A solution in search of a problem

http://www.chieftain.com/business/5198021-120/marijuana-colorado-pot-candy

A requirement that edible marijuana products come with a diamond-shaped stamp and the letters T-H-C — not just on the packaging but on the brownies, candies and other edibles themselves — takes effect Saturday…

The stamping requirement comes in addition to exhaustive labeling and packaging rules that include childproof zippers and lids, along with warnings that the product should be kept away from children and not eaten before driving or while pregnant or nursing.

“We want to ensure that people genuinely know the difference between a Duncan Hines brownie and a marijuana brownie, just by looking at it,” said state Rep. Jonathan Singer, a Democrat who sponsored the law requiring stamped edibles…

Marijuana ingestions remained relatively rare, though, with the hospital reporting 81 children treated for accidental pot ingestion between 2009 and 2015…

My comment (awaiting moderation):

Since cosmetics, personal care products, and cleaning substances are the most common substances implicated in pediatric poison exposures, it’s now time for each of these products to be stamped with a similar label, along with every pill produced by Big Pharma. Because it’s been proven that kids always pay attention to labels.

The difference between a cannabis brownie and one from Duncan Hines? The cost. Anyone who buys an edible is very aware of how much it costs and will not pass it around like candy. If they can afford to do that, I’d like to be their friend.

Mr. Singer, how much of your political funding comes from the alcohol and prison industries or Big Pharma? Why would you sponsor and pass such a nonsensical regulation?

http://www.poison.org/poison-statistics-national

Facebook comments that disappear

I use Facebook to make comments, but I’m not that familiar with how the software works. When I made a comment on this Consumer Affairs article through my Facebook account, I expected it to show up in my activity log. But my comment was deleted by Consumer Affairs, so it doesn’t appear in my Facebook account. (I guess everybody hates — and prefers to silence — a critic.)

That doesn’t seem right, but I guess it’s just another reason to dislike Facebook. After all, why would I want to use the same blogging platform as Mark Zuckerberg?

https://www.consumeraffairs.com/news/study-most-patients-getting-opioids-have-leftover-pills-061516.html

My censored comment:

Most deaths related to an opioid overdose are due to a combination of drugs, not just the opioid. If Consumer Affairs would like to see responsible reporting on the drug war, here’s one (lonely) example:

http://www.theguardian.com/us-news/commentisfree/2016/jun/08/opioid-epidemic-drug-mix-overdose-death

“Opioid use on its own is not dangerous, and it’s time we stop demonizing it.”

New York (with Bloomberg at the helm) is the poster state for how not to fight the drug war. That state (with help from Kolodny and PFROP) has been at the forefront of restricting access to prescription pain medications and increasing the amount of addiction clinics (along with the use of drugs like methadone, bupe, and Narcan).

http://www.huffingtonpost.com/2013/01/11/new-victims-in-the-war-on_n_2455917.html

And look where New York is at now — they’ve gone from bad to worse.

This study is a day late and a dollar short. The problems with diversion aren’t being caused by patients anymore, and it was only a small percentage of patients who were responsible for diversion anyway. If Consumer Affairs is going to “report” on the drug war, it should include other stories about diversion, like from DEA agents, pharmacies, hospitals, and nurses. The longer the medical industry blames patients, the more guilty it looks.

CNN sucks

Tue, Jun 7, 2016 9:18 pm
To: Carrie.Stevenson@turner.com, Desiree.Adib@turner.com
Re: I don’t watch CNN because…

Dear Ms. Stevenson and Ms. Adib:

The CNN broadcast of an Anderson Cooper interview on the prescription opioid/heroin “epidemic” is just one example of why I don’t watch CNN. Tell me, how are your viewership statistics? Let’s ask the internet, shall we?

http://www.journalism.org/2015/04/29/cable-news-fact-sheet/

Do ya’ll think that CNN will be remembered for championing the drug war? For being on the wrong side of history?

As a 30-year intractable pain survivor, if I thought CNN really wanted to hear and report on the side of pain patients, I would include a link to my blog. But just like your corporation couldn’t be bothered to find the truth, I can’t be bothered to watch lies.

Johnna Stahl
Albuquerque, New Mexico

Censoring the comments of pain patients

http://www.salem-news.com/articles/may172016/stigma-opioid-epidemic-ms.php

By:  Marianne Skolek-Perez, Salem-News.com “Investigative Reporter”

(MYRTLE BEACH, S.C.) – This past week CNN broadcast an Anderson Cooper interview on the prescription opioid/heroin epidemic at a Town Hall Meeting.

CNN has been accused by the U.S. Pain Foundation, a lobbying group for pharma in catering to the needs of chronic pain patients in their use of long term opioids, at stigmatizing the pain patients…

Mr. Gileno charged that a woman in the audience named Kay Sanford was the only person with pain — and on prescription opioids for “25 years” given the opportunity to speak. He was appalled that Ms. Sanford was interrupted by both Anderson Cooper and Dr. Drew Pinsky during the broadcast and were dismissive of her pain journey.

Gileno further stated that those on the CNN panel “had the audacity to say her story was the minority.” I recall that Ms. Sanford proudly stated that she walked a mile and a half three times a week and swims even while taking prescription opioids for her chronic pain condition — for 25 years.

Strange though that people in attendance at the broadcast watched as Ms. Sanford was assisted to be seated and subsequently assisted from her seat after the broadcast.

Yet she is a walker of 1-1/2 miles and swims? …

Do you know what matters Mr. Gileno?

It is that we are losing a generation of young people to the prescription opioid epidemic now leading to soaring heroin usage. Stigma of the chronic pain patients? Give me a break…

This country has an over abundance of opioids prescribed to pain patients — many long term who are addicted — hook, line and sinker. The stigma is that your foundation is funded by the pharmaceutical industry and pharma controls the FDA. Thereby, the approval of so many dangerous and addictive opioids being prescribed not only to your “pain patients”, but to young people, Addiction is the culprit.

Notice I don’t use the word “dependent” and I won’t. As long as the U.S. Pain Foundation “advocates” for pain patients and their long-term use of opioids, the addiction and death toll will rage out of control…

CNN and other news media need to keep this epidemic in the forefront. Lives depend upon it.

Email addresses for the CNN producers are: Carrie.Stevenson@turner.com & Desiree.Adib@turner.com

On February 17, 2015 I wrote an article asking why an advocate/official of the U.S. Pain Foundation was allowed to perform antics during hearings on the Senate floor, lying on a yoga mat, while giving testimony about chronic pain.

Why the yoga mat though? Well it seems the senators conducting the hearings allowed her to lay on the Senate floor on her yoga mat and testify using a hand held microphone because in the 1990’s, she sustained an injury.

Bizarre? No it is shame on the senators during these legislative hearings in allowing this disrespect for the tens of thousands of families who suffer pain in the loss of loved ones — and they do not use theatrics in total disrespect for this health crisis…

All comments and messages are approved by people and self promotional links or unacceptable comments are denied.

My comments, all of which have been censored on this website:

Comment #1:

As a 30-year intractable pain survivor, I can’t add anything to this comment section that hasn’t already been said. Instead, I’ll share some poems that I’ve written, words that I think about every single day.

Please kill me
Just kill me now
I’ve suffered enough
and how

Suffering
shuddering
pain roaring
thundering
overpowering
head hammering
eyes watering
thoughts scattering
body lumbering
no glimmering
time shuttering
heart hardening
life guttering
bad thoughts whispering
pain is poisoning

I can easily
picture myself
on my deathbed
denied pain relief
denied dignity
Frightening

https://painkills2.wordpress.com/2015/12/27/uncontrolled-pain/

Comment #2:

How long does it take for you to approve comments?

Comment #3:

I absolutely abhor censorship, especially when it’s done out of selfishness.

Last comment:

When fear causes you to censor my words, you steal my voice. When you steal my voice, you silence me. That’s what you think will happen, but it’s not true. Because when you have your own blog, with terms searchable through Google, your voice can reach whoever’s listening.

Craig’s List is unsafe for women

Yes, I troll Craig’s List for posts about cannabis, but they are few and far between. I would even call them very rare. What you will mostly find on Craig’s List is people (and prostitutes) seeking sex. Seriously, I’ve never seen so many dick pics in one place.

Lately, I’ve been posting ads on Craig’s List warning women about the men I’ve had contact with through that site. Although Craig’s List has no problem with all the disgusting ads posted on its website (including posts about rape and underage sex), it has begun to censor my warnings to other women. I think this is wrong and discriminatory, but it’s not like I can do anything about it.

There are dangerous men on Craig’s List, and I’ve heard from numerous women in response to my warnings who agree with me. If you’re seeking anything on Craig’s List, please be very, very careful, especially if you’re a woman.

If the drug war was over, I wouldn’t have to stoop to things like this. Thanks, DEA.

CDC Condones Torture

http://www.nejm.org/doi/full/10.1056/NEJMp1515917

(4/21/2016) Reducing the Risks of Relief — The CDC Opioid-Prescribing Guideline

By Thomas R. Frieden, M.D., M.P.H., and Debra Houry, M.D., M.P.H.

My comment:

Where are the studies that show there’s a difference between cancer pain and other chronic pain? Why does a cancer patient deserve adequate and affordable treatment, while chronic pain patients are forced to suffer? Because a small percentage (of rich, white patients) may become addicted? Does the CDC contend that dependence and addiction are the same thing?

Mr. Frieden, what the CDC has done (along with the DEA) is legalized torture, the definition of which is to “inflict severe pain on.” (Do you think chronic pain can’t ever be characterized as severe or acute?) Torture is also “the action or practice of inflicting severe pain on someone as a punishment or to force them to do or say something…” (That’s a great definition of the drug war.)

You’re not only punishing chronic pain patients, you are torturing them. Admit it. Admit the blatant discrimination in these “guidelines.” Admit that being an alcoholic does not give you any experience with the treatment of chronic pain.

I am a 30-year intractable pain survivor. The only treatment option I have left is the right to die. Thanks, CDC. (Also posted at painkills2 on WordPress.)

“Thank you! Your comment listed below has been successfully submitted for the moderator to review.”

Comments open through April 27, 2016

Update (4/21/2016):

My comment was approved for posting on the CDC’s website, but they removed this language:

“Admit it. Admit the blatant discrimination in these ‘guidelines.’ Admit that being an alcoholic does not give you any experience with the treatment of chronic pain.”

Not Your Fault

To every person who has suffered from the crime of rape, I can’t say this enough:

It’s Not Your Fault

https://painkills2.wordpress.com/?s=defy+gravity%21

Please go to YouTube to see Lady Gaga’s performance at the 2016 Oscars, as every time I post a video for this, it’s censored.

Opioids did NOT cause the current increase in heroin use

Posted yesterday on Pharmacist Steve’s website:

The pharmaceutical companies that manufacture and market OxyContin, Vicodin, and other highly addictive opioid painkillers — drugs that have fueled the epidemic of overdoses and heroin addiction…

http://samquinones.com/reporters-blog/2015/11/18/the-dayton-heroin-bust/

This writer, Sam Quinones, put out a book entitled “Dreamland (The True Tale of America’s Opiate Epidemic)” last year. Of course, the book is based on a bunch of drug war theories that mostly apply to rich, white people — just like the heroin “epidemic” — and don’t have much to do with the real opioid war or its victims.

I made a comment three days ago, but it was never posted. What’s the matter, Mr. Quinones, are you afraid of the truth? Or won’t the truth help you sell more books?

“…new market that exists in the U.S., created by the overprescribing of narcotic pain pills nationwide…”

As a 30-year intractable pain patient, I’ve lived through the drug war, and I don’t agree with you. I believe the heroin market was created by the under-treatment of pain, and doctors abandoning pain patients and those who suffer from addiction, forcing them into to the unregulated, underground drug market. And you can see that the problems have only gotten worse since the DEA began jailing and convicting doctors and patients in the opioid war.

Oxy is an easy drug to blame, isn’t it? But doctors aren’t stupid. They knew that Oxy was an opioid and that opioids can be addictive. But even with all this alleged increase in drug abuse, the percentage of people who suffer from addiction has stayed about the same. No, Oxy isn’t to blame, and neither are opioids, pain patients, or doctors. Drugs don’t cause addiction — I think you know that. If one drug becomes unavailable, those who suffer from addiction will just try another. And because of the increasing restrictions on opioids, at the current time, many are choosing heroin.

The fact is that the opioid war is what has caused a drug overdose epidemic in the rich, white population, which is why it’s getting so much media attention. Tell me, do any poor, disabled people buy your book?

CDC Help Desk

Mon, Dec 28, 2015 4:40 am

Re: Proposed 2016 Guideline for Prescribing Opioids for Chronic Pain
From: painkills2@aol.com
To: regulations@erulemakinghelpdesk.com

Re: Docket ID: CDC-2015-0112

Please inform me of the process for tracking my comments, only one of which has been approved, and how to find out why they have been censored by the CDC.

Thank you,
Johnna Stahl
painkills2@aol.com

https://painkills2.wordpress.com/2015/12/26/was-your-comment-censored-by-the-cdc/

https://painkills2.wordpress.com/2015/12/26/this-is-war/

This Is War

(In the future, any additional comments I make to the CDC will be added to this post.)

Your Comment Tracking Number: 1jz-8n0y-9e3t

Isn’t it odd how the comments cannot be put in date order, even though there’s an option for that? And isn’t it funny how the pro-CDC comments almost always appear at the top of the thread, even though they’re out of date order? Are the comments out of date order so the CDC can bury certain comments that it is forced to post?

And wouldn’t it be nice to know why the CDC is banning certain comments? The only rules appear to be: “those containing private or proprietary information, inappropriate language, or duplicate/near duplicate examples of a mass-mail campaign.” I’ve read hundreds of comments approved by the CDC, many of which have information that could be considered private and/or proprietary.

You know, pain patients are smarter than your average person — it’s a matter of survival. We’ve been fooled and tricked too many times to fall for the bias and discrimination exhibited by the CDC in this process. In other words, I’m not the only pain patient who believes that the CDC has already approved the guidelines and the only reason for allowing comments at this point is for the sake of appearance.

Your Comment Tracking Number: 1jz-8n0y-cuca

Are guns the answer for pain patients? I was just wondering if the CDC has found a correlation between the creation of its opioid guidelines and the increase in gun sales. Because I’m thinking that some pain patients have already given up on having their pain adequately treated and have chosen the only other alternative. After all, it’s both cheaper and easier to buy a gun than it is to access pain medications.

Your Comment Tracking Number: 1jz-8n13-p39u

The ghosts of Robin Williams, Amy Winehouse, Whitney Houston, and Scott Weiland want to remind the CDC that their deaths had nothing to do with the treatment of chronic pain. (See, even the dead can tell the difference between drug addiction and chronic pain.)

Your Comment Tracking Number: 1jz-8n2b-w4cw

For the last year, I’ve been collecting the stories of pain patients (including cancer patients) and posting them on my blog (All Things Chronic) under the category “Voices of Pain Patients.” Most of these stories weren’t found in media articles, but in comment sections from all over the internet. (The latest one is entitled “ER Horror Story,” and it will put the fear of god into an atheist.) If the CDC is really serious about creating the most effective guidelines, it will take the time to read these stories.

Today is 12/28/2015, and as of this date, only one of my comments has been approved for posting at the CDC website. Makes you wonder how many other comments have been banned. And it looks like I need to stop using my name when making these comments — perhaps my comments would have a better chance of being posted if they are made anonymously.

—

https://painkills2.wordpress.com/2016/01/01/and-the-cdc-saga-continues/

January 3, 2015

http://www.regulations.gov/#!docketDetail;D=CDC-2015-0112

Your Comment Tracking Number: 1k0-8n6u-4je0

Who will the CDC listen to, grieving parents of overdose victims or chronic pain patients? Which group will be allowed to have their pain treated? Will the CDC enact regulations that will satisfy a grieving parent’s need for revenge, or a pain patient’s right to have access to all treatment options?

Your Comment Tracking Number: 1k0-8n6u-6eyc

It’s easy to see the two major groups commenting on the CDC’s regulations:  pain patients and those grieving the loss of a loved one who suffered from drug addiction. Am I the only one confused as to which group these regulations are really aimed at? Is the CDC attempting to standardize the treatment of drug addiction or the treatment of chronic pain? Or has this agency decided that these two conditions are one and the same and should be treated the same?

—

January 7, 2016

Your Comment Tracking Number: 1k0-8n9g-elns

This Is What Desperation Looks Like:

Yes, this is my wrist, scarred by pain and desperation. These scars represent days when my pain was at a level 10, not attempts at suicide. See, I’ve read that cutting releases endorphins, and those endorphins can decrease pain. (I also saw it on an episode of House, one of my favorite TV shows.) And as I’ve tried almost every other way to manage my pain, I thought it was a good idea to try this one. I mean, if I’m willing to try treatments like hypnosis, why not something like this?

Of course it didn’t work. The cutting just left scars, which I used to be embarrassed about, but now I rarely even notice. These scars are like my stretch marks from pregnancy — they show what this old body has been through. They are like… badges of courage.

Today is a bad pain day for me, and I confess that I’ve thought about trying to release some of that pain by causing myself more pain — attempt to distract myself from the pain in my head by causing pain in another part of my body. In theory, it should work. But in practice, it doesn’t help — nothing could distract me from this level of pain. I know that, but sometimes, desperation doesn’t make any sense…

https://painkills2.wordpress.com/2015/04/06/this-is-what-desperation-looks-like/

Was your comment censored by the CDC?

https://painkills2.wordpress.com/2015/12/23/dear-power-brokers-at-the-cdc/

https://painkills2.wordpress.com/2015/12/23/hey-cdc-can-you-hear-us-now/

https://painkills2.wordpress.com/2015/12/24/censorship-by-the-cdc/

This is an invitation to anyone (like me) whose comment was censored by the CDC:  If you can find my WordPress blog, I will be happy to post your comment, or you can email it to me at painkills2@aol.com. (Censorship is for countries like Russia and North Korea, not the good ‘ol U. S. of A.)

Your Comment Tracking Number: 1jz-8n0v-eywi

Censorship by the CDC

https://painkills2.wordpress.com/2015/12/23/dear-power-brokers-at-the-cdc/

http://www.regulations.gov/#!docketBrowser;rpp=25;po=0;s=johnna%252Bstahl;dct=PS;D=CDC-2015-0112

Perhaps I should not be surprised that only one of my comments was approved for posting on the CDC website.  Looks like I’m gonna have to make more comments, maybe even some with bad words. 🙂

Hey, CDC, what are you so afraid of? The truth?

Hey, CDC, can you hear us now?

At this point, there are 486 comments on the CDC’s new opioid guidelines. And while I didn’t read every single one, I think it’s extremely important for the voices of pain patients to be heard — which is why I copied and pasted some of the comments (mostly excerpts) here on my blog. Now these comments can be found by a simple Google search, instead of being buried on the CDC website (for however long).

I think it’s also important for patients to know which doctors agree with the CDC (you know, so you can avoid them). (See comments under “Doctor” heading.)

Just like I want my story to be read, other pain patients want the same thing, so please take a little time to read a few of these comments. You can find my story here:

https://painkills2.wordpress.com/2014/11/15/medical-cannabis/

In my overall review of the comments, I’d say that 95% of them are from patients and are against the CDC.  I also noticed that there were a significant number of comments from patients with CPRS, EDS, Arachnoiditis, Interstitial Cystitis, and Fibromyalgia.

I’d also like to mention the defensiveness and fear within all the comments from patients. Many comments include lengthy descriptions of medical conditions, along with adamant protestations of innocence for abusing medications, such as:

“I take my medication exactly as my dr has prescribed it.”

“BUT, I DO NOT ABUSE MY PAIN MEDICATION AND I’M NOT A ADDICT”!!!

I hate to break it to pain patients, but I don’t think that matters to the CDC. See, in this agency’s view, almost EVERY non-cancer pain patient on opioids is taking too high of a dosage. In fact, the CDC believes chronic pain patients shouldn’t be taking opioids at all, so it doesn’t matter if you’re taking your medications as prescribed.

I also noticed that too many commenters posted under “Anonymous,” obviously afraid to use their real names.

Lastly, I noticed that many pain patients are rooting for doctors, saying these decisions are between doctors and patients. Until your doctor abandons you, I suppose you might still have faith in him or her… Yeah, good luck with that.

Because if you believe that the medical industry is on the side of pain patients, I’m afraid you’re in for a rude awakening. If you believe your current doctor will never abandon you, I don’t see how you’ll be prepared for the eventuality. And as a pain patient, if you have to find another doctor for any reason, you’ll be up shit creek (right next to suicide alley).

In fact, many doctors are taking advantage of the opioid war by taking advantage of pain patients — overcharging and other abuses (including sexual abuse) against patients are not reported, but believe me, the medical industry is rife with abuse against patients. Ya’ll be careful out there…

PAIN PATIENTS:

Comment from Anonymous

It is very frustrating to have my orthopedic Dr. be with a group that has passed a policy to not give out pain meds after a certain number of months post surgery, then sends me to a pain clinic who won’t prescribe narcotics either…

Comment from Emily Valtreaux

Why are your “professional panels” made up of people that will greatly benefit by throwing us all in detox I wonder? Why do you cry “hyperalgesia” (apparently the new fear mongerer word favorite) even when an individual is still in pain, just to the point that is tolerable? …

Comment from S S

Announcing this with no notice and over the holiday season keeps the PATIENTS (the citizens who need these medicines) from having any input on the topic…

Comment from Jaymie Reed

One of the biggest problems we face is that the very people who are suffering are the ones that need to speak out but won’t because of fear of reprisal from the DEA. They won’t sign petitions or comment on public forums such as this, because they are afraid that they won’t even be able to fight to get the pain medication they need that it will simply be taken from them completely… The number of heroin deaths are increasing and it isn’t because the chronic pain patient who is being treated for their pain. It is because of the chronic pain patient that is no longer receiving treatment for their pain. They turn to the streets and buy a drug they have no idea how to use and end up overdosing…

Comment from Rebecca

In Colorado they had me try medical marijuana and that also helped but I had to move back to West Virginia and the medical marijuana is not legal here so I haven’t had any real relief in over a year. I need help…

Comment from John Bocchicchio

A colleague of mine who had a similar condition and had been battling out the pain management paradox, I.e. You are treated like a drug seaker until further proven. He dealt with the suspicions, urine tests, and intense scrutiny as he was fighting for his life with the pain that sought to kill him. Unfortunately, the pain won. Faced with disability battles, and struggles obtaining relief from chronic pain that is constantly screaming at you to give up, he took his own life in 2009 rather face another day of pain and frustration. I don’t want to end up being like my colleague…

Comment from Shelley Anderson

Do you know what it’s like to feel split open from the waist down, have red ants dumped on you, and be eaten alive from the inside out…. YEAH… THAT’S HOW I FEEL EVERY SINGLE DAY… and yet – the answer I get from our local clinic is…just go to the ER to get some pain relief. REALLY? For Gods sake – I DESERVE TO LIVE A SOMEWHAT NORMAL LIFE…I feel like a begging junkie every single month when I have to pick up my “piece of paper”….how gross to live like this. It’s just so damn frustrating. Today…I’d be better off dead. What a sad and pathetic way to try and get my point across. So so so sad. No one should have to live like this. No one.

Comment from Kevin Howerton

I have a degree in neuroscience… Likewise “they aren’t terminal” seems like a very poor argument for denying someone treatment that has the potential to drastically improve their quality of life. I’d rather a short and painful life to a long and painful one.

Some of the more “serious” arguments seem to revolve around the idea that opiate use increases exponentially. “Opiates require an infinite increase to quench an ever increasing tolerance”. You’d be surprised but this idea is preposterous. You have a finite number of receptor sites in your brain; your head occupies a finite amount of space … how could you expect an infinite amount of tolerance. Tolerance does increase with chronic opiate use though it is far from infinite. Having to titrate up a patient to a useful therapeutic dose as their treatment and disease progresses is not something physicians have to uniquely do with opiates … rather this is the nature of all drugs…

Comment from Dana Spencer

I will never get better. I will only get worse.

Comment from Anonymous

SHAME ON YOU

Comment from Anonymous

I just notice the comment I submitted 12/20 was not listed. In fact, comments between 12/19-20 were missing. [This was not the only mention of disappearing comments.]

Comment from Lori Mahloch

I am appalled that the CDC thinks that the only people who deserve to be treated humanely are people with Cancer. I have Reflex Sympathetic Dystrophy, This rates the HIGHEST on the McGill pain scale for pain. Yet I am unable to get treatment by physicians because of CDC guidelines. Walking into a doctors office for a first visit and the first words out of a doctors mouth should NOT be we don’t give pills here. Because of the audacity of the CDC many doctors will not see, nor treat anyone who has a chronic pain disease. I have not been able to see a doctor for a year because of these guidelines. I have lost friends to suicide , due to not being able to get pain meds for their pain…

Comment from Rebecca Scarbrough

Do you think regulations that label sick people as drug addicts or dealers helps with the personal anxiety and depression that almost always accompanies chronic pain? Why add to this? I wonder how many lives were lost when a pharmacist stare and judgement was the final straw. Have you ever thought of that? …

Comment from George Gregorich

I no longer respect or trust doctors…

Comment from Rhonda Barth

You all should be ashamed! My husband is 100% service connected disabled Veterans who is being made to suffer in agony now because you have made it to where the VA is taking away his pain medication. He is now bedridden and has no quality of life, he does not want to be here anymore…

Comment from Theresa Schramm

After 32 years of dealing with temporomandibular joint pain and dysfunction, I had both of my jaw joints replaced and all of my remaining natural teeth pulled earlier this year. The TMJ dysfunction has improved, and is still improving as I slowly get used to dentures, but the headaches and myofascial pain have not. The surgeon was very clear in warning me up front that the pain might not improve with this surgery, and he was right. It seems that the 32 years I spent trying to find ways to treat this has left me with incurable scar tissue all around my jaw joints on both sides. This scar tissue affects every move I make with my face, from simple carrying on a conversation all the way up to eating. My mouth will never open as wide as it should, nor will it move from side to side. I experience pain on a daily basis, sometimes in my jaw joint areas and more often all over my head. It hurts to talk on the phone for more than 15 minutes. Singing causes such pain I have almost completely given it up…

Comment from George Gregorich

I can’t wait for the day when I watch the news and see you people being arrested for crimes against humanity. You are just as bad as chronic pain , you don’t know when to quit…

Comment from Richard Osband

Opiates (of one form or another) have been the sovereign analgesics for centuries. The CDC’s efforts to essentially criminalize them when no other really effective alternative to their use exists is simply sadistic. While there are many ways to treat addiction there are no other ways to treat intractable pain. The proposed guidelines seem to make pain management a matter of morality rather than of proper clinical practice…

Comment from Anonymous

I have lived with Severe pain since I was 14 years old. There is no doubt what the cause is behind the pain. I have had 13 brain surgeries since then and 4 spine surgeries. If I did not have access to my daily dose of Morphine, and Hydrocodone I would not be able to get out of bed because of Hydrocephalus, and a spine disorder called Arachnoiditis. Please stop the madness surrounding to restrict access to much needed life-improving medications. Doctors have all said to me, I may not have cancer but its clear from my vital signs, my labwork and scan results I am living in constant severe pain, and need to be treated adequately before it kills me. It’s proven that chronic pain can put a strain on your heart and other vital signs if not treated appropriately patients can die prematurely.I am fearful that the government wants to do is kill off all chronic pain patients rather than helping us have a better quality of life. The pain we are in isn’t psychological.

Comment from Paul Clay

I work in emergency medicine and critical care. Here’s what happened to opiod abusers. They couldn’t get prescription pills easily enough so the abuser went to heroin,which resulted in more overdose deaths in a few months more than i had seen in my 20 yrs. . If your goal was to kill off the abuser and make it more difficult for true needs patients then congratulations you have succeeded…

Comment from barbara williams

I was nave in thinking that when people are in pain that going to a pain clinic would fix everything. Going to the pain clinic did nothing. Tramadol took a bit of the edge off, but ganglion blocks, injections, trial l with spinal chord stimulator did nothing. We then tried alternative methods of chiropractor care acupuncture, calmare scrambler, ozone injections, dry needling and biofeedback to the tune of $10,000…

Comment from Arianne Grand-Gassaway

Relief from pain should not be a crime…

Comment from Angela Farthing

I am a victim of the 2012 Fungal Meningitis outbreak. I was injected with a contaminated vial of methylprednisone acetate to treat sciatic pain. Shortly thereafter I was diagnosed with fungal meningitis, suffered a stroke, a brain aneurysm, an intradural abscess, and ultimately adhesive arachnoidits. The arachnoiditis left me in horrific pain, pain that literally made me wish I never survived the meningitis (which I almost didn’t). When I initially told my doctors about the pain that left me crying on the floor, my plea for pain relief began…  I now take Low Dose Naltrexone and am completely opioid and synthetic opioid free…

https://edsinfo.wordpress.com/2015/12/22/one-pitfall-of-chronic-oral-low-dose-naltrexone/

DOCTORS:

Comment from Stephen Pew, Ph.D.

My own Mother ended her own life by starving herself because her chronic pain was mismanaged and the doctor would not allow her IV morphine to be administered even in the hospital because “she might get addicted”… I myself ended up in the emergency room with a kidney stone. I was shuffled around for over two hours in terrible pain because the ER was hesitant to administer care for pain. After an hour I was finally given an IV for pain and it was explained to me by the doctor that new regulations limited their ability to treat efficiently. No follow up opioid medication for pain was allowed…

Comment from Elayne Baumgart, Ph.D.

It would be one thing to remove opiates if you had something with which to replace them. Something that would effectively manage pain. But, you don’t…

Comment from Kathryn Rosenberg

I am a Family Physician with 33 years experience in the field. I began to see a pain specialist for back pain about 3 years ago mainly to prevent any questions about my use of opiates. Since then I have started Lyrica and ymbalta for pain control. I have found Tylenol to be of little use… I simply do not see how I could go on living if opiates were not available to me.

Comment from Paul McCurry

As an anesthesiologist, pain physician and addictionologist [made-up term], I applaud the CDC’s efforts to assist in curbing the current opioid addiction epidemic our country is experiencing… All of these adverse consequences are due to continued prescribing of drugs that have NO LONG TERM PROVEN EFFICACY…

Comment from Nathan Hitzeman

These recommendations look reasonable… As a primary care doc losing the war on chronic pain, I applaud the CDC for coming up with these guidelines!

Comment from Blaise Vitale

I am a family physician who regularly sees that chronic narcotics are simply ineffective for chronic pain. I know there are a lot of people who are addicted who think their lives will be ruined by stopping narcotics, but they simply can’t see how the narcotics are harming them. These guidelines may not go far enough to discourage opioids for chronic non-cancer pain. In particular, any patient who has any history of addiction to substances like tobacco or alcohol should never be prescribed these medications chronically. [This is what discrimination looks like.]

Comment from Adrian Bartoli

As a physician specializing in chronic pain management for the past 20 years, double board certified in Anesthesiology and Pain Management, involved in clinical research and the pharmaceutical industry, I strongly and unequivocally SUPPORT the CDC recommended guidelines for restrictions on opioid prescriptions…

Comment from Dr. Edwin Cabassa, DNP, FNP, BC

Unfortunately, there is a significant abuse for opiods in all socio-economic communities. Doctors and Nurse practioners are a major source for those seeking illegal use of such asnd ssimilar substances. My experience is such I will not prescribe opioids unless there is a definitive diagnosis indicating its use. From my panel of patients, I’ve been able to isolate my patients to just 3 who require opiods…

Comment from Maryn Sloane

As an MD board certified in addiction medicine with a sub specialty in the hopefully growing field of effectively treating opiate dependent chronic pain pts… [Someone is seeing lots of dollar signs…]

2. ANYONE on an opiate >30 days will develop opioid induced hyperalgesia… [Liar, liar, pants on fire.]

Opiates ARE NOT INDICATED EVER for neuropathic pain. They WORSEN IT. [Maybe in some patients, but not all.]

Man up docs! – JUST SAY NO!

it takes the simple writing of a prescription to create a substance dependent patient… [Speak for yourself, not everyone else.]

Chronic opiate users should be registered

detoxes should be offered for any pt on opiates for >1y

SUBOXONE MUST BE STANDARD OF CARE

Comment from Richard Webb, MD, Addiction Psychiatry

The use of opiates should be used with extreme caution in anyone with a personal or family history of addiction. [How many Americans don’t have a personal or family history of addiction?]

Comment from Maxwell Stepanuk

I am an orthopedic surgeon and the abuse of opioids is appalling… The problem, as I see it, is with the GPs. [Doctors turning against each other?]

Comment from Barry Saver

As a family physician who has spent my career working in the health care… I would say I have seen some patients genuinely helped by chronic opioid therapy for pain – but far more harm, including addiction, overdose, and diversion… Based on conversations with colleagues, at least 99% would happily accept a time limitation for how long they could prescribe opioids to an individual patient (with exceptions for oncology and palliative care)…

Too bad there aren’t many doctors who commented that still believe in medical science. (Still think doctors are on your side?)

Maybe you’re wondering if I made a comment? No, and I’m not sure I will. However, considering I am currently without bud and in a really bad mood, I might just change my mind. And since I don’t see a rule about how many comments one person can make, I’m sure I could wrangle some fun out of the experience. 🙂

Note:  Comments are due by January 13, 2016.

NEJM and censorship

Before you click  to post a comment on a website like the New England Journal of Medicine, I suggest that you copy, paste, and save it in a draft email. Because there’s a good possibility that your comment will never show up.

I posted the comment below on Tuesday of this week, which is still awaiting a moderator’s approval. What do you think, is there something offensive in my comment? Something to fear? How many other pain patients are silenced in the comment sections?

http://www.nejm.org/doi/full/10.1056/NEJMp1507136#t=comments

I think it’s tragic that more doctors won’t stand up for pain patients — and for medical science, which not only says that 16,000 overdoses out of tens of millions of opioid users is not an epidemic, but also that opioids are only dangerous to an extremely small patient population. In fact, chemotherapy drugs (and many others) are dangerous to a larger percentage of patients than pain medications.

As a 30-year intractable pain survivor, I thank my lucky stars, every single day, that I was able to overcome my addiction to the medical industry. (Not that I had much of a choice.) Having to depend on doctors to help me manage the constant pain was a waste of both time and money. What do doctors really know about pain, unless they’ve experienced it themselves? And even then, with the opioid war, what treatments can they offer? Pain patients have had their fill of antidepressants and other off-label medications.

I think the medical industry should thank PFROP for helping to destroy its reputation and causing patients to distrust doctors, and vice versa. And I want to thank Mother Nature for providing an alternative to being treated like a drug addict and criminal.

Will doctors become obsolete?

MedPage Today is written and read by doctors, which is why I think it’s important for patients to have a voice in that forum. Unfortunately, the website wouldn’t allow me to post a comment to this article, so I’ve got to post it here.

http://www.medpagetoday.com/Psychiatry/Addictions/54186?xid=nl_mpt_DHE_2015-10-21&eun=g875301d0r

“Nelson noted that most chronic pain does not respond optimally to opioids, and many patients can use better alternatives for chronic pain. ‘We have learned this the hard way over the past 20 years,’ he said.”

It appears that pain patients and doctors have learned completely different things over the past 20 years. With the experience of suffering from intractable pain for the last 30 years, I certainly don’t agree with this doctor’s opinion. (How many other pain patients would also disagree? And whose opinion is more important?)

In fact, I’d like to know which treatment options this doctor believes are “better” alternatives for the treatment of chronic pain. Better in what way? Better for each individual patient, insurance companies, the alternative medicine and addiction industries, or the DEA? (Breaking news: Walgreens and CVS employ addiction “counselors” at every pharmacy. Just $20 for an initial visit. Bupe prescriptions available. Thanks, President Obama!)

What does successful treatment for pain look like? If a pain patient doesn’t develop addiction, doctors consider that a success. Are doctors trying to treat pain or the mental illness of addiction? And how many pain patients really suffer from both?

Maybe I missed the research that proves any of these alternative treatments actually help a significant percentage of pain patients (like opioids do). But I haven’t missed the complaints by patients that show the amount of harm caused by the non-opioid treatments which are being forced upon them.

Which is more harmful, treatments like steroid injections and antidepressants or opioids? What about the pain patient who’s been spending an enormous amount of money on painful chiropractic adjustments for the last 5 years and hasn’t seen any improvement? There are many different levels of harm caused by non-opioid treatments (including financial), and yet doctors still use them because of the opioid war. When there are about 400,000 patients who die every year from medical mistakes, why should doctors (and law enforcement) decide which treatment options should be available to patients? Who are the experts here?

What pain patients have learned during the past few decades — while the drug war invaded their health care — is that trusting doctors and medical science is a big mistake. Research by survey is now considered evidence and used to shame and discriminate against patients. Long-term evidence doesn’t exist for most drugs, not just opioids, because no one wants to pay for it. Anecdotal evidence is the only thing left that doesn’t always include conflicts of interest.

“Study authors and the editorialists reported no relevant financial interests.”

Everyone knows that financial interests — whether deemed relevant or not — are not the only conflicts of interest that exist within these industries.

“‘There is virtually no data for safety or efficacy in chronic non-end-of-life pain, but patients are convinced that they need [opiate medications],’ Nelson added.”

Funny thing about medications that work — patients learn to ask for them. (And because of the drug war, drugs that work are worth more money in the underground market, so diversion will always happen.)

No one can deny that opioids work, and just like all other legal and illegal drugs, that means opioids come with side effects. Let’s see, which is more harmful in the long-term, chemotherapy or opioid therapy? Surgery or opioid therapy? Dulling chronic pain with alcohol or opioid therapy? Medical cannabis or opioid therapy? Instead of discriminating against one drug or another, why not utilize a combination so as to reduce the harm of a single one? C’mon, this isn’t rocket science.

With doctors like Lewis Nelson (practicing in New York, just like Kolodny from PFROP), who needs enemies? And when did patients become more knowledgeable than doctors? Within the last 20 years? I admit, I enjoy seeing doctors make fools of themselves because of the drug war. It allows me to imagine a day when doctors become obsolete, just like cars you have to drive yourself.