How to deal with extreme physical pain • Hacker News Board

Re: How to deal with extreme physical pain

#331

Post by athriren » Sat, Oct 31, 2020, 5:32 PM UTC

temp0826 wrote: post #327

athriren wrote: post #186

Earlier quoted context omitted.

No, the actual issue here is that people don’t understand that they need to have enough empathy to be able to follow a logical sequence of steps before speaking: First, realize that the person with the chronic health issue has probably put a lot more time and effort into addressing the complexity of their experience. Second, realize it is in fact exhausting to constantly get unsolicited advice. Third, realize you pre…

I work with a couple of rather novel/unconventional treatments/“medicines” (kambo and ayahuasca). I find myself biting my lip hard at this topic because most folks have never heard of them and demand some kind of research backing the wild anecdotes surrounding them. They’re both incredibly potent and can treat a wide range of maladies, but are very demanding ordeals to actually go through. I’ve come to terms with not…

I think close family relations and friends, you should ask if they want advice. For this type of recommendation, I (personally) would want to know the person so I could guess at what their reaction would be.

This is also more unconventional than typical, no one ever recommended I take ayahuasca, so for me personally it would be novel enough that it wouldn’t be frustrating to get recommended it by an acquaintance. This is my perspective.

I would caution against the mindset in the middle of your paragraph though (“they must want to be healed”). I wanted nothing more to be healed, it’s just after 36 months of being poked and prodded by medical professionals it always struck me as a little haughty that someone else I didn’t know at all would presume to know enough about my situation to think their advice would be useful. But this is just my experience, and I only ever got useful unsolicited advice a couple times.

I just think people need to be emotionally in tune with their conversation partners, and if you don’t know them well enough to read them then you probably don’t need to be giving them advice anyway.

Re: How to deal with extreme physical pain

#332

Post by newbie789 » Sat, Oct 31, 2020, 5:51 PM UTC

theshrike79 wrote: post #243

scaladev wrote: post #188

Earlier quoted context omitted.

Is is normal in the US? I live in what one might consider a third world country, know quite a few insulin-dependent diabetics, and this story is appalling to me. I've never heard of any diabetic running out of their medication and having to ask the internet for help. Just call the local equivalent of 911 and they'll sort it out. Jesus.

Americans have developed a survival strategy of turning horror stories into heartwarming tales. "Homeless person turns to crowdfunding to get themselves a home!" Americans: Aww how cute! Rest of the world: What the actual fuck? "Family turns to internet for insulin supplies because they can't afford them, man drives 1000 miles to give them some." Americans: Amazing heroism! Rest of the world: How the hell does a diab…

>Americans have developed a survival strategy of turning horror stories into heartwarming tales.

I could not agree with this more strongly. It was a terrible event that I don't think about very often, it just popped into my head because of this post.

Re: How to deal with extreme physical pain

#333

Post by banana_giraffe » Sat, Oct 31, 2020, 6:26 PM UTC

giardini wrote: post #328

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…

You are at the borders of accepted medical science and facing the woods now, having exhausted the usually-accepted and documented approaches. You have two choices: a) turn your back on the woods and return back to the usually-accepted and documented approaches and try them and their variations again or b) continue in the unexplored woods. For (b) to work you must try everything you hear . But you say you have chosen…

Ok, I've been disconnected from this discussion for a while, but I can't pass this comment by.

> But you say you have chosen NOT to hear. If you want to live in ignorance and pain, by all means, help yourself.

I do not want to live in pain. I continue to try things. I've lived with this condition longer than you might guess, and I have a few lifetimes of things left to try. I know some things that will help, so I do that for now, but I have no end of things to try in the future.

Stop assuming you know what's in my backlog. Stop assuming you know I've given up. It's all just tiring. If I had a lack of ideas, I'd ask for help. If my doctors aren't helping, I'd fire them, I have fired doctors that don't help me. And I'm not opposed to firing all doctors and finding other sources, but for now the doctors are doing good for me, and the provide avenues that aren't available via other means. For now, they're helping, they're communicating with me, and working with me as I test things. I hope to one day get to the point of no pain at all, but I also need to be able to get to a place of managing the pain I do have, since it's possible, indeed probable with my condition, that that's the best I can hope for.

And in case it's not clear, I'm not exactly speaking directly to you. I'm speaking to the mythical person conglomerate that you fall into of people that talk to me like this. So many people seem to assume they know more about my condition with so much less information, including cases like this with basically no information. Please stop assuming you know more about my condition than me.

Re: How to deal with extreme physical pain

#334

Post by nicklaf » Sat, Oct 31, 2020, 7:25 PM UTC

xyzzy_plugh wrote: post #324

nicklaf wrote: post #240

Earlier quoted context omitted.

Hmm. I was prescribed Cymbalta and wrote about the reasons for that in a sister reply to yours, and your post reminds me why I have been hesitant to take it. If I may ask, did your wife's post-withdrawal symptoms eventually subside?

Yes, it took months to ramp off it. She had starry vision whenever the lights turned off for several months after that, which doctors were pretty dismissive of. She claims to never have been quite the same since taking it (and she only ever took what the doctors described as a baby dose) but she seems quite fine and normal now, over a year later. She's been on a lot of drugs, and the ramp down for this was by far the…

Thank you very much for sharing. I'll definitely need to give the decision to take the drug more consideration before I go through with it.

Re: How to deal with extreme physical pain

#335

Post by bionhoward » Sat, Oct 31, 2020, 7:45 PM UTC

What’s the pathophysiology of frozen shoulder?

Re: How to deal with extreme physical pain

#336

Post by bionhoward » Sat, Oct 31, 2020, 7:56 PM UTC

bionhoward wrote: post #335

What’s the pathophysiology of frozen shoulder?

Biological Aspect of Pathophysiology for Frozen Shoulder

https://www.hindawi.com/journals/bmri/2018/7274517/

Would be potentially useful to get yourself genetic sequence and/or biopsy and RNASEQ because you could identify which genes are up or down regulated to cause the condition, and theoretically you could treat this with something like RNA interference.

For example if your frozen shoulder is caused by reduced production of the Matrix Metalloproteins which break down collagen, then you could either reduce collagen production or insert additional copies of the MMP genes.

Or, if the frozen shoulder mechanism is directly immunologic, it could be autoimmune, in which case you could try to induce tolerance with some supressive immunotherapy as has been effective for some folks with Asthma.

Another possibility would be the frozen shoulder is an overt manifestation of another underlying condition, such as rheumatoid arthritis, lupus, or cancer (paraneoplastic frozen shoulder)

If the pain is truly unbearable, you could look at more distal nerve blocks, or sensory-only nerve blocks, perhaps you could try a clinical trial for NaV1.7 knockdown (to turn off a critical pain gene in a local area, such as the dorsal root ganglion for the correct dermatome)

Not a doc but did pass USMLE before switch to engineering. Hope it helps. Feel better dude!

Re: How to deal with extreme physical pain

#337

Post by tempestn » Sat, Oct 31, 2020, 8:03 PM UTC

tempestn wrote: post #20

I'm fortunate not to be in any significant pain, beyond the standard aches of nearing 40. Just wanted to say that I empathize with the OP and those of you in the comments here who are dealing with real pain and disability. The fortitude shown in the post and in many of the comments is impressive. I hope things improve for you.

Huh, didn't expect downvotes for this. Did it come across as patronizing or not genuine? I was just struck by what the author and some commenters are dealing with, and the grace with which they handle it. Or did 'empathize' come across as comparing my situation to theirs? Certainly wasn't intended if so.

Re: How to deal with extreme physical pain

#338

Post by darkerside » Sat, Oct 31, 2020, 8:07 PM UTC

BeetleB wrote: post #200

darkerside wrote: post #196

Earlier quoted context omitted.

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…

The ironic thing is that the original complainant is making this exact same point about those who give this advice. Typically they're not trying to connect - they're trying to fulfill their own needs without understanding the other's needs.

None of us fully understand each other's needs. You can get frustrated about that, or educate others. It's a personal choice. I don't judge anyone either way (or at least, I agree they are free to make their own decisions), but having done both, I certainly have my own observations about which of those leads more effectively to happiness.

Re: How to deal with extreme physical pain

#339

Post by whatshisface » Sat, Oct 31, 2020, 8:40 PM UTC

centimeter wrote: post #206

wutbrodo wrote: post #174

Earlier quoted context omitted.

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.

If they're 70% competent then you will be 70% wrong in calling them incompetent.

Re: How to deal with extreme physical pain

#340

Post by archon810 » Sat, Oct 31, 2020, 9:21 PM UTC

Thorrez wrote: post #258

f2000 wrote: post #155

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 ce…

Binary search doesn't always turn out well.

9 to 2 definitely isn't binary search.