Living with constant, severe, disabling pain is a devastating lot in life to be given. But when safe, effective pain relief is available but being withheld, it becomes wilful torture by the medical p
Neen your accounts are so hard to read because the events are so shocking and “inhumane” is the right word.
This convention of bundling all enduring pain under the heading of “chronic” is inaccurate and harmful. It would be better to relabel as nociceptive or non-nociceptive and then sufferers might be treated with more compassion and actually given whatever pain relief is possible.
I’d also like to see better treatment for pain diagnosed as non-nociceptive pain. When patients say they get relief from opioids and that relief shows up in better functioning and quality of life, we should believe them.
What we shouldn’t be doing with ANY pain patient is gaslighting, or trying to educate them into believing they don’t actually have pain, or if they do have pain, they don’t have to suffer, as long as they change their beliefs and attitude.
Our present treatment of pain patients is largely disgusting. We humans have a hard time imagining what people with pain are going through, until we suffer it ourselves. I honestly wish more health professionals would suffer it and perhaps they’d grow some compassion and a more skeptical attitude to the garbage they’ve been fed by anti-opioid zealots.
"Our present treatment of pain patients is largely disgusting." Could not agree more! And I have also said I wish these people could live in my body for a week. They would be on their knees, begging for help, by the third day. They would not sleep, they would not be able to work, they would not be able to function. And finally, they would understand. But of course, in the real world, when health care professionals have pain, they get opioids. Simple as that.
Agree wholeheartedly again, pain should be seen as nociceptive or non-nociceptive. That is the only important distinction. Essentially that's my goal with campaigning on 'Chronic PRIMARY vs chronic SECONDARY pain'. Different words/terms, but the same goal - teach people the difference between nociceptive and non-nociceptive pain...chronic secondary pain and chronic primary pain. Two different kinds of pain with very different treatments! When I'm arguing/debating with people on twitter, they mostly have NO idea what Chronic Secondary Pain is. Yet they are EXPERTS in treating pain...or so they say! Its infuriating. And then they just block me, anyway. Wouldn't want to actually LEARN something, and certainly not from a patient!
I have read some of your work, I'm making my way through it, and you are one of the very rare few professionals who are honest about the ineffectiveness of the current treatments - CBT, Pain Neuroscience Education, ACT / Mindfulness...All barely shift the needle on pain, or do not work at all. Yet excellent marketing and outright brainwashing makes these the prevalent treatments. I have been listening to Moseley's new podcast (Pain Matters, gosh what a clever play on words! Even the name of his podcast demonstrates how dull and derivative the man is). I'm sure he answered your question on air, or I believe it was you. It was saying that no treatments perform better than empathetic listening and support...I'm sure I've read that in your work or even your comments here. I can't remember what he said, but he weasels out of all the questions, provides the same non-answers just like a politician does. (Lorimer for PM). And does not address the people who tell him bluntly that Explain Pain does not work.
fPeople like Moseley created this environment where 'chronic pain' is a mild to moderate annoyance and people just need to do some learning and change their beliefs and it will all be better. Utter pseudoscience! And like the best pseudoscience, it's got inbult victim-blaming - Oh you don't understand pain science. Or, you didn't learn it 'deep down in your belly'. The studies are full of lies, damned lies and cherry-picked statistics.
We know that some people get good benefit from opioids. When I was on 130MME daily, I ran 5km 4-5 times a week. Daily gym. Worked part time. No one knew I was in pain, beause the opioids knocked the pain down to moderate, or even mild some days. I can run 5km and work a 6 hour day through moderate pain. But not severe pain. And THATs another big difference they never talk about - severity and intensity of pain. its a whole lot easier to live wtih mild pain than severe pain! NOT the same thing.
I know there is a group trying to find biomarkers for pain and pain intensity. IF that could ever be achieved, with 100% reliability, THEN people would take pain seriously. I dont think a test like that is possible though. Until then, its up to doctors to BELIEVE us. And we can see how well THAT's working out!
Yes, that was me trying to get Moseley to admit what he has already admitted in the past, that pain education doesn’t reduce pain. He sure did weasel on it and didn’t answer the question at all. I don’t think he has malevolent intent at all - he’s just deluded and unfortunately has gained a massive following.
I suspect we might get better progress in real pain education if we stick with terms most researchers and therapists already understand: nociceptive and non-nociceptive. A lot of people don’t believe non-nociceptive pain exists and of course that’s bullshit. As if we should disbelieve the 1.5 billion people around the world who suffer from it (the proportion of long term pain which could be designated as non-nociceptive, extrapolating from the Deloitte report categorisation of types of long term pain.
The effort being put into identifying biological markers of long term pain shows an ignorance of the experience of pain - I don’t believe we’ll find any. When people say they’re in agony we should believe them and move heaven and earth to provide relief.
The constant confounding of pain research by mixing nociceptive and non-nociceptive pain participants, by using participants who do not have pain and are unlikely to have pain, and by comparing interventions with uninformative controls, as well as the incompetence and plain skullduggery that goes on with manipulations and even fraud in relation to statistical analysis, makes it incredibly difficult to get real progress and formulate treatment guidelines that actually result in positive outcomes for the long suffering pain population. Just too many vested interests, and junk studies are the norm.
But surely you agree the most common type of pain is nociceptive. In my medical practice I am not aware of having seen a case of non-nociceptive pain. I did see people who were shoddily worked up and called non-nociceptive, a diagnosis from which there is no escape and no relief. I don’t think a lot of physicians are even aware the code for chronic pain is psychiatric and they are coding physical pain as psychiatric, further muddying data and preventing future care. I’m not even sure we have a code for secondary chronic pain here. The entire concept of “3 months or past the normal time of healing” is inconsistent with pathophysiology and logic; plenty of tissue normally takes longer than that to heal. I think this is partly a religious bigotry.
Hi Lee, I'm describing non-nociceptive pain as being pain that doesn't arise from "noxious signalling" meaning there is no diagnosed (or insufficient diagnosed) pathology to explain the pain. My claim of it being the majority of presentations is based on a report carried out by Deloitte on behalf of Pain Australia, where their categorisation of types of chronic pain showed that the vast majority were experiencing pain without existing pathology (or adequate existing pathology which might explain the pain).
I don't consider this non-nociceptive pain to be psychiatric - rather I'm in agreement with researchers such as de koninck and others who see it much like a persisting memory, and therefore conditioned. Since something that is conditioned can be extinguished, I think we can be optimistic about future treatment to help those suffering this type of pain.
Of course that's not what Neen and others are experiencing. These are people with strong explanatory pathology, who are being treated as if they are deluded or lying, and being openly and cruelly denied relief.
My experience practicing medicine and as a patient leads me to view the diagnostic process arriving at the “insufficient pathology” conclusion skeptically. Conditioned memory pain is not a proven entity. I understand a number of driving factors in coming to that conclusion. What is proven is a system that has little time for history, physical exam, and testing to find the pathology causing pain. One doesn’t really look, then declares there isn’t a cause. Regardless of the nomenclature, patients are sorted into categories that are rarely revisited. It’s then easier to question any report of pain, and easier to stigmatize.
Either way, most patients who have sufficient pathology for nociceptive pain diagnoses here in the US find themselves out of luck, as Neen does, when it comes to pain relief, including those with post-op pain and imminently terminal disease. Apparently the 60% drop in opioid prescribing has occurred primarily in patients with chronic conditions. The situation continues to grow more dire. Overdoses from illicit drugs continue to increase.
I submit to you that pain as a learned behavior is not adaptive and therefore unlikely. It destroys relationships, careers, finances, families, in short, everything a human needs to live and thrive. I have found that secondary gain is exceedingly rare, whether on the part of the patient or a family member, because it is so toxic and taboo. Illness itself is toxic and taboo. Patients are generally “acting” well, not acting sick. Patients treated as if they are acting sick are not likely to do well. They fight every negative stigma society can throw at them to survive life with illness; they show up for care, placing their trust in us to help and paying for our services, whether that is through taxes or via private insurance or self pay. I sometimes think they receive victim-blaming in return for their trust.
This is conveyed peacefully in the spirit of open exchange and I hope it comes across that way.
Lee I couldn't agree more with 99.99% of your commentary above. Although I appreciate our discussion, I'm not sure if our exchange is helpful to the cause of getting more humane, compassionate and effective treatment for chronic pain patients, that focussing on nociception/non-nociception might take people's attention from the real focus here. I worry that people might read my take on non-nociceptive pain and either feel they have support for thinking it's psychological, or feel I'm somehow belittling the actual, real pain signalling they're experiencing. Both responses couldn't be more incorrect.
I actually think this would be a discussion that would be of interest to a wide range of health professionals and I wonder what you might think about an article that explores these views and the scientific research they're based on.
I’m so sorry you’ve had these experiences. My spouse and I are physicians, both unable to practice due to rare and progressive diseases with severe pain. My family has accumulated horror stories especially throughout the past 10 years that I believe have caused heart damage at this point I believe. I support you and wish you well. I’m sorry the profession is failing you this way. I’ve written so many letters, made so many calls, attended meetings, spoken; physicians are in prison for treating patients, but their specialty organizations aren’t using their lobbyists to push for change on this issue as they should be and I don’t understand it. This is a human rights abuse.
Please keep that foot elevated! Not official advice of course. Move a bit to prevent clots, but keep the swelling out or it won’t heal. Might need wraps (they do wonders-wound care or dermatology)-not official advice-sorry for meddling, can’t help but be concerned.
Neen your accounts are so hard to read because the events are so shocking and “inhumane” is the right word.
This convention of bundling all enduring pain under the heading of “chronic” is inaccurate and harmful. It would be better to relabel as nociceptive or non-nociceptive and then sufferers might be treated with more compassion and actually given whatever pain relief is possible.
I’d also like to see better treatment for pain diagnosed as non-nociceptive pain. When patients say they get relief from opioids and that relief shows up in better functioning and quality of life, we should believe them.
What we shouldn’t be doing with ANY pain patient is gaslighting, or trying to educate them into believing they don’t actually have pain, or if they do have pain, they don’t have to suffer, as long as they change their beliefs and attitude.
Our present treatment of pain patients is largely disgusting. We humans have a hard time imagining what people with pain are going through, until we suffer it ourselves. I honestly wish more health professionals would suffer it and perhaps they’d grow some compassion and a more skeptical attitude to the garbage they’ve been fed by anti-opioid zealots.
"Our present treatment of pain patients is largely disgusting." Could not agree more! And I have also said I wish these people could live in my body for a week. They would be on their knees, begging for help, by the third day. They would not sleep, they would not be able to work, they would not be able to function. And finally, they would understand. But of course, in the real world, when health care professionals have pain, they get opioids. Simple as that.
Agree wholeheartedly again, pain should be seen as nociceptive or non-nociceptive. That is the only important distinction. Essentially that's my goal with campaigning on 'Chronic PRIMARY vs chronic SECONDARY pain'. Different words/terms, but the same goal - teach people the difference between nociceptive and non-nociceptive pain...chronic secondary pain and chronic primary pain. Two different kinds of pain with very different treatments! When I'm arguing/debating with people on twitter, they mostly have NO idea what Chronic Secondary Pain is. Yet they are EXPERTS in treating pain...or so they say! Its infuriating. And then they just block me, anyway. Wouldn't want to actually LEARN something, and certainly not from a patient!
I have read some of your work, I'm making my way through it, and you are one of the very rare few professionals who are honest about the ineffectiveness of the current treatments - CBT, Pain Neuroscience Education, ACT / Mindfulness...All barely shift the needle on pain, or do not work at all. Yet excellent marketing and outright brainwashing makes these the prevalent treatments. I have been listening to Moseley's new podcast (Pain Matters, gosh what a clever play on words! Even the name of his podcast demonstrates how dull and derivative the man is). I'm sure he answered your question on air, or I believe it was you. It was saying that no treatments perform better than empathetic listening and support...I'm sure I've read that in your work or even your comments here. I can't remember what he said, but he weasels out of all the questions, provides the same non-answers just like a politician does. (Lorimer for PM). And does not address the people who tell him bluntly that Explain Pain does not work.
fPeople like Moseley created this environment where 'chronic pain' is a mild to moderate annoyance and people just need to do some learning and change their beliefs and it will all be better. Utter pseudoscience! And like the best pseudoscience, it's got inbult victim-blaming - Oh you don't understand pain science. Or, you didn't learn it 'deep down in your belly'. The studies are full of lies, damned lies and cherry-picked statistics.
We know that some people get good benefit from opioids. When I was on 130MME daily, I ran 5km 4-5 times a week. Daily gym. Worked part time. No one knew I was in pain, beause the opioids knocked the pain down to moderate, or even mild some days. I can run 5km and work a 6 hour day through moderate pain. But not severe pain. And THATs another big difference they never talk about - severity and intensity of pain. its a whole lot easier to live wtih mild pain than severe pain! NOT the same thing.
I know there is a group trying to find biomarkers for pain and pain intensity. IF that could ever be achieved, with 100% reliability, THEN people would take pain seriously. I dont think a test like that is possible though. Until then, its up to doctors to BELIEVE us. And we can see how well THAT's working out!
Yes, that was me trying to get Moseley to admit what he has already admitted in the past, that pain education doesn’t reduce pain. He sure did weasel on it and didn’t answer the question at all. I don’t think he has malevolent intent at all - he’s just deluded and unfortunately has gained a massive following.
I suspect we might get better progress in real pain education if we stick with terms most researchers and therapists already understand: nociceptive and non-nociceptive. A lot of people don’t believe non-nociceptive pain exists and of course that’s bullshit. As if we should disbelieve the 1.5 billion people around the world who suffer from it (the proportion of long term pain which could be designated as non-nociceptive, extrapolating from the Deloitte report categorisation of types of long term pain.
The effort being put into identifying biological markers of long term pain shows an ignorance of the experience of pain - I don’t believe we’ll find any. When people say they’re in agony we should believe them and move heaven and earth to provide relief.
The constant confounding of pain research by mixing nociceptive and non-nociceptive pain participants, by using participants who do not have pain and are unlikely to have pain, and by comparing interventions with uninformative controls, as well as the incompetence and plain skullduggery that goes on with manipulations and even fraud in relation to statistical analysis, makes it incredibly difficult to get real progress and formulate treatment guidelines that actually result in positive outcomes for the long suffering pain population. Just too many vested interests, and junk studies are the norm.
But surely you agree the most common type of pain is nociceptive. In my medical practice I am not aware of having seen a case of non-nociceptive pain. I did see people who were shoddily worked up and called non-nociceptive, a diagnosis from which there is no escape and no relief. I don’t think a lot of physicians are even aware the code for chronic pain is psychiatric and they are coding physical pain as psychiatric, further muddying data and preventing future care. I’m not even sure we have a code for secondary chronic pain here. The entire concept of “3 months or past the normal time of healing” is inconsistent with pathophysiology and logic; plenty of tissue normally takes longer than that to heal. I think this is partly a religious bigotry.
Excuse me-a misdiagnosis from which there is no escape or relief.
Hi Lee, I'm describing non-nociceptive pain as being pain that doesn't arise from "noxious signalling" meaning there is no diagnosed (or insufficient diagnosed) pathology to explain the pain. My claim of it being the majority of presentations is based on a report carried out by Deloitte on behalf of Pain Australia, where their categorisation of types of chronic pain showed that the vast majority were experiencing pain without existing pathology (or adequate existing pathology which might explain the pain).
I don't consider this non-nociceptive pain to be psychiatric - rather I'm in agreement with researchers such as de koninck and others who see it much like a persisting memory, and therefore conditioned. Since something that is conditioned can be extinguished, I think we can be optimistic about future treatment to help those suffering this type of pain.
Of course that's not what Neen and others are experiencing. These are people with strong explanatory pathology, who are being treated as if they are deluded or lying, and being openly and cruelly denied relief.
I appreciate your sincerity-truly.
My experience practicing medicine and as a patient leads me to view the diagnostic process arriving at the “insufficient pathology” conclusion skeptically. Conditioned memory pain is not a proven entity. I understand a number of driving factors in coming to that conclusion. What is proven is a system that has little time for history, physical exam, and testing to find the pathology causing pain. One doesn’t really look, then declares there isn’t a cause. Regardless of the nomenclature, patients are sorted into categories that are rarely revisited. It’s then easier to question any report of pain, and easier to stigmatize.
Either way, most patients who have sufficient pathology for nociceptive pain diagnoses here in the US find themselves out of luck, as Neen does, when it comes to pain relief, including those with post-op pain and imminently terminal disease. Apparently the 60% drop in opioid prescribing has occurred primarily in patients with chronic conditions. The situation continues to grow more dire. Overdoses from illicit drugs continue to increase.
I submit to you that pain as a learned behavior is not adaptive and therefore unlikely. It destroys relationships, careers, finances, families, in short, everything a human needs to live and thrive. I have found that secondary gain is exceedingly rare, whether on the part of the patient or a family member, because it is so toxic and taboo. Illness itself is toxic and taboo. Patients are generally “acting” well, not acting sick. Patients treated as if they are acting sick are not likely to do well. They fight every negative stigma society can throw at them to survive life with illness; they show up for care, placing their trust in us to help and paying for our services, whether that is through taxes or via private insurance or self pay. I sometimes think they receive victim-blaming in return for their trust.
This is conveyed peacefully in the spirit of open exchange and I hope it comes across that way.
Lee I couldn't agree more with 99.99% of your commentary above. Although I appreciate our discussion, I'm not sure if our exchange is helpful to the cause of getting more humane, compassionate and effective treatment for chronic pain patients, that focussing on nociception/non-nociception might take people's attention from the real focus here. I worry that people might read my take on non-nociceptive pain and either feel they have support for thinking it's psychological, or feel I'm somehow belittling the actual, real pain signalling they're experiencing. Both responses couldn't be more incorrect.
I actually think this would be a discussion that would be of interest to a wide range of health professionals and I wonder what you might think about an article that explores these views and the scientific research they're based on.
Neen, Lee, what do you think?
I’m so sorry you’ve had these experiences. My spouse and I are physicians, both unable to practice due to rare and progressive diseases with severe pain. My family has accumulated horror stories especially throughout the past 10 years that I believe have caused heart damage at this point I believe. I support you and wish you well. I’m sorry the profession is failing you this way. I’ve written so many letters, made so many calls, attended meetings, spoken; physicians are in prison for treating patients, but their specialty organizations aren’t using their lobbyists to push for change on this issue as they should be and I don’t understand it. This is a human rights abuse.
Please keep that foot elevated! Not official advice of course. Move a bit to prevent clots, but keep the swelling out or it won’t heal. Might need wraps (they do wonders-wound care or dermatology)-not official advice-sorry for meddling, can’t help but be concerned.