How to deal with extreme physical pain • Hacker News Board

Re: How to deal with extreme physical pain

#201

Post by centimeter » Sat, Oct 31, 2020, 5:17 AM UTC

banana_giraffe wrote: post #78

centimeter wrote: post #58

Earlier quoted context omitted.

If your diet plan allows beer it’s probably not very effective. Doctors aren’t going to be very helpful here - 95% are incompetent. You should probably try to come up with a good and efficiently computable a priori dietary strategy (e.g. evolutionary ancestral diet, with the goal of minimizing the chance of running into defective metabolic pathways). I can’t think of any such strategies I’m aware of that would allow…

This is exactly what I'm talking about. One beer every 3 months is proof my diet is a problem? For a condition you know nothing about? Really. Fine, then it's useless, and I've surrounded myself with idiots, all of my careful testing and attempts to understand my condition have failed. This kinda of nonsense, where I debate the very meaning of "me" to some extent is tiring. Even if I'm wrong in all of this, I'm not h…

I’m not responding to you because I think you’re harming me; I’m responding to you because I have been in a similar position to you and I feel empathetic towards you. My advice, from that standpoint, is that any diet that allows beer is probably way too lenient to do anything useful. I can make this judgement with high confidence without knowing the specifics of your condition.

If you’re of European descent, I would concretely advise you to try eating only ruminant meat and water for 4 weeks. This is an extremely high power to weight diagnostic strategy.

Re: How to deal with extreme physical pain

#202

Post by geetee » Sat, Oct 31, 2020, 5:17 AM UTC

DoreenMichele wrote: post #178

wutbrodo wrote: post #176

Earlier quoted context omitted.

> 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. This is a very simplistic way to look at people. A lot of people are misinformed or not thoughtful or don't fully understand your experience or frankly not that bright. The idea that people who genuinely care never do any damage is beyond ludicrous.

That's a ludicrous interpretation of my remark. People who actually care will be okay with being told "This isn't helping. Please just stop." But that's not what the vast majority of people do. The vast majority of people want it acknowledged that they are good people because they care about you and are trying to help and all this shit. If they cared, they would drop it when asked instead of doubling down on trying t…

Based on other comments, I was under the impression that some people wanted zero unsolicited feedback. This instead sounds like you don't want people to keep offering suggestions after you tell them to stop. The former would make for a really cold society. The latter is completely understandable. I would tell the repeat offenders to fuck right off.

Re: How to deal with extreme physical pain

#203

Post by [deleted] » Sat, Oct 31, 2020, 5:17 AM UTC

darkerside wrote: post #196

DoreenMichele wrote: post #151

Earlier quoted context omitted.

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 th…

Within a range, you get to interpret the actions of others. It's like one of those optical illusions where you can see a rabbit or a duck, but not both at the same time. One of those illusions will anger you and sap your strength. The other will connect you with another human being on some level, however superficial, which is wired to make you feel happy and fulfilled. Neither is the full vision of truth. But you are…

[deleted]

Re: How to deal with extreme physical pain

#204

Post by BeetleB » Sat, Oct 31, 2020, 5:20 AM UTC

Waterluvian wrote: post #42

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…

What would you hope people do if you did tell them? My guess is "Damn that sounds awful. Let me know if I can help" and then dropping it entirely?

That's actually fairly good, assuming you will actually try to help if the person asks for something specific. Since many people really can't help, you could also say:

"Damn that sounds awful. I hope you'll find a way to get better."

Re: How to deal with extreme physical pain

#205

Post by [deleted] » Sat, Oct 31, 2020, 5:20 AM UTC

geetee wrote: post #202

DoreenMichele wrote: post #178

Earlier quoted context omitted.

That's a ludicrous interpretation of my remark. People who actually care will be okay with being told "This isn't helping. Please just stop." But that's not what the vast majority of people do. The vast majority of people want it acknowledged that they are good people because they care about you and are trying to help and all this shit. If they cared, they would drop it when asked instead of doubling down on trying t…

Based on other comments, I was under the impression that some people wanted zero unsolicited feedback. This instead sounds like you don't want people to keep offering suggestions after you tell them to stop. The former would make for a really cold society. The latter is completely understandable. I would tell the repeat offenders to fuck right off.

[deleted]

Re: How to deal with extreme physical pain

#206

Post by centimeter » Sat, Oct 31, 2020, 5:21 AM UTC

wutbrodo wrote: post #174

nmfisher wrote: post #168

Earlier quoted context omitted.

I wouldn't say most doctors are incompetent, but I would say that most are automatons working to a checklist which probably hasn't been updated since they left school. Patient reports symptoms A, B, C? Order tests X, Y, Z, prescribe drugs 1, 2 and 3. Now that's probably appropriate for (say) 70% of patients. But what about the other 30% of patients whose symptoms or conditions don't fit squarely in the checklist? Tha…

Great comment, sums up exactly what the issue is without resorting to shortcuts like "incompetent" that are more likely to offend than convince (something I've certainly been guilty of in the past). At this point, for mild to moderate healthcare-system interactions, I go to doctor's appt with a pretty accurate sense of what prescription and/or advice I'm leaving with. I basically consider it a fee I need to pay in or…

What’s wrong with using shortcuts like “incompetent”? It’s not generally a good use of time to enumerate all the specific ways in which most professionals are incompetent, especially if you aren’t familiar with the field.

Re: How to deal with extreme physical pain

#207

Post by akulbe » Sat, Oct 31, 2020, 5:21 AM UTC

gwbas1c wrote: post #22

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…

> 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.

One of the things that was a revelation to me about sleep apnea… it's not CAUSED by your weight. Here, I'd been carrying that around for years, and feeling like a failure.

I brought it up to my sleep doctor. I said I thought I had it because of my weight, he laughed at it. He said, "If you are overweight, that can exacerbate apnea, but IT ABSOLUTELY DOES NOT CAUSE IT. That's absurd."

My sleep doctor is suuuuper fit, and very lean. An avid runner. He said that he has a VERY bad case of sleep apnea. I was floored!

He said you either have it or you don't.

Re: How to deal with extreme physical pain

#208

Post by pacomerh » Sat, Oct 31, 2020, 5:42 AM UTC

eric_b wrote: post #112

I had chronic, severe, debilitating pain for years until I read the book: The Mindbody Prescription by Dr. Sarno [1] Someone on HN suggested it in a "carpal tunnel" thread. I didn't have carpal tunnel. I had a completely destroyed knee. No more cartilage. Bone on bone with every step I took (confirmed by MRI). Cortisone didn't make a bit of difference. I couldn't walk 20 feet without mind boggling pain. That book cha…

I came here to say this, thanks. Sometimes I hesitate from posting about this because It's a very sensitive topic. The reason for your pain might be totally different from mine and I hate to assume what worked for me would work for you, etc. In any case, I was also changed by reading Sarno's books and that's the interesting part.

My pain started in my chest, left and right. Then it transitioned to the center, I went to the ER thinking I was having a heart attack. Got blood tests and studies done. In the following months the pain took over other parts of my body and my arms, legs and back were hurting a lot. I was having a very hard time working, I had to ask for a couple of weeks off and try to figure out what was going on. Sometimes the pain would go away for a few hours and then come back. I didn't have a clue of what was going on because I couldn't find a consistent pattern, it was just moving everywhere and I couldn't even play with my kid, which was killing me.

I was browsing YouTube and was reading about this guy that had Carpal Tunnel, I was curious because I was trying to avoid making my pain worse. So when I was reading the comments, I saw someone wrote something like "Read Sarno's book and thank me later".

I was intrigued and started reading about him. I started with his book: The Divided Mind. From there it all started to change gradually. I found a local physician that specializes in TMS, and that help me so much. after a few weeks it all started to fade away considerably. Today I feel great. All this happened in a period of like 8 months.

Re: How to deal with extreme physical pain

#209

Post by JauntyHatAngle » Sat, Oct 31, 2020, 5:50 AM UTC

akulbe wrote: post #207

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.

One of the things that was a revelation to me about sleep apnea… it's not CAUSED by your weight. Here, I'd been carrying that around for years, and feeling like a failure. I brought it up to my sleep doctor. I said I thought I had it because of my weight, he laughed at it. He said, "If you are overweight, that can exacerbate apnea, but IT ABSOLUTELY DOES NOT CAUSE IT. That's absurd." My sleep doctor is suuuuper fit,…

I've heard different from sleep doctors, that is, it can be bad luck from genetics where weight is not the main (or even not at all) a factor, but for others it's largely caused by fat deposits blocking the upper airway, and with weight loss it entirely goes away.

So case by case?

Re: How to deal with extreme physical pain

#210

Post by will_pseudonym » Sat, Oct 31, 2020, 5:51 AM UTC

shakna wrote: post #116

zdragnar wrote: post #5

I was diagnosed with fibromyalgia ~15 years ago. Since then, having started an immunosuppressive for something else and it seemed to help with the pain- now the doctors think it is psoriatic arthritis. I am in constant, mild pain. Some days it is nearly, but not quite debilitating. Some people think I am making it up, exaggerating, or that it is all in my head. There is no certain test for either condition- in partic…

> There is no certain test for either condition- in particular, fibromyalgia is basically a bucket you get tossed into if nothing else makes sense. FM is young (around 1990 it got its name), so a lot of what we know has changed, especially in fifteen years, but it is no longer the case that there isn't a test for it (there's multiple), and it should not be the diagnosis of last resort when nothing else makes sense. T…

If I haven't had any luck with treatment options of fibromyalgia, what are good avenues to look down for treatment? What's the most renowned institution for treatment of fibromyalgia?