Scared

My wife and I had our quarterly pain follow up appointments with our PCP Wednesday afternoon. We always schedule two appointments ahead so that we don't have any problems getting in. When we reminded the receptionist that the appointment in three months wasn't adequate and she needed to schedule one in six months, she let slip the information that our doctor is leaving in four months. He has NO PLAN moving forward and hasn't even talked to any of the other providers in the office about taking on our cases. Every pain management office has refused our cases because they're medication management cases, which means that they can't make obscene money. The other doctors in the office have been extremely vocal about their objections regardless his management of our case. There are a few new providers that haven't chimed in, but two of them are PA-Cs (physician's assistants), which can't prescribe CIIs.

Steve

Promising Results for New Trigeminal Neuralgia Drug - National Pain Report

Promising Results for New Trigeminal Neuralgia Drug - National Pain Report
http://bit.ly/1uzi9kP

This is a novel compound, not a patent extension or reformulation. It's another sodium channel blocker, but it is being specifically developed for Trigeminal Neuralgia. I doubt this will be a game changer, but I do believe that having another treatment option has the potential to help many people.

Updated "About Me"

If anyone is interested, I've updated the "About Me" section


-----Updated Text-----
I apologize for not updating this part of my site for a while, but I've been fighting with the incompetent, ignorant, rude imbeciles who run CYS (Children & Youth Services) for over six months concerning my wife's and my need for prescription opioids. I've been told that they've never gone after people as hard as they've been going after us, that includes heroin addicts and crack whores. They routinely lie on court paperwork, leak confidential records, commit perjury, and they're constantly change their story & accusations. We've had to prove that we are ill enough to require opioids, but not too ill that we can't care for our daughter. Thankfully, our family doctor has not abandoned us. He knows how much these medications help us and he knows that our daughter is well taken care of. Thankfully, my state has never had a law allowing children to be taken from disabled parents and there are federal laws (i.e. Americans with Disabilities Act) that protect us, slightly. Unfortunately, we still have to prove that our medical conditions don't prevent us from caring for our daughter. Aside from our doctor, we have our almost useless lawyer who can't schedule a meeting, and a great subcontracted (not a CYS employee) parent educator who isn't afraid to tell the truth, even if it isn't popular and even if it contradicts her conclusions. We've also been complying with their ridiculous WEEKLY urine drug testing (costs taxpayers $100/test per person). I really wish that they'd switch to saliva testing, or better yet hair testing, which covers the last 3 months (more, if you're willing to pay for it) instead of the 2-3 days that UDT (urine drug testing) covers. I did the math once and found out that you could buy a VERY nice car with the money that they've spent harrassing us and violating our rights. Privacy is a thing of the past.

Pills for Breakfast: Five Things I Wish I Knew Sooner About Chronic Pain - NPR

Pills for Breakfast: Five Things I Wish I Knew Sooner About Chronic Pain- National Pain Report
http://bit.ly/1uVOIve

I'm sure we all have many things we'd line to add (feel free to list them in the comments below), but this it's a great article.

Steve

OT - FDA Approves New Opioid Addiction Treatment

FDA Approves New Opioid Addiction Treatment - National Pain Report
http://bit.ly/1oQMbPd

This isn't a new drug, just a new formulation of buprenorphine, but it's worth noting anyway.

Some of you may be wondering why I'm paying about an addiction treatment and it's a valid question. As pain patients, we are constantly grouped with addicts and we need to stay informed. Also, some PMs have prescribed Suboxone for pain, which is stupid because buprenorphine only treats pain with doses below 0.3mg/300mcg per day (Butrans is the only buprenorphine product capable of treating pain). The reason why doses above 2mg don't work for pain is that buprenorphine is a partial mu-opioid agonist (it acts like naloxone/Narcan and naltrexone at high doses and blocks opioids).

If we don't know the names of these addiction treatments, PMs can lie to to us.

SUBOXONE, BUNAVAIL, BUPRENEX, SUBUTEX, ZUBSOLV, AND ALL GENERIC BUPRENORPHINE PRODUCTS ARE FOR ADDICTION TREATMENT ONLY, DO NOT TAKE THEM FOR PAIN. Buprenorphine pills aren't for pain, only buprenorphine patches treat pain.

Steve

DEA official blames pharmacists, doctors for pain-med denials | Drug Topics

DEA official blames pharmacists, doctors for pain-med denials | Drug Topics
http://bit.ly/1kaNunT

GW Pharmaceuticals cannabinoid for cancer pain likely to have encouraging US market penetration, abuse possibility uncertain – experts

GW Pharmaceuticals cannabinoid for cancer pain likely to have encouraging US market penetration, abuse possibility uncertain – experts
http://ctcaho.pe/1lfsPUe

Although approval is limited to cancer related pain, Sativex should be made widely available due to a relatively low abuse potential for patients who don't get enough relief from opioids alone.

As a Marinol/dronabinol user, I'm excited about the possibility of a cannabinoid product without the intense high and unpredictable absorption of oral THC (Marinol). I can also verify the article's assertion that cannabinoids alone are inferior to cannabinoids added to to opioids.

I'm not sure if I'm the only one, but I'm extremely excited for this new, non-opioid (& opioid boosting) pain medication. I also find reports like this one reassuring, and a little exciting (I'm sure it's no big deal for patients in medical cannabis states, but it's important for those of us in Republican hell states, we have no cannabis, no Medicaid expansion, and we're desperate for a decent cannabinoid (oral dronabinol is terrible & the Marinol inhaler is stuck in clinical trials)).

Steve

Generic Celebrex Approved by FDA - National Pain Report

Generic Celebrex (celecoxib) Approved by FDA- National Pain Report
http://bit.ly/UhqsXD

While the prices will drop a little once these are available, the real price drop will occur in about six months, when multiple generics become available for each strength (Teva has exclusivity on 100mg, 200mg, & 400mg celecoxib & Mylan has exclusive marketing rights for 50mg celecoxib).

Of course, for insured patients, generics typically have a set generic copay and the only price drop they'll see is in their copay.

For uninsured patients, multiple generic manufacturers are a necessity because they have no price insulation.

Don't forget to ALWAYS use an Rx discount card for any prescription not covered by your insurance (if you have any).

Also, the Partnership for Prescription Assistance can help you find programs that offer free & discount drugs (my wife gets 30 Duragesic per month for $0.00, courtesy of Johnson & Johnson (owner of Janssen) thanks to PPARx.
http://pparx.org

10% effective, 7.7 billion dollars (Fibromyalgia Blockbuster Drugs)

Fibromyalgia Drugs: Successes or Failures? - National Pain Report
http://bit.ly/1gRHsrI

My Story: The Dark Side of the Anti-Opioid Campaign - National Pain Report

My Story: The Dark Side of the Anti-Opioid Campaign - National Pain Report
http://bit.ly/1unVrhi

This article, and the comments, really say it all. The anti-opioid propagandists are doing nothing to fight drug addiction, but their restrictions are destroying HUNDREDS OF MILLIONS of lives. Even the lucky few who have prescriptions are afraid to sneeze wrong or risk being cold turkeyed.

Summer Break

I haven't been paying much lately because my wife and I have had ridiculously busy weeks topped off with our daughter's kindergarten graduation yesterday (Tuesday). Her last day of school is tomorrow (or, rather, today... Thursday) and it's a half day (they get out at 10:45am).

While I'm extremely excited for her schedule to open up so that we can do more fun stuff (summer reading program, zoo trips, beach, museums, etcetera), I'm also worried about returning to chasing after her all day and all of the other things that go along with being a parent with chronic pain.

I've made rules for myself to prevent the typical cycle of over exertion & paying for that over exertion. I don't have them all written down, but they include (in no particular order):
1) TAKE BREAKS
2) "No" isn't a dirty word
3) Neither is "later"
4) kids don't need you to literally chase after them, just keep them within your eyesight when outside your home
5) Play dates are your friends (when you watch other people's kids, they really entertain your kid and you get free time when their parents return the favor)
6) don't afraid to ask for help
7) Kids will test you anytime things change, enforce discipline in June so July & August are smooth sailing
8) Don't forget your pain medication & don't skip doses, keeping your pain under control makes you a better parent
9) when you need a break, ask/tell your kid(s) to
10) DON'T BE SO JUDGEMENTAL/HARD ON YOURSELF
11) make time for yourself
12) make time for you & your significant other

Steve

Acetaminophen, Opioids, and Safety

Acetaminophen, Opioids, and Safety- Medscape
http://bit.ly/SpUhUq

It sickens me that hydrocodone/APAP 5/500 is still available. No one should have to cost between talking enough hydrocodone & not damaging their liver with acetaminophen/paracetamol/Tylenol (APAP). 500mg APAP gas not been shown to be superior to the safer 325mg APAP. Of course, they never added the acetaminophen for pain relief, it us there to prevent people from taking more hydrocodone that prescribed (doesn't work), which is why hydrocodone is CII, but hydrocodone/APAP is CIII (less restrictive).

Opinion: Bill Would (Have) Force(d) Drug Makers to Make Painkillers Tamper Resistant

Bill Would Force Drug Makers to Make Painkillers Tamper Resistant- National Pain Report
http://bit.ly/1kYSnVB

I know that this story is about two years old, but there is talk of reviving this bill in light of the Zohydro (non-tamper-resistant hydrocodone ER).

There are several problems with tamper-resistant opioids:
1) tamper-resistant opioids don't always work as well (or at all)- they're tested on healthy people who have an easier time absorbing them (the healthy people have to absorb them within a 30% tolerance)
2) they don't stop people from abusing them, but it does weaken the "high", which causes them to go to diacetylmorphine/diamorphine/heroin
3) they increase pharmacy prices, which makes it harder for pain patients to afford their medications
3b) increased pharmacy prices lead to increased street prices, which causes addicts (& sometimes even pain patients) to switch to heroin
3c) street heroin has unknown potency, unknown impurities, & poor oral absorption causing people to resort to intravenous injections

The ONLY way to reduce the harm caused by drug addiction is to switch from the law enforcement model to a treatment based model and to LEGALIZE ALL DRUGS (private prisons and the DEA would lose money, so they spend a small fortune fighting this). Legalization (& the drop in prices that this would cause) would eliminate the violence, crime, and disease (people inject heroin because it HA poor oral absorption & injecting is cheaper- same high from less drug; legal drugs also lack the dangerous impurities found in street heroin).

Rat Park

Rat Park Comic

Please check out the comic version of the Rat Park experiment, which shows that opioids are not the addictive demons that we've been told that they are.

http://bit.ly/ratpark

Be sure to check out the "Links/Articles" page on there right for more great resources, such as the Intractable Pain Patients' Handbook for Survival.

Steve
IntractablePainKills@gmail.com

Update

My wife and I had a hearing today and the judge sided with us. He told CYS that they had until August to close the case (or find some evidence).

Unfortunately, CYS going to continue with the extremely intrusive weekly urine testing (wasting $200 taxpayer dollars each). I feel so bad for the people who collect the smiled because it isn't their job and the guy wants to quit because if it. The stupidest part is that saliva testing would be just as useful and hair testing would be superior (hair testing goes back 2-4 months, but urine & saliva only go back 2-3 days). The worst part is that you have no choice. As a victim of sexual assault, being forced to allow someone to watch you urinate is not easy (thank God for Ativan & Xanax).

Anyway, back to the hearing, the judge was not happy about CYS's behavior and he wasn't buying any of their bullcrap. He could tell that we were not drug addicts and he could tell that we weren't invalids. Our "parent educator" really blew their bullshit out of the water, as did our doctor's testimony.

Anyway, thank you to everyone who prayed for us or kept us in your thoughts.

Steve

Miss Understood: The Ungrateful

Miss Understood: The Ungrateful - National Pain Report
http://bit.ly/1kli7qr

So many people around us take for granite their health, even with us as constant reminders. They make underhanded comments/remarks about being on disability/not having to work and how they have no free time because they actually work. If course what they fail to realize is that being in chronic pain, or having any chronic illness is like having fulltime job with erratic mandatory overtime.

Because there original post basically says everything that needs to be said, I'm going to leave you with that.

Steve

P.S. Please remember to click the red post you'll title (this post title says "Miss Understood: The Ungrateful" in bright red) everytime you read a post from the homepage. They're are three reasons that I ask for this:
1) It allows you to read the comments
2) that page allows you to add your own comments, which I HIGHLY encourage
3) It allows my Google Analytics to tell me how many times reach page is loaded & allows me to judge popularity of individual posts

Thank you

Pain-somnia (mini-post)

It's well past 5am & I have to get up at 7:25am, my pain induced insomnia (aka Pain-somnia) had kept me up all night, despite significant pharmacological treatment.  Unfortunately, with about two hours until I need to get up, there's nothing that I can take right now to help me sleep (even Zanaflex/tizanidine knocks me out  a bit longer than two hours). It is infuriating to feel so tired, but be unable to actually get any sleep.

I hope that you're all doing well, in minimal pain & getting plenty of sleep.

Steve

Sham Medical Devices & "All-Natural" Treatments

I recently responded to a question about NEUROVA, a copy of TENS unit that doesn't require a prescription (a HUGE red flag).

This led me to the decision to write a post about scams. Scammers are taking advantage of chronic pain patients, especially desperate pain patients, and the current climate regarding opioids.

The most common scam medical devices are "electric stimulators", which are a cross between those electric weight loss belts from the 90s that were supposed to give you abs without working out and TENS units, they bypass FDA clearance & approval by calling them "electronic massagers". These "TENS" units are not the same thing as the more expensive FDA approved TENS units that treat pain, especially neuropathy. Any legal TENS unit (the devices that can treat pain) require a prescription. Really, anything that is supposed to treat pain but isn't approved by the FDA or a similar international agency is suspect. Prescriptions are required for all legitimate longterm pain treatments with only a few exceptions (even FDA approved OTC treatments, like acetaminophen/paracetamol/Tylenol and Ibuprofen/Advil/Motrin aren't safe and effective longterm chronic pain treatments without doctor supervision (which is why the label tells you to seek medical care if you haven't improved after a few weeks). Acetaminophen/APAP is hepatotoxic and NSAIDs cause stomach irritation and bleeding.

Anyway, back on track...

When it comes to sham medical devices and "all-natural" treatments, the websites are great places to found clues, the wording frequently gives them away. Examples of Ted flags include:
* bad mouthing other treatments, especially opioids
* vague explanations of how it works
* not listing ingredients
* anything that's "proprietary" or "patented"- Remember patenting doesn't mean it works, it means they filled some paperwork. If they're advertising or bragging about the patent, they're scraping bottom for ways to con you out of your limited resources

If you want all natural, drug free treatments, research & purchase specific supplements, not "proprietary blends". You can save a fortune by purchasing these ingredients in bulk and putting them in capsules by yourself. Amazon sells everything you need, if you're interested.

Disclaimer: The links above are affiliate links, which means that if you click either link and subsequently make any Amazon purchased I, or rather my daughter's college fund, will receive up to 2% of the purchase price of eligible items.

Xartemis XR

I recently saw an advertisement for Xartemis XR. The new opioid is overpriced, completely unnecessary, and dangerous. Xartemis XR is essentially OxyContin with acetaminophen (INN: paracetamol), aka Tylenol, added. Tylenol alone kills or hospitalizes more people than all legal opioids combined. The US government has a campaign against the unnecessary use of acetaminophen because of the hepatotoxicity of acetaminophen, even when used within guidelines.

Daily intake of acetaminophen (APAP) should not exceed 2600-3000mg (THREE GRAMS) per day and it should NEVER be taken on a regular basis because even normal doses of acetaminophen can be toxic after two weeks.

Tylenol is added to Percocet & Vicodin for ONE REASON, as an abuse deterrent. Unfortunately, that doesn't work, people just get acetaminophen poisoning.


Extended release opioids are primarily intended for long term use by chronic pain patients, so who is this stupid product intended for?


Xartemis XR (oxycodone/APAP extended release) is a SCAM to extort more money from insurance companies and cash in on the current climate of opiophobic hysteria. If your doctor tries to prescribe this for you, ask them why they are giving you an expensive name brand drug that is inferior to the generic alternatives and push for something better.

Distinguishing Intractable Pain Patients from Drug Addicts

Distinguishing Intractable Pain Patients from Drug Addicts

By Joel S. Hochman, MD

http://bit.ly/IPvsAddict


Maybe one of you will better understand what appears to me to be nothing but an excuse to keep pain patients from getting their meds. It seems to me that fear of Diversion is a poor excuse for denying legitimate pain patients access to opioids, especially when nothing else works. The DEA has NO AUTHORITY to regulate medicine, they can only go after a doctor if (s)he prescribes "outside of medical practice", meaning that they were intentionally writing prescriptions that were not intended to treat a legitimate medical condition. Unfortunately, doctors don't decide which doctors are prescribing in the "due course of medical practice", and neither do any other medical professionals. DEA agents (glorified cops) and prosecutors make these decisions. They've scared doctors to the point where the doctors have started to lie to their patients in order to reduce the number of controlled substances (especially opioids) that they prescribe.

My biggest question is this....

If physicians can distinguish so easily between addicts and legitimate pain patients (which I do believe that they can), why is it that the DEA can't tell the difference between prescriptions to legitimate patients and prescriptions written to addicts?

-Steve

Insomnia

As I am sure most of you know, pain can interfere with sleep on a monumental scale. I had to get up pretty early this morning (actually, I've had to get up early for the past two weeks) and I have to get up early again tomorrow (or rather today), so I took my lorazepam 2mg (x2), tizanidine 4mg, and Rozerem (because I took the Rozerem, I had to skip the melatonin tonight per my PCP's orders). Unfortunately, the earlier of a morning, the worse my insomnia seems to be. I recently added two more tizanidine 4mg, which seems to be the most effective sleep aid in my extremely well stocked arsenal of insomnia remedies. In addition to the pain related insomnia, I have had insomnia since I was a toddler, AND the location of my tumor causes it to mess with my circadian rhythm.

I know that I'm not the only one who does it, but I frequently want to kick my own @$$ for repeatedly calculating how much time I would get to sleep if I fell asleep right now... or right now... or right, well you get the picture =P. This is one of the most self defeating habits of insomniacs, but, if you're anything like me, you simply can't help it!

Personally, I find this unpredictable sleep one of the most frustrating aspects of life with CP/IP because it makes it extremely difficult to schedule absolutely anything.

I feel like this post needs a conclusion, but I can't for the life of me figure out what that should be, so I'll simply wish you all happy slumber.

-Steve

OT- Why Exercise Helps You Think Straight

Why Exercise Helps You Think Straight
http://bit.ly/1hak21c

Okay, this isn't related to chronic pain, but it is interesting, so I felt like I had to share it.

A Pained Life: I Know You Can Read - National Pain Report

A Pained Life: I Know You Can Read - National Pain Report

http://bit.ly/1t3m4W2

This article really says it all, so I'm just going to ask you to read it and leave it at that.

-Steve

New Wireless System Could Power Medical Devices

New Wireless System Could Power Medical Devices- National Pain Report

http://bit.ly/1hagmfT

California Law Would Require Cops To Return Seized Pot If Charges Are Dropped

California Law Would Require Cops To Return Seized Pot If Charges Are Dropped
http://bit.ly/1gjfLNC

I'm all for returning medication to patients once charges are dropped, but I fear that this could discourage police & prosecutors from voluntarily dropping charges (especially if the cannabis has already been destroyed), which would hurt patients.

I'm against allowing police to destroy ANY evidence. Aside from the obvious consequences (especially ease of fabricating evidence), this would make it easier to prosecute cannabis offenders, which is just plain wrong.

Steve

Update- May 16, 2014

I haven't posted an update in a while and I haven't posted a link in three days, so I felt that this post couldn't wait any longer.

As some of you may know, my wife and I have been fighting CYS for a very long time. First, they called us drug addicts and said that we didn't need opioids or benzodiazepines. Once we disapproved that several dozen different ways, they decided that we're too ill to care for our daughter (disability is not legal grounds to take a child anyway). So, we've been disproving these most recent ridiculous allegations.

Honestly, they're pissed that we didn't cave and agree to discontinue our medically necessary medications. They don't like our young age or our knowledge of our medical conditions. They've wasted thousands of dollars on things like weekly GC/MS UDT (urine drug testing, ~$200/week).

Now, we are walking up to the school that our daughter will attend next year twice a day to prove that it will not be an issue. I honestly thought that it would be more difficult. We started Monday morning and haven't had any problems. We're almost halfway done with our two weeks of this ridiculousness and I've only noticed  a mild increase in my pain and no loss of function.

I am so thankful that our PCP has really had our backs. So many doctors would have jumped ship and abandoned us, but he refuses to allow himself or his patients to be bullied by these imbeciles.

I'm so thankful for such a caring family physician. Although he's received training in pain management (as well as Suboxone),  I find it impressive that he is willing to go through the hassles of being our doctor. At my most recent appointment, I thanked him for everything he's done, but instead of accepting any praise, he apologized for not being able to find a pain management doctor. He acknowledged my need for a higher level of care (specifically an intrathecal pain pump).

My pain hasn't improved since moving or since winter ended, but I'm functioning so much better than I was before we moved.

Steve

Can Grapes Reduce Pain and Improve Health?

Can Grapes Reduce Pain and Improve Health?- National Pain Report
http://bit.ly/1opU8hn

Why are patients shut out of the debate over prescription pain medicine? - The Washington Post

Why are patients shut out of the debate over prescription pain medicine?- The Washington Post
http://wapo.st/1j9NRo1

This article really says it all, well maybe not everything, but they hit the major points. Please read it in its entirety

Happy Mothers' Day!

I wanted to take a brief moment to wish all mothers out there a Happy Mothers' Day and remind you that you shouldn't be too hard on yourselves when your pain (or other medical issues) cause you to make the tough choices. Our children love us because we do our best, not because we are perfect because NO ONE IS PERFECT, including parents in perfect health.

Take a moment to remember that you're doing your best and that is all that anyone, including yourself, can ask of you.

Steve

Poppy seed ingestion as a contributing factor to opiate-positive urinalysis results

Poppy seed ingestion as a contributing factor to opiate-positive urinalysis results- PubMed
http://1.usa.gov/1ohUKpd

The DoD utilized higher cutoffs than NIH and most employers, which minimizes false positives, but some foods actually trigger the DoD cutoff for GC/MS urinalysis and many trigger the common cutoff of 300ng/ml of morphine or codeine. We, as a country, place far too much faith in these tests and RUIN people's lives over tests that aren't nearly as accurate as most people believe.

DoD cutoff- morphine 4000ng/ml
DoD cutoff- codeine 2000ng/ml
Standard cutoff- morphine & codeine 300ng/ml

Remember, most testing behind with an immunoassay and then confirmatory GC/MS testing is done, which most people treat as infallible, which it clearly isn't.

Facebook

The Facebook page for this blog needs a few more "likes" to unlock the remaining features. I'd greatly appreciate it if you guys would be willing to "like" the page.

Facebook.com/IPkills

Opiophobia & Insurance

It has come to my attention that more and more insurance companies are refusing to cover pain management, opioids, longterm opioids, and/or procedures. Or, no PMs in network and within a reasonable distance.

I've heard of this occurring with Medicaid (parts of Florida), HeritageCare (parts of Florida), and private insurance (some BlueCross BlueShield plans) and I find this very worrisome.

I would appreciate it if anyone who knows about specific cases of this would common below and/or email me (please specify whether or not I may publish the information you email me). Please include:
* the type of discrimination (higher copay, unrealistic quantity limits, prior authorization on generics, duration limits, PMs not covered or not in network, PMs who practice opioids not in network, etcetera)
* the company name
* the type of plan (Medicare Part D, Medicare Advantage, Medicaid, Medicaid HMO, private insurance HMO, private insurance PPO, private POS, private FFS, ACA exchange, Tricare, VA, etcetera)
* state
* description.

If anyone knows about any petitions focused on this issue, please add them as comments and/or email them to me.

We cannot allow this practice to continue or, even worse, spread.

Steve
IntractablePainKills@gmail.com

Rat Park

Rat Park Comic

Please check out the comic version of the Rat Park experiment, which shows that opioids are not the addictive demons that we've been told that they are.

http://bit.ly/ratpark

Steve
IntractablePainKills@gmail.com

Cannabis Has Been Studied More Than Many FDA Approved Pharmaceuticals

Cannabis Has Been Studied More Than Many FDA Approved Pharmaceuticals | High Times
http://bit.ly/1mHakv3

More than 30 overdose on synthetic marijuana in a day in Texas

More than 30 overdose on synthetic marijuana in a day in Texas | kens5.com San Antonio
http://bit.ly/1uEoMVK

It is important to remember than this article is about the designer drug "spice" or K2, which is not clinically, chemically, or pharmacologically related to Marinol/dronabinol, THC, or cannabis.

There is frequently confusion around terms like "synthetic marijuana" because some people go immediately to "Spice", which this article is about, while others go to Marinol/dronabinol.

Marinol/dronabinol is a 100% legal in all 50 states pharmaceutical. It is regulated under the Controlled Substances Act under Schedule 3 (CIII). Marinol is not "medical marijuana", Marinol isn't cannabis at all. Marinol is laboratory created synthetic THC that is suspended in sesame oil and encapsulated in gelatin capsules. Aside from the high price tag, Marinol also fails patients because it lacks CBD (cannabidiol) and is taken orally. When taken orally, THC bioavailability/absorption is low and highly variable & unpredictable. Because it is given orally, it also undergoes hepatic first pass metabolism, which converts the Delta-9-tetrahydrocannabinol into a much more psychoactive metabolite that is less effective for pain control, anxiety, and nausea.

The failure of Marinol and the dangers of K2/Spice further exemplifies the need for legalization of cannabis for both medical & recreational purposes as both a means of harm reduction & being a compassionate society.

The Innocent Victims of America's Painkiller Panic

The Innocent Victims of America's Painkiller Panic | The Fix
http://bit.ly/1qh5Xbr

Cymbalta Discontinuation Syndrome

Cymbalta Discontinuation Syndrome- Non-opioid Pain Medication
http://bit.ly/1jhmVSk

What a shock, SSNRIs (like Cymbalta/duloxetine) cause withdrawals!

High-dose opioids could crack chronic pain

High-dose opiates could crack chronic pain: Nature News & Comment
http://bit.ly/1iWsaaL

Note: The author of this article titled it incorrectly, opiates only refers to natural opioids, like morphine and codeine. Opioid refers to:*natural opiates: morphine & codeine
*semi-synthetic opioids: hydrocodone, oxycodone, oxymorphone, hydromorphone, and diacetylmorphine/diamorphine/Heroin (although it is not legal in the USA, it is a commonly used opiate in the UK & other countries)
*synthetic opioids: fentanyl, sufentanil, meperidine/pethidine/Demerol

Miss Understood: Hope for the Best, Plan for the Worst

Miss Understood: Hope for the Best, Plan for the Worst- National Pain Report
http://bit.ly/1mAWCcR

"I used to think if I packed a hospital bag I was basically giving up hope that my doctor would be able to find a quick fix and send me home. It was like if I went in thinking I might be staying, then I must want that for myself. But over the years I've done away with that superstition.

It's like when someone is waiting for test results. They hope everything is great and that they have a clean bill of health, but they also prepare themselves in the event they get bad news."

Living with Pain: The DEA’s War on Pain Patients Reaches California | American News Report

Living with Pain: The DEA’s War on Pain Patients Reaches California | American News Report

http://bit.ly/1f3IJuy

"The DEA is using a meat cleaver when a scalpel would do. To simply cut off pharmacies without first determining the nature of the customers being served suggests something more sinister."

Gabapentin- Neurontin vs Gralise vs Horizant

I've been reading about the various gabapentins that are available and how gabapentin encarbanil (Horizant) is supposedly better than Neurontin because of more convenient dosing and linear dose response (the larger the dose if Neurontin, the less is absorbed). I'd like to know more about what other CP/IP patients have tried & experienced. I'd greatly appreciate it if any off you who gave tried gabapentin could complete the poll and add your story as a comment below. If you are willing to share your story, but don't want to post it publicly, please feel free to email me at IntractablePainKills@gmail.com

Have you tried gabapentin/Neurontin/Gralise/Horizant? If so, which version & did it help?
	Gabapentin/Neurontin only, not helpful
	Gabapentin/Neurontin only, helpful
	Gralise, not helpful
	Gralise, helpful
	Horizant, not helpful
	Horizant, helpful
	Neurontin/gabapentin & Gralise, neither helpful
	Neurontin/gabapentin & Gralise, Neurontin helpful
	Neurontin/gabapentin & Gralise, Gralise helpful
	Neurontin/gabapentin & Gralise, both helpful & equal
	Neurontin/gabapentin & Gralise, both helpful, but Neurontin better
	Neurontin/gabapentin & Gralise, both helpful, but Gralise better
	Neurontin/gabapentin & Horizant, neither helpful
	Neurontin/gabapentin & Horizant, Neurontin helpful
	Neurontin/gabapentin & Horizant, Horizant helpful helpful
	Neurontin/gabapentin & Horizant, both helpful & equal
	Neurontin/gabapentin & Horizant, both helpful, but Neurontin better
	Neurontin/gabapentin & Horizant, both helpful, but Horizant better
	Neurontin/gabapentin, Gralise, & Horizant- none helpful
	Neurontin/gabapentin, Gralise, & Horizant- all helpful & equal
	Neurontin/gabapentin, Gralise, & Horizant- Neurontin preferred
	Neurontin/gabapentin, Gralise, & Horizant- Gralise preferred
	Neurontin/gabapentin, Gralise, & Horizant- Horizant preferred
	Neurontin/gabapentin, Gralise, & Horizant- Horizant & Gralise preferred over Neurontin
	Gralise & Horizant- neither helpful
	Gralise & Horizant- both helpful & equal
	Gralise & Horizant- both helpful, Gralise preferred
	Gralise & Horizant- both helpful, Horizant preferred
pollcode.com free polls

Intractable Pain Kills: Definition of Intractable Pain

I was going through my drafts and found a page that I hadn't finished, so I took five minutes and finished it. If anyone is interested, I've finished Definition of Intractable Pain. I tried to keep it short, sweet, and to the point. As always, I'd love feedback (either via email IntractablePainKills@gmail.com or by commenting here)

The Problem With Pain Pills: A Letter to Mr. Barry Meier and The New York Times

The Problem With Pain Pills: A Letter to Mr. Barry Meier and The New York Times
http://bit.ly/1iZROKS

This amazingly well balance article is a response to a highly irresponsible article that was in the New York Times, and reposted on DrugFree.org

I highly recommended that you all read both, but remember that the NYT article is a highly misinformed, highly opinionated EDITORIAL article.

Marijuana Works Better Than Opiates To Control Pain: Here’s How

Marijuana Works Better Than Opiates To Control Pain: Here’s How- Cannabis Now Magazine
http://bit.ly/1iZJQkP

Instead of rewriting my opinion, again, I've included my comments... They may not be pretty or perfectly formatted, but they get my points across.

~~~~~ Comment #1 ~~~~~

Why is it always cannabis OR opioids?

They work wonders together and cannabis doesn't help everyone.

We don't need more bashing of opioids in the name of advancing cannabis. All opioid side effects wear off over time (except constipation, which is readily managed with Miralax OTC),it's a function of tolerance.

Also, (a side note) while THC is helpful, it is important to remember that THC alone is almost worthless for pain relief (otherwise, my Marinol/dronabinol (CIII) would help). High THC is fine, as long as CBD isn't sacrificed. Also, oral consumption causes rapid, extensive first pass metabolism, which modifies the THC (one of the issues with Marinol/dronabinol when taken as directed).

I think that the most important thing to remember is that CP/IP (chronic/intractable pain) patients are NOT one size fits all.
~~~~~

~~~~~ Comment #2 ~~~~~

Sativex (natural cannabis with plenty of THC & CBD as a transmucosal oral spray-similar to a cannabis tincture) will be a great leap forward for pain patients and other medical cannabis users alike. Aside from being legal and covered by insurance, it will be easily measured.
~~~~~

~~~~~ Comment #3 ~~~~~

That 6% statistic is a gross overestimate, which also includes those who purposefully acquired opioids to abuse them (pill mill patients) and pain patients who were cut off from their legitimate prescriptions by pharmacies like Walgreens & states like Florida.

If you look only at the CP/IP patients who take their medications as prescribed, addiction only occurs in 0.05-0.3% of patients.
~~~~~

~~~~~ Facebook Comment ~~~~~

Why is it always cannabis OR opioids?

They work wonders together and cannabis doesn't help everyone.

We don't need more bashing of opioids in the name of advancing cannabis. All opioid side effects wear off over time (except constipation, which is readily managed with Miralax OTC),it's a function of tolerance.

Also, (a side note) while THC is helpful, it is important to remember that THC alone is almost worthless for pain relief (otherwise, my Marinol/dronabinol (CIII) would help). High THC is fine, as long as CBD isn't sacrificed. Also, oral consumption causes rapid, extensive first pass metabolism, which modifies the THC (one of the issues with Marinol/dronabinol when taken as directed).

I think that the most important thing to remember is that CP/IP (chronic/intractable pain) patients are NOT one size fits all.
~~~~~

Posts out of order

Some of my posts are out of order because I tried them up ahead of time & waited to post them, so I'd like to ask everyone to look through the last 5-10 posts to make sure that you didn't miss any.

Sorry for the inconvenience

-Steve

Fear Of Addiction Means Chronic Pain Goes Untreated | Health News Florida [Transcript]

Fear Of Addiction Means Chronic Pain Goes Untreated | Health News Florida [Transcript]
http://bit.ly/1iJH9Vs

Dear Stupid (doctors)

Pills for Breakfast: Dear Stupid - National Pain Report
http://bit.ly/1ji4mN4

Doctors are stupid, especially the ones at Mayo, UPenn, Hopkins, Cleveland Clinic, and all of the other "must go" hospitals. I was never treated worse than when I went to Johns Hopkins (Baltimore, MD), UPenn (Philadelphia, PA), and Milton S Hershey Medical Center (Hershey, PA). They give up on us the second we get complicated.

Zohydro Won't Increase Drug Abuse

FDA Commissioner: Zohydro Won’t Increase Drug Abuse - National Pain Report
http://bit.ly/1ji539p

This is common sense, but we all know how rare "common" sense is.

FDA Warning on Epidural Steroids is Too Little, (7 years) Too Late

FDA Warning on Pain Injections Comes Too Late for Some - Businessweek
http://buswk.co/1n25Qfc

These injections weren't just ill advised, they were/are malpractice. They should NEVER be tried prior to safer, more effective options, like opioids. Greed and Opiophobia are the cause, the cure is knowledge.

New Life (& profit) for Old Injectable MS Drug

New Life for Old Injectable MS Drug - National Pain Report
http://bit.ly/SeALL3

This reincarnation may be a improvement in dosing and patient, but the vast majority of these drugs are just insurance funnels meant to drain our premium dollars. We as patients must always be careful not to jump on the newest drug simply because it is the newest drug. Lunesta/eszopiclone is just the left hand isomer of zopiclone/Imovane/Zimovane/Imrest, which is in the same class as all of the Z-drugs (like zolpidem/Ambien). Levocetirizine/Xyzal is just Zyrtec/cetirizine. Lexapro/escitalopram is the patent extension for Celexa/citalopram. Pristiq/desvenlafaxine is the patent extension for Effexor/venlafaxine. Prevacid and AcipHex are "me too" drugs for and Nexium/esomeprazole ("The Healing Purple Pill") is just the active half of omeprazole/Prilosec ("The Purple Pill"). Of course, none of these are inherently superior, just more expensive.

Steve

Chronic Pain affects more people than Diabetes, Heart Disease, & Cancer combined

Untreated & undertreated intractable pain also leads to heart disease (& severe tooth decay). 

Update/Insomnia

It's 10am my time and I'm officially giving up on sleep. I miss the days when I could sleep for more than 2-3 hours at a time, not that I've ever been able to sleep when I want. My insomnia started when I was still in a crib, it's my first memory. Of course, my insomnia only got worse as my pain worsened. I developed childhood Fibromyalgia and then brain cancer. The brain cancer caused severe migraine-like headaches and worsening pain... all of which has worsened my insomnia (which worsens pain) to the point where 4mg of lorazepam AND 8mg of Rozerem don't help me get to sleep without the additional help of 2-3 4mg tizanidine/Zanaflex. It shouldn't take six pills to get to sleep! Worse yet, it only gets me  a few hours.

Steve

April 29 Update

As you may have noticed, I haven't been posting a lot of personal information lately. I've been stretched a little thin and my family comes first. Unfortunately, that means that my blog has been conning second. Aside from when I was sick, I've been extremely careful not to completely abandon this blog because many people have told me that they've benefited from my experience and knowledge. Unfortunately, the easiest posts are links to useful information, which I've been making heavy use of.

Since moving to a healthier home and experiencing a reduction in stress, my pain has been much easier to manage. Although my pain rarely drops below 5/10 (averaging 6-7/10 & still experiencing flares of 10/10), I've been much more active. In the past 48 hours, I've taken my daughter to two parks, played Frisbee, and played Wii Sports Golf, Bowling, & Baseball. I was exhausted by the time that I went to bed last night, but it was so worth it!

I'm still not able to go back to work or college yet, but I'm once again able to fully care for my daughter, including running around the park & playing Frisbee.

The pain in my legs last night made me miss the relief that methadone (not to mention Actiq/fentanyl lozenges & intrathecal morphine gave me. Thankfully, I've been able to recover amazingly with a single night sleep.

Steve

New Fibromyalgia Blood Test

New Fibromyalgia Blood Test is 99% Accurate - National Pain Report
http://bit.ly/1foViqE

Once this test is finally covered by insurance, the price will really drop, and clinical trials will actually be limited to Fibromyalgia patients and there is a chance that will finally get an FDA approved drug that treats Fibromyalgia (not the <10% effective psychiatric drugs that we have today).

The End of an Era in Fibromyalgia

The End of an Era in Fibromyalgia - National Pain Report
http://bit.ly/1ib3ES6

Sativex Granted "Fast Track" Review

Marijuana Spray Gets ‘Fast Track’ Review from FDA - National Pain Report
http://bit.ly/1nAnkBC

As a cancer patient, I'm ecstatic about the possible approval of Sativex for cancer pain. I'm currently using Marinol/dronabinol, which is synthetic THC suspended in sesame oil, encapsulated in gelatin. It's terrible medication. The best thing is herbal cannabis, but Sativex is a close second. It's an all natural herbal tincture spray. It isn't just THC, it also includes plenty of CBD and every other cannabinoid.

FDA Warns about Epidurals

FDA Warns about Epidurals - National Pain Report
http://bit.ly/1iq0mdA

I can't tell you how many people were FORCED into these injections so that crooked doctors could make big money from insurance and avoid prescribing opioids. This NEVER would have been an issue if it wasn't for a combination a Opiophobia and greed/for profit healthcare.

Why not pot?

Marijuana Rated Most Effective for Treating Fibromyalgia - National Pain Report
http://bit.ly/1mGkviy

With 10% of patients getting relief from FDA approved "Blockbuster" drugs and well over half of Fibromyalgia patients getting relief from cannabis, why spend ~$300/month for toxic drugs when safe, all natural cannabis can be grown at home for roughly free?

Simply...
Drug companies make billions by keeping cannabis illegal through corruption & big money in politics

The most effective drugs don't get approved without patent protection (cannabis, ibogaine, and countless others)

The worst part is that cannabis is the safest drug of all time (ZERO deaths in the thousands and thousands of years of recorded use) and Cymbalta/duloxetine, Lyrica/pregabalin, and Savella/milnacipran kill countless people every year.

Judge Overturns Massachusetts Ban on Zohydro - National Pain Report

Judge Overturns Massachusetts Ban on Zohydro - National Pain Report

Apparently, I missed this while sick with an eight day stomach bug, but in case you've missed it Zohydro AND compounded hydrocodone are both available in Massachusetts. The judge set a powerful precedent, and I'd personally thank her for using her brain and not giving in to opiophobic propaganda and paranoia.

10% effective, 7.7 billion dollars (Fibromyalgia Blockbuster Drugs)

Fibromyalgia Drugs: Successes or Failures? - National Pain Report
http://bit.ly/1gRHsrI

Study Finds Chinese Herb More Effective in Treating Rheumatoid Arthritis - National Pain Report

Study Finds Chinese Herb More Effective in Treating Rheumatoid Arthritis - National Pain Report

http://bit.ly/1eXCmcB

The herb is more effective than methotrexate, but easier on the body. When combined, the herb & methotrexate are even more effective than either individually.

Steve

Federal Judge Asked to Lift Ban on Zohydro

Federal Judge Asked to Lift Ban on Zohydro - National Pain Report

http://bit.ly/1gymTnx

Excerpt:
"There was no indication when federal Judge Rya Zobel would rule on the case. Last week Zobel indicated she might overturn the ban, saying,“I think that, frankly, the governor is out of line on this.”"

My Story: Feeling Like a Criminal - National Pain Report

My Story: Feeling Like a Criminal - National Pain Report

http://bit.ly/1eGdVAm

Thanks to the same laws that make this person feel like a criminal, I am forced to do without cannabis. Instead, I get ultra expensive dronabinol (generic Marinol; CIII), which doesn't work as well, has more side effects, makes you "higher" than cannabis. Herbal cannabis has also been shown to kill glioma cells. Inoperable gliomas, like mine, have few other treatment options.

-Steve

Over-the-Counter Pain Relievers Linked to Heart Problems - National Pain Report

Over-the-Counter Pain Relievers Linked to Heart Problems - National Pain Report
http://bit.ly/1ezpZcn

More evidence Obamacare is working to provide the health care people need

Daily Kos :: More evidence Obamacare is working to provide the health care people need
http://bit.ly/1eeH5vq

"Bang-up statistics for rates of insurance under Obamacare are one thing, but for the truly human benefit of the law, you have to look deeper. And here's an excellent example: Actual health care, in the form of prescription drugs, is getting to the people who need it."

The early data isn't showing a lot of birth control, instead it is showing treatment for life-threatening illnesses, like cancer, HIV/AIDS, intractable pain, rheumatoid arthritis, lupus, other rheumatologic illnesses & autoimmune diseases, multiple sclerosis, and other neurological illnesses. Although inadequate (& wasteful, thanks to the Republican solution of including private insurers), the ACA has had meaningful impact on the lives of so many people.

So many more could be helped (for a lot less money) if we could switch to single payer and cut out the middle men. This would also avoid the complication and confusion that had plagued HeritageCare (aka ObamaCare).

Remember, HeritageCare (private insurers getting tax dollars to cover lie income people) was the Heritage Foundation's "solution" to single payer & the public option. They're fighting their own creation.

OT?- Obamacare Headline in Rural Arkansas- Daily Kos

Obamacare Headline in Rural Arkansas- Daily Kos
http://bit.ly/1eeDqxH

"In a real life example of how Obamacare is changing everything, our local newspaper ran an article about the closing of the 9th Street Ministry Medical Clinic.

"It was announced last week that 9th Street Ministries will be concluding their medical clinic mission, which had been ongoing monthly to offer free medical services to those in need since first starting in 1998. The final day for the medical clinic will be Thursday, April 24, and that will conclude the mission that has been in place for almost 16 years."

The article tells how the ministry has been operating once a month for years to give people healthcare on a first come, first served basis.  This care was provided by volunteers. My mother actually volunteered at the clinic and they would see as many as 300 a day.  Many of these people would wait all day for the chance to see a doctor.  Most of the patients were people who could not afford to see a doctor, but were not eligible for Medicaid or Medicare.  Why would they close this clinic down?

"We’ve gone from seeing around 300 people a month on a regular basis, but as people were enrolling in Obamacare, the numbers we were seeing have dropped. We were down to 80 people that came through the medical clinic in February, all the way down to three people at the medical clinic in March. Our services won’t be needed anymore, and this will conclude our mission.”

We live in one of the most conservative places in Arkansas.

The Repub's want to tell those people that once a month waiting all day for a chance to see a doctor was good enough.

Thankfully, President Obama did not think so."
~~~~~

The "Tip Jar" (comments) are worth reading too.

I see that MI has enrolled over 50K ...
... in Medicaid since it expanded on 4/1.   I think the "single payer" option that is Medicaid has been the most important effect of the whole ACA.  Red state Guvs and legislators who have been blocking expansion are going to be facing an enraged public all the way up until election day this November and they will pay a price.  Polling is showing incumbent Guvs in GA and Kansas behind in their reelections!  People love their Obamacare.

Apr 9, 7:16a- Reinvented Daddy

People find it difficult to believe that THEIR representatives would be out to hurt them. Then, after a while, they remember their daddy's razor strop and they ask whether those whippings really hurt daddy more than it hurt them.
After a while, some people don't deserve the benefit of the doubt."

Apr 9, 7:30a- Hannah

Drug Maker Seeks to Block Ban on Zohydro - National Pain Report

Drug Maker Seeks to Block Ban on Zohydro - National Pain Report
http://bit.ly/1ivz8zc

I know that Zogenix will get a lot of crap from the anti-opioid lobby (aka rehab business) for this, but I'm glad that they're protecting Massachusetts CP/IP patients and challenging this drastic overreach.

Steve

Naloxone Part 2

To clarify... The government is advocating it's use in pain patients who are BELIEVED to be in overdose. The problem is that most people can't tell an overdose from fatigue or the flu. Intractable pain patients on opioids are usually opioid tolerant and naloxone/Narcan/Evzio causes abrupt withdrawal. In a patient who actually needs opioids (intractable pain patient, not drug addict), this abrupt withdrawal can trigger a heart attack.

This is unnecessary because...
If pain patient (or addict) overdoses, the symptom is respiratory depression, which can be overcome with oxygen, BiPAP, and/or CPR. This product is intended to reverse believed overdose while waiting for an ambulance, but CPR has been fine for years.

Naloxone/Narcan/Evzio reverses the opioids, which is fine for an opioid-naive patient, but this device is only for opioid tolerance patients.

With so many family members not understanding us and many being called druggies, would you really want them wielding an opioid blocker? I can easily see easy access to naloxone leading to pain patients (& addicts) being forcefully injected with naloxone against their will to "prove" to them that they're an addict (those people never understand the different being addiction and tolerance & physical dependence).

This product should only be prescribed directly to the addict or pain patient, not "concerned family members" WITH THEIR PERMISSION. It should be treated like Antabuse (giving to someone without permission is forbidden and legally considered poisoning, and carries a black box warning).

Steve

FDA: Naloxone Injector Not Just for Drug Abusers - National Pain Report

FDA: Naloxone Injector Not Just for Drug Abusers - National Pain Report

http://bit.ly/1kEtGLQ

This is SCARY! This device would be scary enough, but to advocate its use on pain patients is somewhere between malpractice & medical terrorism. Instead of reposting my thoughts here, I've included the comments that say it all.

Even if unconscious, it is illegal to administer naloxone unless you are a doctor or an EMT being actively advised by a physician. I doubt that these laypeople will bother along for consent. Without significantly training (like the REMS programs for Accutane & Xyrem), this is scary.

Why was this rushed through approval?

~~~~~
Kurt says:
April 4, 2014 at 7:14 pm
I guess I need a new Medic Alert tab for my necklace in case I faint the next time I am in Safeways shopping for dinner, and succumb to shock over the high prices they’re charging these days for a pound of hamburger.

I am a chronic pain patient maintained on opiates.

DO NOT INJECT WITH NALOXONE. I am opiate tolerant and not likely to overdose on opiates. Naloxone could put me into immediate opiate withdrawal causing a health crisis.

Lord keep us safe from do-gooders.

~~~~~~~~~~~~~~~
Steve says:
April 7, 2014 at 6:36 pm

Exactly, Kurt! Thank you!...

[trimmed]

...I’m considering a permanent tattoo claiming allergy to naloxone. I already have a DNR refusing naloxone, but where I live DNRs are ignored in the prehospital setting (ambulance, etcetera), which is why I’m thinking about the allergy tattoo, I’d love your thoughts.

~~~~~~~~~~~~~~~
Steve says:

April 7, 2014 at 6:29 pm
Naloxone only reverses opioids, but the vast majority of overdose deaths are not opioid only, they usually involve alcohol and/or benzodiazepines (Valium/diazepam, Xanax/alprazolam, Ativan/lorazepam, etcetera)

This is deeply rooted in opiophobia.

Also, of they really wanted to help people, it would be OTC or OTC worth log book (like pseudoephedrine/Sudafed), but then they wouldn’t benefit from Rx insurance reimbursement. This should be “Pharmacy Only Medicine”, like Imitrex in the UK, where you don’t need a doctor’s prescription, just counseling with the pharmacist (slightly more restricted than Sudafed because training should be required).

This product is used to COMPLETELY reverse opioids, which is fine for an opioid-naive overdose, but would kill an opioid tolerant IP patients like myself. Without dose control, it could kill. Without dose control, I’d imagine most Heroin addicts will refuse a dose because every documentary that I’ve seen involves a human going around with naloxone and they always have trouble convincing these people to take the naloxone. They frequently convince them to take half of a dose.

Pain patients rarely overdose. Family members who can’t mind their own business and don’t know ANYTHING about opioids will abuse this and/or abuse their pain patient family members.

This is all about money, generic naloxone is ~$0.50/dose

Steve

Medication Jeopardy - National Pain Report

A Pained Life: Medication Jeopardy - National Pain Report

http://bit.ly/1lGjvrJ

"I was concerned about being able to get methadone when I returned home to New York City.

“My mentor is there. He’ll give you the prescriptions. Don’t worry,” Friedman said.

Unfortunately, he was wrong.

When I told the doctor, “Dr. Friedman told me you would write the methadone prescriptions for me,” he stood up, said he would not, ended the appointment, and sent me on my way – with no prescription or instructions about stopping the drug."

My comments:
~~~~~ Comment #1 ~~~~~
I was cold turkeyed from methadone (although I had oxycodone, which helped with the mu-opioid activity, but not kappa-opioid or NMDA).

Methadone it's cheap and effective, but it is also misunderstood because of a few overdoses caused by uneducated physicians. Methadone should NEVER be increased more than once every 5-7 days. Other opioids can be increased every few days or even every few hours. If a doctor increases methadone as often as they increase oxycodone, oxymorphone, morphine, or fentanyl, the patient could overdose.

There is a irrational fear surrounding methadone and because it is about $10/month, there's no incentive for drug companies to spend money dispelling those myths. Some brand name drug companies will scare doctors away from methadone to boost sales of OxyContin (oxycodone ER - major culprit), Kadian (12 hr morphine ER), Avinza (24 hour morphine ER), Exalgo (24 hr hydromorphone ER), Opana ER (oxymorphone ER), and, now, Zohydro (12 hr hydrocodone ER).
Sorry, I don't mean to sound like a conspiracy theorist.

Duragesic/fentanyl patches 400mcg/hr have no effect on my neuropathic leg pain, but low dose methadone (even 5mg/day) can have huge effects.

Methadone is uniquely effective because it it's not a pure mu-opioid (like morphine, oxycodone, fentanyl, sufentanil, alfentanil/Alfenta, oxymorphone, hydrocodone, hydromorphone, codeine, and remifentanil). Methadone is a mu-opioid, but it's also a kappa-opioid, an NMDA receptor antagonist. Methadone is ideal for nerve pain, but it is also effective for back pain and cancer pain.

Steve
~~~~~end~~~~~

~~~~~ Comment # 2 ~~~~~
Robert is correct, this is medical malpractice.

Untreated and under treated intractable pain can and do kill, usually through cardiac over-stimulation and various changes in the cardiac, pituitary, and adrenal systems. Dr. Forest Tennant explains it best in 'The Intractable Pain Patients' Handbook for Survival', which is (legally) available for free.

http://bit.ly/PainGuidePDF

Dennis is correct, pain patients need to be given a voice among those who regulate pain treatment. To those who lost kids, I'm sorry, but you kids was an addict who broke the law and took powerful medications without any regard for the directions.  These kids toss random points in a "candy dish" and swallow handfuls, you can't regulate that kind of stupidity. We pain patients are completely different from the drug abusers who make our lives hell.
~~~~~end~~~~~

Steve

Seeing Failure as Success- A Pained Life

A Pained Life: Seeing Failure as Success - National Pain Report

http://bit.ly/1qeGax0

..."I remember reading a note one of my first doctors had written: “She is being victimized by her pain.”

I did not understand what he meant at the time. Now I get it. I feel a victim, not only of the pain, but of the lack of treatment options for it."...

..."I looked up the definition of victim online: “A person or thing that suffers harm, death, etc… from some adverse act, circumstance, etc.”

This added disclaimer surprised me:

“Using the word victim or victims in relation to chronic illness or disability is often considered demeaning and disempowering. Alternative phrases such as who experiences, who has been diagnosed with, or simply with and then the name of the disability or illness, can be used instead.”

But we are victims. Of pain that often controls our lives. Of a War on Drugs that we need to help us live. Without those drugs the pain can be so overwhelming that death can be seen as preferable, and for way too many of us, has been.

Changing the way we say it, “I am not a victim of my pain, I experience chronic pain,” does not change the experience of being victimized.

So maybe it is time to turn the equation around.

If we can look at each failure as bringing us closer to being helped, then we are no longer victims. We become warriors. And each new treatment brings us closer to the one where we just may prevail."... (if it is legal & not under attack - don't hold your breath for Sativex or opioids).

Steve

My Story: Life with Interstitial Cystitis - National Pain Report

My Story: Life with Interstitial Cystitis - National Pain Report
http://bit.ly/1gXa5Yn

This is the story of a woman afflicted with a Interstitial Cystitis due to physician malpractice. She was promised that the pain would subside, but it didn't. She has to go to the bathroom 60-70 times a day, but was denied disability.

She is a fellow pain warrior and my thoughts are with her. Hopefully, she will receive her disability soon and not lose even more than the intractable pain and IC have taken from her already.

Steve

It's Raining in PA

For those who don't know, I live in Pennsylvania, a very un-friendly state when it comes to pain control (can't find a pain doc to manage an intrathecal pump and we have no medical cannabis).

Anyway, it's raining today and my pain is flaring. What many people do not know is that it is not the rain that caused flare ups (at least not for me, or my wife). If it rained for 40 days and 40 nights,  I would be fine days 3-39 (days 1, 2, 40, & 41 would be the issue). For me, the changes in the weather (& barometric pressure) are the issue. Every time it rains, I get hit twice, once when the storm system rolls in and again when the storm system rolls back out. This double whammy makes me loathe Pennsylvania's weather.

I've also read that some parts of the country are experiencing extreme weather (tornadoes). To all of them, I wish you good luck & safety.

I would love to read about your various experiences with the weather, including extreme weather conditions. Please leave any stories in the comment section.

Steve

Massachusetts Ban on Zohydro a Slippery Slope - National Pain Report

Massachusetts Ban on Zohydro a Slippery Slope - National Pain Report

http://bit.ly/1fMfcGq

Happy Anniversary brain cancer

Okay, so the title seems a little silly, but today isn't just April Fools Day, it is also the 6th anniversary of my cancer diagnosis.

I've had symptoms for over a decade, and my first brain MRI on January 17, 2006 (8.25 years ago), where they found an area of increased signal in the periaqueductal gray matter of the Pons of the brainstem. My PCP called me at 8:46PM to tell me that I had a cyst, an infection, a tumor, or scar tissue from when I was assaulted by my grandfather 5 months earlier (the day before school started).

On April 1, 2008, I had my first appointment with Arnold G. Salotto MD, my neurosurgeon, who taught me how to read the MRIs and diagnosed me with DIPA (Diffuse Intrinsic Pontine Astrocytoma), a subset of DIPG (Diffuse Intrinsic Pontine Glioma). This is a childhood cancer that is typically fatal within 6-12 months of diagnosis (with treatment) and my tumor headaches started years before the first MRI and intensified 7-8 months before the first MRI (delayed diagnosis).

It is nothing short of a miracle that I'm still alive today, especially since I'm ineligible for or uncomfortable with conventional treatments, such as:
* IMRT - most precise form of external beam radiation using electrons (X-ray)
* radiation pellets (can't be safely placed)
* Proton therapy - external beam radiation using protons (better than X-ray & safer) -closest hospital is in Philadelphia (~200 miles away)
* chemotherapy (oncologist rejected)
* surgery (to dangerous, even a biopsy isn't safe)
* Novocure NovoTTF-100A (can't be used on brainstem)

Cannabinoids, and maybe melatonin, have teamed up with my immune system to significantly slow the growth of the tumor. I wouldn't be alive today without delta-9-tetrahydrocannabinol (THC), aka dronabinol/Marinol.

With pain destroying our lives, it's important to celebrate the good things, like a 6 year old 6-12 month prognosis.

My daughter turned six back in January and finishes kindergarten in June (and they're having her skip a grade) and I get to see it because of cannabis and my abnormally long survival time.

Steve M

The “Integrative Pain Management” Controversy

Pain-Topics News/Research UPDATES: The “Integrative Pain Management” Controversy
http://bit.ly/1mGX5t2

Overcoming Opiophobia & Doing Opioids Right

Pain-Topics.org has removed or moved Overcoming Opiophobia from its server, so bit.ly/Opiophobia is now a dead link. Bit.ly will not allow me to change the url that bit.ly/Opiophobia points to, but since bit.ly links are case sensitive I have created a new mini-URL to link to the file using a permanent Google Docs file. Overcoming Opiophobia is now available via http://bit.ly/opiophobia

I apologize for want confusion that this has caused.

Steve

17,000 DEATHS - GOP's Obamacare spite means death toll for red states - Daily Kos

Daily Kos :: GOP's Obamacare spite means death toll for red states

http://bit.ly/1gUFjjJ

"Yet as damaging as that uncertainty and chaos has been, the Republican Party's scorched-earth opposition to Obamacare is producing something far worse: a body count. That's not hyperbole, but a grim reality. Due to what might be the greatest act of political spite in modern American history, Republicans will needlessly leave millions of people uninsured, many hospitals on the edge of financial ruin and thousands of Americans dead, mostly in the states the GOP itself controls."

17,000 deaths from rejected Medicaid expansion

Ask the Pharmacist: Why Am I Being Denied a Pain Medication? - National Pain Report

Ask the Pharmacist: Why Am I Being Denied a Pain Medication? - National Pain Report

http://bit.ly/1hVfr2n

I know what you're thinking, another link, really? Unfortunately, I haven't felt up to posting any personal posts. Fortunately, I've been running across quote a few great articles.

Steve

My Story: Politicians Should Stop Opposing Medical Marijuana - National Pain Report

My Story: Politicians Should Stop Opposing Medical Marijuana - National Pain Report

http://bit.ly/1dGGRNH

Report Claims Drug Testing for Painkillers Motivated by Profit - National Pain Report

Report Claims Drug Testing for Painkillers Motivated by Profit - National Pain Report
http://bit.ly/1rUK2oW

"...between 2000 and 2009 the number of all Medicare laboratory services increased by about 48%, while the number of drug tests conducted in physicians’ offices increased over 3,000,000 percent ....

An estimated 116 million Americans suffer from acute and chronic pain. Many doctors who treat chronic pain patients require them to submit to random drug screens as a condition for receiving prescription pain medications. The stated rationale is to prevent misuse and possible addiction, but Collen claims there is little evidence to support the value of drug tests on people with chronic pain.

“It would be naive to say that money has not played a role in the dramatic increase in drug testing as noted in the paper,” Collen wrote in an email to American News Report. “I believe profits drove drug testing behavior and behavior drove acceptance of the procedure before there was sufficient evidence of efficacy. Now physicians may be drug testing patients because others are doing it.”

Until recently doctors could charge Medicare and private insurers up to $225 for a urine drug test that cost them a little over $20. Medicare changed its reimbursement rules after the government found evidence that some laboratories and doctors were using questionable billing practices.

Ameritox, a national laboratory that provides drug testing, agreed to pay $16.3 million in fines in 2010 to settle claims that it gave kickbacks to doctors for using its labs. A whistleblower lawsuit filed by an Ameritox sales representative alleged the company made cash payments to physicians for drug test referrals and also placed personnel in doctors’ offices to collect urine samples for drug tests that were then billed to Medicare. Ameritox says its business practices have changed since the settlement. Another testing company, Calloway Laboratories, was indicted by a Massachusetts grand jury for an “extensive” kickback scheme for doctors. Calloway has denied the charges.

Concern about a “lack of boundaries” in drug test billing led the American Academy of Pain Medicine (AAPM) to warn its members about increased government oversight. “The use of clinical drug tests in pain management has become an area ripe for the submission of fraudulent and abusive claims for reimbursement and rampant ‘overutilization’ of laboratory services,” warned Jennifer Bolden, a former federal prosecutor who is a special counsel to the AAPM."

My doctor stopped "random" drug testing on both my wife and myself, when they found out that it wasn't covered and, as Medicaid recipients, they couldn't bill either of us.

Steve M

American Pain Rights Act Petition

American Pain Rights Act Petition
http://bit.ly/1dGT7h6

My comment:
I'm a cancer patient with severe intractable pain. Because of the rampant Opiophobia caused by the epidemic of anti-opioid propaganda, I can no longer get adequate treatment. Pain patients aren't addicts and we aren't criminals, we didn't choose to live in pain 24/7. We are treated as guilty the moment we walk into the doctor's office, hospital, or pharmacy. Addiction among chronic pain patients is extremely rare (3-7 patients per thousand). Those of its who take our medications as prescribed should NEVER been punished because an minority of people abuse these essential medications.

Drug abusers will get opioids no matter what. These opiophobic policies harm pain patients, but have no effect on addicts other than to raise street prices on pharmaceutical opioids and force them to switch to heroin (diacetylmorphine/diamorphine), which is much more dangerous because they cannot accurately determine dose. There are even a subset of extremely desperate pain patients (mostly in Florida) who have resorted to heroin for pain relief. No one should have to turn to the streets for medical care.

For intractable pain patients, like myself, there is no alternative to opioids. Before doctors prescribe opioids, they make us try dozens of other treatments (with serious side effects).

Opioids aren't nearly as dangerous as NSAIDs or acetaminophen, each of which kill more people each year than all opioids combined.

Overcoming Opiophobia
http://bit.ly/Opiophobia

The Intractable Pain Patients' Handbook for Survival
http://bit.ly/PainGuidePDF

8 Ways to Annoy a Friend With a Chronic Illness

8 Ways to Annoy a Friend With a Chronic Illness

http://bit.ly/1prSz0n

More Evidence That Naltrexone Aids Fibromyalgia

Pain-Topics News/Research UPDATES: More Evidence That Naltrexone Aids Fibromyalgia

http://bit.ly/1i2Ebaf

Is 5,000 IU/Day of Vitamin D Enough for Pain?

Pain-Topics News/Research UPDATES: Is 5,000 IU/Day of Vitamin D Enough for Pain?
http://bit.ly/1i2DRrV

The 6 Worst Words in Evidence-Based Medicine

Pain-Topics News/Research UPDATES: The 6 Worst Words in Evidence-Based Medicine
http://bit.ly/1i2DkpZ

"There is no evidence to suggest that jumping from an airplane in flight without a parachute as compared with using a parachute is fatal."

Purdue Developing Hydrocodone Drug to Rival Zohydro - National Pain Report

Purdue Developing Hydrocodone Drug to Rival Zohydro - National Pain Report

http://bit.ly/P2XNTo

This new formulation (HydroContin?) is an improvement because it is once daily, but it will be abuse deterrent, likely the same abuse deterrent as the new OxyContin, which many pain patients cannot absorb.

Be sure to read:
Drug Maker Blames ‘Misinformation’ for Zohydro Controversy
http://bit.ly/P30Dri

Drug Maker Blames ‘Misinformation’ for Zohydro Controversy - National Pain Report

Drug Maker Blames ‘Misinformation’ for Zohydro Controversy - National Pain Report

http://bit.ly/1peed85

Excerpt:
...“Without justification, inaccurate allegations have been made that Zogenix paid a university to arrange meetings with the FDA to secure approval of Zohydro ER,” wrote Hawley.

“The university in question has declared for the record that, in the meetings it arranged with FDA officials, no representation from Zogenix was present, nor was the company or its products ever discussed. In fact, Zogenix did not even exist as a company at the time of these meetings.”

Some pain patients who want access to Zohydro have told National Pain Report that it is Sen. Manchin who has a conflict of interest.

The senator’s daughter, Heather Bresch, is the CEO of Mylan Inc. (NASDAQ:MYL) a Pittsburgh-based pharmaceutical company that is one of the largest generic drug manufacturers in the world. One of Mylan’s top-selling drugs is a hydrocodone product containing acetaminophen.

Campaign records show that political action committees or individuals associated with Mylan have donated $127,000 to Manchin in the last five years — making Mylan the senator’s second largest corporate contributor...

Massachusetts Declares Health Emergency, Bans Zohydro - National Pain Report

Massachusetts Declares Health Emergency, Bans Zohydro - National Pain Report
http://bit.ly/1h4v1rg

This is totally unacceptable, and bit entirely legal. This will not have any effect on drug abuse (except, maybe, killing more via heroin overdose), but it will hurt pain patients.

We need to stop allowing these anti-opioid propagandists control the agenda.

OT - Why Is a Florida Man Facing Life in Prison For Lending a Friend His Car and Going to Sleep? | The Nation

Why Is a Florida Man Facing Life in Prison For Lending a Friend His Car and Going to Sleep? | The Nation
http://bit.ly/O1RZbz

Totally off-topic, but injustice is injustice, whether felony murder rule or going after physicians who treat pain.

ACLU Sues over Mandatory Drug Tests - National Pain Report

ACLU Sues over Mandatory Drug Tests - National Pain Report

http://bit.ly/1eWLOjN

FDA Approves First Device to Prevent Migraines - National Pain Report

FDA Approves First Device to Prevent Migraines - National Pain Report
http://bit.ly/1eWKqO2

Feds Investigate Walgreens Over Privacy Concerns - National Pain Report

Feds Investigate Walgreens Over Privacy Concerns - National Pain Report
http://bit.ly/1pefSuh

Anything to different from the discrimination of CP/IP patients.

Drug Maker Blames ‘Misinformation’ for Zohydro Controversy - National Pain Report

Drug Maker Blames ‘Misinformation’ for Zohydro Controversy - National Pain Report
http://bit.ly/1peed85

FDA Hears From Fibromyalgia Patients - National Pain Report

FDA Hears From Fibromyalgia Patients - National Pain Report

http://bit.ly/1pec1gP

Don't forget to read the comments.

A Pained Life: Pain Contracts - National Pain Report

A Pained Life: Pain Contracts - National Pain Report

http://bit.ly/1gsP5s5

FDA approved Fibromyalgia drugs cause side effects more often than relief

Drugs for Fibromyalgia: How Good Are They?- National Pain Report
http://bit.ly/O4OAth

Lyrica provides relief for 10% of patients, Cymbalta 6%, and Savella 8-10%.

Technically, 1 in 10 patients reporting significant relief from Lyrica/pregabalin is better than placebo, which is all that the FDA requires for approval (the major flaw in the FDA approval process).

"In the case of Lyrica, randomized controlled trials have shown that doses of 600 mg daily produce drowsiness in 15-20% and dizziness in 27% to 46%.

Other side effects include dry mouth, weight gain, peripheral oedema (swelling). In another important review, it was found that treatment was discontinued due to adverse events in one out of 4 patients."

Fibromyalgia patients deserve pain medication, not placebos that cause massive weight gain and fatigue.

For those that get relief from them, opioids (as well as Xyrem/sodium oxybate) should be made available to them. Enough of these useless antidepressants. Enough of making Fibromyalgia patients feel bad because they don't respond to these useless drugs. Enough of shaming Fibromyalgia victims for requiring opioids.

Chronic & Intractable pain victims are not addicts and we are not criminals. We shouldn't be treated any different from a diabetic refilling his insulin, metformin, Actos, or Byetta.

It's bad enough that opioids are withheld from most chronic pain patients, especially Fibromyalgia patients, but to give them drugs that are useless for their pain condition (they might help for depression), all while telling them that the drugs are specifically approved for their condition, is inhumane and cruel.

-Steve

"In summary, a minority of patients will report substantial benefit with Lyrica, and more will have moderate . Many will have no or trivial benefit, or will discontinue the drug because of adverse events."

“Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing.”

"Those who have been awarded a diagnosis of fibromyalgia find themselves in a “double bind.”

On the one hand, the very diagnosis can arouse disbelief at all levels of society and, on the other hand, the available drugs afford most of them little, if any, relief of pain."

BALANCED Opioid Article

It's unprecedented, but the media has finally realized that the patients' perspective in the debate over prescription opioids belongs in the article, not the comments section.

I urge you to read and pass along this well written, well thought out article...

Why are patients shut out of the debate over prescription pain medicine? - The Washington Post

http://wapo.st/P6xOuA