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.

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.

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.

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.

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.

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.

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

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).

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.

Someone finds out you suffer migraines, “oh drink some water!”

Also chronic conditions tend to have cycles of weeks to months.

People get tired of dealing with you much faster. So you learn to hide your symptoms as best possible.

Works for me. Headaches without. I often wake up a few times each night to drink water to get rid of dehydration headaches. And I carry water with me all the time, thirst all day, headaches when it runs out. (like yesterday). Worse in the desert.

One guy I worked with suffers from extreme debilitating migraines and only drinks about 1/4 of the amount of liquids that I find necessary to avoid headaches. (which is about ~3-4 litres/day). I would tell him if I did the same I'd have major headaches too. But no, he doesn't want to hear it, says water doesn't work. Too dumb perhaps.

Actually I can feel a slight headache now so will go drink some more water to get rid if it. If it hurt more I'd reach for 400mg of ibuprofen or two and, of course, more water.

"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."

Banana_giraffe isn't alone.

I had chronic obstructive sleep apnea and I quickly got tired of unsolicited woo-woo illogical suggestions to treat it.

Exercise and meditation doesn't fix problems with bone structure.

Sometimes people just get a bad luck of the draw, and no amount of "hard work" can fix genetics.

There are low hanging fruit. Dropping weight, removing processed foods, exercise are your bare minimum of what everyone should try for solving Medical problems.

Now a lot of problems can be solved this way. Just not everything.

I suffered exercise intolerance for decades. No mater how hard I tried I would need two weeks of recovery after any work out. Turned out I had underlying problems that none of the what I mentioned above were going to fix.

However I still feel strongly that if I’m going to complain to a doctor, I should be doing my part with diet and exercise.

Idiopathic intracranial hypertension Also called: pseudotumor cerebri.

Description A condition that occurs when pressure inside the skull increases for no obvious reason.

Had POTs quite bad.

Spinal tap gave a year of relief.

Now I use Diamox. Huge improvement

I brought it up to my sleep doctor. I said I thought I had it because of my weight, he laughed at it. He said, "If you are overweight, that can exacerbate apnea, but IT ABSOLUTELY DOES NOT CAUSE IT. That's absurd."

My sleep doctor is suuuuper fit, and very lean. An avid runner. He said that he has a VERY bad case of sleep apnea. I was floored!

He said you either have it or you don't.

So case by case?

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

> Expert opinion in a clinical review article from the British Medical Journal, Obstructive sleep apnoea, concluded that weight reduction programmes are not to be thought of as curative but rather as adjunctive for people with obstructive sleep apnoea syndrome (OSAS) [Greenstone and Hack, 2014].

> A meta-analysis of 5 small studies (n = 129) found a reduction in the apnoea/hypopnoea index (AHI) by –6.27 events/hour following supervised exercise training. This demonstrated a reduction in the severity of sleep apnoea (with minimal changes in body weight) with exercise [Iftikhar et al, 2014].

Below she’s fine.

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.

It’s actually pretty fascinating how many common and sometimes serious medical problems are known to be fixable with “woo-woo” advice like “don’t eat like shit” (advice that 95% of people don’t follow). E.g. type 2 diabetes and refractory epilepsy now have purely dietary interventions as front-line treatments. We have weak evidence that this will probably work for many other common diseases. But just 10 years ago you would probably have been accused of “woo-woo” for making this claim about epilepsy or diabetes.

Most people that are around me enough get a sense of this. Most don't know the depth of it.

What gets old is when I deviate from the diet, by say having a glass of beer at a social function, it's a big deal. Everyone's concerned about me, which I appreciate, but I have to justify the beer by pointing out how it fits into my diet, and how I've planned for this beer. I have had to pull up my diet plan on more than one occasion to make someone happy.

If I was known to have problems adhering to my diet, and asked for this sort of help, then fine. I don't have that, and I've tried to tell people that I know what my diet is. I try to be nice about it, and ask people to just let me be.

Instead I get to defend every beer I have. So, now I'm the teetotaler in the office. It's just easier than the alternative. But it's damned annoying.

One beer every 3 months is proof my diet is a problem? For a condition you know nothing about? Really. Fine, then it's useless, and I've surrounded myself with idiots, all of my careful testing and attempts to understand my condition have failed.

This kinda of nonsense, where I debate the very meaning of "me" to some extent is tiring. Even if I'm wrong in all of this, I'm not harming you, you're someone online, but I try really hard to not be a burden on anyone I come in contact with. I actually try to be a net positive to the world, in my small way. It's already hard enough for me to wake up every day and face the world without just ending my pain. Don't make me debate my sanity while I'm at it.

I’ll have a chocolate donut about once a month.

I have to perfect in my diet for days in order to enjoy it no penalty. A second one is not an option.

If you think somebody might benefit from your advice, you could ask. "Hey, I have been through X, would my opinion be useful?" But before you do that, maybe think about the vast number of people who have already jumped in to offer unsolicited, unhelpful, and unwanted advice. And maybe just trust that if a person needs your advice, they'll ask you for it.

I think this is unfair. The response is probably calmer than what I would have passed back in my best effort, had I been the one engaged.

> move on if not interested, but blaming people for trying to help in a social setting

On HN (and with a higher bar), I would be blaming people for talking past me in seemingly bad faith.

First, realize that the person with the chronic health issue has probably put a lot more time and effort into addressing the complexity of their experience.

Second, realize it is in fact exhausting to constantly get unsolicited advice.

Third, realize you presumably are not the only person this person with a chronic health issue interacts with and that most people do not take special care to avoid giving unsolicited advice.

Fourth, realize this means you should assume that this person is getting a lot of unsolicited advice.

Stop for a moment before speaking at this point. Ask yourself, is your additional one iota of advice is highly likely to be both completely novel to this person and efficacious for their issue? Your advice is unlikely to be both those things simultaneously but instead forces this person’s focus back on an issue they are likely trying to avoid thinking about.

Okay, given all that, I am not saying “don’t ever give advice”. All I would request of people is that most of the time, ask first. If your advice is critical, novel, and highly likely to succeed, perhaps intervene immediately. But otherwise, the person will appreciate this opportunity to decide whether or not to interact with input regarding their chronic issue, it’s very unusual that anyone takes care to consider how it feels emotionally to be constantly the person who needs to be told how to live.

Imagine you were telling someone what you had for lunch. You had a sandwich. They ask what toppings you had. You say you had these particular toppings. The person then says “you should try next time adding this other topping, that would have made your sandwich better and in fact would greatly improve the quality of your life”. Unfortunately, you’re allergic to this additional topping, which you dutifully inform the other participant in the conversation.

Okay, that’s fine. Maybe it would have made the sandwich better in their opinion, and sometimes that kind of stuff is okay to let go. But now imagine this conversation happening with multiple people every lunch every day for the rest of your life. Pretty soon you’d start wondering why the fuck all these people have such strong opinions about your lunch. You would also notice that none of these people ate any sandwiches with the topping they insisted would improve your life so much.

I have a chronic health condition that is better managed now, but at one point caused debilitating pain. I stopped talking about it and tried to avoid giving any indication I was unwell at all outside of intimate social settings, because the sheer volume of unsolicited input I got about how the right way to deal with the fact that a surgeon shredded the nerves in my abdomen was to take ginger and rub lavender essential oils on it, or just use CBD, or have you tried hopping up and down on your left foot on a Tuesday immediately following the vernal equinox...

This is also more unconventional than typical, no one ever recommended I take ayahuasca, so for me personally it would be novel enough that it wouldn’t be frustrating to get recommended it by an acquaintance. This is my perspective.

I would caution against the mindset in the middle of your paragraph though (“they must want to be healed”). I wanted nothing more to be healed, it’s just after 36 months of being poked and prodded by medical professionals it always struck me as a little haughty that someone else I didn’t know at all would presume to know enough about my situation to think their advice would be useful. But this is just my experience, and I only ever got useful unsolicited advice a couple times.

I just think people need to be emotionally in tune with their conversation partners, and if you don’t know them well enough to read them then you probably don’t need to be giving them advice anyway.

And yet, the path to Hell is paved with ...

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.

It is crazy hard. It’s like tech support on a Linux running Oracle with grandma.

At least that's the theory.

https://www.mygenefood.com/blog/zonulin-leaky-gut/

I can see how it would get annoying. If you view it as love, instead of nagging, it might get a little less annoying.

It's the opposite of actually caring about a person. It's caring about them making you feel good about going through superficial "caring" motions while doing absolutely no good and lots of terrible harm when it is added up over time for the person with a chronic condition whom absolutely everyone wants pats on the head from for pretending to care while doing not a damn thing to actually make their life better in some meaningful way.

If people care, they do what actually helps you rather than insisting you make them feel good for superficial bullshit that only adds to your suffering.

This is a very simplistic way to look at people. A lot of people are misinformed or not thoughtful or don't fully understand your experience or frankly not that bright. The idea that people who genuinely care never do any damage is beyond ludicrous.

People who actually care will be okay with being told "This isn't helping. Please just stop." But that's not what the vast majority of people do.

The vast majority of people want it acknowledged that they are good people because they care about you and are trying to help and all this shit.

If they cared, they would drop it when asked instead of doubling down on trying to demand that you make them feel like a good person for fucking with your life and trampling your boundaries.

I also have a serious condition. No, most people absolutely do not actually care about my welfare.

I have tons of firsthand experience with this and I'm not budging one inch.

See it in kids constantly, adults often.

Kids getting mad at the cat for not liking being dressed in doll clothes.

Yes you care about the cat. However now everyone including the cat is unhappy.

Childish behavior, except it still hurts when loved ones get mad at you for not recovering fast enough.

Parents offered me some pills (blood thinners) that might solve some problems.

They got very upset when I refused without a doctors consent.

Only thing I wanted from them was emotional support. Instead I had go cut them off for a year.

All because they couldn’t fix me.

As someone who had to follow a strict diet for a while, I know for a fact that the people who stuck their nose into my allowed indulgences did not care about me nearly as much as the people who actually cared and knew I was capable of managing my own diet.

Seriously, some people have no common sense and/or are just arrogant. Jumping into a situation where you have minimal information and assuming to know best is the hallmark of a fool.

Edit: Please don't downvote a clear question. The truth is, you can't know another's intentions in most cases. It's very possible parent does know them in these cases for other circumstantial reasons. In which case I'd ask, how do you know that extrapolated to everyone else who asks those same questions?

I'm sure someone cares, but the majority of such folks? Nope.

I was once watching a crappy move, but it had one gem in it. The protagonist had lost the use of his leg in the Civil war, and he sought compensation for it, and received a lot easier than expected. Throughout the movie, he keeps wondering why it was so easy to get the money - he expected a fight. Towards the end, the revelation hit. They didn't pay him because they cared about him. They did it because they wanted to feel better about themselves. They did it so that they could walk away feeling tall.

And so it is with most advice: They do it because it makes them feel like they've done a good deed, and who knows - someone may even benefit from it? If they didn't, then no harm done.

That last sentence is quite wrong, though.

After hearing this, I got fairly good at figuring out who is trying to help vs who is trying to walk away tall. A little extra engagement with the person can usually reveal this.

I've learned from enough experience - both in giving and in receiving advice - that when you try to help someone, you should take on the burden on yourself. It becomes your responsibility to understand the pain points of the other person, know what he's tried, etc. This is exactly what random advice typically isn't. It's well known that saying "I had a similar problem" and talking about it is not empathizing[1]

One of the worst jobs I had involved a very knowledgeable person who would try to give advice whenever I was stuck. His advice often didn't work because he didn't understand the problem well, and made assumptions, etc. Every time he tried to help it was a huge time sink - to the point that I would mention my problems only when he wasn't around. Not exactly analogous to this situation, except to point out that this person never really understood the burden of helping someone. When you help someone, work with the person till the problem is resolved (or till you can't help). He failed as a teammate because of this.

(For those who recognize the movie - yes, I am taking liberties).

[1] Seriously - this is standard advice you'll find everywhere: When someone tells you their problems, do not respond with how similar your problems were - took me years to understand why.

I really like this story. It's definitely a tell when somebody only wants to help when it's easy and gives up right away. Although, that can also be a factor of them realizing that helping is beyond their ability, which can be different from not caring.

I think maybe a better tell is, how much time do they spend asking questions, versus giving "advice". Listening is nice but not always impactful. Talking is cheap and often irrelevant. But a good question can change your entire worldview. Or better yet, make you change your own worldview.

Did your coworker help everyone in this way, or was it just you?

I had to go through jaw surgery. It was worth it.

People suffering from sleep apnea seem to have bad throat muscles and big tongues.

Also if I’m in a flare, those items will swell noticeably

Hold the stretch, repeat the same for a couple of minutes and your muscles will ache. This also unclogs your sinus, so don't be surprised if you need to swallow or clear your nose. Also, don't do the full stretch at the first try. Warm up a bit first.

There are several others, but take too much time to describe here. You can research online. This is not obscure information. My doctor gave me a writeup. Please note they take a few days to take effect. Personally, I found them effective within a week, but YMMV.

Singing also helps - less effective but more fun (well, for you, if not others who will wince).

https://www.sleepfoundation.org/articles/mouth-exercises-to-... https://www.cpap.com/blog/exercises-alleviate-sleep-apnea/ https://www.southfloridasinusandallergy.com/14-convenient-ex...

In my case I had to tell people because I was quitting my job to have the procedure done. Some opinions from people in the healthcare field (nurses, etc) said I didn't need surgery because I wasn't overweight or old. Well they weren't maxillofacial surgeons.

Perhaps it's nothing more than future snakeoil but claims that humans will be able to CRISPR pain signals away in the not too distant future gives me hope. Opiates scare the living sh*t out of me.

I love Scott, I've followed and read him for a long time. From his involvement in the diabetes community and his glucose tracking projects, to advocating for .NET and MS, and just opening doors for others, it's clear he's a wonderful person.

From his posts, he's got an amazing family and I wish him and them all the best.

"Why aren't you coming to the company party?"

"Because that would likely exacerbate my chronic headache and I might be unable to work for several days."

"Oh wow, is it that bad? Have you tried acupuncture? My cousin had a headache and that really helped..." And a few minutes later: "Come on, the party will be fun, how bad could it be?"

I've learned to manage my condition well enough that people generally don't notice any problems. I've probably tried any remedies you can come up with, and so far the best way to cope is to live a boring life and go to bed at the same time every night after a peaceful evening. But because I'm not writhing in pain during the conversation, some people seem to think that I'm just coming up with excuses to not come to their party or whatever they are asking me to do.

Everyone in the group has EDS or is a caretaker, so they "get" it. It's consent-oriented because people won't give you advice unless you post asking for it. It doesn't turn into a pity party because the forum is about asking questions and getting answers. The post history has everything from wheelchair tips to relocating joints. Direct medical advice is banned, only suggestions of what to ask doctors are allowed. It's nice.

Sometimes I really want somewhere I can scream into the void about my pain and degeneration though. I'm not sure of a psychologically-healthy way to scratch that itch.

Literally have to drive 3+ hours/fly for the majority of my major treatments so far.

Hang in there, I hope they can patch your leak!

I was initially thought to just be suffering from POTS by some pretty well respected docs at Cleveland Clinic, but there were some outlying symptoms that just didn't add up. Ended up getting to see Dr. Carroll at Stanford and Dr. Wouter Schievink at Cedars-Sinai and they were able to visualize a leak, still in the process of trying to get blood/glue injections to work until I get through TOS surgery. After that it may end up coming to surgery for CSF as well.

Also, I hate to sound pessimistic but just want to try to give advice - from what I've heard anecdotally, TOS will slowly progress, especially in those with EDS. The younger you have surgery, the better the outcome as well. I tried to stick it out with some pretty seriously targeted physical therapy and bracing until I was 20 but shit just kinda hit the fan and I've had to opt for surgery.

There are 5-10 surgeons in the U.S. that are at the point of having really great outcomes, most notably Dr. Dean Donahue at MGH. I waited like 9 months to initially consult with him. As much as I loathe Facebook, here are some great groups with regards to knowledge of good surgeons if you ever decide to pursue that route. A bad surgeon for TOS is definitely a bit of a death sentence.

https://m.facebook.com/groups/15231937182

https://m.facebook.com/groups/205345126171314

P.S., apparently there's been a good amount of POTS cases induced by COVID-19 and not responding well to treatment. Doctor at Cleveland Clinic mentioned it to me, said they were a bit dumbfounded. Will definitely be interesting to see how things play out long-term, will hopefully end up giving POTS some more awareness it deserves. Also, I have great hope in Neuralink for EDS pain in the future. Hopefully.

I've been seen at Stanford by Dr. Jaradeh in autonomic neurology, who found delayed orthostatic hypotension with sparing of the parasympathetics, caused by mild to moderate dysautonomia (the drop in blood pressure gives me orthostatic tachycardia; strictly speaking, this isn't POTS, which has no drop in blood pressure). I've got GI symptoms as well, plus widespread muscle tenderness, pain (and lately, burning sensation) to go with it (mostly in my calves and hips, but even in weird places like my jaw muscles). There seems to be no inflammatory cause, though, since rheumatological and inflammatory neuropathy workup has been strictly negative.

Now, I've never been diagnosed with EDS, although I am tall and thin enough to classify as borderline marfanoid habitus (I'm a couple inches longer in my arm span than my height.)

I'm pretty much at my wits end with what could be causing the POTS, though. As of now I am presuming it to be instigated by chronic pain radiating from the chest to the spine.

The really troublesome thing is my "TOS" doesn't really seem to be TOS at all, because although it continues to cause me great pain in the thoracic outlet area and pec, none of the diagnostic criteria for TOS show up when I do provocative tests like raising my arm. Instead I've been diagnosed by pain management as having intercostal neuralgia of the first rib and possible costochondritis. I can push my finger below my clavicle where it meets my sternum and elicit a lot of pain, which radiates to my pec. Earlier this summer I had a diagnostic nerve block in the intercostal area of the first rib, and it killed the pain locally (my neck and shoulder are still in a lot of pain).

As of now I am hoping a procedure I have scheduled to zap the first rib area will numb the pain long enough to do some kind of physical therapy consistent with what TOS patients do. The procedure is shy of RF ablation of the intercostal nerve, and is instead what's called pulsed RF neuromodulation, which doesn't quite melt the nerve, but is meant to interfere with the pain signals (much like TENS).

I've read in the literature that POTS has been seen in TOS patients. What's frustrating to me is that I am in about as much pain, but because as far as I can tell it's not actually TOS, I either don't need or don't want something like surgery. And yet here I am years later, having reassured myself that surgery wouldn't be indicated, but wound up with autonomic dysfunction / POTS anyway. In a way I regret simply not pursuing pain management earlier, and yet costocondritis isn't supposed to last this long from what I've read.

(I have never been referred to a TOS surgeon for evaluation, but I think about four doctors by now have had me do the provocative TOS measures, with negative results of course. A part of me thinks I should just self-refer anyway and have them at least do a TOS ultrasound to see what's going on.)

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 especially hard for people with a technical background to grasp because they are natural problem solvers and they will immediately switch to problem solving mode.

Instead of trying to solve the problem (which is not what the other person needs), they'll be able to connect better with the other person by empathising with them, validating what they are feeling and deferring to them for what to do next.

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 I hadn’t gone through this trial and error approach, I would not have lived through it all.

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?

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 still remember that because it felt somewhat as an eye-opener that people can just be that candid.

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?

(Of course, actually articulating those needs on the spot is yet another skill, so it's still easier said than done, but it might be worth focusing one's learning efforts on.)

But yeah, some have some, haven't I'd say. And I agree with you 100%, it's extremely difficult, and much more difficult to do it on the spot. It feels like it's one of those skills that could take a lifetime to perfect.

But definitely agree that it's worth focusing one's efforts on as it seems like you'd get a lot more of what you want out of the world and other people.

"Mind your own business" is something that could use a little more respect now and then.

In the 3rd year, we had a class with him. After the second lecture, I had so gotten accustomed to him that if you had asked me who the professor with the limp was, I would have honestly replied that I didn't know any professors like that. The fact that I had gotten to talk to him and see him teachn so I knew more about him than justn "has a limp" probably played a part.

I guess I have no point to make with this anecdote, take from it what you will.

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.

Imagine you go to a cocktail party, tell someone that you're a software developer, and they immediately tell you that you should "do blockchain".

The next morning, you talk to your neighbor on the way out, mention that you work for a tech company, and they say "You should try this Rails thing!" "You mean Ruby on Rails?" "Oh, you've heard of it?"

Now imagine having variations of this conversation every single day, only it's about the intimate details of your personal life.

You wouldn't give career advice to a fellow developer without at least taking a moment to understand where they are in their career, or what their specialization is. Good advice for a junior developer writing WordPress plugins is not good advice for a mid-career embedded systems engineer, which is not good advice for a senior machine learning specialist.

Don't give advice to strangers about chronic medical conditions without first taking a few minutes to learn about their situation. If you're not comfortable asking about how long they've had the condition and what remedies they've already tried, then you're in no position to offer advice. It should go without saying that if the person doesn't want to discuss the details of their condition, then they don't want advice.

Context matters, people.

I know I'm coming off rude here, but the truth is, I don't want your advice on how to fix things, or worse, your advice that it's not as bad as I think it is, and that I can do whatever activity that I know will cause me problems tomorrow.

It's actually helpful. The bottom line is that I want to be supportive. And if I don't know how, I might make a guess at it and that guess might be the natural response of "try to help fix their problem."

It makes sense that you just don't want to hear that. I can empathize avec depression. Just listen to me and be patient with me. You can't fix this and it's kind of insulting that you try, as if I was too dumb to think up your idea.

(This also relates to software reviews too: I've spent a week on this problem. You suggesting I'm doing it wrong after five minutes of review can be really insulting)

On the contrary, this is excellent advice! I know I feel a tendency to want to share my knowledge with friends and family because I think it may help. I should know better, because I do not like being given advice, and yet I have a lot of trouble avoiding giving it myself. When I try, I am accused of being aloof or uninterested. A hard line to walk, keeping my mouth shut is enough work all by itself ;-)

https://www.youtube.com/watch?v=1Evwgu369Jw

In short, sometimes people need connection to others; problem-solving mode isn't always the most useful path.

I just always default to problem solving....

https://m.youtube.com/watch?v=-4EDhdAHrOg

"Damn that sounds awful. I hope you'll find a way to get better."

In almost all cases, I like this quality and the underlying optimism it implies, but I also understand how it can be annoying and often come across as unconsciously insensitive.

Sometimes, expressions of sympathy are all that's needed or wanted.

There are communities out there who value deep and non-judgmental listening. They recognize that it can be an act of aggression to offer unwanted advice. They have a healthy interest in others and know when to yield when it's really not their business to know.

If you could find such a community, you might feel better. You might feel understood.

I'm agreeing with you, if that isn't apparent. This is a topic near and dear to my heart and I keep trying to figure it out and ...failing.

My Reddit has five members and no traffic, basically. I am stilling thinking on how one would position and promote such a thing.

(Edited for accuracy.)

/r/covidlonghaulers on the other hand is busy working out how to exclude various people and becoming pretty hostile and I think shows one of the ways definitely not to do this.

I have a form of cystic fibrosis, so a chronic fatigue group is unlikely to serve me well. Though I've "joined" and will keep my eye out for good ideas.

Many years ago, I joined an email list for parents of people with CF (yes, I also have a child with CF) and when I joined it was mostly prayer requests: "My child is facing X surgery. Please pray for us." and then outpourings of sympathy because people were so paralyzed with fear (because CF is really deadly and doctors can't fix it).

Under my influence as just a member, things gradually morphed into something more like "My child is facing X surgery. Have you or your loved one with CF had this surgery? Any pros or cons I should be aware of? What were your experiences?" and it was vastly better.

I managed to get this group to follow the principle that if you reply, you should tell your story and add new info and absolutely not get mired in the usual internet forum pattern of everyone arguing either for or against X. So if you had ten replies, you had about eight or so different personal stories and you could glean new and useful information of some sort from most of the replies without people competing over some sort of nonsense.

But the fact that I was the driving force behind that change helped make it really problematic for me to participate at all. Old timers who wanted to be the center of attention were jealous of me. I didn't want to be the center of attention and didn't yet know how to really successfully pull that off and being the person who had orchestrated those changes also made it very problematic that I had an explicit goal to not become some local "celebrity" and have everything revolve around me.

So I have firsthand experience with what works well for a health discussion group, I just don't know how to attract people to a health discussion group or how to position one from the get go as "We are here to talk in this way about health stuff rather than the usual BS for how online support groups usually work."

Most online support groups, whether health-related or not, are environments where it's really hard to talk about what actually works for fear of "blaming the victim" because, inevitably, some of the people with the worst problems are people who are their own worst enemy and it's never acceptable to in any way suggest or even imply that "maybe you should try not doing X." And that piece is something I don't have a solution for.

Health groups suffer the additional burden that pretty much everyone there is cranky and short tempered and feels awful. It's a pot constantly on the verge of boiling over at the slightest excuse and it's really hard to manage that element of it in a way that is fair and humane for all parties.

Plus there is inevitably a few people who are largely housebound and are trying to get their ego needs and social needs and so forth met through being "important" in some way to the group and these people inevitably need everyone to defer to their wisdom and agree with their ideas and they are often talented at gaining allies and so forth and the entire discussion ends up really revolving around this social nonsense and not really being about discussing health topics.

I set up a site called r/HealthWorks ages ago. I've tried repeatedly to figure out what to do with it and I remain stymied and that may never change because the truth is that I have spent nearly two decades getting healthier while the world calls me a liar and a teller of tales and accuses me of being mentally deranged, so there is no place it's really acceptable for me to talk about health stuff.

I've spent a lot of years trying to not end up like Semmelweis, who -- unlike me -- was an actual physician with actual studies to back up his crazy claim that doctors should sterilize their hands before delivering babies. Nonetheless, he ended up committed to an insane asylum where he was basically beaten to death in short order.

https://en.wikipedia.org/wiki/Ignaz_Semmelweis

I'm a former military wife and homemaker and had an entry level job with Aflac for a few years. The world is vastly less willing to listen to me than it was to Semmelweis to the point where I have been told that it is my fault people attack in me forums in violation of the supposed rules and I am the problem and I have been banned from more than one forum for the crime of just trying to talk about my life and trying to find some means to discuss health topics because my life literally depends upon my ability to seek out good information.

Hacker News has been the least worst place for that and even here I have had people attack me and tell me I deserve to be attacked for talking about "my cockamamie ideas" and that sort of thing. So it's not like it's some kind of safe zone for me, it's just a place that tolerates my presence to some degree and I can occasionally talk a little bit about health stuff, but it's really not adequate to my needs and the burden of this whole thing has taken a tremendous psychological toll on me.

I have a lot of baggage over the whole thing and I often feel like I am losing my marbles and that only makes me all the more unable to find some means to engage effectively in discussion of health topics.

So I don't have a solution, but I'm actually a talented moderator and I actually know a lot about fostering good discussion on health topics, I just have no means whatsoever to establish a group of people anywhere on planet earth who actually want to talk with the likes of me about health topics.

Most people have made it abundantly in-your-face super clear that if they must choose between slow, torturous death or being polite to me, they would much prefer slow, torturous death and I left all the CF lists I was on years and years ago.

I know exactly one person with CF who sometimes talks with me (edit: Other than my son, obviously). She hunted me down after I disappeared from all the lists because her number was up and she didn't want to die. As far as I know, she is still alive, though I haven't heard from her recently and she's now past the age of 40 -- which is quite old for classical CF -- so it's possible she's passed on and I'm just never going to be notified by anyone if/when she does die. ¯\_(ツ)_/¯

So we probably have nothing to really talk about.

The last community I joined ended poorly when I didn't, err, react well to the advice that I try going to church more.

I do need to work on my mental health side, and a community is a good way. I'll dig into that.

a) turn your back on the woods and return back to the usually-accepted and documented approaches and try them and their variations again or

b) continue in the unexplored woods.

For (b) to work you must try everything you hear. But you say you have chosen NOT to hear. If you want to live in ignorance and pain, by all means, help yourself.

But if you continue into the woods, it is the "Auntie" remedy, the anecdotal, the accidental personal discovery that will finally help you. IOW you have no choice: open up and listen to the "woo remedies" for there is nothing else for you, having exhausted what is "known". And when you find the remedy, no one will hear you speak of it, since it will be "anecdotal".

"There are more things in Heaven and Earth, Horatio, than are dreamt of in your philosophy.' - William Shakespeare

> But you say you have chosen NOT to hear. If you want to live in ignorance and pain, by all means, help yourself.

I do not want to live in pain. I continue to try things. I've lived with this condition longer than you might guess, and I have a few lifetimes of things left to try. I know some things that will help, so I do that for now, but I have no end of things to try in the future.

Stop assuming you know what's in my backlog. Stop assuming you know I've given up. It's all just tiring. If I had a lack of ideas, I'd ask for help. If my doctors aren't helping, I'd fire them, I have fired doctors that don't help me. And I'm not opposed to firing all doctors and finding other sources, but for now the doctors are doing good for me, and the provide avenues that aren't available via other means. For now, they're helping, they're communicating with me, and working with me as I test things. I hope to one day get to the point of no pain at all, but I also need to be able to get to a place of managing the pain I do have, since it's possible, indeed probable with my condition, that that's the best I can hope for.

And in case it's not clear, I'm not exactly speaking directly to you. I'm speaking to the mythical person conglomerate that you fall into of people that talk to me like this. So many people seem to assume they know more about my condition with so much less information, including cases like this with basically no information. Please stop assuming you know more about my condition than me.

I literally had years of being prescribed different types of SSRIs for "mood" when my real problem is dystonia. My doctor, a specialist, finally revealed she's not "allowed" by the insurance company to prescribe the anti-Parkinson drugs that I can easily buy with bitcoin.

I don't I know you don't want advice, but my advice is fuck it you may not be a doctor but you only live once.

    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 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...

If the person talks about it most will interpret that as complaining or having negative view on life.

It’s quite hard for me to watch as my loved ones get rejected by people in their environment if they sometimes mention their pain.

My advice is always to just not talk about it. I feel like most people today just don’t have the capacity to be emphatic, instead they give advice and get hurt when the advice isn’t accepted, accusing you of being negative and not accepting “help”.

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.

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.

I've stopped going to docs and listening to such people, and instead focused on overall strengthening. This strategy is mostly based on what kind folks at HN have shared in various threads as having worked for their RSI, and suffice to say, it has helped (not cured) much more than any other advice.

As a former marathon runner, I tend to stick to the adage "listen to your own body" along with medical advice.

I ended three decades of migraines by following advice that they were triggered by food allergies to gluten and corn.

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.

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.

Things came to head when I was on holidays, in a hotel lying on a double bed getting some rest. The double was two singles pushed together. They moved apart, and my body fell between them but my arms unable to move remained on the beds, forcing my frozen shoulders to do things they didn't want to do. My wife saw the end result written on my face, and decided something had to be done. She traipsed between doctors, one of whom said I should see a physio.

After a couple of visits the physio said the pain was caused by muscles pulling the wrong way. The initial injury (a sprain caused by my throwing a barrel onto a truck) had triggered an avoidance mechanism, where my mind had learnt all sorts of tricks to avoid triggering the pain. The result was atrophied muscles in some places, overworked ones in others. He gave me a few elastic bands, toys really, and exercises using them.

The exercises weren't particularly onerous - nothing as tiresome as a 5k jog for instance. Just 10 or 15 minutes each morning. To say I was dubious was an understatement, but I was paying for it and the discipline I force on myself to is either stop paying or do as the man says.

It took 6 months. But it was gone. Now it is as if it was never there. I've never looked at a physio in the same way again.

I have impingement syndrome in one shoulder and it flairs up every once in a while. That shoulder has never been the same since the injury, but it's not nearly as painful or debilitating as I hear frozen shoulder is. I should probably do exercises/stretches more often so it doesn't flair up or get worse.

And that's usually not how it gets interpreted so I do a lot less of that than I used to do.

In my case, give me nothing, no sympathy, no opportunities to talk, no anything. I deal with stuff by not thinking about it, tuning it out. If someone tries to 'help' with suggestions, they're forcing me think about it and the huge chunk of my life I've lost to it. That hurts deeply.

So, find out first. If someone wants to talk they will, if not, don't bring it up.

Generally speaking, don't offer fucking stupid suggestions ("have you seen a doctor?"). Don't tell me repeatedly doing X is the right thing to do when I know it will make things worse (happens rarely but is very annoying).

Don't offer me psychic healing, or offer to pray for me (unless you've found that that person is open to that. I am not and it will infuriate me).

HTH!

Edit to add: asking a question, if they're willing to answer - they don't have to, in case someone might know of a treatment or research they're not aware of yet, warrants being asked - unless we as a society want to be weak, shy, disengaged, and isolated in our suffering.

There exists many chronic conditions which cause pain.

I sound like an infomercial pitchman but that book changed my life. I had a massive structural issue that was either going mean a knee replacement or dealing with "you won't walk right ever again". Well, it turns out there was a third option.

[1] https://www.amazon.com/dp/B00FOTRPJQ/ref=dp-kindle-redirect?...

It sounds woo, I know. I was so fucking tired of people giving me their quack advice too. This was the one thing that made sense. And it literally changed my life.

I guess the mind-body prescription isn't prescribed for celiac disease or my other health issues, because finding out that I had those conditions was the key, not Dr. Sarno's advice.

One of the things Sarno advises before taking him on is that every other medical condition that could possibly be relevant has been investigated and ruled out.

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 actual human being who maybe actually had your problem and found something useful to help with it.

I think if I were you, I would reconsider how you view these situations.

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.

Did you try (increasing exercise/water intake/sleep/just not sucking)? How about (decreasing gluten/carbs/aspartame/"toxins"/bogons)? it's just low-hanging fruit.