One person's journey with chronic pain
June 22, 2023 11:19 AM Subscribe
Pain is like a memory, a path reinforced every time we walk down it. As such, it’s quite possible that writing this is an act of self-harm. It’s not just that it hurts to write, although it does; it’s that when I started thinking about this piece, reading around it, even jotting down notes, I felt the pain in my forearms flare up again, and for a month or two I considered calling it off. My physiotherapist would call that “avoidance”. I would call it “learning from experience”, given that it was writing that got me here in the first place. A June 2023 Guardian long read by Oliver Franklin-Wallis on his struggle to find relief from chronic pain. Content warning: moderate self-harm and suicidal ideation.
Chronic pain – any pain that persists for longer than three months – is a vast and growing public health problem. The numbers are unclear (unlike cancer, there is no national register). By some estimates, between a quarter and a third of the UK population live with ongoing pain; for those who are 75 or over, that figure rises to more than half. About 3 million people in the UK live with chronic “primary” pain – that which has no identifiable physical cause. For those with this condition, myself included, pain is no longer a symptom: it is the disease itself.
... It’s funny: a few months earlier, that interaction might have sent me into another spiral. But, to my surprise, in the weeks after the appointment, something inside me lifted. I finally accepted that, as well-meaning as the medical professionals might be, they were no longer really trying to make me better. Not better in the way that I intended. To them, I was a lost cause. The sensation was not of failure, but of closure.
Chronic pain – any pain that persists for longer than three months – is a vast and growing public health problem. The numbers are unclear (unlike cancer, there is no national register). By some estimates, between a quarter and a third of the UK population live with ongoing pain; for those who are 75 or over, that figure rises to more than half. About 3 million people in the UK live with chronic “primary” pain – that which has no identifiable physical cause. For those with this condition, myself included, pain is no longer a symptom: it is the disease itself.
... It’s funny: a few months earlier, that interaction might have sent me into another spiral. But, to my surprise, in the weeks after the appointment, something inside me lifted. I finally accepted that, as well-meaning as the medical professionals might be, they were no longer really trying to make me better. Not better in the way that I intended. To them, I was a lost cause. The sensation was not of failure, but of closure.
Vast and growing public health problem. Yes. I feel like we're going to be hearing a lot more about this kind of thing.
I was recently diagnosed with Complex Regional Pain Syndrome (CRPS) after struggling for a year with increasingly severe pain in my left foot. I'm not looking for sympathy here, just saying I have first-hand experience with pain of the chronic variety.
The diagnosis was actually a huge turning point for me because it put me back in the driver's seat after months and months of doctors and physical therapists muttering about surgery. If you're dealing with chronic pain and your doctors are shrugging about it, here are a few things to check out:
- Dan Buglio's Pain-Free You
- Curable app
- Pain Recovery Program by Alan Gordon, LCSW
Hang in there! It is possible to recover from this kind of thing.
posted by temporal_cj at 1:46 PM on June 22, 2023 [7 favorites]
I was recently diagnosed with Complex Regional Pain Syndrome (CRPS) after struggling for a year with increasingly severe pain in my left foot. I'm not looking for sympathy here, just saying I have first-hand experience with pain of the chronic variety.
The diagnosis was actually a huge turning point for me because it put me back in the driver's seat after months and months of doctors and physical therapists muttering about surgery. If you're dealing with chronic pain and your doctors are shrugging about it, here are a few things to check out:
- Dan Buglio's Pain-Free You
- Curable app
- Pain Recovery Program by Alan Gordon, LCSW
Hang in there! It is possible to recover from this kind of thing.
posted by temporal_cj at 1:46 PM on June 22, 2023 [7 favorites]
I also suffer from chronic pain, in my case lower back pain. I do have a diagnosis (kind of) thanks to an MRI (spinal stenosis and lots of garden variety degeneration, bulging, etc plus muscle overwork to deal with the spinal mess), but after 20 years and many physio, osteo and physiatrist appointments I have accepted that it will never go away. It always hurts, but most of the time it is bearable. Once or twice a year I have a major flare-up. At these times I have great difficulty sleeping, moving or thinking about anything else. The worst period usually lasts 3-5 days, and then I have a few weeks of moderate pain before going back to my base-level pain. There's no rhyme or reason for the flare-ups usually. They just arrive. I dread them and every time they happen I worry that they won't recede.
The thing that helps me the most was mentioned in the article, and that is to keep my mind on other things and avoid thinking of the pain at all costs. I exercise religiously and now have ridiculously strong core muscles. I've mostly avoided medication and the ones I have tried don't help at all. I'm tempted every time I am in crisis* but all of the research I've seen plus speaking with my practitioners leads me to believe that the meds would do more harm than good for me, at least at this point.
In opposition to the writer, I'm best if I stay moving wherever possible. I avoid sitting on chairs, and if I do have to sit on a chair I try and keep my knees up high. This leads to some strange seating positions that probably would suit a 5-year-old better than a 50-year-old. My "desk" in my office is me sitting on the floor, either on a yoga mat or a beanbag. I'm so lucky I have a job where I can get away with this weirdness. Like the author, I've been told that a lot of this pain is psychological and that my neural pathways have been well-worn through years of chronic pain. Just being in pain doesn't necessarily (in my case) mean that anything is actually doing damage to me. I try and remember this when I have a flare-up and breathing hurts so much I can't stop my eyes from leaking tears and a cough or sneeze coming on is terrifying. I don't talk about it to anyone really because it is so boring. Everyone knows, what more is there to say? My sympathies to all those suffering.
*To be honest when in crisis I shovel in NSAIDs as fast as I can even if they don't work, because I'm so desperate. I can usually get some relief from living in stinking hot baths and rigging myself to hang from a climbing harness attached to a chin-up bar to relieve pressure on my spine.
posted by Cuke at 1:48 PM on June 22, 2023 [19 favorites]
The thing that helps me the most was mentioned in the article, and that is to keep my mind on other things and avoid thinking of the pain at all costs. I exercise religiously and now have ridiculously strong core muscles. I've mostly avoided medication and the ones I have tried don't help at all. I'm tempted every time I am in crisis* but all of the research I've seen plus speaking with my practitioners leads me to believe that the meds would do more harm than good for me, at least at this point.
In opposition to the writer, I'm best if I stay moving wherever possible. I avoid sitting on chairs, and if I do have to sit on a chair I try and keep my knees up high. This leads to some strange seating positions that probably would suit a 5-year-old better than a 50-year-old. My "desk" in my office is me sitting on the floor, either on a yoga mat or a beanbag. I'm so lucky I have a job where I can get away with this weirdness. Like the author, I've been told that a lot of this pain is psychological and that my neural pathways have been well-worn through years of chronic pain. Just being in pain doesn't necessarily (in my case) mean that anything is actually doing damage to me. I try and remember this when I have a flare-up and breathing hurts so much I can't stop my eyes from leaking tears and a cough or sneeze coming on is terrifying. I don't talk about it to anyone really because it is so boring. Everyone knows, what more is there to say? My sympathies to all those suffering.
*To be honest when in crisis I shovel in NSAIDs as fast as I can even if they don't work, because I'm so desperate. I can usually get some relief from living in stinking hot baths and rigging myself to hang from a climbing harness attached to a chin-up bar to relieve pressure on my spine.
posted by Cuke at 1:48 PM on June 22, 2023 [19 favorites]
I do not yet have chronic pain, but I know that many people and MetaFilter do. And I know that many of us will end up having it, and that’s why I wanted to share it here I think it’s a mystifying thing for those of us who do not have it and this article helped me understand much more about what my friends experience. Note: I added a content morning, because I know some people are affected by topics related to suicidal ideation and self harm. For me, at least, that was a mild aspect of the overall story.
posted by Bella Donna at 1:52 PM on June 22, 2023 [2 favorites]
posted by Bella Donna at 1:52 PM on June 22, 2023 [2 favorites]
Hang in there! It is possible to recover from this kind of thing.
not my variety, which is neuropathy aka nerve damage (different location but similar in many ways to what Cuke describes above). As one expert put, nerve damage does not get better, so you better start working on ways to live with it. He was a bit of a cold fish but, at that point in my diagnosis, I was relieved to have somebody expert on the problem just tell me what he knew to be true with zero sugar coating.
That little moment was about ten years ago and it was over ten years into my adventure with chronic pain. So I guess this my way of saying that even though you may never fully recover from what's hurting you, you can find some useful strategies toward working around it. And find a way to live a life that's worth the trouble. Mine certainly is.
posted by philip-random at 2:57 PM on June 22, 2023 [9 favorites]
not my variety, which is neuropathy aka nerve damage (different location but similar in many ways to what Cuke describes above). As one expert put, nerve damage does not get better, so you better start working on ways to live with it. He was a bit of a cold fish but, at that point in my diagnosis, I was relieved to have somebody expert on the problem just tell me what he knew to be true with zero sugar coating.
That little moment was about ten years ago and it was over ten years into my adventure with chronic pain. So I guess this my way of saying that even though you may never fully recover from what's hurting you, you can find some useful strategies toward working around it. And find a way to live a life that's worth the trouble. Mine certainly is.
posted by philip-random at 2:57 PM on June 22, 2023 [9 favorites]
I've started low-dose naltrexone for chronic pain (autoimmune-instigated neuropathy and arthritis edition); a couple of years ago, LDN was designated an orphan drug to treat complex regional pain syndrome.
posted by Iris Gambol at 3:29 PM on June 22, 2023 [1 favorite]
posted by Iris Gambol at 3:29 PM on June 22, 2023 [1 favorite]
Thank you for this, Bella Donna. I’ll see if I can muster up the courage to read this later.
My experience is different that what temporal_cj, Cuke, philip-random and Iris Gambol have referred above. In my case, I have chronic knee pain which limits me greatly (I can only walk a couple hundred meters at once), but as far as doctors can tell, there is nothing wrong with my knees.
Since I was a child, I had the feeling there was every day a story in the news about how many new treatments were being discovered for every possible condition under the sun. I was very (unpleasantly) surprised to find out that there is not much that can be done about chronic pain.
I wish I was able to make a more positive contribution, but after ten years of chronic pain I don’t even have a diagnosis. In any case, if I may be allowed to pass a piece of advice to you whippersnappers is this: take care of your knees.
posted by LaVidaEsUnCarnaval at 3:49 PM on June 22, 2023 [3 favorites]
My experience is different that what temporal_cj, Cuke, philip-random and Iris Gambol have referred above. In my case, I have chronic knee pain which limits me greatly (I can only walk a couple hundred meters at once), but as far as doctors can tell, there is nothing wrong with my knees.
Since I was a child, I had the feeling there was every day a story in the news about how many new treatments were being discovered for every possible condition under the sun. I was very (unpleasantly) surprised to find out that there is not much that can be done about chronic pain.
I wish I was able to make a more positive contribution, but after ten years of chronic pain I don’t even have a diagnosis. In any case, if I may be allowed to pass a piece of advice to you whippersnappers is this: take care of your knees.
posted by LaVidaEsUnCarnaval at 3:49 PM on June 22, 2023 [3 favorites]
Delurking because chronic pain has been my nemesis for 15 years at this point. I have nerve damage, no one knows what caused it. I have been checked for MS, Lyme disease, diabetes, various forms of arthritis, disc problems. I have endured two EMG/NCS tests that were tortuously painful. As I sit here I have a new pain I have never felt before--a pinpoint stabbing sensation to the right of where my thyroid used to live. It's been dogging me for nearly 3 weeks, varying between a 3 and a 7 on the pain scale. I can't take any antidepressants that sometimes work as pain medication because I have unmanaged bipolar disorder (a whole other nightmare story) and it would spark rapid cycling. I am allergic to gabapentin.
Last year I read a pretty ableist article on Slate about how spoonies in the chronic pain community make pain their identity and reinforce central sensitization. The author, a former chronic pain sufferer, advocated for PNE--pain neuroscience education--because it worked for them. I pretended the ableism wasn't present in the article and went on a research frenzy, but I couldn't find much PNE material aimed at me as the audience. What little I was able to gather involved not babying my body regardless of how it felt. So I decided to start with just walking outdoors. Sometimes I had to drag my half numb, half stabbing-pins-and-needles leg through the door at the end of it. My entire apartment reeked of tiger balm. No matter how my body felt, I walked every day. I wish I'd had some guidance because I had to figure out on my own that I needed to add rest days into my schedule to avoid developing actual exercise related pain, like shin splits. The key was figuring out the difference between the two kinds of pain.
4 months have passed. My leg pain has settled down from 8/10 to roughly 3/10 on most days. I didn't care about losing weight, but I've lost some. I've vastly improved my cardiovascular fitness. I'm sleeping better. I thought I had it licked--I just needed to stay active, keep moving, and keep reminding myself that my *chronic* nerve pain sensations won't be resolved with post-exertion rest or exertion avoidance and that I can improve my overall health and happiness with movement. But then this goddamn neck pain started. And it's the same thing from the doctor--ice it, take Tylenol. If it doesn't improve we'll order an ultrasound.
I'm so goddamn tired of it.
I've also been incredibly resistant to the dx my doctor is flirting with--fibromyalgia. Not because I don't think it's real, but because I don't want all of my pain dismissed forever because of this dx. I already know what it's like to be a "heart patient" because I have a congenital heart defect, and I don't want to become a "fibromyalgia patient" because it's hard enough to be a post-menopausal woman in a doctor's office without adding that particular dx to my chart.
Anyway, it looks like me and this author came to similar conclusions. I have to keep living even if it feels like I am dying.
posted by MagnificentVacuum at 4:37 PM on June 22, 2023 [7 favorites]
Last year I read a pretty ableist article on Slate about how spoonies in the chronic pain community make pain their identity and reinforce central sensitization. The author, a former chronic pain sufferer, advocated for PNE--pain neuroscience education--because it worked for them. I pretended the ableism wasn't present in the article and went on a research frenzy, but I couldn't find much PNE material aimed at me as the audience. What little I was able to gather involved not babying my body regardless of how it felt. So I decided to start with just walking outdoors. Sometimes I had to drag my half numb, half stabbing-pins-and-needles leg through the door at the end of it. My entire apartment reeked of tiger balm. No matter how my body felt, I walked every day. I wish I'd had some guidance because I had to figure out on my own that I needed to add rest days into my schedule to avoid developing actual exercise related pain, like shin splits. The key was figuring out the difference between the two kinds of pain.
4 months have passed. My leg pain has settled down from 8/10 to roughly 3/10 on most days. I didn't care about losing weight, but I've lost some. I've vastly improved my cardiovascular fitness. I'm sleeping better. I thought I had it licked--I just needed to stay active, keep moving, and keep reminding myself that my *chronic* nerve pain sensations won't be resolved with post-exertion rest or exertion avoidance and that I can improve my overall health and happiness with movement. But then this goddamn neck pain started. And it's the same thing from the doctor--ice it, take Tylenol. If it doesn't improve we'll order an ultrasound.
I'm so goddamn tired of it.
I've also been incredibly resistant to the dx my doctor is flirting with--fibromyalgia. Not because I don't think it's real, but because I don't want all of my pain dismissed forever because of this dx. I already know what it's like to be a "heart patient" because I have a congenital heart defect, and I don't want to become a "fibromyalgia patient" because it's hard enough to be a post-menopausal woman in a doctor's office without adding that particular dx to my chart.
Anyway, it looks like me and this author came to similar conclusions. I have to keep living even if it feels like I am dying.
posted by MagnificentVacuum at 4:37 PM on June 22, 2023 [7 favorites]
I have chronic pain but it's got an obvious cause (autoimmune arthritis, diagnosed when I was in high school, so almost 40 years ago). My problems are bad enough and I don't have to go through the mystery diagnosis problem for pain, though I have been there for plenty of other things. This article hit me where I live and I can only imagine what it was like for those who have pain that they can't trace to a cause.
Gentle hugs for those of you who need & want them. The pain life sucks.
posted by gentlyepigrams at 4:50 PM on June 22, 2023 [3 favorites]
Gentle hugs for those of you who need & want them. The pain life sucks.
posted by gentlyepigrams at 4:50 PM on June 22, 2023 [3 favorites]
Me too, chronic pain. Lower back in my case and I've had all sorts of MRIs and X-rays to figure out why. I thought it was sciatica, but the tests say it's arthritis. I had cortisone shots which helped for a while. I had targeted ablations to destroy the nerves sending pain signals, and that didn't help at all. Tylenol does nothing for me. Ibuprophenin helps somewhat. I've tried mental imaging, happy talk, meditation, those exercises you find in cure-your-pain books which claim you can re-wire your neurons by thinking. Sorta helps, maybe? And yes, core strengthinging, flexibility, Pilates, aerobics, resistance/weightlifting, rest, lumbar supports, barley husk pillows, massage and physical therapy, done it all. Each one kind of helps. For me there's no one cure, just a layered approach. What does help, as someone said above, is distraction. If I'm absorbed in a great book, a delightful conversation, or a nice bout of initmacy with my partner, then I don't notice the pain. I don't think it goes away, it just gets ignored the same way you ignore the sounds of the refrigerator or the hum of background chatter in a restaurant.
posted by mono blanco at 5:07 PM on June 22, 2023 [4 favorites]
posted by mono blanco at 5:07 PM on June 22, 2023 [4 favorites]
In addition to resources like Dan Buglio, Alan Gordon and Curable as mentioned by temporal_cj, I would also add Nicole Sachs' podcast The Cure for Chronic Pain. I have found all of these to be helpful for chronic long term symptoms that doctors have no idea how to treat.
posted by Mallenroh at 10:40 PM on June 22, 2023 [1 favorite]
posted by Mallenroh at 10:40 PM on June 22, 2023 [1 favorite]
I've recently become acquainted with chronic pain after injuring my shoulder (multiple tears in tendons plus bursitis) through my own stupidity of repeatedly lifting things far too heavy for me to lift even once. I managed to stay in denial for quite a while and just worked around the pain but, after a few months it got too much for even the stoic in me to ignore. After eventually being diagnosed and receiving my first steroid injection, much of the constant pain was relieved, although there was still pain if I lifted my arm above shoulder height or tried to reach behind me. But I could sleep once again, as long as I didn't roll over the wrong way. This is where I sit now and this is it for the foreseeable future. I'm much more careful with my shoulder and only have pain while resting if I've overdone it a bit.
I say all this not to claim that I experience anything like the chronic pain that so many suffer from for years or forever. But that six months or so when I had pain that ranged from merely annoying to debilitating 24/7 made me think a lot about how people manage to live with actual severe pain for so long. For those of you dealing with this, I both sympathise with you and salute you for keeping on. I can well imagine how hard it must be just to get out of bed some days. All I can offer is encouragement and firm but careful hugs.
posted by dg at 11:03 PM on June 22, 2023 [1 favorite]
I say all this not to claim that I experience anything like the chronic pain that so many suffer from for years or forever. But that six months or so when I had pain that ranged from merely annoying to debilitating 24/7 made me think a lot about how people manage to live with actual severe pain for so long. For those of you dealing with this, I both sympathise with you and salute you for keeping on. I can well imagine how hard it must be just to get out of bed some days. All I can offer is encouragement and firm but careful hugs.
posted by dg at 11:03 PM on June 22, 2023 [1 favorite]
One of my best friends has had his life turned 'round and upside down the past three years plus. A heart attack. I don't even know the whys and wherefores of this but somehow he said the wrong thing with the wrong doc in the room and he got himself a 72 hour psych ward lock-down. In no particular order: agonizing pain in his back. Agonizing pain in his neck. Then both, together. Then, for fun, nephropathy, which basically is that your feet are on fire -- electric fire -- and then that pain moves up his legs and spine. Since it showed up it's been pretty much a constant companion, greater or lessor degree. If he is not very careful he can pretty much set himself on fire, raking a few leaves for jesus christ sake. If he is very careful he can pretty much set himseld on fire, not raking a few leaves.
All these years I've attempted to explain how I have this manic depression thing, plus also how this manic depression thing has me. Chronic ongoing pain has been better at explaining it to him than I've been able to, he gets it on a bit deeper level, he's had days crying in pain, crying in frustration, crying in despair, wanting to die. I call him a big pantywaist -- I'm allowed that as he's a transvestite -- and I call him a big candy-ass, which I'm allowed to anybody, it's a favorite of mine. The fact that I'm such an asshole is outrageous of course, and it breaks right through his pain, gets him laughing. I am the only person who can get through with humor, black humor, audacious humor of whatever sort, and it's as good as hydrocodone and no, I am not kidding here. He'll take less of it. He's learning to become ve4y wary of it, and of klonopin also, and ambien. All of those are prescribed, and his docs know he's not a junkie and trust him, as they ought. I, on the other hand, know that he *is* a junkie, years in the past, but just as with alcoholics, caution caution caution. You'll find this ridiculous but it isn't, I see the stuff as a sacrament, and I'm over here broke-bones on my knees in prayer, asking can I maybe take 1/4 less hydrocodone or whatever it is they've written me, some really neato stuff when I broke all the bones in my face, just hydrocodone for whatever else has come along. My doctors trust me, as they should.
My friend, he is learning the contours of pain, same as you do with depression pain, or, worst, mixed-state pain, where the black thoughts and despairing mood are driven by mania. What a fucker that is. Ha ha ha, my friend has had to learn some psych tricks -- he's not got manic depression but he gets awfully black and despairing when his body is on electric fire and won't let go. He becomes unhappy. (Yes, of course he becomes unhappy. Duh. That is the black humor I throw at him, often it jangles through and gets him to laughing.)
Now. Imagine you've found yourself turned into hydrocodone, and you've got a friend of 40 years standing who has your phone number, and maybe he'll want to shake a few laughs out of me, same as pills out of a bottle. This is where I've got to be careful. Real careful. You cannot give more than you've got, or, more accurately, you'd best not give more than you've got, it's like kiting a check, you're writing it and can't cover it. Not a good plan. I've a pretty good sense of when the ringing phone isn't to talk about a fun movie but is instead hoping that I'm a PEZ dispensor, spitting out chuckles as salve. If I don't have any juice, or, worse, if I'm in deep shit myself, voice mail. Sometimes followed by a text msg "I'm fuct. Life sux. I hate everything. Yes, yes, I'm sitting down on the river and Austin is good as it gets but I don't give a rats ass, how come I had to live when I had those fucking heart attacks and died, other people get heart attacks and die and get to stay dead. But me? No. Fuck."
The biggest thing to to break through his bleak, once that's cracked you literally can feel him lightening -- it's pretty fun, truth to be told. I have assigned him Marx brothers movies. I mock him about this one girlfriend he had. We talk about friends deep in our hearts from early in our AA lives, and how many of them are passing from the scene, or have passed from the scene. We talk about how ridiculous it is that we are now the Old Timers -- it's like, what, are you kidding me? But it is fact. We've stayed clean and sober somehow, we've picked up some wisdom somewhere or other.
The biggest wisdom I've got for you right here right now? It's so simple but it's where it's at:
One Day At A Time.
And One Day At A Time is good for pain, also. Not ragged jagged broken bones poking out your legs pain, no. But chronic stuff, the only way that it can be learned is One Day At A Time. Patience, with your learning, with your pain, with yourself.
How am I supposed to button this up? Damned if I know. I guess I'll say what has come to me as I've written here -- I wish ease, and healing, to any of us here who are hurting. If you've made it here and stayed here with and through manic depression pain -- they can't understand us. Night shift psych ward nurses know us best i think, one hell of a lot better than most of the shrinks I've encountered, and they'll be glad to talk about it, too. Look at the eyes of a night shift psych ward nurse, better, look into their eyes: They know. Don't try for even a second to run any kind of game at all, they'll laugh you right off, but not meanly, just that they're not about to play. These are people who would damn sure be difficult to be married to, plus they're bright enough to not marry us in the first place.
posted by dancestoblue at 1:06 AM on June 23, 2023 [5 favorites]
All these years I've attempted to explain how I have this manic depression thing, plus also how this manic depression thing has me. Chronic ongoing pain has been better at explaining it to him than I've been able to, he gets it on a bit deeper level, he's had days crying in pain, crying in frustration, crying in despair, wanting to die. I call him a big pantywaist -- I'm allowed that as he's a transvestite -- and I call him a big candy-ass, which I'm allowed to anybody, it's a favorite of mine. The fact that I'm such an asshole is outrageous of course, and it breaks right through his pain, gets him laughing. I am the only person who can get through with humor, black humor, audacious humor of whatever sort, and it's as good as hydrocodone and no, I am not kidding here. He'll take less of it. He's learning to become ve4y wary of it, and of klonopin also, and ambien. All of those are prescribed, and his docs know he's not a junkie and trust him, as they ought. I, on the other hand, know that he *is* a junkie, years in the past, but just as with alcoholics, caution caution caution. You'll find this ridiculous but it isn't, I see the stuff as a sacrament, and I'm over here broke-bones on my knees in prayer, asking can I maybe take 1/4 less hydrocodone or whatever it is they've written me, some really neato stuff when I broke all the bones in my face, just hydrocodone for whatever else has come along. My doctors trust me, as they should.
My friend, he is learning the contours of pain, same as you do with depression pain, or, worst, mixed-state pain, where the black thoughts and despairing mood are driven by mania. What a fucker that is. Ha ha ha, my friend has had to learn some psych tricks -- he's not got manic depression but he gets awfully black and despairing when his body is on electric fire and won't let go. He becomes unhappy. (Yes, of course he becomes unhappy. Duh. That is the black humor I throw at him, often it jangles through and gets him to laughing.)
Now. Imagine you've found yourself turned into hydrocodone, and you've got a friend of 40 years standing who has your phone number, and maybe he'll want to shake a few laughs out of me, same as pills out of a bottle. This is where I've got to be careful. Real careful. You cannot give more than you've got, or, more accurately, you'd best not give more than you've got, it's like kiting a check, you're writing it and can't cover it. Not a good plan. I've a pretty good sense of when the ringing phone isn't to talk about a fun movie but is instead hoping that I'm a PEZ dispensor, spitting out chuckles as salve. If I don't have any juice, or, worse, if I'm in deep shit myself, voice mail. Sometimes followed by a text msg "I'm fuct. Life sux. I hate everything. Yes, yes, I'm sitting down on the river and Austin is good as it gets but I don't give a rats ass, how come I had to live when I had those fucking heart attacks and died, other people get heart attacks and die and get to stay dead. But me? No. Fuck."
The biggest thing to to break through his bleak, once that's cracked you literally can feel him lightening -- it's pretty fun, truth to be told. I have assigned him Marx brothers movies. I mock him about this one girlfriend he had. We talk about friends deep in our hearts from early in our AA lives, and how many of them are passing from the scene, or have passed from the scene. We talk about how ridiculous it is that we are now the Old Timers -- it's like, what, are you kidding me? But it is fact. We've stayed clean and sober somehow, we've picked up some wisdom somewhere or other.
The biggest wisdom I've got for you right here right now? It's so simple but it's where it's at:
One Day At A Time.
And One Day At A Time is good for pain, also. Not ragged jagged broken bones poking out your legs pain, no. But chronic stuff, the only way that it can be learned is One Day At A Time. Patience, with your learning, with your pain, with yourself.
How am I supposed to button this up? Damned if I know. I guess I'll say what has come to me as I've written here -- I wish ease, and healing, to any of us here who are hurting. If you've made it here and stayed here with and through manic depression pain -- they can't understand us. Night shift psych ward nurses know us best i think, one hell of a lot better than most of the shrinks I've encountered, and they'll be glad to talk about it, too. Look at the eyes of a night shift psych ward nurse, better, look into their eyes: They know. Don't try for even a second to run any kind of game at all, they'll laugh you right off, but not meanly, just that they're not about to play. These are people who would damn sure be difficult to be married to, plus they're bright enough to not marry us in the first place.
posted by dancestoblue at 1:06 AM on June 23, 2023 [5 favorites]
I’ve been living with chronic pain for five years now, and I have diagnoses for why but since some have no decent treatments (hi fibromyalgia!) it doesn’t always help to know. I read the article when it came out so I can’t remember if this was mentioned, but something I wanted to highlight is the problem of comorbidity, when you have one or more chronic illnesses you’re much more likely to develop others.
posted by ellieBOA at 3:42 AM on June 23, 2023 [2 favorites]
posted by ellieBOA at 3:42 AM on June 23, 2023 [2 favorites]
Chronic pain in my friend circles has been popping up steadily over the years, going back to college. At first, being younger, and not quite acclimated to the rest of the world, I thought the few folks I knew to speak of it were outliers. But as time has worn on, it's become apparent that chronic pain is much more common, and overlaps with many other health challenges.
These folks need our unconditional love and support, hopefully consistently from more than one person.
Thanks for posting, Bella Donna. Also, really appreciate your perspective dancestoblue.
posted by JoeXIII007 at 4:15 AM on June 23, 2023 [2 favorites]
These folks need our unconditional love and support, hopefully consistently from more than one person.
Thanks for posting, Bella Donna. Also, really appreciate your perspective dancestoblue.
posted by JoeXIII007 at 4:15 AM on June 23, 2023 [2 favorites]
I practice as a pain physician in the US. This story almost perfectly recreates the narrative and arc of many of my patients. His emphasis on joy and distraction is one of the reasons why one of the main questions I ask on intake is “what brings you or used to bring you meaning/purpose/joy?”. The other major strategy that was taught to me by an elder hematologist who trained in an era without good treatments was to simply listen without judgment. And so I listen for as long as it takes and as long as my clinic time can afford.
A few resources not mentioned above:
Daniel Clauw, who is an expert in fibromyalgia, has put together www.thepainguide.com
Rachel Zoffness who is a pain psychologist focusing on CBT has written an excellent and evidence based book called The Pain Management Workbook which is good, if simplistic and patronizing at times.
And Paul Ingraham, a chronic pain sufferer and science journalist has dedicated thousands upon thousands of hours to writing and researching over at www.PainScience.com
posted by ghostpony at 4:42 AM on June 23, 2023 [6 favorites]
A few resources not mentioned above:
Daniel Clauw, who is an expert in fibromyalgia, has put together www.thepainguide.com
Rachel Zoffness who is a pain psychologist focusing on CBT has written an excellent and evidence based book called The Pain Management Workbook which is good, if simplistic and patronizing at times.
And Paul Ingraham, a chronic pain sufferer and science journalist has dedicated thousands upon thousands of hours to writing and researching over at www.PainScience.com
posted by ghostpony at 4:42 AM on June 23, 2023 [6 favorites]
My wife suffers from POTS and chronic fatigue, which are just descriptions of her symptoms instead of a reason or explanation of where they come from, and that’s very disheartening :(
posted by _benj at 5:03 AM on June 23, 2023 [2 favorites]
posted by _benj at 5:03 AM on June 23, 2023 [2 favorites]
Hi! Clocking in with 17 years of Fibro. I honestly can not remember what it felt like to wake up or exist without some form of pain. 90% of my time I'm at 4 or 5 and can pretend that is a 1. But that 10% is when shit gets completely out of hand.
For me, the most frustrating part of it all is the people in my life who have never known me before the Fibro and STILL don't get it when I say I can't do something or don't want to do something because I don't want to be sapped after. Like, my husband is the worst about it. He met me 3 years into my diagnosis and I have never hidden my symptoms from him but he still says things like "Let's go do an three day overnight kayaking trip. You love kayaking!" And when I explain that while I love kayaking, I will not be able to function after paddling all day, sleeping on the ground in a tent, and then doing all that for two more days. He tells me I need to "push myself" and "exercise makes me feel better." Which to a point that's true but I also know exactly what my triggers are and when a flare up will show and I can guarantee that shitty sleep and physical exertion are the quickest and easiest way to give me a flare. The only way it could kick in faster is if I was on my period and it was cold.
I'm gonna look into that Curable app because I know that mediation and controlled exercise do help. I will never expect to be a 0 for pain, not in this life, but I'd like to have more days where I mostly forget I'm in pain than those where I remember it. Thanks for the article and thanks for placing attention on something that so many of us suffer through quietly.
posted by teleri025 at 7:12 AM on June 23, 2023 [2 favorites]
For me, the most frustrating part of it all is the people in my life who have never known me before the Fibro and STILL don't get it when I say I can't do something or don't want to do something because I don't want to be sapped after. Like, my husband is the worst about it. He met me 3 years into my diagnosis and I have never hidden my symptoms from him but he still says things like "Let's go do an three day overnight kayaking trip. You love kayaking!" And when I explain that while I love kayaking, I will not be able to function after paddling all day, sleeping on the ground in a tent, and then doing all that for two more days. He tells me I need to "push myself" and "exercise makes me feel better." Which to a point that's true but I also know exactly what my triggers are and when a flare up will show and I can guarantee that shitty sleep and physical exertion are the quickest and easiest way to give me a flare. The only way it could kick in faster is if I was on my period and it was cold.
I'm gonna look into that Curable app because I know that mediation and controlled exercise do help. I will never expect to be a 0 for pain, not in this life, but I'd like to have more days where I mostly forget I'm in pain than those where I remember it. Thanks for the article and thanks for placing attention on something that so many of us suffer through quietly.
posted by teleri025 at 7:12 AM on June 23, 2023 [2 favorites]
Some years ago by now, someone noticed an Enlargement of choroid plexus in complex regional pain syndrome:
I’ve been waiting years for that discovery to take root, spread, and ultimately bear fruit in the form of improved diagnoses and new treatments, but so far I haven’t seen it.
posted by jamjam at 11:02 AM on June 23, 2023 [2 favorites]
The choroid plexus, located in brain ventricles, has received surprisingly little attention in clinical neuroscience. In morphometric brain analysis, we serendipitously found a 21% increase in choroid plexus volume in 12 patients suffering from complex regional pain syndrome (CRPS) compared with age- and gender-matched healthy subjects. No enlargement was observed in a group of 8 patients suffering from chronic pain of other etiologies. Our findings suggest involvement of the choroid plexus in the pathogenesis of CRPS. Since the choroid plexus can mediate interaction between peripheral and brain inflammation, our findings pinpoint the choroid plexus as an important target for future research of central pain mechanisms.And since the choroid plexus is the source of cerebrospinal fluid, that seems to me like a strong indicator that some cases of CPRS are caused by a spinal fluid leak that the choroid plexus has enlarged to try to keep up with.
I’ve been waiting years for that discovery to take root, spread, and ultimately bear fruit in the form of improved diagnoses and new treatments, but so far I haven’t seen it.
posted by jamjam at 11:02 AM on June 23, 2023 [2 favorites]
one of the main questions I ask on intake is “what brings you or used to bring you meaning/purpose/joy?”.
the turning point for me was when the question I was asking changed from WHAT CAN'T I DO ANYMORE? to WHAT CAN I STILL DO?
In other words, rather than dwell on all that I was losing, shift my focus to those aspects of my life that I could still pursue, that I valued, that engaged me. It didn't make the pain go away. It did put it in its place somewhat. Coincident with this was a sort of awakening on my part to just how many people out there have it worse than me, or certainly have their own very real struggles. I can still see, hear, go for a walk, digest food, enjoy a drink with a friends, do my work. I even sleep okay most nights.
Later I heard a pain specialist talking on CBC radio about how there was a serious rethink going on in the chronic pain world -- the focus shifting from a coldly medical approach to pain (diagnosis, prognosis, surgery, meds etc) to a far more holistic one which was pretty much in line with the shift I'd already made ... and the question asked above.
posted by philip-random at 11:19 AM on June 23, 2023 [5 favorites]
the turning point for me was when the question I was asking changed from WHAT CAN'T I DO ANYMORE? to WHAT CAN I STILL DO?
In other words, rather than dwell on all that I was losing, shift my focus to those aspects of my life that I could still pursue, that I valued, that engaged me. It didn't make the pain go away. It did put it in its place somewhat. Coincident with this was a sort of awakening on my part to just how many people out there have it worse than me, or certainly have their own very real struggles. I can still see, hear, go for a walk, digest food, enjoy a drink with a friends, do my work. I even sleep okay most nights.
Later I heard a pain specialist talking on CBC radio about how there was a serious rethink going on in the chronic pain world -- the focus shifting from a coldly medical approach to pain (diagnosis, prognosis, surgery, meds etc) to a far more holistic one which was pretty much in line with the shift I'd already made ... and the question asked above.
posted by philip-random at 11:19 AM on June 23, 2023 [5 favorites]
I endured severe chronic pain between the mid-1960s and 2004, when I developed a type of cancer that required a bone-marrow transplant. The transplant took care of it all. So after that, some intermittent pain, even when severe, was not that hard to handle.
My mother used to say "The body takes it out on the soul." She was right. Pain makes you small.
To those who presume to say they "feel my pain," allow me to hit you on the arch of your foot with a big hammer, every hour on the hour for about ten years. Then we'll trade bird calls and folk remedies.
I know some of you really meant well. I appreciate the effort.
Others who are filing through their catalog of reflexive social interactions--you'll find it just after "Have a nice day." Please just blink rapidly and walk away, because I have amassed a staggering number of caustic replies I'm sure will amaze and confuse you.
Most of that pain is behind me now. They say you forget pain. Maybe some kinds, but you never forget the weight of the gloom.
posted by mule98J at 12:11 PM on June 23, 2023 [5 favorites]
My mother used to say "The body takes it out on the soul." She was right. Pain makes you small.
To those who presume to say they "feel my pain," allow me to hit you on the arch of your foot with a big hammer, every hour on the hour for about ten years. Then we'll trade bird calls and folk remedies.
I know some of you really meant well. I appreciate the effort.
Others who are filing through their catalog of reflexive social interactions--you'll find it just after "Have a nice day." Please just blink rapidly and walk away, because I have amassed a staggering number of caustic replies I'm sure will amaze and confuse you.
Most of that pain is behind me now. They say you forget pain. Maybe some kinds, but you never forget the weight of the gloom.
posted by mule98J at 12:11 PM on June 23, 2023 [5 favorites]
anger (some would call it rage) is considered a symptom of chronic pain. I was stuck for a while living with somebody who couldn't help himself diagnosing my pain as symptomatic of my inability to deal with my anger.
They still haven't found the body.
[just kidding about that last part]
posted by philip-random at 2:34 PM on June 23, 2023 [5 favorites]
They still haven't found the body.
[just kidding about that last part]
posted by philip-random at 2:34 PM on June 23, 2023 [5 favorites]
I try and remember this when I have a flare-up and breathing hurts so much I can't stop my eyes from leaking tears and a cough or sneeze coming on is terrifying.
Cuke, you can sometimes make a sneeze go away by waiting until you're just about to sneeze and then swallowing. Usually I find it just puts the sneeze off for 30 seconds or so, but sometimes it does work. I sure hope it helps you!
posted by Ursula Hitler at 7:19 PM on June 23, 2023 [2 favorites]
Cuke, you can sometimes make a sneeze go away by waiting until you're just about to sneeze and then swallowing. Usually I find it just puts the sneeze off for 30 seconds or so, but sometimes it does work. I sure hope it helps you!
posted by Ursula Hitler at 7:19 PM on June 23, 2023 [2 favorites]
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The thing about chronic pain is that it is invisible. For most people, pain is temporary, so after a while everyone forgets. “Oh, the arm thing? Is that still going on?” my colleagues would say, half-heartedly. Friends stopped checking in.
(although to give them credit, my friends sometimes still ask about it. but as much as I appreciate it, there's only so many times you can say something to the effect of "my body is still broken and I don't know how to fix it" before you feel like a failure)
I don't have anything more insightful to say, but since this is actually related to the reason I signed up for Mefi in the first place... I just wanted to say thank you for posting it
posted by okonomichiyaki at 12:14 PM on June 22, 2023 [11 favorites]