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How to deal with extreme physical pain

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Re: How to deal with extreme physical pain

#281

Post by JohnBooty »

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…

    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
I learned this lesson with ADHD as well. Most people will roll their eyes and think it's a simple lack of discipline. The rest give you advice, which is even worse.

I learned to communicate my needs to people, instead of my diagnosis. Example: "I have trouble focusing on my work in crowded areas - could I work in [some other location] when I'm not pairing?" instead of "I can't work here, I have ADHD." (Not that I ever put it that way, but you know what I mean)

But pain is a different story. I don't know how you would even explain that to people without getting all of the unwanted and unhelpful advice...

Re: How to deal with extreme physical pain

#282

Post by francis-li »

Vinnl wrote: post #261
francis-li wrote: post #252

Earlier quoted context omitted.

That sounds really frustrating and I think you've encapsulated what people who have these chronic conditions are feeling quite well. It seems like when people with pain decide to share what they're going through, they aren't looking for solutions -- they just want people to know what's happening and that their experience in that moment is affected by it, and they want you to understand that. I think this mindset is e…

I wonder if it would help (bit nervous about this comment because it looks like giving advice, and I haven't had the frustration myself) to explicitly preface the sharing with an explicit request not to give advice? I have been on the other end of that: when the father of a friend of mine passed away they explicitly said they did not want sympathy but instead to do something fun that night, and we did. Years later I…

I think it would probably help, it'd probably require that person to be pretty in touch with their needs (which seems like it could be pretty hard when you're already super frustrated and in pain).

It sounds like your friend was in touch enough to let you know how to help them and it sounds like you really connected that night. I wish people were more candid in general, but maybe people are a bit scared to ask for what they want?

Re: How to deal with extreme physical pain

#283

Post by httpsterio »

nmfisher wrote: post #168
uprighten wrote: post #66

Earlier quoted context omitted.

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? Tha…

One thing you fail to mention / acknowledge is that what doctors are not doing is just running through check lists because that's what they are taught, but because they have to rule out a lot of stuff out first. In a lot of cases, the wrong type of medicine or diagnosis can be lethal.

Re: How to deal with extreme physical pain

#284

Post by francis-li »

treeman79 wrote: post #260
francis-li wrote: post #252

Earlier quoted context omitted.

That sounds really frustrating and I think you've encapsulated what people who have these chronic conditions are feeling quite well. It seems like when people with pain decide to share what they're going through, they aren't looking for solutions -- they just want people to know what's happening and that their experience in that moment is affected by it, and they want you to understand that. I think this mindset is e…

Mix of both. Went through massive medical problems. Zero support from doctors fo years. I had to go into trail and error mode for years to start figuring out what was wrong, and what effected me. All with an Exhaustion and pain level on par with a dying cancer patient. Oh and a comet brain fog. Eventually found answers, several conditions that were inter-related. Uncommon response to most drugs the doctors tried. If…

That's insanely rough, it's so hard to imagine that someone can go through all that and come out the other side. It even sounds like the doctors themselves were dismissive of you.

Maybe it's not so much that people aren't looking for solutions, but they don't want advice from people who haven't yet shown that they understand what they are going through/need?

Re: How to deal with extreme physical pain

#285

Post by PaulKeeble »

DanBC wrote: post #256
PaulKeeble wrote: post #217

Earlier quoted context omitted.

I had a doctor in the sleep clinic tell me if I lost 10KG my sleep apnea would be cured. I lost 15KG and my prescription went up 5%. When the doctors treating you believe that nonsense and then are surprised it did not work there isn't much hope for the public. This myth actually comes from the doctors.

Weight loss is not curative, but it is a useful. About 2/3rds to 3/4ths of people with obstructive sleep apnoea are obese. https://cks.nice.org.uk/topics/obstructive-sleep-apnoea-synd... > These recommendations are based on the Scottish Intercollegiate Guidelines Network (SIGN) guideline Management of obstructive sleep apnoea/hypopnoea syndrome (OSAHS) in adults [SIGN, 2003]. > Advice on weight loss and exercise > Ex…

Yes they are, because sleep apnea causes obesity since lack of sleep messes enormously with your hormones. Its not causative its correlated, it is a symptom.

Re: How to deal with extreme physical pain

#286

Post by giantg2 »

banana_giraffe wrote: post #57
giantg2 wrote: post #45

Earlier quoted context omitted.

I have to admit, one of my thoughts was 'Is there anything I can recommend'.

I get that. I'm like that too. If I see a problem, I want desperately to try and help fix it. This has absolutely taught me that sometimes the best answer is "Wow, that really sucks. If you want to talk about it, let me know" and move on to some other subject.

Yep. I try to be respectful by not suggesting common stuff since they would have already looked into. Sometimes I'll suggest looking into some less common things. There are many things that modern doctors won't suggest or don't know about.

For example, I'm an amateur mycologist and I have heard about health benefits of different mushrooms. If they don't want hear about the health aspect, the way I bring it up usually opens the door to a topic change about foraging for mushrooms, eating them, and many related questions.

In this case, I don't know of anything that would help frozen shoulder. There is some stuff that I find interesting to talk about but don't think it is worth suggesting to him. Like some studies on pain management that I barely remember, but I don't know if it was on psilocybin or maybe LSD. The way my dumbed-down brain remembers it is that it basically causes a pain "reset" where in some cases the brain ignores the persistent pain signals, or lowers the perceived pain level. There is also grayanotoxin that comes from tincture of ghost pipes that alters how pain is perceived, but I think that is only temporary. Interesting thing is that ghost pipes are actually a plant that doesn't contain any chlorophyll, but feed off of the roots of other plants, somewhat similar to some mychorrizal fungi.

Re: How to deal with extreme physical pain

#287

Post by headstorm »

giantg2 wrote: post #286
banana_giraffe wrote: post #57

Earlier quoted context omitted.

I get that. I'm like that too. If I see a problem, I want desperately to try and help fix it. This has absolutely taught me that sometimes the best answer is "Wow, that really sucks. If you want to talk about it, let me know" and move on to some other subject.

Yep. I try to be respectful by not suggesting common stuff since they would have already looked into. Sometimes I'll suggest looking into some less common things. There are many things that modern doctors won't suggest or don't know about. For example, I'm an amateur mycologist and I have heard about health benefits of different mushrooms. If they don't want hear about the health aspect, the way I bring it up usually…

Plants such as ghost pipes (saprophytes) can be found in abundance, along with rhododendrons, along the Elbo Creek trail in the Olympic mountains of Washington state. https://www.wta.org/go-hiking/hikes/elbo-creek

Re: How to deal with extreme physical pain

#288

Post by fhars »

travbrack wrote: post #271
eslaught wrote: post #172

Earlier quoted context omitted.

I was rereading The Lord of the Rings a while back and one of the things that struck me was how seriously the characters take the giving of advice. In retrospect I think this is one of the biggest blind spots of American culture in general. We act like advice is cheap or even free, both in the giving and in receiving. It's not. Even when solicited. I think we'd all be healthier if we were slower to give advice, even…

I didn't notice this on my recent read. Can you think of an example?

Three is Company:

"Is it indeed?" laughed Gildor. "Elves seldom give unguarded advice, for advice is a dangerous gift, even from the wise to the wise, and all counsels may run ill."

The Mirror of Galadriel:

"Do you advise me to look?" asked Frodo.

"No," she said. "I do not counsel you one way or the other. I am not a counselor. [...] Do as you will."

Re: How to deal with extreme physical pain

#289

Post by noir_lord »

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…

When my Chrohn's flares I just want to be left alone.

I don't need your advice on something you don't understand and can't comprehend, just let me do me.

Work has no idea that I even have Chrohn's because it doesn't affect my job performance and I cover it well.

Peoples perceptions of you change when they know you have a long term chronic condition and it isn't always a positive change - I don't think it's conscious but it does happen so to avoid it, I just don't tell people.

Re: How to deal with extreme physical pain

#290

Post by noir_lord »

6stringmerc wrote: post #110
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 occasionally limp due to a chronic condition. The last thing I want is any comments about it, because a few days later I might not. Unsolicited commentary is usually met with a sigh and a brush off, not telling the truth. The truth is I have built up defense mechanisms and anybody trying to point out my weaknesses can get a face full of their own by way of training watching Triumph the Insult Comic Dog. "Mind your…

Hello member of "limps occasionally" club.

For me it's syringomyelia which sometimes makes it extremely painful to put my foot down (best I can describe it is that feeling of hyper sensitivity you get after pins and needles where you don't want to move/touch your foot) but it's so variable that some days I walk normally, some days with a limp - I normally just tell people who notice that I sprained my ankle because it's easier than explaining what a syrinx is and that there isn't any cure beyond medication.

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