Hacker Cinema
Pain Warriors
2019 · Film · documentary · 75 min
Directed by Tina Petrova, Eugene Weis
Pain Warriors examines the other side of the OPIOID CRISIS, that of under-treated pain among the patient populations of Canada and the USA.
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19 comments on Hacker News
Getting the run a round from the Duke Medical School phone system was the last straw for my late wife. She killed herself because she could not reach a Human that could help her.
So yes, death does happen by phone systems.
This was in 2013 pre AI.
See our documentary Pain Warriors about that whole saga. Free to watch on TubiTV and Amazon Prime. I get no renumerations of any kind. The opposite actually, has cost me greatly. Pain Warriors has won several awards.
My late wife took her own life to stop Chronic Pain. See our documentary Pain Warriors about that whole saga. It can be watched for free on Amazon Prime and TubiTV and a few other places. I receive no renumeration of any kind from the documentary. Pain Warriors is five stories, four with people with Chronic Pain and one of a doctor punished for helping people with Chronic Pain. Two of the people took their own lives to stop the pain, one being my wife Karen.
Consider that, to my knowledge, we still have no simple objective test that will tell me that you are hungry. Hunger is a mild form of pain.
We have a long way to go before we have objective measures of Chronic Pain.
We must put more effort in finding solutions for Chronic Pain.
For Karen she was told "The pain has become fixed in your perception". That was the best the Medical Establishment had to offer her early on.
I must give some background so you don't think I'm being factious or silly by what I'm about to explain.
Next week it will be twelve years since my wife killed herself due to Chronic Pain. Willing or not thrusting me into being an advocate for those with Chronic Pain. Most specifically advocating for those with Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks and those poisoned by Fluoroquinolone antibiotics such as Levaquin, Cipro etc.
See our documentary Pain Warriors about the whole saga of my late wife. It is free to watch many places. I get no remuneration of any kind from Pain Warriors.
As someone with Lupus "The Spoon Theory" was created by Ms. Christine Miserandino.
Anyone that spends time in Social Media related to chronic health issues is going to come across someone talking about 'Spoons'. Yes, the utensil that you eat with.
A normal health person has an unlimited number of spoons per day. Someone with a chronic condition may only have five or ten if they are lucky.
Each 'Spoon' represents a task of daily life. Say just getting out of bed, taking a shower or eating a meal, each being one spoon.
When you run out of spoons for the day your day is over, or you start paying by borrowing spoons from tomorrow, which makes tomorrow a worse day than today.
So the linguistic words being looked for are already being measured by the community itself in a scale of Spoons. As silly as it might sound.
Ms. Miserandino explains how this all came about here:
https://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Something I need to add, because I mentioned Lupus, is that food sensitivities to Nightshade plants, common in our diets, can mimic the systems of Lupus and Rheumatoid Arthritis. If you or a loved one has those, eliminate the Nightshade family from your diet for a while and see if there is any improvement.
One of the known side effects of this drug is Suicidal Ideation.
My late wife was taking this crap when she killed herself; see the documentary Pain Warriors for that whole saga.
I've been warning people about this drug for years. One lady told me, months after a warning to her group: "Bob, I was standing on the railing of a bridge ready to jump, when I heard your voice. I got off of the bridge and got help."
This stuff really needs to be removed from the market. I acknowledge that I've been told by a very few that it helps them. I've been told by far more how it harmed them.
See also from the Journal Cell Oct 16 2009, relating to both Gabapentin and Lyrica, because other comments here are speculating about how it works:
"... α2δ-1 is the high-affinity receptor for two commonly prescribed antiepileptic, antineuropathic pain medications, gabapentin (GBP, Neurontin) and pregabalin (Lyrica) (Gee et al., 1996). GBP and pregabalin were initially designed as hydrophobic gamma amino butyric acid (GABA) analogs that could cross the blood-brain barrier. Further studies have shown that even though they posses anticonvulsant properties, they do not bind to GABA receptors or transporters. A recent study using a knockin mouse that expresses a mutant α2δ-1 that cannot bind GBP or pregabalin has shown that α2δ-1 is the in vivo target for these drugs and that these drugs mediate their therapeutic action through binding to α2δ-1 (Field et al., 2006). GBP and pregabalin do not affect the single-channel kinetics of calcium channels and have only modest effects on neurotransmission (Dooley et al., 2007). Thus, the cellular mechanisms underlying the mode of action of these drugs are unclear. ..."
https://www.cell.com/cell/fulltext/S0092-8674(09)01185-4
My late wife took her own life because of Chronic Pain. She was told "The pain has become fixed in your perception".
Many years later we found that the actual cause was a Cerebrospinal Fluid (CSF) Leak.
After two failed surgeries to fix it, she had enough and checked herself out.
See our documentary Pain Warriors for the whole saga.
"She added me to a private CSF leak group on Facebook with several thousand leak patients from around the world."
My late wife joined that group when it was 800 people in ~2011. Today we are closing in on 9,000 people. Back in the beginning a few people though that my late wife Karen started that group. She didn't. She was just a prolific poster there helping a lot of people as she learned about Leaks in her medical studies.
Part of Karen's saga, and mine, is published on the CSF Leak Foundation website here "When Pain is Relentless" :
https://spinalcsfleak.org/when-pain-is-relentless/
A few years later Karen's saga also became part of the documentary Pain Warriors. Which can be watched for free on Amazon Prime, TubiTV and Youtube. It is also on iTunes. Our goal is to raise awareness of CSF Leaks and the devastation they cause to families like mine. Karen took her own life due to the pain from CSF Leaks and being poisoned by the flourquinilone antibiotic Levaquin (NEVER Take that or Cipro et.al. which I can back up with FDA data, I want to focus on Leaks here).
The top doc in the world Dr Schievink [1] has estimated that just under 100% of people that have CSF Leaks have some type of under lying Connective Tissue Disease. Karen saw him and the docs that are mentioned in the parent article that were there at the time in the 2011-2013 time frame.
I had Karen's spin exhumed and it was sent to Duke to be studied. Much was learned from it to help those that came later. Sadly not nearly enough. All of this is documented in what has become known as Karen's Journal. Free to read on Karen's website. Any profit from the sale of physical books go directly to the Spinal Leak Foundation. [2] I also get nothing from the Pain Warriors Documentary. [3]
1:
https://spinalcsfleak.org/schievink-surgical-history/
2: Sadly the certificate expired so please ignore the scary warning until I get that fixed. I also need to fix a link that I see is broken to the PDF that was used in the documentary. http://www.kpaddock.com/book
3: Pain Warriors on YouTube:
https://youtu.be/WB60ZCiYwgk?si=PAVsDOVDcEdoJ-jC
Just typing this has me crying yet again.
What we desperately need is better imaging technology. When it comes to finding Leaks with today's methods we are still in the Stone Knives and Bearskin era.
CSFluid is almost identical to water making it hard to differentiate unless the leak is large. It does not take a large leek to cause devastating headaches.
If you have any ideas, please speak up.
Sadly that is behind a Pay Wall.
Our documentary Pain Warriors is not.
It is free to watch on Amazon Prime and TubiTV. It is also found on iTunes, Google Play and Vemo for international viewers (Those are not free).
Pain Warriors is five stories, one being of my late wife who killed herself because of Chronic Pain. There is one other suicide in the documentary.
One of the stories is of a doctor that lost everything for helping people like my late wife.
This is the other side of the opioid epidemic. Where people that need pain medication can no longer get it.
There is no evidence at all that properly prescribed and taken pain medicine is in any way contributing to the 'Opioid Epidemic'. Yes, there are bad actors out there than do need dealt with for running Pill Mills and such. That has nothing to do with people in Chronic Pain.
As the pain medication has been taken away, deaths continue to mount proving that people in pain have had nothing to do with this problem. It all stems from Fentanyl.
The CDC has recently revised their 2016 guidelines to be more favorable to pain patients. Sadly it is to little to late. The CDC has stated that pain medication should not be taken away from people in pain. Alas the damage has already been done.
I receive no remuneration from the documentary. We are just trying to raise awareness.
Please watch the documentary "Pain Warriors" to see what is happening to people with Chronic Pain and the other side of the "Opioid Epidemic".
"Pain Warriors" is NOT a warm and fuzzy movie to watch. It is five stories, two being suicides one of which was my late wife Karen.
It is also a good example of how today's Medical Establishment fails people. In Karen's case each doctor did what they thought was in her best interests, and I have no issue with any of them. Yet the system as a whole killed her.
"Pain Warriors" can be watched for free on Amazon Prime, and TubiTV. It is also on iTunes, Google Play and Veimo for international viewers.
I receive no remuneration from the documentary. I'm simply trying to raise awareness of obscure conditions like Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks. As well as raise awareness of how broken the Medical Establishment can be if you have an obscure condition or Rare Disase.
They did this to my late wife's account. They demanded that I prove she was dead, as if I didn't already have enough grief. See the documentary Pain Warriors about that saga.
How do I sign up to be part of this suite?
I lived that in he Real World, for nearly 30 years. The saga of my late wife is now part of the documentary Pain Warriors. It can be watched for free on Amazon Prime and TubiTV.
What has become known as Karen's Journal is required reading at Duke school of Medicine to educate doctors about the reality of Chronic Pain. In the end the Medical Establishment failed her and she killed herself to stop the pain.
Details on that here: https://www.kpaddock.com/pw
Why are Fluoroquinolone Antibiotics (FQs) such as Cipro, Levaquin etc. even still on the market, from the many life long devastating side effects they cause many?
The FDA itself has said that this class of Antibiotics should be reserved until ALL other options have been exhausted. Yet doctors are giving this crap out like candy. Usually for things that they don't even work for such as UTIs see FDA July 26 2016:
"Limits use for acute bacterial sinusitis, acute bacterial exacerbation of chronic bronchitis and uncomplicated urinary tract infections." See link below.
Because for those items they don't work any better than a placebo, as the FDA itself documented in this 617 page report:
https://web.archive.org/web/20170113234645/http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/Anti-InfectiveDrugsAdvisoryCommittee/UCM467383.pdf
On page 17 of that report they even give a name to the problem these antibiotics cause:
'"fluoroqunolone-associated disability" (FQAD)'.
I have gathers all of the FDA warnings, and a few from the EU that say don't use them at all, about FQs at my late wife's website:
https://www.kpaddock.com/fq
In large part she is my late wife because of Levaquin causing her systemic tendentious. After several years she killed herself to stop the pain from that and CSF Leaks. For that whole saga see the documentary Pain Warriors that is free to watch on Amazon Prime and TubiTV:
https://www.kpaddock.com/pw
For me because of all of that it comes down to don't trust Big Pharam and the Medical Establishment with your health. Study EVERYTHING and make an informed decision before taking anything a doctor offers you.
Ask them "Is my problem being caused by a pill deficiency?" and watch their stunned looks...
On a possible upside there is some work coming around on using Phages as a type of antibiotic. The founder of this company experienced her own antibiotic resistant infection. [Full disclosure I have communicated with her about the above FQ issues, I receive nothing from them.]
https://www.felixbt.com/new-page
I've lost count of the number of doctors that told my late wife the headaches were all in her head (Mentally to be clear here).
When she laid down, she had no headache. When she would be upright the headache would return. This is frequently, and incorrectly, called "An Afternoon Migraine".
After nearly two decades, because the Medical Establishment had written her off as a mental case, she figured out what she had herself, which was Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks.
CSF Leak detection is still a developing area of medical research. We desperately need better imaging technology than we have today. CSF Leak detection is still in the "Stone knives and Bearskins" category. Hopefully the brilliant people that hang out here can help with that...
Karen eventually killed herself because of what had become constant pain from the CSF Leak and poisoning by the Fluoroquinolone antibiotic Levaquin (Cipro is in the same drug class; the FDA itself says to only use this class of Meds as the last resort yet the doctors give it out like candy).
Karen's Journal was part of a FDA hearing in 2015 about the damage these antibiotic cause.
Her whole messy saga became one of the featured stories in the documentary Pain Warriors which is free to watch on Amazon Prime and TubiTV. It can be found other places as well. It is NOT a warm and fuzzy thing to watch.
The bottom line is be responsible for your own health and NEVER blindly trust what anyone in the Medical Establishment tells you. Do your own research on your condition etc...
Please watch the documentary "Pain Warriors" to see what is happening to people with Chronic Pain and the other side of the "Opioid Epidemic".
"Pain Warriors" is NOT a warm and fuzzy movie to watch. It is five stories, two being suicides one of which was my late wife.
It is also a good example of how today's Medical Establishment fails people. In Karen's case each doctor did what they thought was in her best interests, and I have no issue with any of them. Yet the system as a whole killed her.
"Pain Warriors" can be watched for free on Amazon Prime, and TubiTV. It is also on iTunes, Google Play and Veimo for international viewers. We are in the process of applying to get it on Netflix.
I receive no remuneration from the documentary. I'm simply trying to raise awareness of obscure conditions like Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks. As well as raise awareness of how broken the Medical Establishment can be if you have an obscure condition.
After my wife's suicide (See the documentary Pain Warriors) I took over Karen's FB account as my own, and I changed the name on the account. Long before this breach I have been getting SMS Spam addressing me as Karen, on a number that did not exist when she was alive.
FB data can be the only possible source of that spam.
The spam is always trying to sell male enhancement products to 'Karen'. Anyone know how to stop this SMS spam crap?
If you want to understand the day to day issues of real people then please watch the documentary *Pain Warriors* that is about Chronic Pain.
It is five stories, four of people with Chronic Pain, two that ended in suicides. My late wife Karen being one of them. The other story is of a doctor that the Medical Establishment destroyed for helping those with Chronic Pain. It is *NOT* a warm and fuzzy movie to watch.
For full disclosure I am a member of the cast, have been intimately involved in Pain Warriors production for several years. I receive no remuneration of any type. It is my mission to raise awareness of those suffering from Chronic Pain and Cerebrospinal Fluid (CSF) Leaks.
Pain Warriors can be found on Amazon Prime, iTunes, Google Play, Viemo (for international) and YouTube (sometimes, they are weird). The distributor set the pricing for the platforms and regions so check around for your best place to watch it.
We could really use your help. Our goal is to get Pain Warriors on Nexflix to reach a wider audience. For that to happen we need to have over a 100 positive reviews on The Internet Movie Database (the 100+ positive reviews on the other platforms don't count to Netflix).
Our segment in Pain Warriors is based on what has become known as "Karen's Journal". One reviewer wrote:
"Karen's first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day."
Thank You for your help and bring up this subject here.
We posted at the same time, see my comment above yours about the documentary Pain Warriors.
Dr Mark Ibsen is one of the five stories. He lost everything for helping those with Chronic Pain. Five of his patients killed themselves when he was no longer able to prescribe. The medical board said he was over prescribing, that blood is on the boards hands. The arbitrator/judge in the case said that Mark did not do anything wrong, yet The System destroyed him.
Yes it is a rough field. I see it every single day in advocating for those that the Medical Establishment has forsaken.
There are bad doctors, there are bad people writing medical software as this thread explains. They need dealt with.
Pain Warriors documentary about Chronic Pain and medical establishment teaser is on my YouTube channel. Read the reviews of those that have seen the full movie previews.
https://www.youtube.com/watch?v=TN3T7lfab7Y
Fluoroquinolone antibiotics such as Levaquin (no longer manufactured, only generics now [you can not sue the makers of generics in most states]), Cipro etc. should be removed from the market due to their devastating side effects.
My late wife's Journal was part of the 2015 FDA hearing about getting these restricted from doctors giving them out like candy. Alas all we got was yet more "Black Box" warnings that you and the doctors never see.
Karen ultimately killed herself from the Chronic Pain cause by the Levaquin and Cerebrospinal Leaks (CSF Leaks). Her saga is one of the five stories in the upcoming documentary Pain Warriors being released to distribution this spring.
I'm now up to 44 people that have told me that their own CSF Leak started after taking Levaquin, Cipro etc. Something that there is ZERO medical research on. The Leak doctors are aware of this as I spoke about it at their first ever CSF Leak conference.
Someone here will inevitably say "I took Cipro et.al just fine". Many people do take it may times until they have a reaction or they don't associate their new health problems with the delayed reaction months later.
Antibiotics in general are a good thing, however we must never assume they are safe in and of themselves without consequences.
My wife killed herself because of Chronic Pain. Her saga is required reading at Duke Medical School and has become part of the documentary Pain Warriors, to be released soon. The documentary covers the lives of those miss treated by the Medial Establishment, including doctors that treat Chronic Pain.
Those with Chronic Pain are being left to suffer because of abusers. In April of 2019 the CDC stated that their "guidelines" are being miss applied. Sadly the damage is already done.
https://www.cdc.gov/media/releases/2019/s0424-advises-misapplication-guideline-prescribing-opioids.html
"CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic Pain Some policies, practices attributed to the Guideline are inconsistent with its recommendations.
In a new commentary in the New England Journal of Medicine (NEJM), authors of the 2016 CDC Guideline for Prescribing Opioids for Chronic Pain (Guideline) advise against misapplication of the Guideline that can risk patient health and safety.
CDC commends efforts by healthcare providers and systems, quality improvement organizations, payers, and states to improve opioid prescribing and reduce opioid misuse and overdose. However, some policies and practices that cite the Guideline are inconsistent with, and go beyond, its recommendations. In the NEJM commentary, the authors outline examples of misapplication of the Guideline, and highlight advice from the Guideline that is sometimes overlooked but is critical for safe and effective implementation of the recommendations.
CDC is raising awareness about the following issues that could put patients at risk:..."