Thanks Jo for the though provoking piece. As a pain researcher, former clinician and sometimes a pain patient, I have some thoughts on a few different levels. First, my thoughts are not intended to argue with the points you are making but to put you in my headspace (as it has been for some time).
From my perspective as a pain researcher that works in a largely dysfunctional (US) healthcare environment I actually believe that the solution(s) for pain will not come from more research. That is not to say that research is not cool and/or helpful--after all that is what I get paid to do--but, we have done a lot of research and how much has been actually implemented on any meaningful scale. The key point I am driving home here is that our HC systems are not agile and responsive to the research that has already been done. There are many reasons for this and they don't make a lot of sense at the individual level, that is they have little to do with providing better patient care. Mostly that in the US we simply don't value or have defined what an effective HC system is and how it should operate.
We could research dissemination and implementation strategies but that would actually require HC systems to actually implement changes and be interested in researching those outcomes. While this receives considerable lip service and does seem to be getting more funding I see this progress moving at a snail's pace.
Researchers, providers, and patients are trapped in the same perverse system and therefore all suffer in their own unique ways. Researchers suffer in that there research does not get translated and operates on the fringes of dysfunctional system. Providers suffer in that they are trapped in antiquated models of HC delivery that are not well adapted for helping people with chronic conditions. And of course, Patients suffer worst of all because they are not treated in a humane system that is set up to help them thrive across the lifespan.
I apologize for the overly cynical perspective but as much as I love the accumulation of knowledge I don't see meaningful change until we as a society see some large scale changes in our collective values. I am glad I get to do research because, research is itself fun, I am glad I have helped patients as a provider, and I am thankful for my own pain experiences as they have guided me on my journey. However, advocating for Healthcare 3.0 (or whatever you want to call it) is what is needed. This IMHO is the rising tide that will lift all people with chronic conditions that our current health care system is failing.
Dear Jo, what matters for me a lot is how I can apply the findings from all this great scientists and studies to myself and my own pain situation. I am very disabled (widespread pain) at the moment, but eager to find a way out. You talk a lot about exposing yourself to the feared/painful activities in a gradual way. And as far as I can understand, one of the skills someone needs to build is the ability to tolerate/accept (=willingness) to experience some pain. I am at a point where I feel like I understand enough, that my body isn't damaged and it's basically a mind game (hypersensitive pain system) and I want to go back to my valued activities. Yet I am asking myself is there a pain that could be too high and further drive this "oversensitivity"? So lets say someone could handle a 8-10/10 pain while walking with little emotional/cognitive reaction, would that person be able to see improvements over time? So can pain itself be the driver of more pain or is it more like everything that comes with it (distress, threat value of pain) that leads to more pain? I often experience no pain during activities but a day or two latter I have flare ups. Do I then reduce the activities or go on, knowing that my body isn't damaged? Its a little bit confusing and different people have different approaches. That are more the practical questions on how to LIVE with pain day in and day out I feel like are getting to little attention for my point of view. I hope this makes sense and thank you so much for sharing your knowledge and stories! Would love to hear your perspective on it!
Thanks Jo for the though provoking piece. As a pain researcher, former clinician and sometimes a pain patient, I have some thoughts on a few different levels. First, my thoughts are not intended to argue with the points you are making but to put you in my headspace (as it has been for some time).
From my perspective as a pain researcher that works in a largely dysfunctional (US) healthcare environment I actually believe that the solution(s) for pain will not come from more research. That is not to say that research is not cool and/or helpful--after all that is what I get paid to do--but, we have done a lot of research and how much has been actually implemented on any meaningful scale. The key point I am driving home here is that our HC systems are not agile and responsive to the research that has already been done. There are many reasons for this and they don't make a lot of sense at the individual level, that is they have little to do with providing better patient care. Mostly that in the US we simply don't value or have defined what an effective HC system is and how it should operate.
We could research dissemination and implementation strategies but that would actually require HC systems to actually implement changes and be interested in researching those outcomes. While this receives considerable lip service and does seem to be getting more funding I see this progress moving at a snail's pace.
Researchers, providers, and patients are trapped in the same perverse system and therefore all suffer in their own unique ways. Researchers suffer in that there research does not get translated and operates on the fringes of dysfunctional system. Providers suffer in that they are trapped in antiquated models of HC delivery that are not well adapted for helping people with chronic conditions. And of course, Patients suffer worst of all because they are not treated in a humane system that is set up to help them thrive across the lifespan.
I apologize for the overly cynical perspective but as much as I love the accumulation of knowledge I don't see meaningful change until we as a society see some large scale changes in our collective values. I am glad I get to do research because, research is itself fun, I am glad I have helped patients as a provider, and I am thankful for my own pain experiences as they have guided me on my journey. However, advocating for Healthcare 3.0 (or whatever you want to call it) is what is needed. This IMHO is the rising tide that will lift all people with chronic conditions that our current health care system is failing.
Dear Jo, what matters for me a lot is how I can apply the findings from all this great scientists and studies to myself and my own pain situation. I am very disabled (widespread pain) at the moment, but eager to find a way out. You talk a lot about exposing yourself to the feared/painful activities in a gradual way. And as far as I can understand, one of the skills someone needs to build is the ability to tolerate/accept (=willingness) to experience some pain. I am at a point where I feel like I understand enough, that my body isn't damaged and it's basically a mind game (hypersensitive pain system) and I want to go back to my valued activities. Yet I am asking myself is there a pain that could be too high and further drive this "oversensitivity"? So lets say someone could handle a 8-10/10 pain while walking with little emotional/cognitive reaction, would that person be able to see improvements over time? So can pain itself be the driver of more pain or is it more like everything that comes with it (distress, threat value of pain) that leads to more pain? I often experience no pain during activities but a day or two latter I have flare ups. Do I then reduce the activities or go on, knowing that my body isn't damaged? Its a little bit confusing and different people have different approaches. That are more the practical questions on how to LIVE with pain day in and day out I feel like are getting to little attention for my point of view. I hope this makes sense and thank you so much for sharing your knowledge and stories! Would love to hear your perspective on it!