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

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.

Title fight: Big Pharma vs. The Feds

http://bigstory.ap.org/article/765439c771b649a7b6940fda87595735/effort-curb-painkiller-prescribing-faces-stiff-opposition

But industry-funded groups like the U.S. Pain Foundation and the American Academy of Pain Management warn that the CDC guidelines could block patient access to medications if adopted by state health systems, insurers and hospitals. Such organizations often look to the federal government for health care policies.

“Could block patient access”?  When will everyone else join pain patients in the real world? Patient access has already been blocked, patients have been abandoned by doctors, and these groups are still saying this “could” happen?

Which is better, groups funded by industry or those funded by the federal government? What about all of the people who don’t have the funds to pay for representation?

The CDC decision to delay its guidelines followed months of lobbying by physician and patient groups aligned with the pharmaceutical industry, who have almost always had a seat at the table in federal discussions on painkillers. As a result, they have had far more influence over federal policy than addiction activists, according to experts.

I can report that there are millions and millions of pain patients who are not “aligned” with anyone; do not have a seat at any table for discussions on painkillers; and have absolutely no influence whatsoever over federal policy. I can also report that there are thousands of drug addicts who similarly have no voice in this fight.

“They’re very well-funded and they have a lot of pharma money behind them,” said Dr. Lewis Nelson of New York University, an FDA adviser who is also advising the CDC on its guidelines. “And then you have the anti-addiction groups on the other side, which is clearly much less funded and organized.”

It’s funny how some people — usually those sitting in a seat of privilege — live in a bubble of their own made-up reality. Since Big Pharma funds both sides of this issue, and the federal government only funds the anti-drug side, which side is clearly better funded? And which side does the media report on?

CDC’s Frieden says more Americans are “primed” for heroin use because of their exposure to painkillers.

I call bullshit. There are hundreds of millions of Americans who have been exposed to painkillers with no problems whatsoever.

The CDC had not publicly disclosed the panel’s membership, but Twillman and other pain advocates identified several members, including two who are leaders with Physicians for Responsible Opioid Prescribing, a group working to reduce painkiller prescribing. That group is backed by Phoenix House, a network of rehabilitation clinics.

Also backed by the federal government, along with anonymous, right-wing, private donors (like ALEC  and the prison industry).

My comment:

I want to thank the AP for not describing Mr. Kolodny from PFROP as some kind of expert on pain management (as many other media outlets have done). Unfortunately, I can’t thank the AP for its biased reporting on these issues.

As a 30-year intractable pain survivor, I’m sad to say that my voice isn’t a part of the media’s reporting on the opioid war. But what’s really tragic are the millions of pain patients who also have no voice (or a seat at any table), silently suffering and fueling a suicide epidemic that everyone refuses to talk about. Because when up to three times as many people die by suicide every day than by drug overdose — and all the CDC (and the media) can talk about is how doctors are over-treating pain — then something is terribly wrong. Maybe one day, someone will figure out how to report on the difference between tens of millions of pain patients, and the thousands of patients who suffer from drug addiction. (And maybe one day, the word “epidemic” will have meaning again.)

Since I was able to recover from my addiction to the medical industry, I can only hope that other pain patients are able to do the same. I was very lucky to survive this addiction, but there will be many who do not. While almost everyone blames suicide on the victim, my own experiences have shown me that the blame doesn’t belong there. In fact, agencies like the CDC and DEA should be held accountable for every pain patient who chooses suicide as a last resort to manage their pain, and for every pain patient who ends up in jail for being forced to turn to the underground drug market.

Quackery

Wikipedia:  Quackery is the promotion of fraudulent or ignorant medical practices. A quack is a “fraudulent or ignorant pretender to medical skill” or “a person who pretends, professionally or publicly, to have skill, knowledge, or qualifications he or she does not possess; a charlatan”.

http://www.medpagetoday.com/Neurology/PainManagement/55268?xid=nl_mpt_DHE_2015-12-17&eun=g875301d0r

Mark Sullivan, MD, PhD, outlines steps for opioid tapering

We really need to look at whether patients consider their lives improved as a result of opioid treatment. My University of Washington colleague Jane Ballantyne, MD, and I recently published a commentary in the New England Journal of Medicine…

Many patients struggle with insomnia and anxiety as they taper opioids. It’s important that prescribers don’t add medications such as sedatives, benzodiazepines, or muscle relaxants that can increase risk of opioid overdose in unpredictable ways. Tricyclic antidepressants, like nortriptyline, can provide a safer alternative treatment for anxiety and insomnia.

Since antidepressants only work for (maybe) up to 30% of patients (and that’s for treatment of depression, not chronic pain, where the percentage is significantly lower), what other “safer” treatments do you suggest for anxiety and insomnia? And how do you treat symptoms like anxiety and insomnia that have arisen from the chronic pain itself? Oh, that’s right, doctors are refusing to treat pain, so now they can only “treat” the comorbid conditions — when they’re actually treating the pain with antidepressants…

Perhaps most “experts” don’t know this, but the use of antidepressants to treat chronic pain is actually off-label, except for a very few, specific, chronic pain conditions. Off-label use of medications (not approved by the FDA) has been under a lot of scrutiny lately and the results don’t look good (at least for the patients). So, what does it say about an “expert” who is advocating for off-label use of prescription medications? (Has the FDA approved the use of antidepressants for anxiety and insomnia?)

I have found that many patients in the subgroup taking high doses of opioids have untreated or undertreated psychiatric disorders, such as depression or post-traumatic stress disorder, which need to be monitored carefully. Opioids can mask symptoms of these disorders, so that when a patient comes off opioids these symptoms may reappear or worsen.

Opioids “mask” these symptoms, just like they “mask” pain? And when these drugs are taken away, the symptoms reappear or get worse? Dude, are you trying to say that opioids are actually treating PTSD and depression? And because of the opioid war, doctors have to take away these successful treatments? Replacing them with… antidepressants?

As I predicted, the only drugs doctors are going to prescribe for pain (anxiety, depression, PTSD, etc.) are antidepressants. Broke your leg? Here, have some Effexor. Dental pain? Here, have some Paxil.

My blood pressure increases every time I read one of these articles, but the scary part is that this quackery is becoming mainstream.

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.

PFROP hard at work in Washington state

http://www.clinicalpainadvisor.com/chronic-pain/uncovering-problem-opioid-use-in-chronic-opioid-therapy-with-patient-medical-records/article/427232/3/

In a commentary that accompanied the study in PAIN, Jane C. Ballantyne, MD, professor of anesthesiology and pain medicine at the University of Washington, Harborview Medical Center in Seattle…

“The risk indicators developed for the study could be very important for clinicians. We have scoring systems and risk stratification scores for other disorders. Clinicians may use these risk indicators to identify patients at risk. Then the question becomes what to do. The best course may be not to start those patients on opioids therapy or to take them off therapy. Most pain management experts agree that there are better options for many patients with chronic pain,” Ballantyne said…

Three out of four pain management experts advise using massage for their patients who suffer from constant pain? Expensive injections? Surgery? Tylenol or antidepressants? Please, someone list these “better options” to treat chronic pain.  (Free the weed.)

http://www.painnewsnetwork.org/stories/2015/7/17/study-opioid-overdoses-often-occur-at-low-doses

Based on the recommendations of this and other studies, Washington State’s Interagency Guideline on Prescribing Opioids for Pain was recently revised to caution doctors about prescribing opioids at any dose. The new guidelines extend to the treatment of acute pain, not just chronic pain. Physicians are also advised not to continue prescribing opioids to a patient if they don’t show “clinically meaningful improvement” in physical function, in addition to pain relief…

http://nhpr.org/post/opioid-prescribers-story-cautionary-tale-nh-faces-growing-crisis

Perhaps the state with the the most comprehensive guidelines is Washington, which was the first state to focus on physician behavior as a strategy to reduce opioid prescriptions. The initial guidelines were published in 2007 and included a “yellow flag” dose of a 120 mg daily morphine equivalent. The most recent update was released earlier this year and advises clinicians that the risk of overdose doubles at doses as low 20 mgs and increases nine-fold at 100 mgs or more.

David Tauben, chief of the University of Washington Division of Pain Medicine, says the guidelines have helped convince many physicians that chronic pain can be managed without opioids. But it didn’t come easy, he says. Physicians and patient advocates fought the changes, warning that chronic pain patients would suffer as physicians opted to stop prescribing opioids rather than adhere to the new rules. That never happened, Tauben says…

That never happened? Seriously? Okay, if that didn’t happen, what did happen? Can we hear from the patients?

https://painkills2.wordpress.com/2014/11/24/12112011-new-state-law-leaves-patients-in-pain-washington/

https://www.facebook.com/Chronic-Pain-in-Washington-State-can-you-hear-us-now-326440401098/

http://www.kvewtv.com/article/2014/sep/09/suicide-rates-washington-state-rise-slightly/

OLYMPIA – Three people take their own lives in Washington each day on average, and suicide remains among the top causes of death in our state. Rates of suicides and suicide attempts went up slightly in Washington from 2006 to 2012…

#InTheDoghouse2016

https://painkills2.wordpress.com/2014/12/24/buds-most-wanted-list-2015/

DEA

CDC

PFROP

Medical Industry

Addiction Industry

NEJM

Let me translate that for you

http://www.huffingtonpost.com/entry/solutions-heroin-crisis_5655f0afe4b079b28189efcd

Famed Historian Sees 19th-Century Solution To Current Heroin Crisis

We need to focus on preventing new addictions and using the harm-reduction approach to treat current addicts.

It sounds like a good plan, right? But let me translate this for pain patients:

Any person who experiences pain — whether acute or chronic — and seeks medical assistance will now be given an ice pack and told to buy a heating pad.  Whenever a patient complains of pain, doctors will automatically think that patient is a drug addict. Instead of looking for a source of the pain, doctors will refer patients to addiction clinics.

You will begin to hear doctors say:  There’s nothing I can do — just accept your pain and get back to work (you big sissy).

http://nationalpainreport.com/accepting-pain-more-important-than-reducing-pain-intensity-because-opioids-are-harmful-docs-write-in-nejm-commentary-8828494.html

People suffering in chronic pain need to learn to accept it because “achieving a balance between the benefits and potential harms of opioids has become a matter of national importance,” wrote two influential doctors who advocate for changing opioid prescribing practices in a commentary for the esteemed New England Journal of Medicine…

I usually learn more from the comment section than from the articles, and this comment section has some really great comments. 🙂 And here’s the NEJM article (looks like they went to the dark side):

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

For three decades, there has been hope that more liberal use of opioids would help reduce the number of Americans with unrelieved chronic pain.

I’m sorry, but how would that even be possible?  Are opioids supposed to do handstands and perform miracles? No matter your dosage of opioids, it’s unlikely that they will provide “unrelieved chronic pain.”  That’s not even possible. (Unless you didn’t suffer from chronic pain to begin with.)

I was reading an article at MedPage Today about doctors with addictions. One said he suffered with unrelieved and undiagnosed chronic pain for 10 years. He finally got some painkillers and got addicted. Then, he detoxed and now he’s “pain-free.” He says he suffered from hyperalgesia. Maybe it’s because I’ve never experienced this phenomenon that I can’t understand what this doctor is talking about — his story doesn’t make sense. It sounds like some other doctor convinced him that the opioids were the cause of his pain, and he believed it. Almost like a placebo effect?

Instead, it produced what has been termed an epidemic of prescription-opioid abuse, overdoses, and deaths — and no demonstrable reduction in the burden of chronic pain…

Really?  It’s going to be hilarious, ten years from now, when the experts learn the results of the opioid war — when they have to finally admit how much opioids have helped patients survive. There will be lots more people on disability, more homeless, more suicides. Yes, and more overdoses, just with different drugs.

And when any “expert” deems 16,000 deaths out of tens of millions of opioid users to be an epidemic, I tend to stop listening. In other words, I didn’t read any more of this article — I don’t mind wasting time, but not on crap like this.

Even though I didn’t read the whole article, let me translate it for you:

Pain patients:  It’s all your fault.  Signed, the Medical Industry

Can addiction be cured?

http://www.painmedicinenews.com/ViewArticle.aspx?d=Policy%2b%26%2bManagement&d_id=83&i=November+2015&i_id=1244&a_id=34181&tab=MostEmailed

“The difference between a patient in chronic pain and a person who is addicted is, with addiction, we expect a cure,” Dr. Lewis said. “We expect the patient will recover to the point that they can maintain some cured state—even if they’re on methadone; the goal is to integrate them back into society.

“That doesn’t happen with chronic pain,” she continued. “Chronic pain is progressive. It’s associated with a multisystem injury to the body, and it’s not going to be cured. So what we want to do is give that person the most optimal tools, in spite of what has happened to them. It’s a big difference in approach.” …

This is a good point, but I’m not sure that we should expect those who suffer from addiction to be “cured.”  Maybe “recovered” is a better term. Because I’ve had addictions that I’ve overcome, although I can’t say that I’m “addiction-free.” After all, I’m human, not a robot. (C’mon, sugar isn’t as bad as heroin, right?)

So, if someone’s using methadone to successfully treat a drug addiction, does that mean they’re “cured”?  Here’s what I’m saying:  Some drug addictions will require life-long management, so forcing the expectation of a “cure” on addicts is not the way to go. Just like the pain management industry should stop telling patients that their pain can be “cured.”

In my search terms:

“can a politician in my community help me fight unum for my ltd benefits”

Wow, this is a really hard question to answer…  (Please note sarcasm.) I guess that depends on how much money and influence you have. I mean, anti-drug advocates spend a lot of time and money on politicians, and it obviously works.

Unfortunately, the problem with Unum and LTD benefits exists in the federal government, not state or local governments. It’s all about the ERISA law, which no one really understands. Basically, ERISA should be renamed to something like URFUCKED.

More ER visits for anti-anxiety and insomnia medications than opioids

https://edsinfo.wordpress.com/2015/10/30/good-bad-and-ugly-of-cdc-proposed-opioid-guidelines/

http://paindr.com/good-bad-and-ugly-of-cdc-proposed-opioid-guidelines/

Under comments:

Mary Maston
MSK Advocate
October 23, 2015 at 1:16 PM

When you’re this sick every single day, it’s exhausting to jump through all of the hoops just to feel decent for 30 days and then worry that your doctor’s attitude or opinion may have changed in that 30 days, or that he or she is being pressured to prescribe less and will cut you back drastically or drop you altogether, or he or she will be investigated by the powers that be and that you may not be able to get them the next month. While I still believe in our rights to pain control and the medications that help, and I will continue to fight for that until my last breath, I do it while I’m personally suffering. If marijuana were legal in my state, I’d use it in a heartbeat, but it isn’t. So I just suffer with rocks in both kidneys and chronic cystitis that nobody can do anything about. I think this is exactly what PROP, the CDC, the FDA, and the DEA want, and it’s exactly what they’re getting…

Ironically, there were more ER visits for anti-anxiety and insomnia medications in 2013 than there were opioids, according to their own reports, but we’re just going to sweep that little fact under the rug and ignore it, because the war is on opioids right now…

http://www.cdc.gov/drugoverdose/data/overdose.html

Drug misuse and abuse caused about 2.5 million emergency department (ED) visits in 2011. Of these, more than 1.4 million ED visits were related to prescription drugs. Among those ED visits, 501,207 visits were related to anti-anxiety and insomnia medications, and 420,040 visits were related to opioid analgesics…

And how many were “related” to the combination of prescriptions drugs and alcohol? Now compare all of these to how many were “related” to cannabis. Prescription drugs and alcohol are legal, while cannabis remains a Schedule 1 drug — which is why the DEA should change it’s name to the Hypocrisy Enforcement Agency.

Do doctors think pain patients are grieving cattle?

The pain management industry (and our enemies in New York) are busy trying to prove that opioids don’t work. But no matter how they mess with the data, they’re not really proving anything — just publicizing how patients who suffer from lower back pain can expect to be treated in the ER.

http://www.medpagetoday.com/PainManagement/BackPain/54202?xid=nl_mpt_DHE_2015-10-22&eun=g875301d0r

“These findings do not support the use of these additional medications in this setting,” Benjamin W. Friedman, MD, MS, of Montefiore Medical Center, Albert Einstein School of Medicine in New York City, and colleagues reported online in the Journal of the American Medical Association (JAMA).

“Opioids, when combined with naproxen, are not more effective than naproxen alone for the majority of patients with low back pain,” Friedman said in an interview. “We demonstrated that adding cyclobenzaprine or oxycodone/acetaminophen to naproxen is unlikely to benefit the patient. Emergency physicians should counsel their patients that passage of time will bring improvement and eventual relief to most patients,” he told MedPage Today…

ER doctors “should” tell their patients that time will help their pain. I think that’s what grief counselors tell their patients, too. And don’t you just love how these studies purport to tell us which medicines work for the majority of patients, instead of using a more personalized view? Are we cattle, our treatments decided by what the herd says (according to doctors)? That might work for vaccines, but it makes no sense to use that sort of mentality for treating pain.

Even though I don’t suffer from lower back pain (except from old age), I’ve taken my share of Anaprox and it never helped me at all. Just caused some nausea (at the larger doses). And this was during a time when my pain levels were lower than they are now.

What patients want doesn’t matter, because if you suffer from lower back pain and end up in the ER, they’re not going to treat your pain. Because opioid war:

“Our data leave clinicians and patients in a difficult position,” Friedman told MedPage Today. “Many patients have already taken NSAIDs for LBP before they arrive in the ED. Some patients may have taken insufficient doses at incorrect intervals and could be instructed to optimize their NSAID regimen. But for those patients who have already optimized their NSAID regimen, there are no additional evidence-based medical therapies available.” …

Acute low back pain is a frustrating condition, acknowledged Friedman in an interview. “In general, a majority of patients with acute onset LBP report persistent suffering 1 week later. By 3 months, however, the majority has improved.” …

Liar, liar, pants on fire. You can’t conclude that a majority improve with just this study of 323 people, especially since those patients only suffered from back pain for 2 weeks or less. But you know they’re going to use studies like this to say that those who suffer from chronic back pain are to be treated the exact same way in the ER — here, have some NSAIDs (and a ridiculous hospital bill).

And while doctors may believe that lower back pain is a “frustrating” condition, those who suffer from it feel quite differently. Patients are more worried about survival than annoyances. And you know what, doctors? You’re all becoming annoyances… doctors are the “frustrating condition” that all pain patients are suffering from.

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.

An ADA lawyer’s advice for chronic pain patients

http://www.pharmaciststeve.com/?p=12249

Essentially, the doctors you speak of appear to be denying services based on your disability which necessitates that you be prescribed pain medication in accordance to medical evaluation and as consistent with any treatment deemed necessary by a given doctor or specialist. Whatever the reasons for these refusals to treat, doctors are liable under Title III of the ADA for failing to provide their services to patients based on any stigma or stereotype associated with anyone who has a condition that imposes chronic pain. Moreover, a doctor is likely violating ethical codes by refusing to treat a given patient when the doctor is licensed appropriately to treat as a general practitioner and/or specialist in a given area. Hence, they may decline to treat patients that require medical services from a different practice area. But they may not decline to treat patients inside their scope of practice and/or they may not decline to provide a helpful referral even if the condition is outside their area of practice.

I would recommend that you forward them this response and seek to obtain treatment so as to avoid filing complaints against these doctors under the ADA and other applicable laws…

I am available for questions.

Regards,
Diego Demaya, J.D.
Southwest ADA Center
TIRR Memorial Hermann
1333 Moursund St.
Research Center 2nd Flr. Suite 212
Houston, Texas 77030
Toll Free: (800) 949-4232
Office: (713) 797-7114
Fax (713) 520-5785
E-Mail: diego.demaya@memorialhermann.org
Web: http://www.SouthwestADA.org

Under comments:

Bob Schubring, on October 21, 2015 at 2:20 am said:

The Montana doctors who are being persecuted by the assistant AG, are powerless against him…but their patients have the right, under ADA, to sue his boss (the AG), and demand the right to be treated for pain. Moreover, they also have the right to demand payment from Montana, of their legal fees and costs, of asserting that right…

Yes, it’s true. The US Justice Department has an ADA office with the power, theoretically, to act. The difficulty anyone in that office will have, in bringing a case, is that the DEA constitutes a large percentage of the Justice Department’s payroll and budget. It’s going to be quite a trick, for the ADA lawyers to keep their jobs at the Justice Department, if they go up against the entrenched forces of the DEA and the Drug War lobby. This is a clear conflict of interest. Accordingly, anybody at the ADA office willing to help pain patients, needs all the help we patients can provide…

Seems to me that this advice would also work for medical cannabis patients. But what it will come down to is the question of which treatments have been proven effective — and approved by the FDA (and now the CDC). Of course, we all know about the flaws in allegedly evidence-based research, so I don’t know how either side will “prove” their beliefs. Considering the questionable ethics of the scientific and medical industries, perhaps we should start relying more on anecdotal evidence.

Another question will be who is considered a “legitimate” pain patient. Which painful medical conditions deserve treatment? Only cancer or terminal conditions?

Doctors will argue that evidence for treating long-term chronic pain with opioids (or cannabis) doesn’t exist, and will try to prove there’s more harm than benefit with these treatments (especially to the public). Doctors and parents will continue to tell stories of lives ruined by drug abuse and addiction, and shout, “It’s a crisis! It’s an epidemic! And it all started with (name any drug)!”

But there’s no evidence that other treatments for pain are successful, so as always, the question becomes:  What are the alternatives? There’s an abundance of evidence for the harms associated with all other treatment options besides opioids, so who’s going to dictate which treatments patients are allowed access to? It doesn’t make sense (and it won’t work) for government agencies, law enforcement, and the medical industry to make decisions for patients — we’re the ones suffering, not them.

(2010) Lies, Damned Lies, and Medical Science

https://edsinfo.wordpress.com/2015/10/18/lies-damned-lies-and-medical-science/

http://www.theatlantic.com/magazine/archive/2010/11/lies-damned-lies-and-medical-science/308269/

Though the results of drug studies often make newspaper headlines, you have to wonder whether they prove anything at all. Indeed, given the breadth of the potential problems raised at the meeting, can any medical-research studies be trusted?

That question has been central to Ioannidis’s career. He’s what’s known as a meta-researcher, and he’s become one of the world’s foremost experts on the credibility of medical research. He and his team have shown, again and again, and in many different ways, that much of what biomedical researchers conclude in published studies—conclusions that doctors keep in mind when they prescribe antibiotics or blood-pressure medication, or when they advise us to consume more fiber or less meat, or when they recommend surgery for heart disease or back pain—is misleading, exaggerated, and often flat-out wrong. He charges that as much as 90 percent of the published medical information that doctors rely on is flawed…

In poring over medical journals, he was struck by how many findings of all types were refuted by later findings. Of course, medical-science “never minds” are hardly secret. And they sometimes make headlines, as when in recent years large studies or growing consensuses of researchers concluded that mammograms, colonoscopies, and PSA tests are far less useful cancer-detection tools than we had been told; or when widely prescribed antidepressants such as Prozac, Zoloft, and Paxil were revealed to be no more effective than a placebo for most cases of depression; or when we learned that staying out of the sun entirely can actually increase cancer risks; or when we were told that the advice to drink lots of water during intense exercise was potentially fatal; or when, last April, we were informed that taking fish oil, exercising, and doing puzzles doesn’t really help fend off Alzheimer’s disease, as long claimed. 

Peer-reviewed studies have come to opposite conclusions on whether using cell phones can cause brain cancer, whether sleeping more than eight hours a night is healthful or dangerous, whether taking aspirin every day is more likely to save your life or cut it short, and whether routine angioplasty works better than pills to unclog heart arteries…

Baffled, he started looking for the specific ways in which studies were going wrong. And before long he discovered that the range of errors being committed was astonishing: from what questions researchers posed, to how they set up the studies, to which patients they recruited for the studies, to which measurements they took, to how they analyzed the data, to how they presented their results, to how particular studies came to be published in medical journals…

Scary stuff, right?

When was the last time your doctor recommended a treatment based on faulty research? (How often do doctors treat women with drugs that were only tested on men?) Well, it happens every day. But looking even further than that, government agencies use this faulty research to make restrictions, regulations and laws, especially in the drug war.

In the opioid war, groups like PFROP provide this faulty research as proof of their positions, and often it’s research performed by the very members of these groups, or for anti-drug agencies that agree with their agenda. And don’t count on the media to uncover conflicts of interest or faulty research — the media is part of the problem.

How long have we been using abstinence-based programs to treat addiction when they’ve only been proven to work as well as a placebo? Not that the placebo effect should be discounted, but only a small percentage of people respond to the placebo effect. The rest of us, somewhere between 75% and 90%, are then blamed when these treatments don’t work.

Let’s look at PTSD. Is there credible evidence that currently-used treatments are effective? Treatment that makes PTSD sufferers re-live their experiences can’t possibly work for every single person, while I assume it can actually do a lot of harm. Yet doctors force these treatments on patients as if it’s the best choice, many times regardless of the side effects.

Doctors should finally admit that, even with all their education and experience, they don’t have the ability to tell patients which is the best treatment choice. Patients have to decide. But our health care system doesn’t work that way. The DEA, CDC, FDA, insurance companies, State Boards, doctors — they make the decisions and patients just have to accept it. Decisions often based on faulty research.

Part of the reason that women are often discriminated against within the medical community is because we don’t stand up for ourselves. Mostly male doctors play the unwelcome role of father-like figures, telling us to discount our symptoms because we’re just weak women.

Both women and men need to learn that doctors are not infallible; they’re not gods. Just ask the 400,000 patients who die every year from medical mistakes. Yes, doctors have a lot of power over us, and it can be hard and painful to reclaim that power as patients. You may not be able to do it today, but doesn’t it give you a warm and fuzzy feeling inside to look at a future where you make your own medical decisions? Do we really need doctors to help us make these decisions, especially when doctors are relying on junk science?

How about a study that compares the success of a doctor’s choice for treatment versus the patient’s choice for treatment? Which group will have the best outcomes?