How to deal with extreme physical pain • Hacker News Board

Re: How to deal with extreme physical pain

#151

Post by DoreenMichele » Sat, Oct 31, 2020, 3:24 AM UTC

darkerside wrote: post #108

banana_giraffe wrote: post #56

Earlier quoted context omitted.

And perhaps this is a thing everyone deals with to some extent for one thing or another: I have a very strictly controlled diet. It's the result of a lot of testing, and discussions with my doctors. Most people that are around me enough get a sense of this. Most don't know the depth of it. What gets old is when I deviate from the diet, by say having a glass of beer at a social function, it's a big deal. Everyone's co…

Just so you know, you're effectively complaining that people care about you too much. People can't put themselves in your shoes, but they try, and when they see you having a beer, knowing it could be bad for you, they try to support you in keeping away from it. I can see how it would get annoying. If you view it as love, instead of nagging, it might get a little less annoying.

It's virtue signaling, not caring. It's pretending to care and expecting to get pats on the head for it while actually being a burden to someone whose life is already overburdened.

It's the opposite of actually caring about a person. It's caring about them making you feel good about going through superficial "caring" motions while doing absolutely no good and lots of terrible harm when it is added up over time for the person with a chronic condition whom absolutely everyone wants pats on the head from for pretending to care while doing not a damn thing to actually make their life better in some meaningful way.

If people care, they do what actually helps you rather than insisting you make them feel good for superficial bullshit that only adds to your suffering.

Re: How to deal with extreme physical pain

#152

Post by gwbas1c » Sat, Oct 31, 2020, 3:24 AM UTC

centimeter wrote: post #50

gwbas1c wrote: post #22

Earlier quoted context omitted.

> It's because I don't want your advice on how to make the pain go away or to deal with it Banana_giraffe isn't alone. I had chronic obstructive sleep apnea and I quickly got tired of unsolicited woo-woo illogical suggestions to treat it. Exercise and meditation doesn't fix problems with bone structure.

Exercise can help fix excessive body fat, which contributed to my apnea. It’s actually pretty fascinating how many common and sometimes serious medical problems are known to be fixable with “woo-woo” advice like “don’t eat like shit” (advice that 95% of people don’t follow). E.g. type 2 diabetes and refractory epilepsy now have purely dietary interventions as front-line treatments. We have weak evidence that this wil…

Yes, excessive body fat is known to cause sleep apnea. It's not the only cause.

I had to go through jaw surgery. It was worth it.

Re: How to deal with extreme physical pain

#153

Post by zachrip » Sat, Oct 31, 2020, 3:25 AM UTC

banana_giraffe wrote: post #12

I have a chronic condition that causes pain. One of the things I've learned, in as much as I can, is I don't tell anyone. I'd rather be rude than explain I'm in pain. Not because I don't appreciate sympathy. Not because I'm ashamed. It's because I don't want your advice on how to make the pain go away or to deal with it. I'm tired of advice. I've got too much advice. I try things, I research issues. I talk to doctors…

People do the same stuff with my vision loss. I have usher's syndrome, it's not curable right now but everyone has some answer for me. Of course I don't want to go blind, so yes, I have researched options and studies, thank you.

Re: How to deal with extreme physical pain

#154

Post by DoreenMichele » Sat, Oct 31, 2020, 3:27 AM UTC

m3kw9 wrote: post #149

banana_giraffe wrote: post #12

I have a chronic condition that causes pain. One of the things I've learned, in as much as I can, is I don't tell anyone. I'd rather be rude than explain I'm in pain. Not because I don't appreciate sympathy. Not because I'm ashamed. It's because I don't want your advice on how to make the pain go away or to deal with it. I'm tired of advice. I've got too much advice. I try things, I research issues. I talk to doctors…

The main thread is that people that tell you about their pains just want you to hear them, not solve their problems. They want empathy by being a good listener and just acknowledge with empathy

When I tell people I'm in pain (or similar), I'm usually trying to convey "Hey, sorry I am not at my best. I'm not trying to be rude. I'm not trying to bark at you. If I'm failing to get all the info, it's not for lack of trying or being too lazy or disrespectful to pay attention. I'm just doing the best I can right now and the best I can isn't that great."

And that's usually not how it gets interpreted so I do a lot less of that than I used to do.

Re: How to deal with extreme physical pain

#155

Post by f2000 » Sat, Oct 31, 2020, 3:29 AM UTC

A few years ago I fell and broke my elbow. It was a mess and had to have emergency surgery to put it all back together. After surgery I'm sent home with a "ball" around my neck that is a reservoir for some pain meds that are being fed into my body via a catheter that was threaded into a vein in my neck. So I am sitting on my recliner a few hours after the surgery , awake but groggy. Anesthesiologist calls me on my cell phone to check in on me. So the pain med ball has a valve on it calibrated from 1 to 10. It's on like 9. He asks me how the pain level is. I say "no pain". He say's "great, what's the setting our your valve" I say 9. He says "whoa! you need to turn that down! At that level it will be used up in about 10 hours and you need it last for at least 48 hours" I say "okay." He then hangs up. So being a groggy engineer, I think "okay, I will dial it down to like 2 and then as pain arrives adjust up to needed level" So I turn it down to 2. About 45 minutes later I am in the most excruciating pain I have ever experienced. Think teeth clenching. Sweating. Tears. I immediately turn the dial up to 10. The pain lasted for 2 hours. I'm an atheist, but let me tell you I was coming to Jesus in those two hours. Once the pain subsided, I call him back. He says "Oh yeah, you should have slowly backed down on the dial." Upside is that I have a lot of empathy for folks who say they are in pain. Seriously, if that pain had continued I would have taken anything, Heroin, whatever!!!

Re: How to deal with extreme physical pain

#156

Post by bane » Sat, Oct 31, 2020, 3:32 AM UTC

I don't have extreme physical pain, but I do have chronic pain in the form of a constant, low-to-medium grade headache that sometimes turns into a crippling migraine-like pain for a few days. It flares with weather changes and stress, but on a 1-10 pain scale it's a 3-4 every day of the week 24/7. At times it surges to a 7-10. There is nothing modern medicine can do for me but turn my consciousness off -- which I refuse to accept.

I've learned to tune it out, but the fatigue it creates is sometimes overwhelming and I find myself crashing frequently on whatever surface I can find to rest on. I struggle mightily in the mornings to make it to work.

When I was in my teens I was part of an NIH study into chronic headaches, but doctors in general waive it away or don't know what to do about it. Constant back and neck stretches and 800mg of Ibuprofen daily seem to be the only things that alleviate it somewhat, bringing the average from a 4 out of 10 to a 3 out of 10.

Strangely, the first time I went headache free in my adult life was a week-long period in the Bay Area when I was interviewing for a few jobs. The headaches went away for a few glorious days I felt what it felt like to be "me", unencumbered by chronic pain for the first time in my adult life. It was absolutely glorious. I sometimes wakeup, in soaked sheets, sweating about the bizarreness of dreaming about that week. I once had a root canal without anesthetic, because it wouldn't take effect -- tuned it out -- I have nightmares still from the experience.

But I didn't get the jobs, I live on the East Coast, and despite a strange semi-immunity to anesthetic, probably a result of the same condition and genetics (I can get a cavity filled by using the same "tune it out" mental skills I learned dealing with absolutely disabling head pain) without fighting over if the anesthetic is working or not. Most dentists have no idea why the novocain isn't working.

My mother has an unspecified autoimmune disease that causes her global minor joint pain. Whatever she has, I'm sure I inherited it. Medical practitioners are universally unable to do anything at all about it. I sometimes drink too much so I can sleep once or twice a week despite (to spite) the pain.

It sucks and I hate it and I wish I had gotten those jobs in SV even if it meant I had one week a year, pain free. But now COVID-19 so....

Re: How to deal with extreme physical pain

#157

Post by hannofcart » Sat, Oct 31, 2020, 3:34 AM UTC

steve_adams_86 wrote: post #109

strstr wrote: post #25

"A healthy man wants a thousand things, a sick man only wants one". There are so many forms of illness where this is true. I've never experienced anything nearly as persistent and painful as frozen shoulder. The worst thing I've experienced was probably Sciatica as a teen. It was particularly frustrating since the pain was intermittent and invisible to others. Through fairly substantial lifestyle changes, I haven't h…

I had severe sciatica from ages 25-30 and it was like another lifetime. I don’t know where it came from or where it went, but that was a remarkably worse period of my life. Reflecting on it I wish I wasn’t dragged down so much. But in all honesty I think I’d handle it even worse now. It was agonizing at times. I remember laying on the floor squirming in pain, no idea what to do. Hours of it. Thinking about it makes m…

I am struggling with sciatica related to my SI joint right now. It's not nearly as excruciating as most of the other posts but it has rendered me unable to work at all. Am not able to sit for more than an hour before the pain is too much. Lying down is only slightly better. It's been quite some time since I have been able to get a good night's sleep without having to wake up with the pain buliding up slowly.

More than the pain, it's the fact that I'm prevented from being able to work on my computer that frustrates me so much. After a point the boredom becomes worse than the pain.

While am not seeking medical advice from someone on the internet, I'd love to know what you did to get "healthy again".

Re: How to deal with extreme physical pain

#158

Post by DoreenMichele » Sat, Oct 31, 2020, 3:36 AM UTC

ky3 wrote: post #83

banana_giraffe wrote: post #12

I have a chronic condition that causes pain. One of the things I've learned, in as much as I can, is I don't tell anyone. I'd rather be rude than explain I'm in pain. Not because I don't appreciate sympathy. Not because I'm ashamed. It's because I don't want your advice on how to make the pain go away or to deal with it. I'm tired of advice. I've got too much advice. I try things, I research issues. I talk to doctors…

Sorry to hear this. Mind if I offer a meta-woo remedy? There are communities out there who value deep and non-judgmental listening. They recognize that it can be an act of aggression to offer unwanted advice. They have a healthy interest in others and know when to yield when it's really not their business to know. If you could find such a community, you might feel better. You might feel understood.

Most online support groups for medical conditions are terrible. I know a few principles that are constructive, but I don't know how to get traction with starting a community where people genuinely talk about useful information in a genuinely supportive fashion that's not invasive.

I'm agreeing with you, if that isn't apparent. This is a topic near and dear to my heart and I keep trying to figure it out and ...failing.

My Reddit has five members and no traffic, basically. I am stilling thinking on how one would position and promote such a thing.

(Edited for accuracy.)

Re: How to deal with extreme physical pain

#159

Post by DoreenMichele » Sat, Oct 31, 2020, 3:39 AM UTC

Hello, Scott Hanselman.

Thank you for writing this. It has fostered some good discussion on HN on a very difficult topic that usually goes poorly, so you must have done something right.

I hope you get well soon, even if it takes some kind of miracle (in the sense of "wondrous happening," not necessarily in the sense of "intervention from god" if that second thing isn't your cup of tea). Sometimes people do get medical/health miracles.

All my best,

Some Random Internet Stranger named Doreen.

Re: How to deal with extreme physical pain

#160

Post by SoSoRoCoCo » Sat, Oct 31, 2020, 3:40 AM UTC

I know exactly where he is right now.

I broke my clavicle and had it plated back together. It was only for 8 months until I had the hardware removed, but it was constant, jaw clenching, phone-ringing-in-the-ears white-out pain that lasted for months.

There's no position in you can sit in to relieve it. You can't move or adjust to make it go away, even for a minute (there were a few times it went away, but very few). It's not like when you cut yourself doing something dumb and the initial pain subsides. This pain just. kept. going. Initially I was on Dilaudid, and then morphine, but the constipation was awful, and mental disassociation and hallucinations were scary. I started Oxy, but was scared of addiction so I didn't take it as often. I just kept popping Ibuprofin like candy. I even meditated, but it didn't do much because it's hard to learn something like that on-demand.

The pain finally went away after the hardware removal. But you know what? I have a persistant fear of being like that again. I can't imagine what I would do if it was every day and there was no known source like OP.