Managing Chronic Pain

Photo: RTP

I have a small cohort of patients who suffer chronic pain so intense and unremitting it prevents them from living normally.  They often don’t work, shop, go to restaurants or movies, leave their homes or sometimes even their beds except to visit doctors, or have meaningful relationships outside their immediate family, who often struggle to live with and care for them.

One patient in particular has pain that’s so severe she’s become wheelchair bound, chronically depressed, and regularly experiences times when she contemplates suicide on a daily basis. Most primary care physicians, I’ve observed, are woefully undertrained in chronic pain management, often more concerned about painkiller addiction and drug-seeking behavior than quelling excruciating pain they don’t feel themselves (studies show such concerns are generally overrated in these patients).  But even physicians who find themselves comfortable treating chronic pain aggressively with all the tools we currently have available sometimes find those tools inadequate.  Most people outside the medical profession don’t routinely encounter people whose lives have been ravaged by chronic pain so don’t realize they even exist, much less grasp how awful their lives typically are.  But such people do indeed live among us.

CAREGIVER’S ATTITUDES

I remember the first time I met my patient.  She described in clear yet clinically unemotional detail not just the quality and severity of her pain but its impact on her life.  I found myself moved by all the losses she’d suffered at the hands of it:  days to weeks of time absent from work, periods she desperately wanted to but couldn’t play with her children in her neighborhood playground, and the strain on her marriage that eventually shattered it.  I told her I would do everything in my power to help her and that I would not abandon her.  Strangely, her response to my saying that, in contrast to the way she’d described the ruin of her life from pain, was to choke up with tears (which she tried, heartrendingly, to hide).  She thanked me for my commitment in hoarse tones.

Only several years later did I come to understand her reaction.  Other providers before me, when they too had tried to help her and failed—not for lack of trying and through no fault of their own—had appeared to her to lose all interest in her, gradually coming to return her phone calls sluggishly or not at all, to resist filling prescriptions for her, and even to become irritated when she would report her pain had increased (as it sometimes did for no discernible reason).  They had all seemed to care when they’d first met her, she told me, but all failed to stick it out with her in the long run.  She knew medicine’s ability to help her was limited, but what she wanted more than anything besides pain relief, she told me at that first visit, was  someone who would simply stick by her even if that was the full extent of what they could do.

Ironically, this proved itself even more difficult for her previous providers than finding effective ways to treat her pain.  Though I never said so, I well understood why.  They hadn’t abandoned her out of indifference or lack of caring but, I believed, from frustration—not with her or her pain but rather their own impotence.  Perhaps as a result of a psychological coping mechanism, as a group, doctors tend to ignore what they can’t fix.

I, too, have felt inclined to ignore patients I can’t help.  And, after a time, I began to feel it with her too after proving no more adept at controlling her pain than the doctors who’d tried before me.  But she’d warned me well.  By calling attention to what her previous doctors had done, she forced me to reflect on their behavior and on my tendency to mimic it.  By making me acutely aware of the temptation to turn my back on her, she predisposed me to resolve not to.

And stick with her I have, for the last ten years.  And not abandoning her, I’ve come to realize, is the best treatment for her pain that I’ve had to offer.  Not that it’s been adequate, by any means.  But it has been helpful.  At least, that’s what she says.

WHAT CAN BE DONE

Pain is a fascinating subject when one isn’t experiencing it oneself.  It may feel to us like a single unified experience but in fact is generated in our brains in a series of sequential steps.  Counterintuitively, the physical sensation of pain registers in a different part of the brain than does its aversive quality.  We know this because of patients who’ve had damage to the latter portion, the insula, develop a syndrome called pain asymbolia wherein they feel the raw sensation of pain but not its aversiveness.  That is, they feel pain but not its painfulness.  If that seems hard to understand, it’s because to those of us with an intact brain who are incapable of experiencing them as separate things, it is.

But it raises an interesting possibility:  might not there be methods we can employ that exploit this hidden duality?  Rather than attack chronic pain at the trigger point (i.e., an injured tissue or even the misfiring of the peripheral nervous system itself), perhaps we could attack it where it actually lives, in the brain itself.  If we can’t do much to alleviate the source of chronic pain, can we in some way reduce its aversiveness?

The answer, at least to a limited degree, seems to be yes.  A number of studies have explored ways to do this.  A recent article in U.S. News reported the results of a small study in which “healthy medical students attended four 20-minute sessions to train them in ‘mindfulness meditation,’ based on techniques such as focusing on breathing and banishing of distracting thoughts. Before and after the training, participants underwent brain scans with a pad heated to a painful 120 degrees attached to the back of their leg. They reported a 40 percent decrease in pain intensity and a 57 percent reduction in pain unpleasantness following their training. Morphine and similar drugs typically reduce pain by about 25 percent.”  If validated by other, larger studies, this represents an astounding result.  When considered in combination with the results of another study in which viewing a loved-one’s picture had pain-attenuating effects, we might hypothesize that the degree of aversiveness of pain is at least partly determined by how much attention we give it.  If so distraction—though by no means a cure for chronic debilitating pain—may be an effective treatment.

The problem with pain, of course, is that it’s designed not to be ignored.  Normally, acute pain indicates something is wrong in our bodies that needs our attention.  But in many chronic pain syndromes this isn’t the case.  Rather, the pain itself becomes the disease, often centered in an “overactive” nervous system response rather than chronically injured tissue (though the latter is certainly common as well).  Distracting oneself from such chronic pain requires consistent effort that’s difficult to sustain.  But the study above gives me hope that though we don’t yet have the technology to relieve all chronic pain sufferers of their experience of pain, they themselves may be able to surmount their pain’s aversiveness in a way that enables them to reclaim at least parts of their lives.  It’s not a good solution, I readily admit.  But it’s better than nothing.

Though how we subjectively experience pain is undoubtedly influenced by many other variables, just the notion that we have more influence over our experience of pain than previously thought is encouraging.  Though I’ve suggested to my patient, based on the study above and others, that she begin a program of meditation, she hasn’t yet.  “How could it hurt?” I ask her.  “What else do you have to try?”  She acknowledges my logic and promises to start.  In the meantime, I continue to do what I’ve done:  stand by her and care.

Next WeekThe Two Kinds Of Belief

34 comments to Managing Chronic Pain

  • Joy Corcoran

    Thank you for posting this and shedding light on the frustration doctors feel in dealing with chronic pain. I am so glad to hear that you have kept your relationship with your chronic pain patient. It’s so disheartening when a doctor gives up on you or belittles your problems. I have found that meditation and art help—training myself to rise above the pain gives me a place to go that pain can’t destroy. Even when I’m flattened by it, the arts I have enjoyed provide a window back into the larger world. For years, I’ve had a chronic neurological condition I learned to rise above and this helped me use the same techniques to rise above pain. It’s not a “cure” in the traditional sense, but it’s a way of living creatively and fully. I still “lose” time and activity to my condition, but the arts have helped me create a healthy way of living within and above my limitations. Creation involves a lot of repetitive, slow focus, as does meditation. Hand in hand, the two can be quite healing.

  • Thank you for sharing your experience with this very difficult topic. I work with older adults and their caregivers and an issue that often arises is the health care community’s fear of the patient becoming addicted to painkillers. This is very frustrating since many older adults are at the end of their lives and are dealing with chronic conditions that will not heal. In addition, I have tried “mindfulness meditation” to help reduce anxiety in older adults and this can be difficult for individuals who have cognitive impairment, but it does work well with those who do not have cognitive impairment.

  • Good one, Alex. As a pain doc, I have noticed some of the same things, being aware that doctors like their patients who respond well, and come to “dislike” or ignore or pooh-pooh the patient who continues to have pain.

    It is human nature, for those who try to help, to get frustrated with the situation where they cannot help, and they do take it out on the patient, via various unconscious strategies.

    The thoughts on re-framing pain are useful; there is much for all of us to learn about non-pharmaceutical approaches, especially those that empower the patient.

    Thanks again,
    Marc

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  • Diane Myers

    I am living with a family member who experiences chronic back pain and is now dependent on heavy doses of pain killers. It is the most challenging focus of my life. The anger, personality change, and depression that are a result of the unrelenting pain is devastating to our relationship. Other family members will no longer visit. I am here for the duration, but the costs are monumental in scope. Thank you for your words and suggestion to meditate. I can suggest that to my family member and can begin this practice for myself to build a new coping skill.

    Diane: So sorry to hear it. You might also find helpful The Caregiver’s Manifesto and perhaps When Someone You Love Is Unhappy.

    Alex

  • Martha Allen

    I appreciate this thoughtful investigation into chronic pain. I usually like to meditate when I’m not in pain because with pain it is hard not to feel it in all it’s intensity. I prefer to distract myself, when possible. You say this too, but that it is also worth exploring meditating through the pain. I will give it a try. I think I also like to do things when I am in pain; otherwise I feel as if I am “losing” so much of my life to the pain. Meditation can probably also help me not be so concerned with the “loss” of time . . . the accepting of what is.

    Thanks,
    Martha

  • Chris C.

    When I had my second child, I decided to “go with” the pain/sensations of childbirth instead of fighting against it. It helped immeasurably, not in stopping the pain so much, but more as in looking at it as an object instead of part of myself and reducing its impact on my emotions. Of course, I knew it was for a finite amount of time and I’m sure that helped; I’m not equating this with the suffering of chronic pain, but just an observation about what might help manage some kinds of pain.

  • Thank you, Alex, for not abandoning your patient. I vividly remember the day about eight years ago when I’m sure I watched my GP make the decision to stick with me even though he couldn’t “fix” me. I don’t think it was an easy decision on his part (my illness is no fun for him either) but I’m so grateful that he made that decision. I know I have an ally in the health care system, someone who would “vouch” for me if, for example, I found myself in the ER with doctors who didn’t understand my illness. It gives me real peace of mind.

    As for chronic pain, mindfulness meditation helps. I think it’s because, in addition to the physical sensation of pain, my emotional reaction and stress-filled stories about it (“I hate it” “It will never stop”) cause me to tighten muscles around the point of pain. Then those secondary muscles start to hurt, increasing my overall pain load. But with mindfulness, I’ve learned to recognize those emotions and those stories. Just being aware of them, without aversion, loosens their grip on me (and on my body).

    Again, thank you for not abandoning your patient.

  • Emily

    Why is it that people are unable to live normal lives when they have chronic pain? I mean, I don’t doubt that the pain is real but what is the actual mechanism that is keeping them in bed when the pain gets bad? Is it just the feeling of misery? Would it be possible to overcome the miserable sensations, or is there something physically prohibiting it?

    Emily: I think it depends on the type, severity, and location of pain. Have you ever put your back out? When every movement causes the pain to rise sharply, movement itself feels physically difficult if not impossible. Other types of pain (e.g., migraines) can be so severe that one’s entire focus is swallowed up by it, making sometimes even thinking difficult.

    Alex

  • Jill

    There is an excellent 8-week program called “Mindfulness-Based Stress Reduction” started by Jon Kabat-Zinn at UMass – http://www.umassmed.edu/cfm/stress/index.aspx. It is helping me a great deal with cancer treatment and should be very helpful with chronic pain.

  • Crystal

    Not saying this would work for everyone, but I had severe chronic pain in my back for almost two years. Lying in bed lots of days crying kind of pain. Saw many specialists, had all tests, including MRI, could never find anything. Had every treatment I could including chiro, acupuncture, massage, yoga, meditation, Qigong, drugs, etc. etc. Was told I would have to learn to live with pain. I was only in my forties. I kept searching. Found an M.D. who was passionate about nutrition. She gave me the gold standard allergy test; we found out I was allergic to corn products and sugar. She told me to cut out all chemicals and sugar from my diet. In three weeks I was relatively pain free. It took about another six months or more for my body to believe it and really let go of the anxiety and fear if I felt a twinge. I used Intra Muscular Needling to release a couple of hypertonic muscles. I have been pain free since. That was six years ago. I have gone back on sugar several times in the past couple of years and in a very short time, say about a month, I feel my back tighten. Sugar, allergens and chemicals cause my soft tissue to inflame. Months of that and then I would get muscles pulling and going into spasm like the it did in the old days. I say this in case there may be patients of yours like me. It was such a simple fix to such a debilitating condition. The benefit of eating so clean is that I have way more energy and a much better sense of well-being in general.

  • Very interesting post on several levels, and how wonderful for your patient that you won’t abandon her. It wouldn’t surprise me if that in itself had some kind of effect on her pain.

  • I have to thank you for this. A close friend lives with pain. How bad? She hasn’t had a solid night’s sleep in 20+ years. She does not tolerate morphine/pethidine.

    I find her doctors too casual, but other than get irritated/upset, what can I do?

    Austere: Perhaps point your friend to When Doctors Don’t Know What’s Wrong.

    Alex

  • Michelle

    Alex,
    Thanks for writing this! I think the most wonderful part of this blog is that you did not abandon your patient. She is right. The impact by just agreeing to try and listen is huge on helping to minimize pain. I also experience chronic pain and realized sometime ago that the best thing I can do is try to keep a positive attitude and meditate and it does help. My old PCP came into the exam room and started to yell at me saying that I need to knock this sh^* off and that I needed professional help and this fibromyalgia sh*^ has got to stop. He also mentioned that he has a health sob story he could share as well. I’m still hurt by this experience and in the middle of being ill I had to seek a new doctor and the effect of that interaction was it’s hard for me to trust my new doctor even though he has done some great things. What u gave your patient is compassion which leads to trust which means a lot!

  • What about the uses of gentle exercise, such as Tai Chi, Yoga or Pilates? I find Pilates helps a great deal with lower back pain/sciatica that I have, but the patients you describe seem to be in much more pain than the regular run-of-the-mill back pain. Do you think a combination of therapies—medicine, meditation, exercise—help reduce these patients’ anxiety, pain and suffering?

    Beth: I think it depends on the pain. For example, regular walking has been shown to decrease the chronic pain of osteoarthritis of the knees. Walking has also been shown to improve the pain of migraines. But as far as I know, walking seems to do little for the bone pain of metastatic cancer.

    Alex

  • Mary K

    Alex, I believe the word to describe what you’re doing for your patient is “paraclete.” You are walking alongside the patient you are caring for.

    What I have found in my experience is that people become tired of those who have chronic or extended illnesses. They frequently feel frustrated that nothing they do seems to effect a “cure.” This frustration turns into anger at the individual or avoidance of apparent “failure.”

    The paraclete knows there is no cure he or she can bring about, but knows instinctively that presence is powerful, as is the acknowledgement that “This sucks.”

    Mary: I like the term. Never heard of it before.

    Alex

  • Just in case Mary (who obviously knows the term well) doesn’t get back to you on it:

    It comes from the Greek, and is most commonly understand through Christian/Roman Catholic language as The Paraclete = The Holy Spirit, the Comforter. Reference: Jesus, after his reappearance to the apostles, said, I go, but I send you the Holy Spirit to comfort you.

    Whatever a person’s beliefs or non-beliefs, it’s pretty clear that there is something of the divine (again, however you want to define this) in accompanying someone in their difficulty. Simply to be present is to comfort.

    As you testify. (As your patient also testifies.)

  • I am a physician and know what suffering people go through and how tired they are of taking numerous medications that don’t effectively treat their pain and can lead to chronic addictions and side effects. My mother is an example of this. This motivated me to become board certified in Integrative Holistic Medicine to learn more about alternative paths to healing. It is essential to disengage the conscious mind and use the healing power of the subconscious mind. In this process of educating myself about holistic remedies I just happened upon a company that has created a technology that can help relieve symptoms of chronic discomfort, lack of energy, insomnia, and sinus allergies without the use of medications. It is the technology of holographic chips which utilizes energy embedded in the holograms to balance the body’s energy channels (meridians) much like acupuncture, but without the needles. It is having miraculous results on thousands of people. No hype. They have expanded their line to include herbal whole teas and a wristband to round out their product line, and are just getting started. They are already in 52 countries in less than one year. To speak to their credibility, they have just partnered with the NBA/WNBA to distribute the new CX2 Plus wristbands that will be the official bands of the NBA/WNBA. The NBA is the 5th largest franchise in the world, so this is a major testament to the quality of the product and its beneficial effects. There is hope for those who have been hopeless and suffering. The website is http://www.healthywealth.CieAura.com. I can be contacted by clicking on Contact on the website. I can give out samples to those who are interested in trying them out. You have probably not heard of this company yet, but they are growing rapidly and will eventually become a household name.

    One other suggestion is to have the patient seen by an experienced functional medicine doctor or to look into a functional medicine approach, which looks at the total body, not just the site of pain. This looks at the body from a systems approach, instead of a disease approach. The gut, immune system, oxidation/redox potential of the body, energy system and other key areas are looked at to look at the functionality of the entire body. I just became aware of functional medicine and it makes a lot of sense. It is what we are not focusing on that may be why the patient is not getting any relief from her symptoms. THERE IS STILL HOPE OUT THERE.

    Carolyn: While I’m open to believing anything if good evidence exists to prove it’s true, I have to admit to being extremely skeptical of the above. Can you point to any studies that support the claims for the technology you mention? Testimonials are good for marketing but far too biased to prove anything.

    Alex

  • inspiraven

    Wonderful article.

    I have suffered from rheumatoid arthritis for over 30 years, and have not been visited by the remission fairy for almost a year. I live with chronic pain and disability.

    I had the good fortune to have a mother who taught me from a very early age the practice of meditation. I had not heard it expressed as “feeling raw sensation of pain but not its aversiveness” before but I want to testify that this can and does work. Energy follows thought, and most of our reality really is experienced in the mind. This rising above, observing instead of feeling truly helps alleviate, maybe not the pain, or sensations, but the absolute horror of ones body feeling this way, and all the adrenaline fears that come with the pain. Taking power away from our emotional (and chemical) reactions to the pain goes a long way. Visualizing the pain in some way and separating it from yourself can bring, if not relief, often the strength to endure it. It takes a lot of focus sometimes, but pain brings a kind of intensity that can be utilized for this.

    Also, I too have seen this seeming abandonment by caretakers and want to thank you for not only standing by your patient but bringing to light this issue in an understanding way for all involved. Thank you for this. I think you’re on the right track.

  • Inspiraven Babble Box » Managing Chronic Pain

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  • Tara C

    What a moving article—I am sure that just giving your unreserved support helped her immeasurably.

  • The problem: you can’t distract yourself 24 hours a day from all-day-every-day-sitting-standing-walking-lying-pain.

    The moral of the story: if you’re not the one IN pain, don’t judge. It can completely take over your life, your thoughts, your entire existence. What outsiders generally surmise is that the person is a weak, complaining whiner who needs to suck it up and stop feeling sorry for themselves. It’s mostly in your head, they think.

    I’m 3 1/2 years into relentless pain from a muscle injury that was never diagnosed properly at the outset, because my pain was outright dismissed by first one, then several, doctors.

    You have to risk being a “complainer,” advocate for yourself, and trust that you know when something is wrong with your own body. Find someone who a) actually listens and b) is competent to diagnose your type of problem in the first place. I had one GP who refused to refer me, despite the fact that he had no idea what was causing the problem.

    I have suffered needlessly through many horrific days because of doctors refusing to prescribe the only drug that touches the worst days (Percocet). I would love to see those doctors on their knees, desperate, suicidal, and without access to relief because they might be addict-wannabes. It’s ridiculous.

  • David

    Alex, you write, “Distracting oneself from such chronic pain requires consistent effort that’s difficult to sustain.” This sentence reminds me of sitting sesshins (retreats) with the Melbourne Zen Group. On day two or three the teacher used to give a talk with the broad subject heading: “working with pain.” By day three all sorts of pain, predominantly back & knee pain, used to kick in amongst inexperienced meditators. Her words, paraphrased, went something like this: “When experiencing pain, adopt a position of curiosity towards it. Look at it with an open non-judgmental awareness. Observe it to see if it is pulsing or throbbing or tingling or rising or falling. Do not clench or tighten or contract around it. Look at is loosely, dispassionately. Is it white or silver or red with heat or is it blue with cold? Is it waxing or waning? Be curious about it. Observe it with detachment. Enter into it with interest.” And so on!

    I have found these instructions to be helpful. What happens is that—given the nature of my “monkey mind”—by the time I’ve done a little examining, looking into or investigating of my pain, my mind has become distracted & my actual experience of the pain is zero. The key word above is curiosity.

  • Liana

    Yes, as downfromtheledge said: “The problem: you can’t distract yourself 24 hours a day from all-day-every-day-sitting-standing-walking-lying-pain.”

    I am aware that this is not exactly the subject, but to me the subject of physician-assisted suicide is relevant here. After 19 years of what is now never-ending pain, pain which has robbed me of everything, I am beyond sorrow—I am frustrated and angry that those of us who have had enough suffering are unable to have help ending our lives. This subject seems to be taboo, and I don’t understand why. Is it necessary to experience a life of unrelenting pain in order to understand that when there is *no* answer, no painkiller, no therapy, no relief of any kind, the only truly compassionate help is help in ending the life of one who wants it to be over? (And this nonsense about this being a “slippery slope” is nothing but exactly that—nonsense. Our society is always dealing with complicated issues and forced to make decisions that take much thought and judgment—”slippery slopes” can be found everywhere.)

    I have a wonderful, compassionate primary care doctor who has helped me in whatever way she can, but when there is nothing left to try (after wasting many thousands of dollars on therapies not covered by even those of us lucky enough to have insurance). Why must one go on suffering? I have been very fortunate to have seen very caring specialists and alternative therapists, extremely kind and competent people, to say the least, people who all did their best. However, when there is no solution to the tormenting pain, the answer, at least for me, is obvious: show us the same mercy we give to animals, who are not even able to tell us what they want, and yet we know the right thing to do.

    For those of you who may think it is easy to just swallow some kind of pill that will kill you, it is not: it is now very hard to get the medication needed (barbiturates, for example) to be successful, and even then, things don’t always go according to plan, nor does one want to jeopardize someone else by asking for their help (with a plastic bag, etc.), thus making it a very risky endeavor, which, if botched, can make matters worse, if not for you, then for your family…as in your ending up in a coma.

    Wouldn’t it be far better if we could say goodbye to those we love, and leave peacefully, without worrying that we may not succeed? Is it civilized to insist that people go on living a tormented life whose every minute is filled with pain? Is it compassionate? Why not mercy for those of us whose every minute is agony? Isn’t quality of life more important than quantity? Isn’t it time we grew up and realized that there are things worse than death?

    Liana: This is such a tricky issue. In principle, I agree with everything you’ve written (you might refer to a previous post, The Six Reasons People Attempt Suicide). But I say tricky because, in the absence of a terminal illness, one must balance the pain one feels and thinks one is likely to continue feeling in the future with the possibility of an advance that might be developed to relieve it. This, in my view, is a judgment call only the patient can make. I wholeheartedly endorse a patient’s right to choose suicide if they can rationally decide (meaning, in this circumstance, in the absence of a major depressive or psychotic episode that seems directly causative of their desire to die) that their quality of life is so compromised and likely to remain compromised that life is no longer worth living for them. I have to add, however, as a physician, I would find it extremely difficult emotionally to help such a person, whose choice I would support, actually commit suicide.

    Alex

  • Dan

    Great post, Alex. I do have a question: do you consider meditation a form of alternative medicine? It seems perfectly science-based to me, yet people like the MD above seem to see it as outside mainstream medicine which should lead us to embrace all kinds of other “remedies” which are either not based in medicine, or actually have scientific reasons to believe they are not effective. It seems to me that meditation fits well within our current understanding of neuroscience and psychology and shouldn’t be considered “alternative.”

    Dan: I agree with you.

    Alex

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  • Christine

    I want to thank you for this blog, because I found so many very, very useful articles. I stumbled upon your blog while looking for some hints whether to follow the intuition or whether to listen to the reason (I just finalized making a decision: to quit or try again, I chose to try)…and I discovered so much more. I come from a quite complicated ethnic and religious background, moved from place to place, changed schools, dealt with people disliking me because of my origin/religion, etc., yet before I read some of your articles, I didn’t know how to shift my perspective on my past and how to help myself. Thank you once more; your blog helped me and made a difference. Thank you for revealing so many personal details and the ways you resolved your own questions and problems.

    Christine

    Christine: I’m so glad you’re finding my posts helpful. Welcome!

    Alex

  • Leslie

    To Emily and others:

    I can speak firsthand about why chronic pain interferes with living a normal life. It’s because the pain can have an impact on everything you do. Even if it does not necessarily cause constant misery, it changes the way you do every little thing because it forces you to adapt to it.

    I would encourage people who do not live with chronic pain to experiment by putting a rock in their shoe and going about the day as if there’s no way to eliminate the pain and discomfort of the rock. And imagine that you can’t ever remove the rock.

    You start to limp. You walk slower. People stare because you limp. You might feel uncomfortable with the attention. You look for opportunities to sit more often. You have to reconsider how to exercise. You may gain weight. You may have to buy bigger pants. You switch to comfortable shoes even if they aren’t fashionable. People stare at that too. You may be unable to do your job. Or you can still do it, but you have to figure out how. You may not want to let your boss know, so you cover up. You might become irritable, depressed, sad, angry, impatient, or unfriendly. You bring these feelings into your relationships. Not everyone will understand. You might have a positive attitude, but still have to drop out of certain hobbies. You look for new hobbies. You miss the old ones. You can’t press the pedals of your car. You have to ask for rides. Your spouse/roommate/kids have to take on more chores at home. They might resent it. Or not, but it still impacts them. You have to say no to friends who invite you out for activities on your feet. Some of those friends stop inviting you. But some friendships improve. You may have to use the elevator to go one floor. You hope nobody looks at you for it. You may be in too much pain to sleep. So you build up consecutive nights of bad sleep. So you have less energy and sharpness. You may be less interested in being intimate. Or you become more interested because it’s a nice distraction. You may be unable to play with children. You might have to spend a considerable amount of money on doctor visits and medication. Some health care professionals don’t understand how much you hurt and don’t treat you as strongly as you need. You make adaptions around your home. Ever sat at the stove? Put a chair in the shower? Crawled on your hands and knees around your house because your husband is out and you’ve had a long day and can’t walk any longer. Sliding down the bannister is fun though.

    All because your feet hurt too much. I know that all of these things happen because they happened to me.

  • Alex, bless your heart for sticking with her. I have migraines and chronic daily headaches and, usually, as soon as those words comes out of my mouth, the doctor’s eyes glaze over and they usher me out of the office as quickly as they can.

    For your patient to have someone who’s willing to listen and trust that her description of her own experience is accurate is a treasure far greater than most of us get. It does ease one’s pain to know that, when you go to the doctor, even if the doctor can’t “cure” you, they do believe you and you don’t have to fight them.

    It’s even making MY pain a little less, right now, to know that there’s a chronic pain patient out there who gets that little extra peace of mind.

    Good work.

  • Don Scott, MD

    Alex,
    Thanks so much for this and all your essays. Really wonderful and often help me to reflect on my own practice and practice. I shared this particular essay with a friend of mine who suffers from chronic pain. She has gone without a specific diagnosis for some time, even though she has been given several different, and evolving, diagnostic labels. She is lucky to have docs that by and large have stuck with her and not just thrown meds at her. I think the literature on “unexplained symptoms” is interesting in its relation to patients with unexplained chronic pain, which is too often as misinterpreted as being synonymous with “psychogenic” pain. There is so much that we don’t know. What I do know is the importance of being present with patients, showing compassion and the primacy of non-abandonment.

  • nicky

    I suffer terrible arthritis in my shoulder and back, I don’t like to take too much medication or use chemical enhanced products believing they only create more problems down the track. I have found a wonderful product called NATURAL HARMONY; it is made with all natural products including essential oils and natural mineral salts; it is Australian Made and non-greasy so it’s great before bed and under my clothes; on the bad days it may not eliminate the pain; however it takes the real harshness off reducing my pain from say a 8-9 down to a 2-4. I’m also told some people use it on their pets who suffer arthritis also. I have found the more I use it the better it works. Anyway hope this helps you like it has helped me and believe thousands of others.

  • Demetrice Deneui

    With regards to chronic pain, mindfulness meditation can really help a lot in reducing it. It is a bad idea to become dependent on pain killers.

    Warmest regards http://www.healthmedicinelab.com

  • Barbara

    Thank you for this. It’s been written a few years ago, but really: thank you.

    I suffer from a couple of things starting with MCS. I experience pain on a daily basis. Even if the pain is weak enough to not be a big problem in my daily routine, I know how a limited life feels and how doctors go about something they don’t fully understand and/or can’t help with.

    That you even say you would like to stick with her, this kindness alone is a miracle. For actually sticking with her, you have my deepest thanks.

  • Angel

    Well written and informative. Unfortunately I have the unique experience of being a drop-out now 30-something med student who’s life was destroyed by chronic pain. It’s truly interesting to see this from your perspective. From mine, a once very promising life destroyed by the ravages of lupus RA ulcerative colitis. I’m now a shut in for the last 7 yrs as pain destroyed my hopes, dream,s ambitions, joy. It’s a thief that comes and rips at your very soul until you have nothing left. I was going to help others and now I can barely help myself. It’s a cruel thing and yes just sticking with your patient means more than anything.

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