To fellow victims of chronic pain: do you ever despair about the future, knowing your pain might never end? If so, how do you deal with it?
I’ve made it a schelling point to never end it all. To leave open the possibility of suicide seems too dangerous to me, too alluring. But I’m still afraid that one day I might try. Do any of you ever feel like this?
I would like to know how others deal with this, as I’m only doing so-so.
I tend to read up on potential cures that may come in the future. Even ones that are far off or unlikely. Hope is a valuable coping mechanism.
I busy myself with tracking the parameters in my life that make me feel good or bad. I take care to track the things that make me feel good and I don’t have a “Pain Journal” but rather a “Thriving Journal”. The semantic distinction changes my attitude toward the process.
I consistently pursue every currently available medical treatment. This is part of keeping a positive mindset.
I try to fully and mindfully appreciate the good days. I hope you have good days, or at least better days, to focus on. On the worst days, I try to reflect on the fact that a better day will come around eventually. Maybe tomorrow, even!
I assiduously avoid letting myself dwell or ruminate on “how much my life sucks” in such terms. I focus more on how I’m doing pretty well, considering. I’ve learned that getting into a depression about it just makes everything a billion times worse. Call it stoicism or whatever, it’s more like a mindset that depressive thinking is an addictive drug that I know I can’t risk taking a single hit of or I’ll be addicted.
Suicide is not really an option that bears much thought when you consider that literally tomorrow somebody could come out with the cure to whatever ails you. You never know. And once you’re finally cured, physical pain that’s in the past is not really real anymore.
Hmm, a Thriving Journal seems like a good idea. Thanks for mentioning it. It makes sense.
I do try avoiding thoughts like ‘my life sucks’ or things like that because of the reasons you said. Its just that every so often, I get fall into a negative feedback loop. Which is not very fun.
One ‘hope’ I recently acquired is being able to lucid dream. It seems like you can avoid feeling pain in lucid dreaming, so its something I’m working towards. Any one tried something along those lines.
Just to elaborate, I noticed a long time ago that when I was grading every day with a 1-10 pain rating, it made everything seem extremely dismal, especially since almost no day was ever scored “zero”. Recasting this so that I also took note of when I was feeling really great (even if it was just in the morning, etc.) allowed me to see a more balanced and realistic picture of my state.
Sure, avoiding negative feedback loops is easier said than done. Sometimes things are just that bad. All I can say is that I seem to have cultivated a reflexive, aversive reaction to ruminating. I’m almost more scared of ruminating, and the places that leads, than I am scared of pain. I don’t know if this is a psychologically healthy stance, but it keeps my thoughts mostly in a place that I like.
I do not seem to have the knack for lucid dreaming, but I have used meditation to some minor success.
...a reflexive, aversive reaction to ruminating. I’m almost more scared of ruminating, and the places that leads, than I am scared of pain. I don’t know if this is a psychologically healthy stance...
I think it is. My own life is pretty good, actually, but I could easily talk myself into a depression if I didn’t try and avoid ruminating as much as possible. “Don’t believe everything you think”—I learned that here on LW, and that alone is easily worth all the time I’ve spent on this site.
There are herbs that can encourage lucid dreaming. I’ve experimented a bit with hyssop flower, also known as ezov, but it didn’t change my experience of dreaming much, except I woke up feeling like I had been sorting things through and having insights in my sleep. I didn’t recall what I had figured out, but I had the feeling of figuring things out. But I could lucid dream before I started taking it, though I don’t do it often, and I remember my dreams often and write them down. Keeping pen and paper by the bed and writing down dreams can be a way to start if you want to work up to lucid dreaming.
I don’t usually feel pain while dreaming, but I sometimes wake up from too much pain, so that is not always the case.
Many years ago, I did some meditation techniques to shut off pain when I was severely ill, and it worked for a little while, the technique was successful and I didn’t feel pain. But then I moved around and lived my life as if the pain weren’t there and I ended up hurting myself, and being in a worse condition than before. The pain had been stopping me from doing things that my body couldn’t handle. So, I’ve been reluctant to mess with the pain signalling system since then.
I guess I’m telling you these stories because neither lucid dreaming, nor shutting off feeling the pain were answers for me. But that’s me. Different people have different experiences and different bodies, which makes exploring these options not something that one can outsource, and anecdotes and stories are not reliable guides.
I learned techniques for lucid dreaming and dealing with pain from what was called at the time the Silva Method course, taught by Marilou Seavey and Gerald Seavey.
I also sometimes use a Tibetan Buddhist technique called tonglen, explained by Pema Chodron in her book When Things Fall Apart.
The Silva Method used to be a collection of useful techniques taught in a secular context. However, at some point after I took the course, the organization that coordinated the Silva Method courses became more religious. So a lot of people who were teaching the Silva Method courses and who weren’t happy with the religious direction the organization was taking continued to teach the techniques, but called their courses by different names.
Marilou and Gerald Seavey have a website. They travel to various places around the world to give workshops, and it looks like their focus has shifted to NLP and coaching. However, it looks like they still teach a Silva-Method-like course, and that they are calling it Essential Mind Power Training. http://mindbridgetraining.com/nlp-training/essential-mind-power-training
Jose Silva, who came up with the Silva Method, wrote some books, but they are not a very good introduction to or explanation of the techniques. The workshops are superior.
I’m glad I learned those techniques, and also a bunch of others, including the ones to help memorizing long lists of things, from the workshop. However, these techniques may not be the best way to do lucid dreaming, or deal with pain, or the various other things taught in the course. I haven’t done a comparison with other techniques for lucid dreaming from other traditions, for example. There may be superior ones out there. I’m telling you the way I learned how to do it, since you asked, but I’m not saying it’s the best way to learn it.
At the workshop, I feel like the limitations of the techniques were not discussed, or what to do when you run into problems, or guidance on the nuances that arise after mastering the basics. There wasn’t a support system of community or teachers. I was pretty much on my own after the workshop. I don’t know if that has changed over the years. Also, the incentives of someone selling workshops to make a living don’t necessarily line up with the best interests of the people taking the course, and there is a lot of hype, and a tendency to focus on the benefits, not the drawbacks, and to be less careful than a scientist would be in making claims.
In all, I think I do not wholeheartedly recommend it, but on balance it made my life better, so I recommend it with caveats.
I get the impression that Tibetan Buddhist monks and nuns know a lot more about meditation techniques than I do, but it’s rare that they write down what they know. It may be that they would teach more in person. I think finding a good teacher for this stuff would be helpful, but it is not straightforward to find such a person.
This is the hyssop flower aka Ezov extract that I was taking for a while. I don’t like their marketing claims, particularly the way that website talks about it, but it did seem to have some small effect on my dreams, as opposed to no discernible effect, which is the case with most herbs and foods I consume.
http://www.nutramedix.ec/ns/ezov
To answer your original question: when I was dealing with chronic pain, I had issues with deep despair similar to what you describe. My chronic pain left me unemployed, and I was constantly in fear of doing things that would aggravate my condition and set back the (very slow and variable) progress it was making in resolving itself. Definitely an extremely miserable period.
Thoughts I had that I found helpful and I’ll pass on to you: I decided there were basically 2 strategies for dealing with the pain I had: cure and mitigation. Cure refers to finding a way to roll back the root cause of the problem and return to being my pain-free self. Mitigation refers to accepting the pain and finding ways to work around it (for me—finding a job that doesn’t require me to make use of my hands at all, and probably doing a lot more meditation). I decided that it was best to focus on 1 strategy at a time, and that I should focus on the “cure” strategy for at least several years before switching to “mitigation”. (What’s a few years when I had decades left to live?) I realized that any given “cure” had a pretty low probability of working out, and being in a state of deep despair was extremely non-conducive to trying things that individually had a small probability of working out. This observation was helpful for recalibrating my intuition, and I resolved to make the “list of things I had tried” as long as I could possibly make it. I also resolved to do more of a breadth-first search than a depth-first search, at least at first—I didn’t want something that would gradually fix my pain over the course of many months in a way that I would need careful journaling to observe—I wanted a technique that would help things noticeably, that I could use at any time, if the issues came up in the future. Luckily I did manage to find such a technique, which was trigger point therapy (see above links). I’ve since helped a few others make progress on their pain using trigger point therapy, and I think it’s potentially useful for many, perhaps almost all, people who suffer chronic pain.
Some more specific recommendations:
If you’re not already taking something, start taking SAMe. It’s a supplement that you can buy over the counter that’s anti-depressant and has been shown to be quite useful for arthritis (so who knows, maybe it will end up helping your condition somehow—it probably hasn’t been studied for your condition and you may as well do an n=1 trial). Ideally it will improve your mood, which will give you the motivation to try low-probability treatments, and it might fix your issue on its own. Here’s more info: http://www.lifeextension.com/Magazine/2007/4/report_same/Page-01
Read this book: http://smile.amazon.com/How-Fail-Almost-Everything-Still/dp/1591847745/ Not only is it an great book in and of itself, the author covers mental strategies that are ideal for chronic medical condition sufferers. And he uses the story of his chronic medical condition as a motivating example through the book, so it gives you something to relate to.
I’ve seen you mention trigger point therapy before. It’s something I do, and it helps to a degree, but it has not had made a large change in my quality of life.
Suffer mainly from trigger points, but you’re treating the wrong ones/haven’t found effective treatment methods
Suffer from some other condition that’s causing trigger points in your muscles as a downstream effect
One thing that might give you a clue is to figure out just how bad your trigger points are. You won’t have a point of reference yourself, so I’d suggest visiting a few massage therapists and asking them after your massage whether you seem tighter than a typical client and where your worst tightness is. If your trigger points are very bad, or you have significant tightness/pain even in areas that aren’t close to your head, I’d update some in the direction of them representing the core of your problem.
If trigger points are your primary issue, then keep in mind they can require quite a lot of creative investigation to treat effectively. For example, my current hypothesis is that the eyestrain issues I struggled with a few months ago were caused in part by the following chain: morton’s foot → trigger points in my soleus → trigger points in my jaw muscles → trigger points in my upper sternocleidomastoid → trigger points in my eye muscles. It sounds weird, but when I spend a day walking around with inserts in my shoes to correct for the Morton’s Foot, my eyes feel like they’re loosening up when I lie down to sleep at the end of the day.
I recommend thoroughly reading the perpetuating factors chapter on every trigger point book you can get your hands on. Part of the reason I recommend SAMe is that one of the perpetuating factors that’s been identified for trigger point problems is folate deficiency, but some people (like me) have MTHFR mutations that interfere with folate motabolism, and SAMe helps get around that. (Getting 23andme can help you determine if you’re also an undermethylator.)
Make yourself the world’s foremost expert on trigger points (and any other field of research that seems helpful for your pain). Then you’ll have a great career if you do end up managing to fix yourself.
Yes. This is a common problem: look up ‘pain catastrophising’.
Then: Learn specific evidence-based strategies to deal with anxiety (relaxation techniques) and cognitive distortions like catastrophising (cognitive therapies).
Pain catastrophising seems like a bad thing. So are you saying that trying the reverse is a good thing?
Do you know any strategies that you can recommend?
I was recommended cognitive behaviour therapy because I’ve tried almost all medications. I’m guessing that its something like what you’re talking about.
Yes, decastrophising pain is a good thing based on empirical evidence and my personal experience.
Yes, cognitive behavioural therapy is a type of cognitive therapy. When administered correctly it will help. There are also useful resources on the web. I recommend this strategy. I can provide other strategies depending specifically on your etiology.
In addition, mere insight in the psychological interactions with somatic symptoms like pain gives you an edge in recovery over many chronic pain sufferers. You are a smart man to have asked this question. I was not so smart, and suffered for a long time before having this ideas shoved in my face when attending a university lecture on the topic.
And yes, I used to feel suicidal constantly and made some attempts. Now I very rarely feel suicidal. Pain was a big contributor to my mental illness.
Can you describe what pharmacological therapiies you were prescribed and the nature of your pain, if you don’t mind? If you are concerned about privacy I will respect that since it could be identifying information (feel free to pm me). If you have symptoms in areas I have either formal research expertise and/or personal experience (usually they’re the same areas) then I would love to help. I am not a health care professional, do note, but a researcher. The reason I offer is that given what I can formulate about your case based on what you’ve said (chronic pain, pharmacotherapy treatment resistant, CBT offered afterwards rather than concurrently, and where are rehabilitation exercises?) your treatment team may not be operating in alignment with what I understand as best practice. Now, that may be inavavoidable since I don’t read clinical guidelines, and it may simply be that researchers like me have to do more translational research, or it could be that you have a bad physio/gp/whoever and should get a second opinion so you don’t suffer.
Also, I avoid going into too much depth about my specific research expertise here on LW because it becomes rather identifying information. For those who follow this account, this isn’t Carlos (who’s public about him identity) typing right now (this is a shared account, as you can probably tell from our very different writing styles). So, if I do not respond it just means I haven’t had much time to visit lately or I’d be giving myself away. In such a case, I recommend just cnosulting a different health care provider for a second opinion.
I have chronic migraines. In my case it means a constant headache with a powerful migraine every few days.
In terms of medication, I’ve tried: Triptans & NSAIDs as pain relief; Propanalol, Amitriptyline, Topiramate and an Ocipital Nerve block as preventation. I’ve tried Magnesium as a supplement, which I’d hear helped others.
Then there’s stuff like acupuncture, trigger points and one or two things I can’t remember the name of.
Botox is an option, but one that’s met with resistance in my family.
That’s it I think. I really appreciate the advice.
Oh, I actually have next to no knowledge of migraines! Haha, some of my advice may before may even be irrelevant now, because I assumed it was pain in the sense of musculoskeletal or peripheral neuropathic type pain!
When the pain gets intense, it helps to remind myself “Not all days are as bad as this.” It can feel overwhelming in the moment, and it distorts the view of the future. So I remind myself of that too. “What I’m experiencing right now is a distorted view of the future. So I’m not going to make any major decisions based on it.”
It can be hard to look forward to the future when I’m not enjoying the present, when it’s so awful, and there’s no known path or plan to make thing better. It can be extremely frustrating to just endure. It can feel so futile and pointless.
When I have a better day later, I notice and point it out to myself and remember the worse day when it felt like I wouldn’t have anything to look forward to, and am glad that I stayed alive long enough to experience it. And then I can remember that little conversation with myself when it gets intensely worse again, even though I don’t recapture the good feeling at that time.
Suicide can seem pretty attractive under conditions of intense pain. Thoughts of suicide can be something like a valve, or an escape fantasy, or a fantasy of having an off switch for the pain. Repetitive thoughts can be related to exhaustion or illness. I think a lot of these thoughts and feelings can have a physiological basis, and are not necessarily something to identify with. They are probably pretty good at signaling “something is wrong” but not very good at “this is an accurate and complete picture of my desires”. Paying attention to what you physically did just before the thoughts sometimes could lead to insights.
To fellow victims of chronic pain: do you ever despair about the future, knowing your pain might never end? If so, how do you deal with it?
I’ve made it a schelling point to never end it all. To leave open the possibility of suicide seems too dangerous to me, too alluring. But I’m still afraid that one day I might try. Do any of you ever feel like this?
I would like to know how others deal with this, as I’m only doing so-so.
I tend to read up on potential cures that may come in the future. Even ones that are far off or unlikely. Hope is a valuable coping mechanism.
I busy myself with tracking the parameters in my life that make me feel good or bad. I take care to track the things that make me feel good and I don’t have a “Pain Journal” but rather a “Thriving Journal”. The semantic distinction changes my attitude toward the process.
I consistently pursue every currently available medical treatment. This is part of keeping a positive mindset.
I try to fully and mindfully appreciate the good days. I hope you have good days, or at least better days, to focus on. On the worst days, I try to reflect on the fact that a better day will come around eventually. Maybe tomorrow, even!
I assiduously avoid letting myself dwell or ruminate on “how much my life sucks” in such terms. I focus more on how I’m doing pretty well, considering. I’ve learned that getting into a depression about it just makes everything a billion times worse. Call it stoicism or whatever, it’s more like a mindset that depressive thinking is an addictive drug that I know I can’t risk taking a single hit of or I’ll be addicted.
Suicide is not really an option that bears much thought when you consider that literally tomorrow somebody could come out with the cure to whatever ails you. You never know. And once you’re finally cured, physical pain that’s in the past is not really real anymore.
Hmm, a Thriving Journal seems like a good idea. Thanks for mentioning it. It makes sense.
I do try avoiding thoughts like ‘my life sucks’ or things like that because of the reasons you said. Its just that every so often, I get fall into a negative feedback loop. Which is not very fun.
One ‘hope’ I recently acquired is being able to lucid dream. It seems like you can avoid feeling pain in lucid dreaming, so its something I’m working towards. Any one tried something along those lines.
Just to elaborate, I noticed a long time ago that when I was grading every day with a 1-10 pain rating, it made everything seem extremely dismal, especially since almost no day was ever scored “zero”. Recasting this so that I also took note of when I was feeling really great (even if it was just in the morning, etc.) allowed me to see a more balanced and realistic picture of my state.
Sure, avoiding negative feedback loops is easier said than done. Sometimes things are just that bad. All I can say is that I seem to have cultivated a reflexive, aversive reaction to ruminating. I’m almost more scared of ruminating, and the places that leads, than I am scared of pain. I don’t know if this is a psychologically healthy stance, but it keeps my thoughts mostly in a place that I like.
I do not seem to have the knack for lucid dreaming, but I have used meditation to some minor success.
I think it is. My own life is pretty good, actually, but I could easily talk myself into a depression if I didn’t try and avoid ruminating as much as possible. “Don’t believe everything you think”—I learned that here on LW, and that alone is easily worth all the time I’ve spent on this site.
There are herbs that can encourage lucid dreaming. I’ve experimented a bit with hyssop flower, also known as ezov, but it didn’t change my experience of dreaming much, except I woke up feeling like I had been sorting things through and having insights in my sleep. I didn’t recall what I had figured out, but I had the feeling of figuring things out. But I could lucid dream before I started taking it, though I don’t do it often, and I remember my dreams often and write them down. Keeping pen and paper by the bed and writing down dreams can be a way to start if you want to work up to lucid dreaming.
I don’t usually feel pain while dreaming, but I sometimes wake up from too much pain, so that is not always the case.
Many years ago, I did some meditation techniques to shut off pain when I was severely ill, and it worked for a little while, the technique was successful and I didn’t feel pain. But then I moved around and lived my life as if the pain weren’t there and I ended up hurting myself, and being in a worse condition than before. The pain had been stopping me from doing things that my body couldn’t handle. So, I’ve been reluctant to mess with the pain signalling system since then.
I guess I’m telling you these stories because neither lucid dreaming, nor shutting off feeling the pain were answers for me. But that’s me. Different people have different experiences and different bodies, which makes exploring these options not something that one can outsource, and anecdotes and stories are not reliable guides.
That is a good point.
Still, it would be nice if I could do such things when I really need to. Would you mind sharing the techniques you used?
I learned techniques for lucid dreaming and dealing with pain from what was called at the time the Silva Method course, taught by Marilou Seavey and Gerald Seavey.
I also sometimes use a Tibetan Buddhist technique called tonglen, explained by Pema Chodron in her book When Things Fall Apart.
The Silva Method used to be a collection of useful techniques taught in a secular context. However, at some point after I took the course, the organization that coordinated the Silva Method courses became more religious. So a lot of people who were teaching the Silva Method courses and who weren’t happy with the religious direction the organization was taking continued to teach the techniques, but called their courses by different names.
Marilou and Gerald Seavey have a website. They travel to various places around the world to give workshops, and it looks like their focus has shifted to NLP and coaching. However, it looks like they still teach a Silva-Method-like course, and that they are calling it Essential Mind Power Training. http://mindbridgetraining.com/nlp-training/essential-mind-power-training
Here is another pair of former Silva Method instructors, who call their course Dynamind http://www.scienceofhappiness.com/page1/index.html
Jose Silva, who came up with the Silva Method, wrote some books, but they are not a very good introduction to or explanation of the techniques. The workshops are superior.
I’m glad I learned those techniques, and also a bunch of others, including the ones to help memorizing long lists of things, from the workshop. However, these techniques may not be the best way to do lucid dreaming, or deal with pain, or the various other things taught in the course. I haven’t done a comparison with other techniques for lucid dreaming from other traditions, for example. There may be superior ones out there. I’m telling you the way I learned how to do it, since you asked, but I’m not saying it’s the best way to learn it.
At the workshop, I feel like the limitations of the techniques were not discussed, or what to do when you run into problems, or guidance on the nuances that arise after mastering the basics. There wasn’t a support system of community or teachers. I was pretty much on my own after the workshop. I don’t know if that has changed over the years. Also, the incentives of someone selling workshops to make a living don’t necessarily line up with the best interests of the people taking the course, and there is a lot of hype, and a tendency to focus on the benefits, not the drawbacks, and to be less careful than a scientist would be in making claims.
In all, I think I do not wholeheartedly recommend it, but on balance it made my life better, so I recommend it with caveats.
Tonglen I learned from reading the book When Things Fall Apart, but it looks like there’s a more detailed book about Tonglen by the same author Tonglen: The Path of Transformation by Pema Chodron. https://www.amazon.com/Tonglen-Path-Transformation-Pema-Chödrön/dp/B000AN09FS/
I get the impression that Tibetan Buddhist monks and nuns know a lot more about meditation techniques than I do, but it’s rare that they write down what they know. It may be that they would teach more in person. I think finding a good teacher for this stuff would be helpful, but it is not straightforward to find such a person.
This is the hyssop flower aka Ezov extract that I was taking for a while. I don’t like their marketing claims, particularly the way that website talks about it, but it did seem to have some small effect on my dreams, as opposed to no discernible effect, which is the case with most herbs and foods I consume. http://www.nutramedix.ec/ns/ezov
Did you look at https://www.painscience.com/? That site had info that cured nasty chronic pain of mine that lasted >1 year. This tutorial in particular was extremely helpful: https://www.painscience.com/tutorials/trigger-points.php
To answer your original question: when I was dealing with chronic pain, I had issues with deep despair similar to what you describe. My chronic pain left me unemployed, and I was constantly in fear of doing things that would aggravate my condition and set back the (very slow and variable) progress it was making in resolving itself. Definitely an extremely miserable period.
Thoughts I had that I found helpful and I’ll pass on to you: I decided there were basically 2 strategies for dealing with the pain I had: cure and mitigation. Cure refers to finding a way to roll back the root cause of the problem and return to being my pain-free self. Mitigation refers to accepting the pain and finding ways to work around it (for me—finding a job that doesn’t require me to make use of my hands at all, and probably doing a lot more meditation). I decided that it was best to focus on 1 strategy at a time, and that I should focus on the “cure” strategy for at least several years before switching to “mitigation”. (What’s a few years when I had decades left to live?) I realized that any given “cure” had a pretty low probability of working out, and being in a state of deep despair was extremely non-conducive to trying things that individually had a small probability of working out. This observation was helpful for recalibrating my intuition, and I resolved to make the “list of things I had tried” as long as I could possibly make it. I also resolved to do more of a breadth-first search than a depth-first search, at least at first—I didn’t want something that would gradually fix my pain over the course of many months in a way that I would need careful journaling to observe—I wanted a technique that would help things noticeably, that I could use at any time, if the issues came up in the future. Luckily I did manage to find such a technique, which was trigger point therapy (see above links). I’ve since helped a few others make progress on their pain using trigger point therapy, and I think it’s potentially useful for many, perhaps almost all, people who suffer chronic pain.
Some more specific recommendations:
If you’re not already taking something, start taking SAMe. It’s a supplement that you can buy over the counter that’s anti-depressant and has been shown to be quite useful for arthritis (so who knows, maybe it will end up helping your condition somehow—it probably hasn’t been studied for your condition and you may as well do an n=1 trial). Ideally it will improve your mood, which will give you the motivation to try low-probability treatments, and it might fix your issue on its own. Here’s more info: http://www.lifeextension.com/Magazine/2007/4/report_same/Page-01
Read this book: http://smile.amazon.com/How-Fail-Almost-Everything-Still/dp/1591847745/ Not only is it an great book in and of itself, the author covers mental strategies that are ideal for chronic medical condition sufferers. And he uses the story of his chronic medical condition as a motivating example through the book, so it gives you something to relate to.
I’ve seen you mention trigger point therapy before. It’s something I do, and it helps to a degree, but it has not had made a large change in my quality of life.
The rest seems worthwhile. Thank you for that.
I would guess then that you either
Suffer mainly from trigger points, but you’re treating the wrong ones/haven’t found effective treatment methods
Suffer from some other condition that’s causing trigger points in your muscles as a downstream effect
One thing that might give you a clue is to figure out just how bad your trigger points are. You won’t have a point of reference yourself, so I’d suggest visiting a few massage therapists and asking them after your massage whether you seem tighter than a typical client and where your worst tightness is. If your trigger points are very bad, or you have significant tightness/pain even in areas that aren’t close to your head, I’d update some in the direction of them representing the core of your problem.
If trigger points are your primary issue, then keep in mind they can require quite a lot of creative investigation to treat effectively. For example, my current hypothesis is that the eyestrain issues I struggled with a few months ago were caused in part by the following chain: morton’s foot → trigger points in my soleus → trigger points in my jaw muscles → trigger points in my upper sternocleidomastoid → trigger points in my eye muscles. It sounds weird, but when I spend a day walking around with inserts in my shoes to correct for the Morton’s Foot, my eyes feel like they’re loosening up when I lie down to sleep at the end of the day.
I recommend thoroughly reading the perpetuating factors chapter on every trigger point book you can get your hands on. Part of the reason I recommend SAMe is that one of the perpetuating factors that’s been identified for trigger point problems is folate deficiency, but some people (like me) have MTHFR mutations that interfere with folate motabolism, and SAMe helps get around that. (Getting 23andme can help you determine if you’re also an undermethylator.)
Make yourself the world’s foremost expert on trigger points (and any other field of research that seems helpful for your pain). Then you’ll have a great career if you do end up managing to fix yourself.
I have chronic back pian.
Yes. This is a common problem: look up ‘pain catastrophising’.
Then: Learn specific evidence-based strategies to deal with anxiety (relaxation techniques) and cognitive distortions like catastrophising (cognitive therapies).
Pain catastrophising seems like a bad thing. So are you saying that trying the reverse is a good thing?
Do you know any strategies that you can recommend?
I was recommended cognitive behaviour therapy because I’ve tried almost all medications. I’m guessing that its something like what you’re talking about.
Yes, decastrophising pain is a good thing based on empirical evidence and my personal experience.
Yes, cognitive behavioural therapy is a type of cognitive therapy. When administered correctly it will help. There are also useful resources on the web. I recommend this strategy. I can provide other strategies depending specifically on your etiology.
In addition, mere insight in the psychological interactions with somatic symptoms like pain gives you an edge in recovery over many chronic pain sufferers. You are a smart man to have asked this question. I was not so smart, and suffered for a long time before having this ideas shoved in my face when attending a university lecture on the topic.
And yes, I used to feel suicidal constantly and made some attempts. Now I very rarely feel suicidal. Pain was a big contributor to my mental illness.
Can you describe what pharmacological therapiies you were prescribed and the nature of your pain, if you don’t mind? If you are concerned about privacy I will respect that since it could be identifying information (feel free to pm me). If you have symptoms in areas I have either formal research expertise and/or personal experience (usually they’re the same areas) then I would love to help. I am not a health care professional, do note, but a researcher. The reason I offer is that given what I can formulate about your case based on what you’ve said (chronic pain, pharmacotherapy treatment resistant, CBT offered afterwards rather than concurrently, and where are rehabilitation exercises?) your treatment team may not be operating in alignment with what I understand as best practice. Now, that may be inavavoidable since I don’t read clinical guidelines, and it may simply be that researchers like me have to do more translational research, or it could be that you have a bad physio/gp/whoever and should get a second opinion so you don’t suffer.
Also, I avoid going into too much depth about my specific research expertise here on LW because it becomes rather identifying information. For those who follow this account, this isn’t Carlos (who’s public about him identity) typing right now (this is a shared account, as you can probably tell from our very different writing styles). So, if I do not respond it just means I haven’t had much time to visit lately or I’d be giving myself away. In such a case, I recommend just cnosulting a different health care provider for a second opinion.
Thanks for the help!
I have chronic migraines. In my case it means a constant headache with a powerful migraine every few days.
In terms of medication, I’ve tried: Triptans & NSAIDs as pain relief; Propanalol, Amitriptyline, Topiramate and an Ocipital Nerve block as preventation. I’ve tried Magnesium as a supplement, which I’d hear helped others.
Then there’s stuff like acupuncture, trigger points and one or two things I can’t remember the name of.
Botox is an option, but one that’s met with resistance in my family.
That’s it I think. I really appreciate the advice.
Oh, I actually have next to no knowledge of migraines! Haha, some of my advice may before may even be irrelevant now, because I assumed it was pain in the sense of musculoskeletal or peripheral neuropathic type pain!
When the pain gets intense, it helps to remind myself “Not all days are as bad as this.” It can feel overwhelming in the moment, and it distorts the view of the future. So I remind myself of that too. “What I’m experiencing right now is a distorted view of the future. So I’m not going to make any major decisions based on it.”
It can be hard to look forward to the future when I’m not enjoying the present, when it’s so awful, and there’s no known path or plan to make thing better. It can be extremely frustrating to just endure. It can feel so futile and pointless.
When I have a better day later, I notice and point it out to myself and remember the worse day when it felt like I wouldn’t have anything to look forward to, and am glad that I stayed alive long enough to experience it. And then I can remember that little conversation with myself when it gets intensely worse again, even though I don’t recapture the good feeling at that time.
Suicide can seem pretty attractive under conditions of intense pain. Thoughts of suicide can be something like a valve, or an escape fantasy, or a fantasy of having an off switch for the pain. Repetitive thoughts can be related to exhaustion or illness. I think a lot of these thoughts and feelings can have a physiological basis, and are not necessarily something to identify with. They are probably pretty good at signaling “something is wrong” but not very good at “this is an accurate and complete picture of my desires”. Paying attention to what you physically did just before the thoughts sometimes could lead to insights.