A few years ago, my partner ran out of critical insulin pump supplies and I appealed to the internet for help. Eventually, Scott drove quite a way to our apartment to give her (a complete stranger) what she needed (and more!) He's a stand-up grade A really nice guy, and I genuinely wish him the best. I wish that I had more expertise to help with this issue, as the only thing that comes to mind is I've had good result…
How to deal with extreme physical pain
141–150 of 362 posts
Re: How to deal with extreme physical pain
#142Earlier 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…
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…
Re: How to deal with extreme physical pain
#143Earlier quoted context omitted.
I think you're being unnecessarily dismissive of good, reliable information coming your way. Anecdotal advice is some of the most reliable, trustworthy advice that we come across. All those studies are affected by agendas from dozens of individuals and organizations, not to mention potentially poor procedure and general incompetence. You're being gifted information which was transported to you graciously from an actu…
The only way to fix my ankle arthritis is to have the joint replaced, which is not ideal nor a consideration. Anything otherwise is not good, nor reliable information. It's kind of like me saying to you, "Hey, your advice is stupid, maybe you should go take some smart pills so you don't infect others" in seriousness, instead of as an off-hand reply gifting you with information graciously.
If someone is giving you advice which worked for an unrelated condition, you're still ignoring useful information which may help someone you know if you actually bother to pay attention and remember it.
If someone is giving you advice for the same condition you have been diagnosed, you're taking information from authority figures (licensed doctors) over information from someone who is actually in the same boat as you, which seems foolish to me. Certainly un-hacker-like.
By the way, if you look at actual studies, results of surgery done for pain are not very encouraging -- less than half result in pain actually going away.
Re: How to deal with extreme physical pain
#144Earlier quoted context omitted.
That is a lovely story. He does come across as a genuinely good guy.
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 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 next year. In the interim it's just pain management...
edit: I had a look. I guess those have more to do with insulin management than a wholistic pancreas... really interesting nonetheless! This is the kind of effort that amazes me with regard to what we're really capable of with technology. Well if any one else knows of anything of a wider scope...
Re: How to deal with extreme physical pain
#145Earlier quoted context omitted.
It's remarkable how many people I know, including myself, had significant bicycle-related trauma. I broke my ankle in three places due to a fall (do not recommend by the way, once the shock wears off the pain is pretty bad, and then after a while you have to walk on your still partially broken foot so that it heals properly). A friend of mine broke a clavicle. Another friend nearly fractured her spine. I sold my bike…
Not disputing, not arguing, just trying to understand. How come you and people you know suffered so many accidents? Were you commuting, competing, mountain biking, what? Is the weather bad? Maybe my serious accident is waiting for me still, but the only close call I had was due to my own recklessness. Just riding a bike going from A to B? I can see how one could get injured, but not THAT seriously, unless it's due to…
Re: How to deal with extreme physical pain
#146I 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 hope it is heartening to know that you've inspired a self awareness in at least one person with this thread. Thank you for taking the time.
Re: How to deal with extreme physical pain
#147"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…
Someone I know is dealing with sciatica now and it's not going well, do you have any insights on what helped you?
Alas, I had banked on _something_ changing in 3 months, so I had planned a walking holiday in Western Ireland (Dingle) before rejoining work. I wasn't prepared to cancel the tickets, so I went anyway. I took along a plywood board to help me sit angled on the seat to avoid having to sit at right angles!
Started the walk on The Dingle Way in a dubious frame of mind. I knew I was doing it only because I was too cheap to cancel tickets. Then magic happened. The place is so exquisitely beautiful that I walked 25 kms on the first day, even sharing a backpack with my wife. That evening, everything was hurting, but not in the usual places I had been conditioned to expect. The sciatica was GONE! I couldn't believe it, but it didn't recur the next morning. It has been 20 years now.
It is possible mine was a simple case that just required a structural realignment. But I had tried walking before, and many other strategies to improve posture etc. In hindsight, the only difference is that my brain in Ireland was fully engaged in the beauty of the place and people, and disengaged from the pain. Perhaps exercising my back without being focused on a cure is what worked. Who knows? Perhaps this anecdote is of some value to your friend.
Thank you, Ireland!
Re: How to deal with extreme physical pain
#148I 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 try to remind myself that it's more about the other person's insecurities than my own pain, and I try to be gracious. Sometimes I still snap at people who don't take the hint.
Re: How to deal with extreme physical pain
#149I 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…
Re: How to deal with extreme physical pain
#150I 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…