two years -- and I feel some trepidation now:  Can I say something that  can help others and is not just an expression of my own difficulties? I said in the past that I would post if-and-only-if I thought I had something to say that would help people suffering from chronic pain - or their friends and family. I hope to stick to that vow - so I guess if you are reading this, then I must have decided that I met the standard that I set for myself. Maybe this won't be too hard. After all, my experience of chronic pain is far from unique and there is much to explain. 

Chronic pain is very hard to understand unless you have experienced it yourself.  There is something about the fact that the pain never goes away that is very hard to absorb. When I describe what I experience every day, people often ask: "Do you mean that it hurts right now?". Well, yes, that is what the "chronic" in "chronic pain" means. But this is not intuitive because it is so different than the pain that most people experience most of the time.  Even people who care deeply have trouble understanding these conditions. So even in the best of circumstances, with the greatest love, care and support, chronic pain is a lonely road for many who travel it.  I hope that my own desire to be understood resonates with others in a similar position.

The intensity and extent of my pain has gradually grown worse since I last wrote two years ago and has particularly accelerated over the last nine months.  I want to be careful not to make things sound worse than they really are: I keep on learning how to care for myself and to manage my life accordingly. God knows, that people manage much more difficult situations than the one that I face.  So, while I would love to be able to turn the clock back, I am coping okay, notwithstanding some lonely and frightening moments. I consider myself lucky to have many interests about which I am quite passionate. I have been intensely (I guess it is hard to say "energetically") painting, my great interest at this point in life. My family is loving and understanding and - subject to COVID restrictions and the limits of my own physical capacity, I am generally able to fulfill my personal and communal obligations. Often I work at things more slowly than I once did but I still manage to do what I need to do. I take great pleasure in reading and sharing books and ideas with friends. I go to synagogue regularly, albeit virtually, due to COVID. Still, I am sad -- and sometimes afraid -- that the number of hours a day that I can be alert and productive seems to be shrinking. I am not prone to catastrophize but I do sometimes feel shaken when things take a turn for the worse.

This deterioration has largely coincided with the COVID pandemic so up until now, even if I had the inclination to do so, I would have been very cautious about drawing the attention of anyone outside of my immediate friends and family to my own, non-life-threatening, illness. The bigger crisis that the world has faced has put a lot other health problems into perspective but that certainly doesn't mean that these problems have gone away. Since I am 66-years old, I have already managed to get both doses of the vaccine so maybe that is why I am feeling more free to write about this now than I was a few months ago.

While the pain varies in intensity, it is both broader and deeper than it was a year or two ago and my energy level is lower than it was. I nap daily and it is sometimes I feel overwhelmingly fatigued. It is clear to me now that I suffer from fibromyalgia, probably accompanied (as is common) by some sort of arthritic condition. I have been reading a lot about this recently and I find it oddly comforting and reassuring to know that I suffer from a known brain condition. Doctors refer to this as "brain pain" to differentiate this type of pain from pain caused by injuries to muscles, bones or peripheral nerves. There is no local "cause" of this pain. The pain is centered in the brain, where pain sensors are on permanent overdrive. There is no medical magic bullet for this condition. If you are interested in learning more, I have shared a YouTube above, which explains everything in clear layman's terms.

I am going to repeat something that I have said before: if you have a friend who shares with you that they suffer from chronic pain, unless you are a trained professional -- and even then -- don't think it is your job to solve this problem. You are unlikely to have a useful clinical insight that your friend hasn't explored. Chances are, that is not what she is looking for from you.  What would help the most is empathy. Your friend needs to know that you can understand at a deep level what they feel. To some people this seems to come quite naturally. The rest of us need to work at it. Often, the people who help most are those that say the least. I know from experience (on both sides of the table) that it is easy to talk at someone who is suffering. I have a friend who has a condition similar to mine but he has had it much longer than I have. I am pretty sure that before I got sick I didn't hear him very well. I was so freaked out by what he said that I did more talking then listening, as if the sound of my own voice could shield me from the difficulty of what I was hearing. I must have let my friend down in those conversations. In order to feel and express empathy for someone else you need to make yourself vulnerable and I guess I wasn't able to do that for my friend at that time. Getting this right is a lot easier said than done and it is a lot to ask of anyone but I am infinitely grateful to those who have helped me along the way. 

I am not so Pollyannaish that I am looking for a silver lining in all this but I have learned some important things as a result of dealing with this over the past five years. I certainly never imagined at the beginning of this process that I could possibly have learned to deal with the sensations I now routinely feel with without, frankly, falling completely apart. In fact, some of my most difficult emotional moments were at the very beginning, when things were by any objective standard (if there is such a thing) much less acute than they are now. Learning meditation and relaxation has helped tremendously. (Please look at the writings/guided meditations of John Kabett-Zinn if you have any kind of a pain problem. Check out his book "Full Catastrophe Living"). The first time I heard a meditation teacher urging the class to "make friends with your pain" I almost walked out of the room. At that point the pain was my enemy. It was an open confrontation. Only one of us could prevail. I now know better. With training and discipline I am learning to relax through what once scared me the most. With time, my self-identity adjusted so that I could  -- imperfectly and unsteadily -- make some kind of peace with the changing landscape of my life. Of course, it takes a village but I am lucky to belong to several "villages" that sustain me. My world is very different than it used to be and I would be lying if I said that I am completely okay with that but facing an obstacle like this has pushed me to leave binary thinking behind. It is not a choice between being at my prime or being on the edge of an abyss. Sometimes everyone learns to deal with things that they previously thought would be impossible.

Well I hope you feel that I have met the test that I set for myself at the beginning of this post and that these observations can be helpful to others.

Here is to peace and health!

 

 

 

Fibromyalgia: from fiction to fact and to the future - Andrea Nicol

It has been about three years since I last posted anything in this chronicle. I told myself at the time that I would only post anything new if I came up with something new to say that might be helpful to someone else, either to a pain sufferer or to someone trying to understand what a friend or relative might be experiencing. And, although I have continued to be in varying degrees of pain over the entire time, I didn't think I could articulate much that was new, so I have been silent (at least in this forum). 

I can't be sure whether or not what I have to say now passes the bar that I set a few years ago but I can say that over the past three years, I have managed pretty well. My pain has had it ups and downs. Sometimes, usually with the start of a new medication, I think that I am making real progress but this never seems to last very long. I have not been depressed and I think that I have been quite productive in what I do: family activities, artwork, studying and volunteering my time.  My family, of course, has known that I sometimes suffer from a lot of pain and they have had to make allowances for me - probably more than I care to admit to myself. (Sometimes it almost feels as if my family has gradually come to see me as somewhat disabled -- and that I am the only one who didn't get the memo!). I continue to have flare-ups, which sometimes scare me, and I have done my best to try to be cheerful when this happens but I can't promise that I have always succeeded. Overall, my days have gradually become shorter: I schedule my time much less intensely. Fatigue is a big part of the picture, coming both from the experience of pain itself and from medication which may (or may not) be helping. Despite it all, I remain a generally happy person. As I believe I said in my earlier posts, I don't have a degenerative illness like other, far worse, neurological conditions. In this, as in other ways, I am very, very lucky.

One change that I have recently noticed, sadly, is that at nearly 65 years old, having something the matter with me is less unusual among my peers than it was a few years ago. It is easier now for people to somehow see this as another symptom of old age -- which of course it is not. But as my peers unfortunately begin to have more and more infirmities, my suffering is less unusual. It begins to seem like just another inevitable fact of life.

Since it has been a long time, let me review and refine some of my earlier observations about how best to help friends emotionally to deal with chronic pain. Notice that I said "emotionally." I am assuming that you are not health care providers with specialized technical expertise. And even if you are, I am talking about how best to be helpful to friends or family in a personal way. 
It is good to remember that chronic pain is usually pervasive. An injury to a hand or a foot begins a process where your brain may send random pain signals virtually anywhere. So it may hurt in one place more than others but, unlike a discrete injury, the painful sensations are routinely felt all over. When I have a bad flare-up the only places that don’t hurt are my earlobes and the tip of my nose – and I think this is pretty typical. I know this is very hard to imagine and it may seem worse than it actually is, since, on some level, we get used to it and learn how to manage it. But in this respect, it is probably different than the pain that you may have experienced.

Chronic does not mean unchanging. It means that unpleasant sensations are always there. It never goes completely away and the initial cause is no longer the problem. The pain itself is the problem and it changes in scope and intensity, often for no apparent reason. This changeability is hard to explain to people who haven't experienced it. But you should know that if your friend tells you one day that she is feeling well and she exudes optimism, it doesn't mean that you should never ask again. It doesn't mean that she thinks she is "all better" - and you shouldn't think so either. We have flare-ups. We have a natural ebb and flow of pain and sensation month-by-month, hour-by-hour and day-by-day. So, if you have the capacity to do so, please keep on asking, at least occasionally. I am sure your friend will be grateful.

The best help you can offer to someone who suffers from chronic pain is a good dose of empathy. If you ask me how I am and I answer that, honestly, I am not feeling well, it does not mean that I am looking to you for a solution to my problem. So don't lead with: "You should see my chiropractor", or "you should do Tai Chi" or "My brother-in-law is a big doctor. He could definitely help you."  Even advising people to learn to practice meditation is not helpful if it sounds formulaic or preachy. (I confess to being occasionally guilty on this count myself). This is not to say that friends never can offer useful practical advice to one another, but positioning yourself as the one with the answer actually distances you emotionally from the one who is suffering. You are not going to have an idea that makes my problem go away. Chances are that your friend has already spoken to experts, that the matter is not simple, and she is not looking for a magic bullet. It's fine. You don't need to solve the problem but simply saying: "I am so sorry you have to go through this" can be enormously helpful.

This is not easy. Expressing empathy for someone else's suffering requires me to acknowledge to myself that it could just as easily be me who is suffering. And if this is sometimes difficult to do with a non-life-threatening problem, like mine, how much more so in situations that are far worse. I am sure that my own life-to-date track record in this regard is nothing to be proud of. Until I got sick myself, I really didn't get it.  This just doesn't come naturally to a lot of us. But I am certain that people in your life who are suffering from any difficult condition would appreciate feeling that you can in some way put yourself in their place and, yes, that you feel their pain. Easier said than done, I know. But it is worth thinking about. In any case, please don't act as if you know the answer to my problem because you don't. But, since we are friends, your emotional presence can be probably help.

Right now, I am in the midst of an unsettling and sustained flare-up, after having experienced several months of significant relief on a new medication. It's pretty disappointing. Why these flare-ups happen is anybody's guess and I am not going to talk about medications, dosages etc. -- all things that people who suffer from a chronic condition spend an awful lot of time ruminating about. Flare-ups like this have happened to me before and things usually settle down.  Although this one has being going on for longer than usual, I am confident that this one will gradually settle down too. 

But in the meantime, while it is fresh on my mind, let me explain why these things are so emotionally difficult: For one thing, a higher base level of pain all the time is extremely challenging. It is both painful an exhausting. So I have been doing (even) less than usual and it is hard to predict how a day is going to go. I haven't had to cancel any major events or meetings. I still led the Passover Seder, although I contributed less to the preparations than I expected to. I am a loving but extremely unreliable baby sitter for my two grandsons. The fatigue, which goes along with the increased pain, is pervasive and sometimes can't be ignored. I deal with it by some combination of sleep, self-imposed (and very therapeutic) trance and meditation (for the latter I use Jon Kabat-Zinn's guided meditations for pain relief. I think the man is a genius. His book, Full Catastrophe Living, is also worth a look). 

Flare-ups make me anxious, especially those that last longer than usual. It feels terrible to say to myself: "Oh my God, it hasn't been this bad before. What if this is simply it? What if this is my new baseline, to be followed by future flare-ups to an even more intense baseline?"  So far, I have adjusted quite well to everything that this syndrome has thrown at me. And I am really quite proud of that. It has taken a lot of work and discipline to stay on top of the "self-care" that is essential to managing my situation.

When I made a round of (too many) doctors a few years ago, several of them asked me, routinely, if I had ever thought of suicide. They were ticking off a box but I was shocked to even be asked that question. The answer was, and remains, a resounding "NO"" but the question sure left an impression on me. At the time, I was surprised that they even asked but it no longer seems like an unreasonable question for a doctor to ask, especially when evaluating someone whom she doesn't know well. A fragile person, or someone without social and financial resources, could really become unhinged by this. This collection of sensations could make you feel really desperate.  I am fortunately not desperate now but who's to say the next stage isn't going to push me over the edge? The voice of anxiety inevitably rears its ugly head when things turn south but in the moment, I remain confident that I can handle whatever this thing throws at me.

Please don't see this post as a complaint. I really don't have much to complain about. I am very grateful to my friends and family for all the support and understanding that they offer me, day-in and day-out. I hope this post taught you something useful and interesting. I have tried to offer some helpful observations, based on my own experience, on how to be a good friend to others who suffer from chronic pain. I will write again if/when I have more to offer in this regard.

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.