Temporary Logo

Welcome

I've been looking for some other CP/IP (Chronic/Intractable Pain) patients who would like to contribute to this site, whether one time, sporadic, or regularly. If anyone is interested, please email me at IntractablePainKills@gmail.com

I'm also open to any suggestions about improving the blog.

IF YOU WOULD LIKE TO COMMENT ON ANY POST, PLEASE CLICK ON THE TITLE TO LOAD THE INDIVIDUAL POST.


DUE TO A GLITCH IN BLOGGER, MY POSTS DO NOT ALWAYS POST IN ORDER BECAUSE THEY POST USING THE TIME THAT I STARTED THE INITIAL DRAFT. I DO MY BEST TO CORRECT THIS WHENEVER POSSIBLE, HOWEVER SOME SLIP BY, SO PLEASE REMEMBER TO READ THE TITLES OF MORE THAN JUST THE MOST RECENT POST IF YOU DON'T WANT TO MISS ANYTHING.

Friday, May 30, 2014

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

Thursday, May 29, 2014

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

Wednesday, May 28, 2014

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.

Tuesday, May 27, 2014

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.

Monday, May 26, 2014

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

Sunday, May 25, 2014

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

Saturday, May 24, 2014

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.

Friday, May 23, 2014

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

Tuesday, May 20, 2014

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

Friday, May 16, 2014

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

Monday, May 12, 2014

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

Sunday, May 11, 2014

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

Saturday, May 10, 2014

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

Friday, May 9, 2014

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

Thursday, May 8, 2014

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

Wednesday, May 7, 2014

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."

Tuesday, May 6, 2014

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."

Monday, May 5, 2014

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?
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)

Sunday, May 4, 2014

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.
~~~~~

Saturday, May 3, 2014

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

Friday, May 2, 2014

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.

Thursday, May 1, 2014

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