Dear Power Brokers at the CDC:

When you suffer from insomnia because you can’t manage your pain, you have lots of time to do stuff like this:

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

Dear Power Brokers at the CDC:

After my doctor of 8 years passed away, I was forced to find another pain doctor in a different state. But after a short time, that doctor abandoned me to a cold-turkey detox and a close call with suicide. (I’ll never forgive you for that, Dr. Forest Tennant.)

After 25 years as an intractable pain patient, I finally decided to give up on the medical industry (after it took all my money and did more damage than good). But I had to move to another state to access a medical cannabis program (the cost of which, after a year in the program, was not in my Social Security Disability budget).

Because, you see, I’m not ashamed to admit that I’m one of the tens of millions of pain patients who cannot manage their constant pain without assistance. Yes, I’m off all the pills (thank you very much), so I know all too well what many pain patients are now facing — whether the CDC enacts these new regulations or not.

I’m also an intractable pain survivor who is not dependent on doctors, which means I’m no longer afraid to speak out. (Perhaps I should warn you that this is only my first comment.)

This country is not in the midst of an opioid “epidemic” (unless the definition of epidemic has changed). While the patient groups for chronic pain and those who suffer from addiction overlap, they are two separate and distinct groups. And both groups have a high risk of suicide. If more people die from suicide than from opioid-related causes, which is the epidemic?

Why is the CDC more concerned about the opioid war than it is about the suicide epidemic? Why is this agency advocating for torture instead of the adequate treatment of pain? Why is the CDC only concerned with addiction instead of the true epidemic of chronic pain? (Does this agency understand the difference between the two?)

In the future, I guess the CDC can’t and won’t be held accountable for the tragedies and deaths that will follow these new regulations, but there is no doubt that it WILL be responsible. And don’t think that 100 million pain patients will ever forget that.

The way I see it, the CDC can align itself with PFROP and the DEA (and against suffering patients), ending up on the wrong side of the drug war. Or, it can align itself with the facts, and in the end, save some lives. I guess it will all depend on how much the CDC wants to retain its already battered name and reputation.

I’ll be back. 🙂

(Also posted at https://painkills2.wordpress.com/)

Your Comment Tracking Number: 1jz-8mzf-fwp8

Your comment may be viewable on Regulations.gov once the agency has reviewed it.

Guess what?  I’m back already…

If the CDC is going to advocate for torture instead of the adequate treatment of pain, then it should spend just as much time advocating for a federal right-to-die law. If there is an attorney willing to take my case for the right to die, without first being diagnosed with a terminal condition, please contact me at painkills2@aol.com.

Your Comment Tracking Number: 1jz-8mzf-vhau

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Thinking of you, Shannon Schieber

https://www.propublica.org/article/flawed-rape-statistics-hamper-understanding-and-preventing-the-crime

(12/18/2015) Rape is Rape, Isn’t It?

Today, the FBI’s Uniform Crime Reporting program — the most widely cited source for national crime statistics — includes male victims, as well as female victims who did not actively try to fend off their attackers…

The change has had a profound effect, showing that rape in America is a far more wide-ranging problem than the agency previously reported. In 2012, the last year before the new definition went into effect, the FBI estimated that 85,141 rapes occurred in the U.S. In 2014, the most recent year available, the number jumped to 116,645 rapes — a 37 percent difference.

The new figures don’t mean that legions of rapists have suddenly run amok. In fact, using the old definition, rapes have decreased slightly. Nor do the new numbers capture all rapes — surveys show only about one in three sexual assaults is reported to police. Instead, the numbers show that the FBI has recognized a new class of victims — people whose sexual assaults were previously unreported, or were hidden in other offense categories…

Fromson was working for the Philadelphia-based nonprofit Women’s Law Project in 1998 when a doctorate student at The Wharton School of the University of Pennsylvania named Shannon Schieber, 23, was raped and killed in her small studio apartment in that city’s downtown. Her murder set off a frantic search for the attacker. By the time Troy Graves was captured four years later, he had been linked to nearly a dozen other attacks on women. He was dubbed the Center City rapist.

During the investigation, it emerged that Graves had raped several women before killing Schieber. But Philadelphia police officers had decided two of the women’s claims were not worth investigating. They tossed the cases aside — and with them, a chance of stopping Graves…

Schieber’s rape and murder came at the same time as an investigation by The Philadelphia Inquirer, which found that the sex crimes unit of the Philadelphia police department had buried thousands of sexual assault cases over the decades — dismissing women’s complaints as groundless with little or no investigation…

And Fromson says that she has seen improvements in how police handle rape cases.

Ultimately, the police determined that more than 1,800 crimes had been incorrectly dismissed, including 681 rapes. Thirty-three men connected to the re-opened cases were convicted, the Inquirer reported…

In December 2011, more than 10 years after the women’s organizations sent their letter asking the agency to change the definition of rape, former FBI Director Robert Mueller made it official…

Psychology Practice Revealed Patients’ Mental Disorders in Debt Lawsuits

https://www.propublica.org/article/new-jersey-psychology-practice-patients-mental-disorders-lawsuits-debts

The greatest fear of many patients receiving therapy services is that somehow the details of their private struggles will be revealed publicly…

Short Hills Associates in Clinical Psychology, the group based in New Jersey that treated Philip, has filed dozens of collections lawsuits against patients and included in them their names, diagnoses and listings of their treatments.

In cases in which the patients were minors, the practice sued their parents and included the children’s names and diagnoses.

The Health Insurance Portability and Accountability Act, the federal patient privacy law known as HIPAA, allows health providers to sue patients over unpaid debts, but requires that they disclose only the minimum information necessary to pursue them.

Still, the law has many loopholes, which ProPublica has been exploring in a series of articles this year. One is that HIPAA covers only providers who submit data electronically — and apparently Short Hills Associates does not…

Fuckin’ Sing!

I awoke from a nap to a sharp pain in my leg. Felt kinda like a muscle cramp, but worse. As I sat up in bed, whimpering, with tears running down my face, I thought about screaming…

Instead, I began to sing:

Well, I lay my head on the railroad tracks, waitin’ on the Double E…

Poor, poor, pitiful me

Poor, poor, pitiful me

But then I couldn’t remember any more of the words to that song, so I switched to Miley Cyrus:

It’s our party we can do what we want
It’s our party we can say what we want
It’s our party we can love who we want
We can kiss who we want
We can sing what we want

Hands in the air like we don’t care

Can I get a hell no?

To my home girls here with the big butt
Shaking it like we at a strip club

So la da di da di

And we can’t stop
And we won’t stop
We run things, things don’t run we
Don’t take nothing from nobody…

Try it. You’ll like it. 🙂

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.