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Re:How to deal with extreme physical pain by ludamad on Friday October 30, 2020 @11:40PM (#24948967)
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 by ignoramous on Saturday October 31, 2020 @04:29AM (#24949883)
I always appreciate advice (or any input, really) when it comes from someone with experience or wisdom regardless of whether they are a medical professional.
Re:How to deal with extreme physical pain by DoreenMichele on Saturday October 31, 2020 @05:34AM (#24950062)
This is maybe not completely clear, but one of the issues is that if you have a serious condition, you may know more than most doctors do about the condition. I mean you may know more about it than general practitioners and you will only have some hope of learning more from a doctor if you see a specialist.

So you have buckets and buckets of info and you run into well-meaning people who want to feel helpful and they toss out some random snippet of an idea without even really talking with you. It would be sort of like if you walked into a doctor's office and said "I have x condition" and they replied "Do you want X antibiotic?" without taking a history of finding out what your current complaint is.

And it becomes about their emotional needs. Even if they are sincere, it's exhausting to try to explain.

It's like if you go to a cocktail party and you spend the entire evening repeating your entire medical history to everyone you meet to satisfy their curiosity and you never get one minute to actually enjoy the party and socialize a little.

So you eventually just don't want to talk to people casually about it at all. Because it is one hundred percent downside for you.

There is a long-shot scenario in which maybe you will meet someone who actually knows something useful and is actually sensitive about how they talk with you about it and it's mostly not worth leaving that door open in hopes of connecting with that one rare person once in a great while because the rest of the time it is such a huge burden on your already limited time and energy that you are better off just betting that "This person cannot help me. Moving on. Yeesh."

So while I welcome sincere interest in my various problems, no, some random person who knows nothing of my background and just wants to get their jollies feeling "helpful" for five minutes isn't really going to enhance my life at all. It is all downside and I mostly want to avoid having certain topics come up.

Re:How to deal with extreme physical pain by zikzak on Saturday October 31, 2020 @09:20AM (#24951235)
I spent years having people tell me I should eat more fibre or try to not let myself get stressed out, etc. That stopped when the lower half of my digestive system was replaced with a very obvious ostomy appliance. Now, the visible reminder of my illness makes me different enough that they know there's no really shared experience and we talk about other things. That and my increasing resemblance to Quasimodo as my joints fuse and deform, of course. Anyway, just commiserating!
Re:How to deal with extreme physical pain by slothtrop on Saturday October 31, 2020 @09:59AM (#24951532)
I have found this to be true with respect to doctors. Ultimately though, where I made gains by gleaning from research papers or books, it comes from authoritative sources i.e. some who know quite a lot about the subject. I never had to meet anyone to get better, I just read books and papers on google scholar. But sometimes a random person online can lead me that direction.
Re:How to deal with extreme physical pain by DoreenMichele on Saturday October 31, 2020 @10:29AM (#24951753)
But sometimes a random person online can lead me that direction.

I really only discuss my condition on the internet these days. I basically don't tell people I meet in person "I have (diagnosis)." I have taken to telling kind of a little white lie that "I have a paper allergy" to explain my aversion to handling papers and even that has proven to be so much ridiculous bullshit that it is a factor in me quitting all my volunteer work.

It's aggravating because my ATM asks me if I want a receipt, no receipt or email me a receipt and doesn't need an explanation or doctor's note or invasive chit chat as to why I prefer it emailed me. The paperless option in most settings is deemed to be the environmentally-friendly option and doesn't require justification or putting up with lurid interest and harassing comments about my health, my lifestyle, blah blah blah.

I don't want to discuss my condition under any circumstance anymore where I can't just give people a link to explain X if I want to share info but don't want to spend a lot of time and effort repeating things I'm bored to death with repeating because while my condition and situation may be new to "you," it sure as hell isn't new to me, good god and please shut the hell up and leave me the hell alone.

Re:How to deal with extreme physical pain by loceng on Saturday October 31, 2020 @09:51AM (#24951480)
This exactly. Most people, including medical professionals, don't have the time or interest to actually, really listen to you - nor enough understanding to not require going into explaining detail and patterns. They are there to fairly poorly observe, ask a set of questions based on their observations - use responses by people who are less than fully self-aware and likely don't have the best self-observation skills either, and then prescribe - but not there to learn or understand; I'm convinced this role will be replaced by adequate diagnostics and AI within the next 10 years, save the institutions, unions, etc. trying to self-protect to save their jobs if they're not willing to adapt (and not require such a high salary for what ultimately will be a technician role - and training the system and protocol will be the role of serious researchers).

I do however have seemingly infinite amount of time to talk, share, and explain my story in depth if they are willing, wanting, and curious.

I am in this difficult position right now regarding doctors not understanding, and behaviour and decisions not being so much critical thinking and reason based but behaviour based on indoctrinated knowledge that's skewed by the medical industrial-institutional complex: in brief, my chronic pain causes severe executive dysfunction - and only recently was I able to try a dopamine agonist which is the only medication that's helped the pain and very significantly reduce the executive dysfunction - but only starting at .5mg dose, however I have only been able to get a .25mg daily dose after trying with 5 different types of doctors - including pain management doctors - because dopamine isn't commonly used for pain, it's "somehow" slipped out of part of their practices - much like how MDMA was demonized for many decades and now MAPS.org has proven its extreme effectiveness in treating things like treatment resistant PTSD; MDMA which can't be patented, so what better way to kill competition than a drug war.

Anyway, I have been struggling to see a neurologist and/or neurosurgeon - primarily as I am in Canada and the system is very slow - who apparently are the types of doctor who are less conservative when it comes to medications like dopamine agonists; used to treat people with Parkinson's for their tremors (and ~80% also have pain issues that it helps with), and also research shows dopamine helps improve executive function in people with Alzheimer's as well. The pain level and executive dysfunction level has me struggling daily however, life is very hard just waiting when I know just having a higher dose of cabergoline would greatly alleviate symptoms, so I've now initiated seeing a neurosurgeon and neurologist when I go to San Francisco for December.

I'm right fucked if a neurologist or neurosurgeon won't prescribe me a higher dose - and unless a good samaritan points me to how to buy it from a black market - then come the new year I will be done trying to fight; I've looked through tor browser those sites don't seem to sell cabergoline - a little surprising as it would seemingly pair well with other sex-related enhancers that are popular, since it can aid in reducing refractory period - I guess it's just knowledge that's little known.

Edit to add: I'm only "on the ball" so well this morning because I took .25mg last evening, so I have just that much more dopamine in my system helping me focus away from the pain - not be so distracted by the pain - which I only get to do once per week, the leftover of .25mg daily (1.75mg) leaving .25mg remaining of my 2mg weekly prescription; and I got two other important emails written and sent this morning, whether they lead to anything it doesn't matter - I just knew I needed to send them and I could instead of pain disrupting me from being able to put them together.

Re:How to deal with extreme physical pain by environment on Saturday October 31, 2020 @12:40PM (#24952845)
It is interesting that you benefit so much from Cabergoline. Are your problems also related to elevated Prolactin levels, Hyperprolactinemia? Bromocriptine would be cheaper than Dostinex/Cabergoline.

I do not recommend anything in this comment. If you benefit from a fight-or-flight state, the extra focus and pain filtering, then Atomoxetine/Strattera or Vyvanse/Amphetamine could be worth it for the extra Norepinephrine (and Dopamine).

Emsam (Irreversible MAOI, transdermal administration) and Moclobemide (Reversible MAOI) are also interesting in general. DO NOT combine these MAOIs with Cabergoline or the other drugs mentioned above. You could die from the drug interaction! Besides that, the benefit and side effect profiles are excellent. The dietary restrictions are not as severe as with the classic MAOIs. I do not recommend anything in this comment.

Re:How to deal with extreme physical pain by environment on Saturday October 31, 2020 @11:18AM (#24952115)
You can buy Cabergoline in bulk from Alibaba (China). Edit: Purity can be a problem. Testing is necessary. This may or may not be a legal option where you live.

Ignore the listed price and quantities. Use common sense to find serious sellers. You communicate with the seller to learn the actual price and shipping cost for the quantity that you want to buy. If the Minimum Order Quantities (MOQ) are much more than you need, then negotiate down in size and throw more money at the problem.

Another option is a pharmacy in Vanuatu: https://www.inhousepharmacy.vu/p-1991-dostinex-tablets.aspx

Re:How to deal with extreme physical pain by DoreenMichele on Saturday October 31, 2020 @10:46AM (#24951885)
Losing executive function is just horrible.

At the risk of being the exact kind of asshole so many of us are decrying here: I know something about healing neurological crap and one of my sons has recovered lost executive function as a consequence. (Though it took years.) Hit me up if you want to just TALK with me on the off chance that it is moderately useful to you to some degree.

I don't like giving advice per se. I don't like saying "You should do X!" But I'm happy to talk about some of our experiences and some of what I think about neurological stuff (and possibly life, the universe and everything because help may end up being in some seemingly unrelated topic).

Re:How to deal with extreme physical pain by loceng on Saturday October 31, 2020 @09:31AM (#24951324)
Indoctrination is real when it comes to medical professions, there are major pitfalls with the current system including regulatory capture by for-profit interests, e.g. the medical industrial-institutional complex.

I've learned the vast majority of what I've needed to heal not through the mainstream medical system - and more often than not there's disbelief, skepticism, or false narratives they react with simply because they didn't learn it through their narrow specialized path, being selected primarily for their memorization skills and not critical thinking and reasoning skills.