After decades of research into the cellular basis of chronic pain, McNaughton believes he has discovered the fundamentals of a drug that might eradicate it https://archive.is/e1W1X
How to deal with extreme physical pain
311–320 of 362 posts
Re: How to deal with extreme physical pain
#312I 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…
It's human nature. People like to offer solutions, particularly if they frequently see a loved one vent. Venting isn't free. So like you, I learned to stop sharing my pain in most cases.
Re: How to deal with extreme physical pain
#313Earlier quoted context omitted.
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.
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…
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
#314Earlier quoted context omitted.
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.
I had poor sleep for ages and was never overweight, which is true of most insomniacs I imagine. Sleep apnea may facilitate obesity but it doesn't cause it. It's calories in, calories out.
I think the strong correlation of obesity with sleep apnea however should lend credence to the idea that it at least exacerbates it. But more to the point, there are conditions that are very similar to sleep apnea but are misdiagnosed as such. And these may very well be more related to weight.
Re: How to deal with extreme physical pain
#315Earlier quoted context omitted.
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.
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…
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
#316I 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 tried to address that in a comment below but you both made it clearer.
It's hard to keep a neutral yet supportive stance toward others. We react or overreact due to our psychology and education (and mood at the time) but it can backfire.
I think this should be discussed because it's highly valuable for everybody .. both personally and for society as a wohle.
Re: How to deal with extreme physical pain
#317I 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…
This is terrible advice.
I ended three decades of migraines by following advice that they were triggered by food allergies to gluten and corn.
Re: How to deal with extreme physical pain
#318Earlier quoted context omitted.
I have a different story of pain medication gone awry. My wife had surgery and there was a hydromporphone pump where she could press a button. The button was then blocked for eight minutes. She didn't understand the system. Then I realized that it had two different beeps, one if the pump delivered a bolus and the different one if the pump was blocked. My wife and I we are both Deaf so we just didn't know. I requested…
Slightly funny story similar to yours: we were having our 2nd kid and my wife was given no2 gas as a painkiller. I got to be in charge of the dial that controlled the no2/oxygen mix. We started at, like, 40% no2 but then she said she was in pain so I dialled it up to 60%. She was still in pain after half an hour so I increased to 80%. 30 mins later she was in a lot of pain and I noted you could actually set it to 100…
Kind of similar? I've woken up under NO2/Desflurane 2 times in my life and another time had NO2 just didn't seem to have much effect. After the first time I've made it a point to tell the anthesoilogists of my previous experience but with no personal record it just keeps recurring.
Litocane seems to metabolize or otherwise fade in effect faster in me too than what most dentists expect but at least they listen.
Re: How to deal with extreme physical pain
#319About ten years ago I had around 9 months (maybe a little more) of chronic testicular pain. It felt like someone had kicked me in the crotch about 10 minutes ago, all day every day. I've been in more pain from some injuries I've had (bike accident), but this lasted for much, much longer. It also made sleeping difficult, as for some reason lying down was extremely uncomfortable. I ended up sleeping in a chair for seve…
It feels very strange to put out there that I've had the same issue, but it seems to be very common, and yet is rarely spoken about. I had the same path as you — infection, antibiotics (through an IV), and then a few weeks later the pain sort of disappeared! Now and then I wake up with the same pain, maybe twice a month, and it lasts for 1-3 days. But otherwise it's mysteriously disappeared. (I feared it may have bee…
I never had any pain or difficulty urinating when I had the pain symptoms. But what the article describes is interesting. If my pain comes back (fingers crossed it never does) I'll try to keep this possibility in mind.
Re: How to deal with extreme physical pain
#320Earlier quoted context omitted.
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…
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.
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.