15 ms·

How to deal with extreme physical pain (2020)

117 points by memorable 4y ago

nonameiguess 4y ago
It's such a terrible feeling. I repeatedly herniated the two lowest lumbar discs throughout my 20s and early 30s until it just finally couldn't heal any more. Too much volume was lost. It got to the point I was regularly throwing out my back and down for days from nonsense like getting out of a car and emptying the dishwasher. Finally, I threw out my back while putting underwear on one morning, and was suddenly introduced to an entirely new level of pain I didn't realize existed. It was spasms, but not like any kind of muscle spasm I had ever experienced before. They were regular and predictable. Every 30 seconds. It felt like I was being electrocuted, like someone had placed an electrode in my spine and was throwing the switch every 30 seconds. My entire body seized up. I was luckily near a bed and fell onto it, and I was just stuck there. For three days. I didn't sleep. I have no memory of what I ate or drank. For three days, every 30 seconds, an electric shock came from my spine to everywhere else and seized up my entire body. My wife, of course, wanted to take me to the hospital, but I was in too much pain to move, even if someone else was moving me, so I made her wait until the spasms stopped. Then I finally went in, got a steroid shot plus some oral prednisone pills, and eventually, two years, three surgeries, ten screws, two rods, two cages, and a whole lot of physical therapy later, I was basically functional again. I don't really remember it. I can't envision the feeling. I just remember the sheer horror and helplessness. The funny thing is, it's not even actually the worst pain I ever experienced. The worst was waking up after the double fusion, apparently before they started the morphine drip. I don't really remember this, either. It's more like a dream than a memory. My wife saw me. I couldn't see anything. I woke up and was screaming, begging the nurse to kill me, but thankfully this one was brief since I was hooked up to an IV already and she blasted me with fentanyl and I fell asleep and woke up the next time not feeling jack shit. But for maybe twenty seconds or so, I felt like you might imagine it would feel when someone just spent seven hours removing part of your spine, sawing a bone graft off your hip, and screwing a bunch of hardware into your vertebrae while pincers hold you open and your organs are all pulled out and on a table next to you. It's really weird what this does to you. It totally throws off your sense of what is normal. Like should I be in pain right now? I'm laying in a bed unable to sleep. It's a mattress but it feels like I'm laying on stone where the fusion is. My entire left leg is numb and my foot is throbbing. But it doesn't hurt at all. It barely registers as background noise. The muscles that attach there are hard as concrete because they haven't moved in seven years, and they never will move.
- TurkishPoptart 4y ago
  What a breathtaking story. Good god. How is your back now? Is there just a "flat" area between the vertebrea, under the skin?
- ok_dad 4y ago
  This scared me because I hurt my back really bad a few years ago in an accident, and now I get occasional back issues like you describe, but never this bad: > I threw out my back while putting underwear on one morning I laughed at the ridiculousness of this when I first read it but now I’m horrified after reading the rest. I hope you’re doing okay, and I hope for my sake I never experience that.
block_dagger 4y ago
I have a pinched nerve that causes sometimes pain and sometimes numbness in my right arm. Some months are better than others. I have sympathy for the author. We need better assistive software/hardware and much more research. Good luck and vibes.
- bckr 4y ago
  have you gotten physical therapy for it? I was in the same boat and doing much better after a lot of PT.
  - alyandon 4y ago
    I have a similar problem and just doing various stretching exercises daily with my arms paid off within a few weeks and made a huge difference in my quality of life.
    - bckr 4y ago
      Yeah, you can definitely fix it yourself. I really appreciated having professional input to make sure I wasn't going to hurt myself more. How did you figure out what to do?
      - alyandon 4y ago
        My ex wife had a very similar problem and those were the exercises her physical therapist had her do. I figured I'd try them out and see if they helped me before going to the doctor about it.
midislack 4y ago
One mistake is getting a surgery "just to see." Then you get your REAL pain.
- polar8 4y ago
  What do you mean?
- taneq 4y ago
  People... do that? Have unneeded surgery just for curiosity's sake? There are far easier, cheaper and safer ways to entertain oneself.
  - sroussey 4y ago
    Doctors if baffled by a condition will want to do a surgery eventually, because they want to literally “see” what’s going on. When they did that to my sister they discovers that her arteries were fine but capillaries had died off and the muscle was dead, so cutting into it caused a new cascade of issues. Diabetes can be awful. She did not survive long after that.
  - eurasiantiger 4y ago
    It’s almost like for-profit healthcare created incentives to perform unnecessary high-risk operations.
    - bckr 4y ago
      Don't think so. People often can't get treatments that they need because insurance won't cover it.
      - eurasiantiger 4y ago
        Who exactly are the people you’re referring to, and how much of total hospital visits are by those people? (e.g. locally, nationally, globally)
phnofive 4y ago
Previously: https://news.ycombinator.com/item?id=24947498 https://news.ycombinator.com/item?id=24947498 Oct 2020, 335 comments
ehnto 4y ago
I dealt with a large amount of constant pain for my entire childhood, and ongoing but to a lesser extent. It was essentially persistent pain with spikes of immense pain, all over my body. My doctor very early on told my parents not to give me opioids, as they would ruin my development, become ineffective and I would end up addicted. So my relationship with pain is very skewed, I do essentially what the author describes, observe it but I do not always experience it, especially for stuff I have felt before. One of my less healthy coping mechanisms when I was young was to make the pain worse, so that the relief was comparatively comfortable. It has made navigating unrelated health issues a bit more challenging, as I can't relate to pain cues very well, and I tend to refuse pain relief meds in emergency situations which is not always the right choice (broken bones fine, final stages of appendicitis, probably want the meds) One thing that I have sort of always recognized though is that the way others experience pain, emotional or physical, is unrelated to what I have been through, which I think everyone could realise. Just because I have felt worse does not mean someone elses pain is not every bit as impactful to them.
- ramraj07 4y ago
  I have led a life of almost no pain. The most painful experience in my life was me getting local anesthetic injection near my lips for a minor skin procedure. That’s it. Yet in college I was friends with a person who progressed in ankolysing spondilitis from our best soccer player to someone who couldn’t walk or turn anymore. He was and decades later continues to be the most cheerful person I’ve ever known. He is also in constant pain all the time. One time when we were hanging out in class, I, in all my blissful ignorant glory, patted him in his back saying hello. He curled up into a ball in pain. We all knew he was always in constant unimaginable pain and he would smile and talk like everyone else through that, but for HIM to curl up, I couldn’t imagine the pain he went through. Perhaps that’s what level 11 in the pain machine in Princess Bride went to? As he was curled up in pain I retreated to a corner with a wide stare and without motion with just uncontrollable tears for what I’ve done. He then came to console ME! Imagine that. I haven’t spoken to him in a while, but last I hear he has a beautiful family and is happy with them. From what I surmise at the same levels of pain as before if not worse. I cannot imagine the life of such people, and I sincerely wish we find a way to help them. I also wake up many days reminded of how lucky I am to not have anything like this. In some ways a painless life in a middle class family today is far more blessed than what these billionaires have. I just wish I can do something to help them out in this process. I and others have much to learn from folks like you and him for sure!
TrackerFF 4y ago
During my worst gout flareups, breathing techniques helped a bit. There’s not much one can do when the pain is brilliant - especially if you don’t have drugs at hand, but very controlled breathing seemed to help. Also helped me through a infected root canal. Anesthesia didn’t work, it was absolute agony. But focus and breathing helped.
- x86hacker1010 4y ago
  Do you take colchicine?
- extragood 4y ago
  I've also found some relief with breathing techniques for Crohn's flare ups. Other than that, I can only take acetaminophen (which does next to nothing) and not eat for a couple days while I wait it out.
- jvvw 4y ago
  The second time I gave birth, the midwife was amazing at coaching me with breathing and it made an incredible difference. More than the gas and air!
specialist 4y ago
I enrolled in Swedish Hospital's Pain Services in Nov 2021. Four weeks, 3 days a week, 8 hours a day. Got a brain dump of all the latest science as well as tutoring on pain mgmt skills. It helped, reducing my daily perceived pain from 8 or 9 down to 6 or 7 (with occasional spikes). And I continue to improve (very slowly). Disregard their web site. The team doesn't control their own web presence. Typical, right? Their actual program is far more involved and innovative than what is shown. I've been coping with chronic pain my entire adult life. I thought I had a pretty good handle on the latest science and techniques. I was surprised by how much new stuff I learned. https://www.swedish.org/services/pain-services https://www.swedish.org/services/pain-services
pmarreck 4y ago
This is seemingly another disease that seems to be influenced by sugar intake (due to the association with diabetes) and inflammatory processes of the body going haywire.
noobermin 4y ago
Not chronic pain like the author but I had many blood clots stuck in my lungs a few months ago. This lead to severe pleuritic chest pain, the worst pain I ever felt in my life. In the A&E, I usually have a high tolerance to pain, so I was up and talking to doctors and nurses fine and calmly about the ache, but once the pain ramped up to a high point with involuntary spasms that just made it worse, I just immediately turned from calm but uncomfortable to loud, screaming while rocking back and forth and pleading with my body to stop hurting me. Really, only an injection of tramadol did the trick. After I was admitted, they lowered the dose, so the pain came back but I guess the drug just changed my reaction to it, like it hurt the same but i was too stoned to care I guess. Really only treatment made the difference permanently. Pain killers (paracetamol that is tylenol) after being discharged reduced the pain that would come back from time to time at least to the point I could bear it while my body healed.
blueatlas 4y ago
Good read and advice. Scott, if you write about this in the future, please don't say "at least I'm not dying of X". People reading this might be, and you are basically saying "well, at least its not that". Yes, people with cancer, and dying of cancer, read HN, particularly when the subject is pain.
- jazzabeanie 4y ago
  There’s always some way in which someone’s situation could be worse. Anyone can do that exercise.
- elvis10ten 4y ago
  I just wanted to say I love the way you packaged this feedback. Amazing.
- whycombinetor 4y ago
  I read that line as deference to those who are dying of cancer and recognition that their plight is worse than his. I don't see how that's disrespectful to those dying of cancer or would make them uncomfortable.
gcbirzan 4y ago
I am literally in the hospital, waiting to be taken to the operating room for the same type of surgery, except on my ankle. I am not encouraged by this. The doctor said it will be a painful recovery, but they said that when I was doing physio to recover movement in my knee, and it wasn't so bad.
- MandieD 4y ago
  Good luck - on subway after getting the pins out of my finger. Extremely local anesthesia hurt WAY more than getting my whole arm numbed when they put the pins in. Feel free to swear a lot.
  - gcbirzan 4y ago
    I had spinal anaesthesia, which is painful, but not very much (however, it does involve a lot of those stupid conversations: don't move! how can I not move, you're sticking a needle in my back, I'll fucking flinch). I've had many local anaesthesias and I don't remember any hurting more than they should, like any shot you get, except it lasts a few seconds and then it's just the weird pressure sensation as they keep pushing whatever the anaesthetic is in. I have two plates and probably 20 screws next to my knee that I should remove at some point, but I wanted to get this one out of the way... Were they bothering you, btw? Anyway, surgery wasn't bad, they even gave me a nerve block that lasted 10 more hours, so about 8 hours of no pain. Now it's not so bad, except if I press on my Achilles' tendon (which they cut to extend it), which sucks, and walking is very hard since blood pools in the foot and it starts hurting after 5ish minutes. All in all, it's painful, but with very low doses of tramadol (and huge of paracetamol), it's bearable.
pfortuny 4y ago
I do not know either the OP or the author but thanks for sharing this and to all of you who have done the same in the comments.
nimmen 4y ago
It is surely not pleasant experience, I have diabetes and I had frozen shoulder on both sides, almost consecutively. Probably been 4-5 years in total, pain is very annoying - I'm not talking about not being able to wipe your arse, I'm talking unable to sleep, because of pain, in any position. The only good news is, from what I was told, it does not reoccur. It is strange experience to have such intensity pain for such prolonged periods. Probably nastiest for me, was experience of being handicapped, even such simple thing as severely restricted shoulder movements - bring MAJOR impact on everyday life and functions. Oh yeah, and drugs don't work, well at least most of them...
aszantu 4y ago
if you haven't tried, look into fasting(just water for a few days, maybe teas-but those can be problematic sometimes - I get heartburn from tea), if the pain subsides/lessens within a week, there might be something in the diet that causes it. In that case I'd suggest to try some elimination diet. If u can't fast, try less than 500 ckal/day
- MandieD 4y ago
  Might be an ok suggestion for some (after talking to their doctor!), but a particularly dangerous one for anyone who, like the author, is a Type 1 diabetic, or other person with a tricky metabolism.
  - aszantu 4y ago
    peter attia has a podcast about that, one of these talked about how fructose and salt are connected. So yes, ppl who already have a metabolic problem are tricky, hope they get well soon
lqet 4y ago
I know I can't deal with it, and I have tremendous respect for anyone who can. A few years ago, I had a kidney stone and a renal colic [0]. The pain was indescribable. It was surreal. A shrill, hyperbright, screeching, completely hysteric pain. I was in constant agitation and jumped around our apartment looking for some way out. I took the only pain killers we had (some aspirin and paracetamol), with no effect. I started to bang my head against the wall to counter the pain with a more managable pain. When the medics came, I was rolling on the floor, in tears, grapped one of them by the foot and begged for pain killers. They said they had to clear that up with the emergency room first, because they weren't sure what it was. I screamed at them that it was most likely a kidney stone (I had read about kidney stones a few years before on Wikipedia because my father had one when he was my age, and the symptoms matched 100%). They said no, they weren't sure. While they were talking with the emergency room on the phone, another wave struck me down. I almost fainted. Then I threw up on the floor and lay there, wailing, screaming, in my own vomit. The emergency room then gave them clearance to give me something strong. The second they told me that they have pain killers in the ambulance car I was up and ran down the stairs. My wife tried to hold me back because I was only wearing underwear at that point. I didn't care and basically threw her aside. The focal point of my life at that moment was to stop. That. Pain. I remember the ambulance gleaming in the night like the holy grail. I entered, lay down on the stretcher, and then they injected me something I later learned was morphine based. I remember I couldn't feel them touching me, or the needle entering, because the pain blocked out any other physical sensation. And then, almost immediately, the pain became managable, like a strong toothache. The rest of the night is a fog. The next morning, the stone had passed and I returned home. I lay in bed for 2 days completely traumatized, just staring at the wall. I never knew such physical pain was possible without losing consciousness. I now know that I cannot stand extreme pain. If I would have to endure the pain of that night for longer than 12 hours, I would kill myself. Wikipedia has a depiction of a renal colic that is pretty accurate: https://de.wikipedia.org/wiki/Nierenkolik#/media/Datei:Devils_saw_away_at_a_colic_sufferer's_abdomen._Lithograph_by_Wellcome_V0011745.jpg https://de.wikipedia.org/wiki/Nierenkolik#/media/Datei:Devil... [0] https://en.wikipedia.org/wiki/Renal_colic https://en.wikipedia.org/wiki/Renal_colic
tinglymintyfrsh 4y ago
As my grandfather said "I can't complain. Even if I did, no one would listen." My view is it burdens other people, it's boring, trivial, sympathy-seeking, and dumps problems on others they can't do anything about. It's better to be graceful than whine because the risk of competitive grievance storytelling is without end or fruitful accomplishment. There are bigger ideas, existential threats, and excessive suffering in other parts of the world like famine and summary executions. I broke T-8, my nose, and had a one-part proximal humerus fracture. It wasn't anywhere close to a "10" on the pain scale, maybe a 3.5. E.D. kept trying to push opiates and adamantly refused. A genetic test claimed I have a reduced pain perception but not convinced yet.
wheels 4y ago
So, I get migraines. Fortunately, only every couple months, and for 3-4 hours, usually. But during that time, it's curled into a ball, muttering, sometimes barfing from pain-level bad. I can suck it up and get basic things done, but I basically present as a crazy person in that time, because all of my mental energy is going into resisting the pain. I have different tricks like either accepting or rejecting the pain, or rolling around in my bed to distract myself from it. I struggle to explain to other people what that level of pain is like, and often think that while it looks horrible from the outside (and is!), I've been dealing with that level of pain on a regular basis for my whole life, and it's just somehow normalized. I guess what I'd say is it still hurts a lot, but it's not traumatic by any means anymore. I'm just used to it. I'm curious -- are there folks here who have migraines and some other experience with extreme pain? How do they compare? I was around when both of my kids were born and the description of the level of pain seemed pretty close to what I deal with multiple times a year.
- SeriousM 4y ago
  A colleague of mine had such symptoms, twice a year for a week or so (spring and autumn). He went through a lot of information and eventually found out that he had cluster headach/migraine. There is nothing that helps removing it but some techniques to cope the pain. For him, bouncing an empty plastic bottle on the head just helped endure the hardest times after so many years. I guess you would do everything as long as it helps.
fredley 4y ago
I had a testicular torsion. There was a bleed after the surgery, and I had a haematoma there for months that made the region incredibly painful during that whole time, I could not walk properly etc. The torsion itself wasn't a picnic either. This was a while ago now, and it's interesting to see what sticks in my mind. In fact the part that was most traumatic in hindsight was getting a catheter inserted after the surgery. This was by any metric not the most painful part of what I experienced, but the context under which I had it done - scared that something was broken, alone, highly fearful - led to me being in a flat panic, very stressed, and this caused that experience in particular to encode as traumatic. I worry about how I will cope the next time I need one, it seems an inevitability one day. One thing I try and practice is the Buddhist teaching: suffering does not come from pain, but from attachment to it. My personal experience seems to reinforce that. You can uncross your legs now, sorry.
rpaddock 4y ago
Please watch the documentary "Pain Warriors" to see what is happening to people with Chronic Pain and the other side of the "Opioid Epidemic". "Pain Warriors" is NOT a warm and fuzzy movie to watch. It is five stories, two being suicides one of which was my late wife Karen. It is also a good example of how today's Medical Establishment fails people. In Karen's case each doctor did what they thought was in her best interests, and I have no issue with any of them. Yet the system as a whole killed her. "Pain Warriors" can be watched for free on Amazon Prime, and TubiTV. It is also on iTunes, Google Play and Veimo for international viewers. I receive no remuneration from the documentary. I'm simply trying to raise awareness of obscure conditions like Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks. As well as raise awareness of how broken the Medical Establishment can be if you have an obscure condition or Rare Disase.
foooobaba 4y ago
When I was growing up I was was frequently subjugated to violence on a daily basis, over time I learned to zone out of reality, and remind myself that the bruising and cuts would heal and after some time (probably before I reached kindergarten) it just became instant, and I didn’t feel the pain the same way anymore, like I can feel pain, but isn’t something I remember and isn’t in my conscious awareness, like it’s happening outside my immediate focus in a way. Getting over the emotional trauma, on the other hand was a much more difficult thing and took over 15+ years to get over that, but thats a whole different topic. But, even then, I am sometimes frustrated with how difficult it is for me to do creative work when dealing with certain types of pain like headaches, toothaches, fatigue. I could always do basic physical labor while in pain, even headache/toothache/fatigue, but trying to learn anything complicated or do intellectual work was harder. I was decent at endurance running, I think this was somehow related, I would basically zone out how my legs and lungs are burning, and how tired I felt. However, unless I was extremely motivated such that then I could sort of hold onto the task in my mind and zone everything else out, it was next to impossible for me to do focus on it. For example stuff that is mundane, boring, tedious or something I don’t care about, it was very hard for me to get anything done while being in pain, for example I recently got 2nd degree burns all over my face and tore my rotor cuff again (not simultaneously), I was able zone out the pain, but it was hard for me to concentrate on work, or school, until the pressure of getting the work done became so high that I felt it was important to do it, and then I could push thru and get it done, but otherwise I wasn’t able to. I guess it’s like I was in some sort of survival mode, and if certain work didn’t feel needed for survival I wouldn’t be able to concentrate on it. I always wonder how people with chronic pain can even get anything intellectually done, based on reading this, it wasn’t clear to me, but I guess it seems like he is holding a strong motivation to face the pain and succeed despite the pain, which does make sense.
- barrenko 4y ago
  Oh this is so true.
- foooobaba 4y ago
  He talks about sort of observing the pain, and doing breathing exercises, which I guess sometimes I would do to, maybe it is some way to isolate the pain from other senses, then when you feel it, you can sort of categorize those senses away as noise, and zone it out. I remember practicing this once when I was teenager as an exercise. I read this in some book about becoming a ninja, (I don’t remember the title now). I went outside in the winter barefooted and stood still in the snow and as it started to make my feet hurt I just kept allowing myself to feel the pain completely and while doing a breathing exercise. After that I could run outside in the snow barefooted without feeling it so much, impressing my friends, lol. It probably wasn’t a great idea, given the risk of frostbite, but it seems similar to one of the methods of allowing yourself to feel it, instead of the cognitive dissidence.
lakomen 4y ago
So... how DO you deal with it? My mom's hip hurts progressively more. It's destroying her. If anyone knows a remedy, not ibuprofen, I'd be glad to hear it. Internet and doctors say there's nothing that can be done to cure it, which I refuse to believe. There must be something she can rub into the hip or drink or eat. Her father had Reuma and he had a field of nettle im his backyard. He sat there for hours every day covering and beating his body with nettles. He got cured. There must be a natural remedy. Doctors and the pharma industry have no interest im curing it. It's a source of income. So long story short, if anyone knows anything about hip pain, a remedy, please share.
- EmbeddedHash 4y ago
  In my opinion, the best way to treat something is to first understand the why before attempting to fix it with the what. Try and have her understand why her hip is hurting. Is it pain radiating from her bone(s), or from the ligaments, tendons, muscles, etc in the area. A couple things I would suggest she focus on. 1. Daily exercise, such as walking at least 1 hour a day, is crucial. It increases blood flow to the lower body, lubricates joints, etc. 2. Another crucial and very neglected form of activity in western society is stretching/yoga. Make sure she is stretching daily, preferably after doing some sort of exercise like walking so that the muscles are warm and more malleable.
- BizarroLand 4y ago
  It might be worth looking into peptide therapy. It's pretty expensive and doesn't have a guarantee of working, but it is an option that most doctors aren't aware of so if the medical establishment has let you down it may be worth considering. BPC-157 and TB-4 injections will boost your body's normal healing, and CJC-1295 and ipamorelin will increase the amount of human growth hormone in your body and use that to build up and repair your musculoskeletal system. If you decide to do this, find a reputable company as there are many fly by night companies that will sell you baking soda (or worse) for whatever they can get from you and disappear.
  - dewyatt 4y ago
    BPC-157 is the only thing that helped me with my debilitating tendinitis. It was definitely worth it for me, nothing else worked.
Vaslo 4y ago
I have a friend who has dealt with chronic pancreatitis for 2 decades. He just recently finished a medical degree and is finally getting back to work. He needed constant pain medication when he would get flare ups to the point that doctors thought he was opioid shopping. I just always think of the old “there but for the grace of God go I” and hope they have what they need to get through it.

117 points by memorable 4y ago

It's such a terrible feeling. I repeatedly herniated the two lowest lumbar discs throughout my 20s and early 30s until it just finally couldn't heal any more. Too much volume was lost. It got to the point I was regularly throwing out my back and down for days from nonsense like getting out of a car and emptying the dishwasher. Finally, I threw out my back while putting underwear on one morning, and was suddenly introduced to an entirely new level of pain I didn't realize existed. It was spasms, but not like any kind of muscle spasm I had ever experienced before. They were regular and predictable. Every 30 seconds. It felt like I was being electrocuted, like someone had placed an electrode in my spine and was throwing the switch every 30 seconds. My entire body seized up. I was luckily near a bed and fell onto it, and I was just stuck there. For three days. I didn't sleep. I have no memory of what I ate or drank. For three days, every 30 seconds, an electric shock came from my spine to everywhere else and seized up my entire body. My wife, of course, wanted to take me to the hospital, but I was in too much pain to move, even if someone else was moving me, so I made her wait until the spasms stopped. Then I finally went in, got a steroid shot plus some oral prednisone pills, and eventually, two years, three surgeries, ten screws, two rods, two cages, and a whole lot of physical therapy later, I was basically functional again. I don't really remember it. I can't envision the feeling. I just remember the sheer horror and helplessness. The funny thing is, it's not even actually the worst pain I ever experienced. The worst was waking up after the double fusion, apparently before they started the morphine drip. I don't really remember this, either. It's more like a dream than a memory. My wife saw me. I couldn't see anything. I woke up and was screaming, begging the nurse to kill me, but thankfully this one was brief since I was hooked up to an IV already and she blasted me with fentanyl and I fell asleep and woke up the next time not feeling jack shit. But for maybe twenty seconds or so, I felt like you might imagine it would feel when someone just spent seven hours removing part of your spine, sawing a bone graft off your hip, and screwing a bunch of hardware into your vertebrae while pincers hold you open and your organs are all pulled out and on a table next to you. It's really weird what this does to you. It totally throws off your sense of what is normal. Like should I be in pain right now? I'm laying in a bed unable to sleep. It's a mattress but it feels like I'm laying on stone where the fusion is. My entire left leg is numb and my foot is throbbing. But it doesn't hurt at all. It barely registers as background noise. The muscles that attach there are hard as concrete because they haven't moved in seven years, and they never will move.

TurkishPoptart 4y ago
What a breathtaking story. Good god. How is your back now? Is there just a "flat" area between the vertebrea, under the skin?
ok_dad 4y ago
This scared me because I hurt my back really bad a few years ago in an accident, and now I get occasional back issues like you describe, but never this bad: > I threw out my back while putting underwear on one morning I laughed at the ridiculousness of this when I first read it but now I’m horrified after reading the rest. I hope you’re doing okay, and I hope for my sake I never experience that.

block_dagger 4y ago

I have a pinched nerve that causes sometimes pain and sometimes numbness in my right arm. Some months are better than others. I have sympathy for the author. We need better assistive software/hardware and much more research. Good luck and vibes.

bckr 4y ago
have you gotten physical therapy for it? I was in the same boat and doing much better after a lot of PT.
- alyandon 4y ago
  I have a similar problem and just doing various stretching exercises daily with my arms paid off within a few weeks and made a huge difference in my quality of life.
  - bckr 4y ago
    Yeah, you can definitely fix it yourself. I really appreciated having professional input to make sure I wasn't going to hurt myself more. How did you figure out what to do?
    - alyandon 4y ago
      My ex wife had a very similar problem and those were the exercises her physical therapist had her do. I figured I'd try them out and see if they helped me before going to the doctor about it.

midislack 4y ago

One mistake is getting a surgery "just to see." Then you get your REAL pain.

polar8 4y ago
What do you mean?
taneq 4y ago
People... do that? Have unneeded surgery just for curiosity's sake? There are far easier, cheaper and safer ways to entertain oneself.
- sroussey 4y ago
  Doctors if baffled by a condition will want to do a surgery eventually, because they want to literally “see” what’s going on. When they did that to my sister they discovers that her arteries were fine but capillaries had died off and the muscle was dead, so cutting into it caused a new cascade of issues. Diabetes can be awful. She did not survive long after that.
- eurasiantiger 4y ago
  It’s almost like for-profit healthcare created incentives to perform unnecessary high-risk operations.
  - bckr 4y ago
    Don't think so. People often can't get treatments that they need because insurance won't cover it.
    - eurasiantiger 4y ago
      Who exactly are the people you’re referring to, and how much of total hospital visits are by those people? (e.g. locally, nationally, globally)

phnofive 4y ago

Previously: https://news.ycombinator.com/item?id=24947498 https://news.ycombinator.com/item?id=24947498 Oct 2020, 335 comments

ehnto 4y ago

I dealt with a large amount of constant pain for my entire childhood, and ongoing but to a lesser extent. It was essentially persistent pain with spikes of immense pain, all over my body. My doctor very early on told my parents not to give me opioids, as they would ruin my development, become ineffective and I would end up addicted. So my relationship with pain is very skewed, I do essentially what the author describes, observe it but I do not always experience it, especially for stuff I have felt before. One of my less healthy coping mechanisms when I was young was to make the pain worse, so that the relief was comparatively comfortable. It has made navigating unrelated health issues a bit more challenging, as I can't relate to pain cues very well, and I tend to refuse pain relief meds in emergency situations which is not always the right choice (broken bones fine, final stages of appendicitis, probably want the meds) One thing that I have sort of always recognized though is that the way others experience pain, emotional or physical, is unrelated to what I have been through, which I think everyone could realise. Just because I have felt worse does not mean someone elses pain is not every bit as impactful to them.

ramraj07 4y ago
I have led a life of almost no pain. The most painful experience in my life was me getting local anesthetic injection near my lips for a minor skin procedure. That’s it. Yet in college I was friends with a person who progressed in ankolysing spondilitis from our best soccer player to someone who couldn’t walk or turn anymore. He was and decades later continues to be the most cheerful person I’ve ever known. He is also in constant pain all the time. One time when we were hanging out in class, I, in all my blissful ignorant glory, patted him in his back saying hello. He curled up into a ball in pain. We all knew he was always in constant unimaginable pain and he would smile and talk like everyone else through that, but for HIM to curl up, I couldn’t imagine the pain he went through. Perhaps that’s what level 11 in the pain machine in Princess Bride went to? As he was curled up in pain I retreated to a corner with a wide stare and without motion with just uncontrollable tears for what I’ve done. He then came to console ME! Imagine that. I haven’t spoken to him in a while, but last I hear he has a beautiful family and is happy with them. From what I surmise at the same levels of pain as before if not worse. I cannot imagine the life of such people, and I sincerely wish we find a way to help them. I also wake up many days reminded of how lucky I am to not have anything like this. In some ways a painless life in a middle class family today is far more blessed than what these billionaires have. I just wish I can do something to help them out in this process. I and others have much to learn from folks like you and him for sure!

TrackerFF 4y ago

During my worst gout flareups, breathing techniques helped a bit. There’s not much one can do when the pain is brilliant - especially if you don’t have drugs at hand, but very controlled breathing seemed to help. Also helped me through a infected root canal. Anesthesia didn’t work, it was absolute agony. But focus and breathing helped.

x86hacker1010 4y ago
Do you take colchicine?
extragood 4y ago
I've also found some relief with breathing techniques for Crohn's flare ups. Other than that, I can only take acetaminophen (which does next to nothing) and not eat for a couple days while I wait it out.
jvvw 4y ago
The second time I gave birth, the midwife was amazing at coaching me with breathing and it made an incredible difference. More than the gas and air!

specialist 4y ago

I enrolled in Swedish Hospital's Pain Services in Nov 2021. Four weeks, 3 days a week, 8 hours a day. Got a brain dump of all the latest science as well as tutoring on pain mgmt skills. It helped, reducing my daily perceived pain from 8 or 9 down to 6 or 7 (with occasional spikes). And I continue to improve (very slowly). Disregard their web site. The team doesn't control their own web presence. Typical, right? Their actual program is far more involved and innovative than what is shown. I've been coping with chronic pain my entire adult life. I thought I had a pretty good handle on the latest science and techniques. I was surprised by how much new stuff I learned. https://www.swedish.org/services/pain-services https://www.swedish.org/services/pain-services

pmarreck 4y ago

This is seemingly another disease that seems to be influenced by sugar intake (due to the association with diabetes) and inflammatory processes of the body going haywire.

noobermin 4y ago

Not chronic pain like the author but I had many blood clots stuck in my lungs a few months ago. This lead to severe pleuritic chest pain, the worst pain I ever felt in my life. In the A&E, I usually have a high tolerance to pain, so I was up and talking to doctors and nurses fine and calmly about the ache, but once the pain ramped up to a high point with involuntary spasms that just made it worse, I just immediately turned from calm but uncomfortable to loud, screaming while rocking back and forth and pleading with my body to stop hurting me. Really, only an injection of tramadol did the trick. After I was admitted, they lowered the dose, so the pain came back but I guess the drug just changed my reaction to it, like it hurt the same but i was too stoned to care I guess. Really only treatment made the difference permanently. Pain killers (paracetamol that is tylenol) after being discharged reduced the pain that would come back from time to time at least to the point I could bear it while my body healed.

blueatlas 4y ago

Good read and advice. Scott, if you write about this in the future, please don't say "at least I'm not dying of X". People reading this might be, and you are basically saying "well, at least its not that". Yes, people with cancer, and dying of cancer, read HN, particularly when the subject is pain.

jazzabeanie 4y ago
There’s always some way in which someone’s situation could be worse. Anyone can do that exercise.
elvis10ten 4y ago
I just wanted to say I love the way you packaged this feedback. Amazing.
whycombinetor 4y ago
I read that line as deference to those who are dying of cancer and recognition that their plight is worse than his. I don't see how that's disrespectful to those dying of cancer or would make them uncomfortable.

gcbirzan 4y ago

I am literally in the hospital, waiting to be taken to the operating room for the same type of surgery, except on my ankle. I am not encouraged by this. The doctor said it will be a painful recovery, but they said that when I was doing physio to recover movement in my knee, and it wasn't so bad.

MandieD 4y ago
Good luck - on subway after getting the pins out of my finger. Extremely local anesthesia hurt WAY more than getting my whole arm numbed when they put the pins in. Feel free to swear a lot.
- gcbirzan 4y ago
  I had spinal anaesthesia, which is painful, but not very much (however, it does involve a lot of those stupid conversations: don't move! how can I not move, you're sticking a needle in my back, I'll fucking flinch). I've had many local anaesthesias and I don't remember any hurting more than they should, like any shot you get, except it lasts a few seconds and then it's just the weird pressure sensation as they keep pushing whatever the anaesthetic is in. I have two plates and probably 20 screws next to my knee that I should remove at some point, but I wanted to get this one out of the way... Were they bothering you, btw? Anyway, surgery wasn't bad, they even gave me a nerve block that lasted 10 more hours, so about 8 hours of no pain. Now it's not so bad, except if I press on my Achilles' tendon (which they cut to extend it), which sucks, and walking is very hard since blood pools in the foot and it starts hurting after 5ish minutes. All in all, it's painful, but with very low doses of tramadol (and huge of paracetamol), it's bearable.

pfortuny 4y ago

I do not know either the OP or the author but thanks for sharing this and to all of you who have done the same in the comments.

nimmen 4y ago

It is surely not pleasant experience, I have diabetes and I had frozen shoulder on both sides, almost consecutively. Probably been 4-5 years in total, pain is very annoying - I'm not talking about not being able to wipe your arse, I'm talking unable to sleep, because of pain, in any position. The only good news is, from what I was told, it does not reoccur. It is strange experience to have such intensity pain for such prolonged periods. Probably nastiest for me, was experience of being handicapped, even such simple thing as severely restricted shoulder movements - bring MAJOR impact on everyday life and functions. Oh yeah, and drugs don't work, well at least most of them...

aszantu 4y ago

if you haven't tried, look into fasting(just water for a few days, maybe teas-but those can be problematic sometimes - I get heartburn from tea), if the pain subsides/lessens within a week, there might be something in the diet that causes it. In that case I'd suggest to try some elimination diet. If u can't fast, try less than 500 ckal/day

MandieD 4y ago
Might be an ok suggestion for some (after talking to their doctor!), but a particularly dangerous one for anyone who, like the author, is a Type 1 diabetic, or other person with a tricky metabolism.
- aszantu 4y ago
  peter attia has a podcast about that, one of these talked about how fructose and salt are connected. So yes, ppl who already have a metabolic problem are tricky, hope they get well soon

lqet 4y ago

I know I can't deal with it, and I have tremendous respect for anyone who can. A few years ago, I had a kidney stone and a renal colic [0]. The pain was indescribable. It was surreal. A shrill, hyperbright, screeching, completely hysteric pain. I was in constant agitation and jumped around our apartment looking for some way out. I took the only pain killers we had (some aspirin and paracetamol), with no effect. I started to bang my head against the wall to counter the pain with a more managable pain. When the medics came, I was rolling on the floor, in tears, grapped one of them by the foot and begged for pain killers. They said they had to clear that up with the emergency room first, because they weren't sure what it was. I screamed at them that it was most likely a kidney stone (I had read about kidney stones a few years before on Wikipedia because my father had one when he was my age, and the symptoms matched 100%). They said no, they weren't sure. While they were talking with the emergency room on the phone, another wave struck me down. I almost fainted. Then I threw up on the floor and lay there, wailing, screaming, in my own vomit. The emergency room then gave them clearance to give me something strong. The second they told me that they have pain killers in the ambulance car I was up and ran down the stairs. My wife tried to hold me back because I was only wearing underwear at that point. I didn't care and basically threw her aside. The focal point of my life at that moment was to stop. That. Pain. I remember the ambulance gleaming in the night like the holy grail. I entered, lay down on the stretcher, and then they injected me something I later learned was morphine based. I remember I couldn't feel them touching me, or the needle entering, because the pain blocked out any other physical sensation. And then, almost immediately, the pain became managable, like a strong toothache. The rest of the night is a fog. The next morning, the stone had passed and I returned home. I lay in bed for 2 days completely traumatized, just staring at the wall. I never knew such physical pain was possible without losing consciousness. I now know that I cannot stand extreme pain. If I would have to endure the pain of that night for longer than 12 hours, I would kill myself. Wikipedia has a depiction of a renal colic that is pretty accurate: https://de.wikipedia.org/wiki/Nierenkolik#/media/Datei:Devils_saw_away_at_a_colic_sufferer's_abdomen._Lithograph_by_Wellcome_V0011745.jpg https://de.wikipedia.org/wiki/Nierenkolik#/media/Datei:Devil... [0] https://en.wikipedia.org/wiki/Renal_colic https://en.wikipedia.org/wiki/Renal_colic

tinglymintyfrsh 4y ago

As my grandfather said "I can't complain. Even if I did, no one would listen." My view is it burdens other people, it's boring, trivial, sympathy-seeking, and dumps problems on others they can't do anything about. It's better to be graceful than whine because the risk of competitive grievance storytelling is without end or fruitful accomplishment. There are bigger ideas, existential threats, and excessive suffering in other parts of the world like famine and summary executions. I broke T-8, my nose, and had a one-part proximal humerus fracture. It wasn't anywhere close to a "10" on the pain scale, maybe a 3.5. E.D. kept trying to push opiates and adamantly refused. A genetic test claimed I have a reduced pain perception but not convinced yet.

wheels 4y ago

So, I get migraines. Fortunately, only every couple months, and for 3-4 hours, usually. But during that time, it's curled into a ball, muttering, sometimes barfing from pain-level bad. I can suck it up and get basic things done, but I basically present as a crazy person in that time, because all of my mental energy is going into resisting the pain. I have different tricks like either accepting or rejecting the pain, or rolling around in my bed to distract myself from it. I struggle to explain to other people what that level of pain is like, and often think that while it looks horrible from the outside (and is!), I've been dealing with that level of pain on a regular basis for my whole life, and it's just somehow normalized. I guess what I'd say is it still hurts a lot, but it's not traumatic by any means anymore. I'm just used to it. I'm curious -- are there folks here who have migraines and some other experience with extreme pain? How do they compare? I was around when both of my kids were born and the description of the level of pain seemed pretty close to what I deal with multiple times a year.

SeriousM 4y ago
A colleague of mine had such symptoms, twice a year for a week or so (spring and autumn). He went through a lot of information and eventually found out that he had cluster headach/migraine. There is nothing that helps removing it but some techniques to cope the pain. For him, bouncing an empty plastic bottle on the head just helped endure the hardest times after so many years. I guess you would do everything as long as it helps.

fredley 4y ago

I had a testicular torsion. There was a bleed after the surgery, and I had a haematoma there for months that made the region incredibly painful during that whole time, I could not walk properly etc. The torsion itself wasn't a picnic either. This was a while ago now, and it's interesting to see what sticks in my mind. In fact the part that was most traumatic in hindsight was getting a catheter inserted after the surgery. This was by any metric not the most painful part of what I experienced, but the context under which I had it done - scared that something was broken, alone, highly fearful - led to me being in a flat panic, very stressed, and this caused that experience in particular to encode as traumatic. I worry about how I will cope the next time I need one, it seems an inevitability one day. One thing I try and practice is the Buddhist teaching: suffering does not come from pain, but from attachment to it. My personal experience seems to reinforce that. You can uncross your legs now, sorry.

rpaddock 4y ago

Please watch the documentary "Pain Warriors" to see what is happening to people with Chronic Pain and the other side of the "Opioid Epidemic". "Pain Warriors" is NOT a warm and fuzzy movie to watch. It is five stories, two being suicides one of which was my late wife Karen. It is also a good example of how today's Medical Establishment fails people. In Karen's case each doctor did what they thought was in her best interests, and I have no issue with any of them. Yet the system as a whole killed her. "Pain Warriors" can be watched for free on Amazon Prime, and TubiTV. It is also on iTunes, Google Play and Veimo for international viewers. I receive no remuneration from the documentary. I'm simply trying to raise awareness of obscure conditions like Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks. As well as raise awareness of how broken the Medical Establishment can be if you have an obscure condition or Rare Disase.

foooobaba 4y ago

When I was growing up I was was frequently subjugated to violence on a daily basis, over time I learned to zone out of reality, and remind myself that the bruising and cuts would heal and after some time (probably before I reached kindergarten) it just became instant, and I didn’t feel the pain the same way anymore, like I can feel pain, but isn’t something I remember and isn’t in my conscious awareness, like it’s happening outside my immediate focus in a way. Getting over the emotional trauma, on the other hand was a much more difficult thing and took over 15+ years to get over that, but thats a whole different topic. But, even then, I am sometimes frustrated with how difficult it is for me to do creative work when dealing with certain types of pain like headaches, toothaches, fatigue. I could always do basic physical labor while in pain, even headache/toothache/fatigue, but trying to learn anything complicated or do intellectual work was harder. I was decent at endurance running, I think this was somehow related, I would basically zone out how my legs and lungs are burning, and how tired I felt. However, unless I was extremely motivated such that then I could sort of hold onto the task in my mind and zone everything else out, it was next to impossible for me to do focus on it. For example stuff that is mundane, boring, tedious or something I don’t care about, it was very hard for me to get anything done while being in pain, for example I recently got 2nd degree burns all over my face and tore my rotor cuff again (not simultaneously), I was able zone out the pain, but it was hard for me to concentrate on work, or school, until the pressure of getting the work done became so high that I felt it was important to do it, and then I could push thru and get it done, but otherwise I wasn’t able to. I guess it’s like I was in some sort of survival mode, and if certain work didn’t feel needed for survival I wouldn’t be able to concentrate on it. I always wonder how people with chronic pain can even get anything intellectually done, based on reading this, it wasn’t clear to me, but I guess it seems like he is holding a strong motivation to face the pain and succeed despite the pain, which does make sense.

barrenko 4y ago
Oh this is so true.
foooobaba 4y ago
He talks about sort of observing the pain, and doing breathing exercises, which I guess sometimes I would do to, maybe it is some way to isolate the pain from other senses, then when you feel it, you can sort of categorize those senses away as noise, and zone it out. I remember practicing this once when I was teenager as an exercise. I read this in some book about becoming a ninja, (I don’t remember the title now). I went outside in the winter barefooted and stood still in the snow and as it started to make my feet hurt I just kept allowing myself to feel the pain completely and while doing a breathing exercise. After that I could run outside in the snow barefooted without feeling it so much, impressing my friends, lol. It probably wasn’t a great idea, given the risk of frostbite, but it seems similar to one of the methods of allowing yourself to feel it, instead of the cognitive dissidence.

lakomen 4y ago

So... how DO you deal with it? My mom's hip hurts progressively more. It's destroying her. If anyone knows a remedy, not ibuprofen, I'd be glad to hear it. Internet and doctors say there's nothing that can be done to cure it, which I refuse to believe. There must be something she can rub into the hip or drink or eat. Her father had Reuma and he had a field of nettle im his backyard. He sat there for hours every day covering and beating his body with nettles. He got cured. There must be a natural remedy. Doctors and the pharma industry have no interest im curing it. It's a source of income. So long story short, if anyone knows anything about hip pain, a remedy, please share.

EmbeddedHash 4y ago
In my opinion, the best way to treat something is to first understand the why before attempting to fix it with the what. Try and have her understand why her hip is hurting. Is it pain radiating from her bone(s), or from the ligaments, tendons, muscles, etc in the area. A couple things I would suggest she focus on. 1. Daily exercise, such as walking at least 1 hour a day, is crucial. It increases blood flow to the lower body, lubricates joints, etc. 2. Another crucial and very neglected form of activity in western society is stretching/yoga. Make sure she is stretching daily, preferably after doing some sort of exercise like walking so that the muscles are warm and more malleable.
BizarroLand 4y ago
It might be worth looking into peptide therapy. It's pretty expensive and doesn't have a guarantee of working, but it is an option that most doctors aren't aware of so if the medical establishment has let you down it may be worth considering. BPC-157 and TB-4 injections will boost your body's normal healing, and CJC-1295 and ipamorelin will increase the amount of human growth hormone in your body and use that to build up and repair your musculoskeletal system. If you decide to do this, find a reputable company as there are many fly by night companies that will sell you baking soda (or worse) for whatever they can get from you and disappear.
- dewyatt 4y ago
  BPC-157 is the only thing that helped me with my debilitating tendinitis. It was definitely worth it for me, nothing else worked.

Vaslo 4y ago

I have a friend who has dealt with chronic pancreatitis for 2 decades. He just recently finished a medical degree and is finally getting back to work. He needed constant pain medication when he would get flare ups to the point that doctors thought he was opioid shopping. I just always think of the old “there but for the grace of God go I” and hope they have what they need to get through it.