How to deal with extreme physical pain • Hacker News Board

Re: How to deal with extreme physical pain

#321

Post by DoreenMichele » Sat, Oct 31, 2020, 2:32 PM UTC

DrAwdeOccarim wrote: post #300

DoreenMichele wrote: post #248

Earlier quoted context omitted.

Thank you. 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 wer…

Thank you for your comment, it was really illuminating. I work for a company that is starting clinical trials for a new type of CF treatment. Let me know if you'd like any info.

I'm guessing that would be some drug trial or other and I am off all drugs and much happier that way. I'm guessing "any info" would be "how to try to get in on the trial" and not "this is what we are trying and what our hypothesis is."

So we probably have nothing to really talk about.

Re: How to deal with extreme physical pain

#322

Post by DoreenMichele » Sat, Oct 31, 2020, 2:46 PM UTC

loceng wrote: post #313

DoreenMichele wrote: post #257

Earlier 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…

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 e…

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

#323

Post by environment » Sat, Oct 31, 2020, 3:18 PM UTC

loceng wrote: post #313

DoreenMichele wrote: post #257

Earlier 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…

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 e…

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

#324

Post by xyzzy_plugh » Sat, Oct 31, 2020, 3:42 PM UTC

nicklaf wrote: post #240

xyzzy_plugh wrote: post #229

Earlier quoted context omitted.

Funny, my wife was put on Cymbalta for a bit and the side effects were absolutely the worst. Then, she started tapering off and things got so much worse -- brain zaps, nausea, starry vision. We even got the drug compounded to a comically small dose to taper with even smaller steps, and it didn't really help. So, while your advice isn't wrong, drugs work differently for people. Great for some people, terrible for othe…

Hmm. I was prescribed Cymbalta and wrote about the reasons for that in a sister reply to yours, and your post reminds me why I have been hesitant to take it. If I may ask, did your wife's post-withdrawal symptoms eventually subside?

Yes, it took months to ramp off it. She had starry vision whenever the lights turned off for several months after that, which doctors were pretty dismissive of. She claims to never have been quite the same since taking it (and she only ever took what the doctors described as a baby dose) but she seems quite fine and normal now, over a year later.

She's been on a lot of drugs, and the ramp down for this was by far the biggest pain. Compounding alone cost hundreds of dollars and tons of driving time to places that could actually compound it, all to get off the damn drug.

She was mostly prescribed it for pain/nerve damage.

Edit: that being said, her doctors did have patients who were on absolutely massive doses for the long term with basically little to no side effects, so I think it depends a lot on the person.

Re: How to deal with extreme physical pain

#325

Post by giardini » Sat, Oct 31, 2020, 3:57 PM UTC

The OP has "frozen shoulder". IIRC usual treatment is to immobilize the arm and eventually, after a year (or two) the shoulder will "unfreeze". When I read about frozen shoulder I was astonished: no good underlying diagnosis, little knowledge of what caused it, but clearly knowledge gained in the hardest way - experience over generations.

And in this case, rather than wait a year, someone decided to perform "adhesive capsular release" surgery not once, but twice! What happened to "Primum non nocere": "First, do no harm"?

My hat is off to the person(s) who first understood that doing nothing to the shoulder was the correct therapy. And woe to those who prolong suffering by "fixing" what they do not understand.

Re: How to deal with extreme physical pain

#326

Post by wtracy » Sat, Oct 31, 2020, 4:02 PM UTC

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…

Since so many posters can't seem to wrap their heads around what banana_giraffe is saying, let me try to put it in terms you can all understand:

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.

Re: How to deal with extreme physical pain

#327

Post by temp0826 » Sat, Oct 31, 2020, 4:02 PM UTC

athriren wrote: post #186

kshacker wrote: post #127

Earlier quoted context omitted.

I think you need to cool down. We live in a complex world. Some of us know the health side well a lot of us don't. Then we get an issue, like I had a heart attack and stents, and besides what the doctors and the family say, we read and read and read. And then when we see all the healthcare industry is trying to do is to make money from our sickness, when we see a friend in similar or really tangential pain, we try to…

No, the actual issue here is that people don’t understand that they need to have enough empathy to be able to follow a logical sequence of steps before speaking: 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 pre…

I work with a couple of rather novel/unconventional treatments/“medicines” (kambo and ayahuasca). I find myself biting my lip hard at this topic because most folks have never heard of them and demand some kind of research backing the wild anecdotes surrounding them. They’re both incredibly potent and can treat a wide range of maladies, but are very demanding ordeals to actually go through. I’ve come to terms with not giving advice, and tell myself that he/she must want to be healed and they will ask if/when they want it. Often I simply want to bring them up, just to raise awareness, but even that very difficult considering just how “out there” they are (usually getting dismissed or raised eyebrows). Any suggestions for how to talk about these unconventional things without offending sensibilities?

Re: How to deal with extreme physical pain

#328

Post by giardini » Sat, Oct 31, 2020, 4:09 PM UTC

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…

You are at the borders of accepted medical science and facing the woods now, having exhausted the usually-accepted and documented approaches. You have two choices:

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

Re: How to deal with extreme physical pain

#329

Post by environment » Sat, Oct 31, 2020, 4:40 PM UTC

loceng wrote: post #313

DoreenMichele wrote: post #257

Earlier 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…

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 e…

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

#330

Post by lenkite » Sat, Oct 31, 2020, 5:18 PM UTC

thking wrote: post #308

lenkite wrote: post #254

Earlier quoted context omitted.

Neither exercise nor meditation worked for me, but very intense throat exercises alleviated the condition. I also took up singing. Now, I daily follow a 5 minute intense throat exercise before going to beg until my neck and throat aches. Only then I hit the pillow. People suffering from sleep apnea seem to have bad throat muscles and big tongues.

Would you mind sharing the excersises that helped?

The most helpful one is making the top of your tongue meet the roof of your mouth and pulling it backward as far as you are able. Simultaneously move your jaw down forcing it as much down as possible slowly, while not losing roof-tongue contact.

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).