How to deal with extreme physical pain • Hacker News Board

Re: How to deal with extreme physical pain

#161

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

acalzycalzy wrote: post #34

qppo wrote: post #28

Earlier quoted context omitted.

Another person with orchialgia here, it sucks. Mine's been on and off for almost 20 months now. After three urologists I found something that worked (and it's like a miracle). Something you touch on here implicitly is how much it changes little things in your life. For me it was long commutes, I can't sit for extended periods of time. What I would add is that doctors can be great for things they recognize and can tre…

What worked?

No joke, a vibrator applied to the inguinal area. It's a little uncomfortable and probably has a hefty dose of placebo effect but I'm told it's like a reset button for the way the brain interprets pain from the damaged nerve. Like sending it garbage data to trick it into clearing its cache.

Re: How to deal with extreme physical pain

#162

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

maxbond wrote: post #146

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…

I'd just like to say that, while I see people responding in exactly the way you and gwbas1c are describing, and trying to turn the criticism back around on you, you have made me think about my actions in the past and the way I express concern, and what sort of boundaries I should have with people. Reading about your experience, and seeing it happen in real time, has been extremely educational for me. I hope it is hea…

I'm less dangerous if I know nothing, but duly noted about how unwelcome medical advice can be

Re: How to deal with extreme physical pain

#163

Post by jordibunster » Sat, Oct 31, 2020, 3:44 AM UTC

Auracle wrote: post #90

I started getting cluster headaches a couple of years ago. The level of pain that they inflict completely changed my pain scale. I started doing something that I read in a fiction book series (The Dresden Files) - basically a little visualization that helps me compartmentalize the pain. It helps a ton, though the fact that the attacks are relatively short probably help in that regard as it takes a lot of concentratio…

I saw the title of the article, read it, and came back to the comments to find fellow clusterheads.

Wishing you pain free days!

Re: How to deal with extreme physical pain

#164

Post by newbie789 » Sat, Oct 31, 2020, 3:44 AM UTC

52-6F-62 wrote: post #144

newbie789 wrote: post #84

Earlier quoted context omitted.

Yeah, he's great! We needed just a couple insulin reservoirs for a Medtronic pump and he brought a bunch of them, and quite a few blood glucose strips (which can be ridiculously expensive), and gave us a little demonstration about a closed-loop "artificial pancreas" system based on open source software and relatively cheap hardware. I'd definitely never have heard about Tidepool or OpenAPS if it weren't for his visit…

I'm going through other pancreatic issues ([idiopathic/undefined] acute pancreatitis resulting in several necrotic masses and another(s?) unidentified nodes)— would you be so kind as to share some of your info? Are the two items you mentioned the projects? I'm hoping diabetes (or worse) isn't in my future, but you never know. Doctors don't have as much time lately due to Covid either to spend time with me on it until…

My partner hasn't actually implemented any external pancreas programs for a few personal reasons, I mostly bring it up because it's something that's solidly in the "goals" column and we're both excited about the possibilities in the future. (And it is very much the future as far as I can tell)

Yes, Tidepool and OpenAPS are both generally focused on insulin management, so if you're looking for something that involves glucagon-like things I've got no idea.

Honestly, Scott Hanselman is the guy I'd ask.

Re: How to deal with extreme physical pain

#165

Post by chime » Sat, Oct 31, 2020, 3:44 AM UTC

Only posting this in case it helps anyone else. I am aware it is a single point of data in my case but it is backed by research and accepted medical advice (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3412202/). I had severe chronic pain from herniated disc that was not a perfect candidate for immediate surgery.

My GP prescribed Cymbalta (https://www.cochrane.org/CD007115/NEUROMUSC_duloxetine-treat...) and I was surprised to find out that the depression med actually is known to help with chronic pain.

It took a few days/weeks to really kick in but it absolutely worked for me. What it did was dissociate my conscious self from my in-pain self. I was always aware that my body was in pain but frankly it didn’t bother me.

This allowed my body the time to properly heal itself without me consciously trying to adjust my position and movement to minimize pain. After about 9 months, I got off the meds, completely pain free. Cymbalta does have a ton of side effects and I experienced a number of them, especially when tapering off. However it was all worth it to get rid of the literal pain in my neck. Sounds like a parody to say “Ask your doctor about Cymbalta” but honestly if you are in chronic pain, don’t want to be addicted to opioids, have tried every rational thing but this, it is not a woo crystal oil gimmick. It is a risk that may be worthwhile to you.

Re: How to deal with extreme physical pain

#166

Post by autarch » Sat, Oct 31, 2020, 3:45 AM UTC

andreygrehov wrote: post #142

autarch wrote: post #33

Earlier quoted context omitted.

Yeah, regarding doctors I'm not sure anything they suggested help. The first one I saw that it was an infection and gave me antibiotics. That didn't seem to do much. Then as it persisted another urologist thought it might be urine backflowing down my vas deferens and I took beta blockers to improve my urinary flow. Finally the urologist basically said that sometimes after you have an infection you can have idiopathic…

I had a similar problem, no urologist could tell me anything meaningful. After some time and a gigantic load of stress, I randomly stumbled upon a guy who had the exact same problem as mine. He did a shit ton of analysis, tests and scans. In his case, it ended up being a pain coming from a herniated disc. Coincidentally, he had the exact same disc being herniated as mine - L5S1. Once he told me about that, it all cli…

Given that it resolved itself on its own, I'd assume that wasn't the case for me. But it's very interesting how referred pain can be so confusing!

Re: How to deal with extreme physical pain

#167

Post by jordibunster » Sat, Oct 31, 2020, 3:47 AM UTC

Ralfp wrote: post #88

As migraine sufferer, I find relief in only two thoughts: - my migraines last 4 hours and happen once every 3-6 months, and there are people who have 72hs long migraines, or migraine every few days - I could've had cluster headache instead. People suffering from those call them "suicide headache" and are known to hit their head against different objects, because losing consciousness or felling other pain is preferabl…

I get both! Mostly clusters, but on occasion I'll have a looooong headache that I can't shake, and after a while I start feeling the nausea and realize it's a migraine.

Re: How to deal with extreme physical pain

#168

Post by nmfisher » Sat, Oct 31, 2020, 4:01 AM UTC

uprighten wrote: post #66

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…

I'm not sure about 95% of doctors being incompetent. If nothing else they are much better trained than the average person offering advice.

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? That's when some kind of analytical/critical diagnostic skills are needed, and in my experience, very few doctors possess these skills.

Once you're in uncharted waters, they're not helpful. In fact, they're often actively unhelpful because they refuse to acknowledge that some things might be outside their expertise and they either need to actually hit the books, or do the work to find a specialist who can help you.

Re: How to deal with extreme physical pain

#169

Post by QuadrupleA » Sat, Oct 31, 2020, 4:03 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…

Hear, hear! Well put. That goes for small things like colds, too, which despite science everyone seems to have a cure for.

Re: How to deal with extreme physical pain

#170

Post by q_andrew » Sat, Oct 31, 2020, 4:04 AM UTC

The author of this article is in far more pain than I have ever experienced. I will, however, try to pitch in because I have had chronic intestinal issues and I've found a few hacks to make it feel better.

For me it helps to consider how many people have had it worse. It's cynical, I know, but knowing that diarrhea killed more people than guns in the USA civil war is comforting. The Union soldier who died squatting over a pit while cannons boom and flies descend makes me remember how comfortable my climate-controlled bathroom is.

Another thing I've learned is to not feel guilty when I've abandoned whatever I was up to before the pain started. I'm lucky to have a partner who is very forgiving when we are traveling or doing leisure activities and I have to rush to the nearest bathroom. It's not your fault that you're not doing what you were supposed to be doing. Don't hesitate to curse your maladies for interrupting your life. It feels good to stick it to the man, even when the man is your own digestive system.