Blaming a patients’ doubts about “getting better”

How doubts about getting better influence chronic pain treatment success | Scienmag: Latest Science and Health News – May 2017

A leading psychology professor at The University of Texas at Arlington has focused international attention on how a chronic pain patient’s irrational doubts about never getting better can influence both his reactions to pain and even treatment outcomes.

Irrational? When your pain comes from a genetic flaw, it cannot “get better”.

This dismissiveness is typical of doctors who assume your complaints are just normal aches and pains or from a temporary injury.   

But what if your genes condemn you to fragility? 

I have constant micro injuries due to my faulty connective tissue, which results in a series of small injuries that can accumulate until pain results.

The influence of these irrational beliefs on both patient behavior and chronic pain treatment success is of growing interest to the scientific community.

“We are seeing that patients who tend to have these irrational beliefs are at greater risk of misusing opioid medicines and take longer to return to work when experiencing work disability for acute lower back pain,”

People with more serious pain will use more opioids so, when misuse of opioids is defined as some random milligram threshold, they will be labeled with “substance use disorder”.  

can influence both his reactions to pain and even treatment outcomes.

The irrational or maladaptive beliefs that the pain will never get better are clinically known as pain catastrophizing

said Robert J. Gatchel, UTA Distinguished Professor of Psychology and Nancy P. & John G. Penson Endowed Professor of Clinical Health Psychology.

“New research on brain imaging and the genetics of catastrophizing are highlighting the increased complexity of these beliefs and underline the need for a more complete model for pain treatment.”

The genetics of catastrophizing? There is no such thing.

But that doesn’t stop them from using this non-existent idea in their press releases.

And they are working on more attempts to prove that chronic pain is a problem of “wrong thinking”, i.e. catastrophizing:

Additional work in the UTA research laboratories of Dr. Fuchs, Dr. Yuan Bo Peng, and Dr. Qing Lin is partially aimed at exploring the biological mechanisms that might help explain how cognition impacts pain processes.

 

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22 thoughts on “Blaming a patients’ doubts about “getting better”

  1. scott michaels

    Stenosis anklosing spondillitys and degenerative disc disease DOESN’T GET BETTER IT VETS WORSE AS DOES THE PAIN.
    YES A KNEE REPLACEMENT PAIN GOES AWAY. UNLESS WHEN ITS DONE WRONG. THEN THE PAIN IS FOREVER. SO MANY OF US HAVE FOREVER CHRONIC PAIN. WE NEED OUR MEDICINE BACK. When will they admit opoids work for the right patients in high doses. Is not a darn secret!

    Liked by 3 people

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    1. Zyp Czyk Post author

      When you have a permanently pain-producing syndrome, there seems little alternative but to take opioids (plus all other pain relieving treatments that work) or to put up with it as long as you can and then leave this life.

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    1. Zyp Czyk Post author

      My bad attitude is stuck in my upper back lately. Bad thoughts are causing intense muscle spasms in that area. I’m thinking of sunshine, flowers, and puppies, but it doesn’t seem to help…

      Liked by 3 people

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      1. leejcaroll

        I hate that sunshine silliness too often people say: you have to think of happy things good things positive tings. If they had a, saym dental pain, I havent but with trigeminal neuralgia that has been the closest analogy I have been told, wooould thhey fl thiing happy thoughts woul take them way from the pain? Doubt it.

        Liked by 2 people

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  2. Kathy C

    This is truly astounding.
    There is a pattern lately with these popularized “Articles.” They re-iterate myths, like the one about “Catastophziing” which has not been proven. The Idea of “catastrophizing” is based on biased beliefs by created by the Psychology Industry. It has been a easy out for Physicians, and a good business for Psychologists and Psychiatrists. The economic benefits alone have perpetuated this mythology. This allows Physician to deny care, without a second though, and insurance companies benefit by having an easily accessible way to deny payment, by making pain a “Psychological Issue.”
    This plays into the myth, that if you believe, you can overcome anything, perpetuated by Mass Media Propaganda. The over-empahasis by the Media , on “The “One who overcame.” For Example, It is a common theme. I call it an “Offset.” We have access to the Facts, Data and Numbers, of a lot social problems. Poor Children, we know that half of America lives in Poverty, to get us to ignore it, the Media tell us of the one underprivileged kid who gets to Harvard or wins an award. Of thousands of Veteran Struggling, we only hear of the one who ran a Marathon. They never mention the support system or other factors that were involved, or the number Veterans who will never run a Marathon, or poor kinds that don;t get to Harvard. Typically when they interview the subject, they will attribute the win or admission to a “Higher Power, Faith or Positive thinking. This reinforces the myth.
    This Article will get traction, it has a short easy to understand narrative. They want an easy answer, that is also profit generating. Physicians who are told by Lobbyists their biggest problem is “Liability” will jump on this chance to ease their consciousness. This plays well with Media Mythology, the current false narrative about Pain. They are writing it out of the narrative. a condition that costs billions of dollars a year, is unmentioned in any discussion of opiates. As if they appeared overnight for no reason. We can think of thousands of examples of people experiencing pain due to Injuries, Genetic Conditions, or Medical Mistakes. Now we can ignore all of it with a clear conscience.
    After all we don’t empathize anymore with brutalized, injured children, whether from War, or cuts to funding of Children’s Services. We have become a nation of Pod People, smiling and drinking our Lattes as intolerable evil goes on. The Medical Industry had to find a way to discredit million of people with pain, suffering children, and Veterans who came back injured. catastrophizing allows deniability. There are a lot of overworked Injured Americans, the product of our Low wage industries. This is clearly a target of the owners of these Industries, the idea that one injured worker could get compensation, probably keeps them up at night. This is just a clever Industry strategy, to keep costs down, and discredit the injured.
    It is like looking where the light is better. The repeatedly “Research” catastrophizing, conflating, the emotional distress of pain, or even worse attempting to describe pain to a stone faced Physician or Psychologists, who absolutely believes it does not exist or there is an ulterior motive. Most interesting is that there is no research on the incidence of these. If this idea is repeated enough, it becomes belief. It does not have to be factual. We are a nation of pod people. The “research’ is directed by profitability. They want us to believe now that pain or disease are due to “Bad Thoughts.” Intangible things we cannot see. This is Magical Thinking, the “researchers’ are the ones who are Irrational, for holding Irrational beliefs.

    Liked by 2 people

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    1. Zyp Czyk Post author

      I agree: “They want us to believe now that pain or disease are due to “Bad Thoughts.” … This is Magical Thinking”

      You can see what I think about this by doing a search on Catastrophizing on this blog. I found other research that negates this popular idea, but I had to do an intense search to find it.

      It’s amazing how repetition creates “alternative facts” from thin air and I feel helpless in the face of this onslaught of misinformation that shapes public opinion.

      I never imagined my medical care could be controlled by public opinion, but that’s what’s happening.

      Liked by 2 people

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  3. Carol Levy

    1) yep many of us have disorders that cannot get ‘better’ no matter what is thrown at it. 2) I dont think I am the only person who has the opposite thought (and spoken) behavior: I expect something sometime somehow somewhere to end my pain so I continue to seek out new treatments long after it is (probably – since hope springs eternal) sensible, logical, reality.

    Liked by 1 person

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    1. Zyp Czyk Post author

      What we’re looking for may just be death.

      Science has become irrelevant and public opinion, shaped by the most often repeated misinformation and alternative facts rules our medical care.

      Liked by 2 people

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    1. leejcaroll

      Therein lies the rub. The consequences of ignoring reality (for someone like me as my comment above) is that I keep agreeing to try new things. I have been lucky so far. After the point where maybe I should have given up (in?) the risks have been minimal ) But I am going to have my experiemntal implant removed, it failed after 20 yrs, having worked slightly, so I can get an MRI to see if there is another surgery he can try against my trigeminal neuralgia. Hope springs eternal but crazy is doing the same thing over and over again and expecting different results.Which one of those makes the most sense when you have pain?

      Liked by 1 person

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      1. Zyp Czyk Post author

        That’s a good question and it has no generic answer. It’s like the directive to live your life as though each day were your last, and at the same time, live your life as though you had an infinite number of days left.

        Life seems to all about finding balance.

        Liked by 1 person

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    2. Zyp Czyk Post author

      I’d forgotten about that little fact. The problem, though, is that they act on their own view of reality and that does us damage.

      Their “reality” is that anyone using opioids is really addicted, so they pushed for the CDC guidelines and now we’re stuck. Apparently, reality matters as little as facts these days.

      Liked by 2 people

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  4. Patrick Roy-V.

    Hello, I’m a kinesiologist (exercise science) who works with chronic pain clients. I have no experience or knowledge of Ehlers-Danlos Syndrome (but I do of other conditions including fibromyalgia), and would like to express my toughts about so-called “irrational doubts”, emotional distress, how chronic pain is being redefined, topics raised in your article and comments, and also my outlook of the field of chronic pain treatment and research. Thank you !

    – In research, grouping all “chronic pain patients” under one category is nonsense, even moreso when seeking to identify whether their doubts about getting better are rational or not. It depends on each individual’s health condition, their treatment history, etc.
    In my experience with patients having chronic pain after a workplace injury (herniated discs, vertebral fractures, sprains, etc.) and fibromyalgia, rhumatoïd arthritis, CRPS, etc., the majority of them expressed emotional distress and did not initially think they could get better. Although this would later be proved to be a mistaken belief, it was nonetheless an entirely rational one: they had not recieved adequate prior treatment, and in many cases prior treatment had made them worse. Assuming that their condition would not get better was therefore a most logical response. But about 89% of these patients who had been told that they “would have to live with it” after 1-2 years of no progress/worsening, did finally get better, in less than 3 months of treatment.

    – Emotional distress might contribute to increased pain and can alter treatment outcomes. But it should never be assumed to be causal to the maintenance of pain. Research does need to continue exploring biological mechanisms of how cognition impacts pain processes, because this will allow clinicians to understand the *relative* importance of how thoughts and feelings influence suffering. This, not to do patient-blaming, but to apply a comprehensive approach to treatment, and one that does not forget the human component and allows for true empathy.

    – I’ve read reports written by clinicians who, clearly, completely misunderstand pain, mostly the neuropathic type. Facing failure, rather than being humble, admitting their inability to understand, and refer, they write on their reports that the client shows discordance/contradictions, and is uncooperative – to their bad treatments. These are the clinicans who will later read psychological research on suffering from chronic pain (emotional distress, catastrophizing, etc.) and completely misinterpret it, or be unable/unwilling to critique the bad articles. They do this instead of revising/studying neurology, knowledge which may have prevented failure, prevented the false attribution of their mistake to “patient non-compliance”, and prevented the induction of emotional distress in the patient.

    – There may be a minority of patients in whom emotional distress may be a major contributor to pain (psychogenic pain – somatization following psychological trauma). Psychological trauma can co-exist, or be induced by physical trauma. These patients deserve proper psychological and physical care. I wish the concept of mental health were no longuer so taboo.

    – Attempting typical distractions when in pain is usually non-productive. Pain is a threat signal, we are wired in such a way that it “wants” to be adressed. Pain generally takes priority in the brain. Hypnosis/self-hypnosis would help, but to get in trance requires a feeling of security and comfort which is opposed by the pain experience. Conscious *thinking* of “sunshine, flowers and puppies” would not help; and they are not even on the correct system (being mostly visual cues). *Experiencing* positive feelings from tactile and proprioceptive stimuli can help (ex: graded exercises, which also act through other mechanisms. They need to be designed specifically for each person’s physical condition). Massage may provide relieving tactile stimuli, but it can be inappropriate for some pain conditions, and our nervous system may prevent us from feeling gentle touch as pleasurable when in too much pain. There are of course other components to chronic pain treatment (medication, etc.). Treatment needs to be multi-modal and must adress every component of the pain pathways.

    – Chronic pain is increasingly being redefined as “pain that persists despite healing”. Such a definition is inapplicable to the majority of clients in persistent pain. Researchers who promote such definitions tend to have too limited a view and to not have clinical experience. Whereas clinicians who modify their interventions to follow this definition tend to be incompetent and under confirmation bias; never actively looking for information that may contradict their beliefs.

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    1. Zyp Czyk Post author

      Wow, Patrick, you’ve really hit the truth – I agree with all you’ve said here and you make some excellent points that need to be addressed, starting with:

      “grouping all “chronic pain patients” under one category is nonsense, even moreso when seeking to identify whether their doubts about getting better are rational or not.”

      Chronic pain is not a single entity!

      I can discern different kinds of pain in my body, and I treat them differently. There’s a huge difference between mechanical pain and inflammatory pain, though the first will eventually lead to the second over time. EDS pain starts as a mechanical issue when the joint is out of alignment, and only then progresses to inflammation.

      “Assuming that their condition would not get better was therefore a most logical response. ”

      YES! They’ll even say you shouldn’t expect your pain to be cured, but if you then believe them and say you’ll never be healed, you’re accused of having a bad attitude.

      “Emotional distress … should never be assumed to be causal to the maintenance of pain.”

      There are some studies that show that emotional distress leads to pain, not vice versa, but they are hard to find. (See https://edsinfo.wordpress.com/2016/08/11/catastrophizing-debunked-as-cause-of-pain/ and https://edsinfo.wordpress.com/2016/12/19/catastrophizing-studies-from-nih-pubmed/)

      This label of “catastrophizing” is essentially a way to deny the pain they can’t “fix” and turn it into a psychological problem we have and that we’re expected to fix. We are labeled as causing our own pain, and that infuriates me. (See https://edsinfo.wordpress.com/2017/03/20/chronic-pain-is-a-catastrophe/)

      “clinicians who, clearly, completely misunderstand pain, …rather than being humble, admitting their inability to understand, and refer, they write on their reports that the client shows discordance/contradictions, and is uncooperative – to their bad treatments”

      Occasionally I’ll read the slogan that “patients don’t fail treatment, treatment fails patients”, but the medical field is filled with references to patients failing treatment – doctor-speak for “not my problem”.

      “Pain is a threat signal, we are wired in such a way that it “wants” to be adressed. Pain generally takes priority in the brain.”

      Yes, they never account for this. (See https://edsinfo.wordpress.com/2015/09/01/the-physiological-effects-of-unrelieved-pain/)

      They do their studies and make their claims as though pain were just a simple “sensation” like your clothing on your skin. But pain is a completely different category in the nervous system. Having chronic pain is like having a powerful central alarm blaring all the time.

      If you could write your views into an article about your experience with these latest misconceptions (or rather, deliberate misdirections), I’d really like to publish it.

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      1. Patrick Roy-V.

        “They’ll even say you shouldn’t expect your pain to be cured, but if you then believe them and say you’ll never be healed, you’re accused of having a bad attitude.”
        Thank you ! I wasn’t aware of this.

        Pain catastrophization, kinesiophobia, etc. are all terms which imply comparison to “normalcy”. For these terms to have validity, the factors need to be of disproportionate intensity. In the case of kinesiophobia: fears disproportionate relative to the actual injury risk from exercise. This risk can be grossly estimated. (But measuring kinesiophobia from a stantardized questionnaire (TSK) is mistaken, as normative data does not take into account each patient’s situation. What the TSK measures, is how much fear of movement there is. Not whether that level of fear is adaptative or not for that client’s situation.)

        In the case of pain catastrophization, what is the comparison made to ?
        If we look at the scale used, the PCS does not measure “the tendency to misinterpret and exaggerate painful stimuli” ! There is not a single item in the questionnaire which assesses clients’ cognitions about pain ! Rather, it measures affective components; emotional distress subtypes such as rumination and helplessness. These can obviously be caused by pain persistence, and aggravated in case of bad interventions, litigation against employer/insurer, etc.
        Now, how can one possibly think of judging whether the amount of emotional distress is “exagerated” ?!

        Many clinicians administer the PCS, measuring emotional distress while thinking they are measuring catastrophization. The label is wrong, and this has repercutions.

        Instead, if one knows what the PCS does, he can use it, or other psychometric questionnaires, or more simply have a normal verbal interview and be informed if there are signs of depression and other types of emotional distress, to offer psychological help as necessary – which may also have beneficial effects on pain modulation through improving neurotransmitter/endocrine levels, etc. That there are links between psychological health and physiological health is no surprise, and I’m all for elucidating them, but researchers, teachers and clinicians must be careful in their interpretation. If one thinks that psychological components play a role in maintaining a patient’s pain, it must be because of positive identification of the mechanisms involved. Eliminating other *known* biological mechanisms is insufficient. This is why I wrote “Emotional distress … should never be **assumed** to be causal to the maintenance of pain.”

        As wikipedia correctly states for somatoform disorders: “Somatic symptom disorder has been a controversial diagnosis, since it was historically based primarily on negative criteria – that is, the absence of a medical explanation for the presenting physical complaints. Consequently, any person suffering from a poorly understood illness can potentially fulfill the criteria for this psychiatric diagnosis, even if they exhibit no psychiatric symptoms in the conventional sense.”

        I’ve decried the use by some of catastrophization and other associated concepts as a *default* explanation for all chronic pain syndromes or for the ones of which they have less understanding. However, I do not think that users of this concept imply that most patients voluntarily “cause their own pain”, nor do I think that the concept of catastrophization was created for patient-blaming, even if I’ve seen it sometimes used as such. I think that catastrophization is a inherently flawed construct, but patient-blaming appears to me as an independant phenomenon. A patient-blamer could use any other flawed explanation, presented in a dismissive way. I suppose patient-blaming may be brought by exasperation/cognitive dissonance in the clinician. Some clinicians may need better training and guidance to recognize when they are not able to help (meta-cognition skills). Others… disciplinary action by an ethics committee.

        “they make their claims as though pain were just a simple “sensation” like your clothing on your skin”
        Yes, perhaps still because of the confusion between nociception and pain. Old models used to equate nociception –> pain, this was flawed, as there could be exceptions of pain without nociception, or no pain despite nociception. Now, some seem to make the confusion of pain having the qualities of nociception. As though pain was devoid of affect. Pain devoid of negative affect is an exception, not the norm. We see it in some trance states and brain injuries for example.

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        1. Zyp Czyk Post author

          Unfortunately, our medical culture no longer deals with “gray areas” because diagnoses and decisions are based on numbers like lab values, or pictures from imaging.

          They see a patient in distress and immediately explain her/his pain as catastrophizing, even when there’s a medical reason for the pain. This has become the modern equivalent of “it’s all in your head” for far too many practitioners. This is the same thought process as accusing patients of drug-seeking when other treatments don’t provide relief.

          Any pain that doctors cannot successfully treat is suspect as “mental” or “malingering”, which is essentially blaming the patient.

          I’ve been on the receiving end of this from doctors after they couldn’t find any physical reason for my pain and I’d exhausted all the options they offered to ease it. Because I didn’t have the EDS diagnosis yet, my pain was usually considered exaggerated or fake.

          That alone was enough to make me pretty darn distressed at my appointments.

          “Pain devoid of negative affect is an exception, not the norm. We see it in some trance states and brain injuries for example.”

          I feel pain patients are being asked to learn advanced mental techniques that take years of dedicated practice. Very few people can control sharp, stabbing pain (like from a broken bone, or even from a stubbed toe) with their mind, but that’s what’s expected from pain patients.

          Chronic pain is distressing when it takes you prisoner in your own body, but if pain patients are upset about it we are blamed for catastrophizing. How convenient for doctors when they have no obligation to ease our pain while patients have the obligation not to get upset about it.

          Sometimes, opioids are completely appropriate even long term when a patient has an untreatable syndrome that truly causes significant physical pain.

          I’ve noticed that 99.99% of the folks advocating against opioids have never suffered chronic pain in themselves or a loved one. They literally have no idea what they’re talking about – chronic pain wears a person down to exhaustion and wishing for death to end the misery.

          They must suppose it’s catastrophizing that’s making pain patients kill themselves when their opioids are taken away.

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          1. Patrick Roy-V.

            I wanted to say thanks for your posts. I appreciated you sharing your experiences and reasoning a lot.

            “I feel pain patients are being asked to learn advanced mental techniques that take years of dedicated practice”

            Yes, not only does pain taking priority prevents the application of such advanced mental techniques when in a crisis, but persistent pain would also make learning/acquiring the technique very difficult in people who are not already familiar with them.

            When I felt (I’m forcing myself to use the past tense…) pain in my cervical region, there’s no way any self-hypnosis would work. The cervical pain would trigger cervicogenic headache+dizziness. In its worst it came with migraine and nausea.

            Ironically, my cervical issues started during a course I took on cervical pain management. The course was given by a physical therapist. During a practice session, I was paired with a new PT graduate who was feeling unseay with the cervical manipulation taught. So the teacher came, took his position, and showed him that the technique should be applied more vigorously and that he should be more confident… I did not even have time to mention my discomfort. Significant neck pain ensued for a week. At the time I was working in a chronic pain clinic in which I had become critical of the administration. I had noticed fraud, and some of my reports had been modified before being sent to the insurer, with my signature still. I fought this, and was put under a lot of pressure by the administration for my “overtime hours” (they had asked us to write our reports during client’s treatment time (and we see at least 4 clients simultaneously).. even though time to write reports is billed additionally to the insurer). I got fired. I had difficulty applying for other jobs, trying to explain the reason for my previous job loss. When I got more comfortable, I still had some difficulties, because I noticed in interviews that deficient ethics were more common than I had imagined, and I was unwilling to compromise my values and mental health.

            Basically, my case was a mechanical injury during a period of high stress, followed by some depression. Have had recurring pain episodes. No support from the doctor I saw for my neck pain. Oh well – I treated my AC joint, I treated my tinnitus (after it was aggravated by an audiologist’s testing and advice), now I’m just glad that self-management seems sufficient for my cervical issues too.

            (Please forgive the length of my post – if I got too off-topic feel free to remove my personal experience part.)

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            1. Zyp Czyk Post author

              Thanks for the compliment! I always enjoy hearing people’s own experiences because I can learn from them. For example, a reader commented that she gets relief from Neurontin when using it “as needed”. I had no idea that was possible, but I tried it with some old Lyrica I had left and it worked for me too! So I appreciate your thoughts on all this too.

              I stopped seeing a chiropractor when I looked at what he was billing my insurance. He was charging ridiculous amounts for every ice pack and every time he touched me while seeing multiple clients at once. Perhaps this is the norm, but I couldn’t stomach it and stopped seeing him. (Plus, chiropractic doesn’t work when my joints are so loose that they slip back into the “bad” position as soon as I take a few steps – I verified this with my physical therapist too).

              My body is “weird” and usually doesn’t respond to interventions as it should, so I have to find docs/therapists willing to entertain doubts about the official protocols they’ve been taught. For me, only highly individualized treatment works and I’m dismayed how everything is being pushed to standardize. Standards are good starting points, but then the unique quirks of the individual must be taken into account. I think too few docs/therapists are willing to do this.

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