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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.

Tuesday, October 29, 2013

One Fox News chart that will mislead you about welfare and jobs in three different ways - Daily Kos

Daily Kos :: One Fox News chart that will mislead you about welfare and jobs in three different ways

http://bit.ly/1issp8o

Fox "News" keeps lying and people keep listening, WHY!?!?!??!

Monday, October 28, 2013

Here’s how GOP Obamacare hypocrisy backfires

Here’s how GOP Obamacare hypocrisy backfires
http://bit.ly/16i1NEC


I know that it is political, but the politics of healthcare effect us all, especially those of us on Medicare and/or Medicaid.

Steve

Update- October 28, 2013

I realized that I've let some of you down by failing to post much more than links. For that I apologize, I owe you all some original content.

I decided to start out by updating you on hope I've been doing. Unlike most weekends, I didn't spend hours at the park, library, or historical society with my dad, wife, and daughter. Still, I'm in excruciating pain, as if I'd run a marathon. The clonidine isn't helping with the leg pain at all. Despite the fact that I can still walk sort distances and don't have paralysis, I know that I'll soon require a wheelchair because of the weakness and pain in my legs.

The opioids that my PCP (or anyone else) is willing to prescribe exclude three of the most efficacious medications, methadone, Actiq, & intrathecal morphine.

There's something that I've been considering that I am very much against overall. It has become extremely obvious that no one is going to come to my rescue. No one will prescribe what I need and no one is willing to manage an intrathecal pump on a patient like me. I am a high risk of litigation because when I die, there will be no way to prove that the tumor killed me, not the high dose opioids. Actually, the inadequate analgesia itself could cause my death (through stroke, heart attack, or even aneurysm) thanks to the constant overdose of cortisol and epinephrine/adrenaline.

I have many types of pain throughout my body. Most of it originates in my spine, brainstem, and/or brain. Most of the pain responds to mu-opioids. Unfortunately, my leg pain only responds to intrathecal mu-opioids and methadone.

Methadone is a mu-opioid, like morphine, codeine, fentanyl, sufentanil, alfentanil, oxymorphone, oxycodone, hydromorphone, hydrocodone, and others. Methadone is also a kappa-opioid and NMDA receptor antagonist. Both kappa-opioid and NMDA receptor antagonists are extremely effective in treating neuropathic pain. Contrary to popular belief, Neuropathic Pain DOES respond to mu-opioids, HOWEVER it requires significantly higher doses than other pain types. For patients, like myself, that were born with a high tolerance to opioids, all pain requires a higher dose of opioids, but neuropathic pain in patients who already require high doses requires higher doses than most doctors are willing to prescribe. Low dose methadone on its own doesn't help me with most of my pain and only partially reduces my neuropathic pain, but, when added to my fentanyl regimen, it almost eliminated my leg pain and somewhat improved my other pain.

For those of you that don't know, intrathecal pumps deliver medication into the spine (one layer deeper than an epidural). Unlike an epidural, they use opioids only or mostly opioids. They use little or no buprivicane, so you can still walk and feel your limbs. Morphine is the FDA approved opioid for intrathecal pumps (although fentanyl, sufentanil, alfentanil, hydromorphone, and methadone can also be used; hydromorphone and fentanyl are the most common off-label intrathecal opioids). ONE milligram per day of intrathecal morphine is ROUGHLY equivalent to
* 300mg/day oral morphine
* 180mg/day oxycodone
* 90mg/day oral oxymorphone
* 9mg/day IV/IM/SubQ oxymorphone
* 48mg/day oral hydromorphone
* 3-6mg/day fentanyl
* 125-250 mcg/hr fentanyl

While intrathecal morphine is 300x stronger than oral morphine, the side effects are not. I cannot tolerate 2mg of IV/IM morphine or 5mg oral morphine without my throat swelling up and a drastic increase in painful muscle spasms and my neurosurgeon knew this prior to my intrathecal morphine trial. He still decided to use morphine in my intrathecal trial. Even at 3mg/day (0.125mg/hr) intrathecal morphine (equivalent to 900mg/day oral morphine), I had ZERO side effects.

Back to my point, I'm considering making an appointment with the local interventional pain management doctor who treated me pretty well, despite his interventional only attitude.

I'm curious to know if any of you have any experience with injections for neuropathic leg pain. I'm afraid that it could make the pain even worse. I'm definitely against multiple longterm injections of steroids, but even a single injection of just the numbing agent (lidocaine or similar) carries risk. I'd love to read your feedback.

Speaking of feedback, I have been receiving reports of problems with Blogger's native commenting system, so I decided to switch to a third party system. The system that I chose is called Disqus. It does require login, but you don't have to sign up with them, you can login with your Facebook, Twitter, or Google account. You have to authorize Disqus to let you login with your social media account, but it's a onetime, quick, and easy. Please let me know what you guys think. Thanks.

If anyone would like to share their stories or ask any questions, please don't hesitate to email me or comment below.

Steve
IntractablePainKills@gmail.com

Saturday, October 26, 2013

Don't reclassify hydrocodone as a Schedule II Controlled Substance

I urge everyone to review (and sign if you agree with) this petition.

I, personally, am so far beyond the point where even the maximum dose of Vicodin 10/300 will have any effect on me, but there were several times where I needed emergency prescriptions called into the pharmacy and if we change hydrocodone combination products to CII, many will suffer.

Kathleen Sebelius, Secretary, U.S. Department of Health and Human Services: Do not accept the recommendation of the FDA to reclassify hydrocodone as a Schedule II narcotic

http://chn.ge/1agsuNe

Living with Pain: The Fallout from Rescheduling Hydrocodone - National Pain Report

Living with Pain: The Fallout from Rescheduling Hydrocodone - National Pain Report
http://bit.ly/17PnbOP

Friday, October 25, 2013

Treatment of chronic pain puts doctors in a no win situation

Since I regularly complain about the abysmal treatment of chronic and intractable pain patients in the USA, I thought that I should share this 2011 article written by a physician that explains the dilemma that (at least the good) doctors go through every time a pain patient walks into their office. I've included just a small excerpt from the article below, but I promise that the article is well worth reading in it's entirety. Although it SHOULD not be necessary, it may be extremely helpful to be able to empathize with the physician the next time that you have to try to convince them that your pain deserves adequate analgesia.

Treatment of chronic pain puts doctors in a no win situation
http://bit.ly/1ijfMMD

Steve

"...How the physician can be expected to “believe” the patient, yet not rely only on subjective history by the patient but have objective evidence often for problems where no objective evidence exists, is the inherent flaw in trying to define and regulate pain management....

...We are supposed to both show compassion and adequately treat non-malignant pain with the same drugs that professional patients and opioid abusers seek to get prescriptions..."

Clonidine, yet again

I took my clonidine again eight hours ago and I'm tolerating 0.05mg well. Even now, I'm noticing mild improvements in neuropathic pain and PTSD. Unsure about headaches, they fluctuate too much to be able to tell so soon.

Doing alright overall, sick of the cold and ready for Spring already! I can feel the depression from SAD already =(

My wife was finally able to get her prescription for oxymorphone filled. She seems to be doing a little better. Unfortunately, I passed her sore throat back to her before I got rid of it.

Thanks

Steve

Thursday, October 24, 2013

ACA Health Exchanges

Many people have been throwing problems with HealthCare.gov, so I wanted to remind everyone that they're are several other methods for although for health insurance through the exchanges, including calling 800-318-2596 or finding a local certified healthcare navigator.

Please don't let the problems with HealthCare.gov stop you from getting health insurance through the exchanges for reasonable prices.

My wife's aunt can get a bronze plan for FREE or a silver plan for less than a dollar a day with the credits. She's currently uninsured and doesn't qualify for Medicare for about nine more months. She doesn't qualify for Medicaid and even if our asshole governor had approved the Medicaid expansion, her income would still be too high for Medicaid.

Even those without preexisting conditions should sign up because if you don't sign up by March 31, 2014, you'll have to wait until 2015 to get coverage. Maybe you'll be lucky and stay healthy, maybe you'll lost everything. I know far too many people who lost their homes because they couldn't afford or chose not to purchase health insurance.

Steve

Wednesday, October 23, 2013

Clonidine, again

So, thanks to the killer headache after my first dose of clonidine 0.1mg (100mcg), I decided to only take 0.05mg (50mcg) last night. No headache and it did help me sleep, but didn't hit me like a brick wall. Also, I noticed since I woke up today that my neuropathic leg pain is less severe than usual. Of course, this could be part of the natural fluctuation of pain, but I'm hoping that the medication is helping.

I'm about to take my third dose and I'm worried that I'll have another bad reaction. So, fingers crossed.

I hope everyone is doing well and in minimal pain.

-Steve

Monday, October 21, 2013

Clonidine

About two hours ago, I took my first dose of clonidine 100mcg. Aside from the drowsiness and headache, it sense tolerable. My doctor prescribed it in the hopes that it will help me with the neuropathic pain and migraines. I'm hoping that it also helps with my PTSD.

If anyone reading this has any experience with clonidine (pills or patches) for the treatment of any condition, please let me know by emailing me and/or commenting below this post.

Steve
IntractablePainKills@gmail.com

You've got to be kidding me

So, today is my 24th birthday, but instead of doing something fun, as I had planned, I'm spending my birthday in bed (not in the good way).

My throat is killing me!

I wanted to update you guys with something lighthearted and fun to lift the mood of this blog, but I can't think of anything at the moment because of this stupid sore throat. For that, I apologize.

I hope that all of you are doing well and having minimal pain.

-Steve

Saturday, October 19, 2013

Adsense

As some of you may have noticed, I utilize Google Adsense on my blogs. As an OCD control freak, I keep track of my earnings. I've noticed that my earnings decreased and then SIGNIFICANTLY slowed. This tells me that Google's robot believes that there are "invalid clicks".

PLEASE DO NOT blindly click on links, it doesn't help me. If you see a link that you're legitimately interested in that's one thing, but opening multiple links in one session or opening a link every time that you're on my site can cause my site to get flagged by Adsense. Please remember that advertisers are trying to promote their business and it is unfair to them to click a link simply because you want to help the publisher.

Steve

Wednesday, October 16, 2013

Study: Cannabis Provides Substantial Relief to Those With Back Problems

Study: Cannabis Provides Substantial Relief to Those With Back Problems
http://bit.ly/19Q2OVD

OT- Cancer & Cannabis

Aside from helping with the pain and nausea, cannabis is extremely useful in the fight against primarily brain tumor, and all cancer really. It forces the cancer to kill itself and then eat itself.

Sources:
Cannabinoid action induces autophagy-mediated cell death through stimulation of ER stress in human glioma cells
http://1.usa.gov/ZIKz06

Delta9-tetrahydrocannabinol (THC) induces apoptosis in C6 glioma cells
http://1.usa.gov/128uuiF

A combined preclinical therapy of cannabinoids and temozolomide against glioma
http://1.usa.gov/ZIKGsP

Spouses (and all significant others)

I came across this photo on Facebook and it made me think of everything that our spouses and significant others go through.

As both an IP (Intractable Pain) patient and the spouse of an IP patient, I feel the stress of knowing everything that I'm putting my wife through. Just last night, my wife had to go to the ER (we got stuck in the hallway, again, so no TV for distraction and no outlet for my phone to watch something on it and no quiet or peace). I spent almost eight hours pacing back and forth. They didn't find the problem, the nurse was an opiophobic bitch, the urine test took well over two hours, anextra blanket took an hour, a ginger ale took 90 minutes, and after two hours and seven requests we were told that they had just run out of sandwiches. I couldn't do a damn thing too keep her comfortable (pain, thirst, or food).

Anyway, my point is that it isn't easy to be married to a CP/IP patient. So, I'd like to thank everyone who supports CP/IP suffers.

I'd also like to dedicate the week from 10/14-10/20 to them as the unofficial Intractable Pain Spouses Appreciation Week.

Happy IPSA week!

Steve

P.S. Please check out one of my other blogs
EDS Pain-  a joint blog between my wife and myself about her EDS
Cannabis Heals- ...about the healing qualities of cannabis and cannabinoids
Political Opiophobia- ...about Opiophobia
Cancer Hurts- ...about cancer and the pain surrounding it
Enduring Depression- ...the name speaks for itself

Sunday, October 13, 2013

Sleep, or lack thereof

Recently, I have experienced a SEVERE increase in insomnia, despite multiple sleep aids. This inspired me to write a post on insomnia.

First, anyone experiencing insomnia should mention it to their doctor because undertreated pain can cause insomnia and insomnia worsens pain.

Talking to your doctor about your insomnia doesn't mean that you need to take medication, but they need to know. Plus, if you do need medication, they'll know that you've tried other things and that it's not a brief bout of insomnia. The doctor can discuss non-drug treatments with you including better sleep habits and

I don't believe in using dangerous psychiatric drugs, like antidepressants (especially trazadone) or antipsychotics (risperidone/Risperdal, Seroquel) for sleep. It's every patient's personal choice, but I developed permanent tardive dyskinesia from it low dose, short-term risperidone/Risperdal as a child. Seroquel caused night terrors

There are many treatments for insomnia that should be considered.

Melatonin
* Melatonin supplements
* Rozerem

Barbiturates- rarely used anymore

Benzodiazepines
* lorazepam/Ativan
* alprazolam/Xanax
* Valium/diazepam
* and countless others

OTC Medications
* diphenhydramine/Benadryl/Unisom- the generic Benadryl is IDENTICAL to Unisom, don't waste your money
* Tylenol PM- DO NOT TAKE FOR INSOMNIA, take diphenhydramine; this medication is intended for occasional treatment of pain & insomnia, but leads to the overuse of acetaminophen/paracetamol/Tylenol
* Advil PM- DO NOT TAKE FOR INSOMNIA, take diphenhydramine; this medication is intended for occasional treatment of pain & insomnia, but leads to the overuse of ibuprofen

Z-drugs
* Lunesta/eszopiclone - this is an overpriced waste of money and should only be used as a last resort, after cheaper, equally or more effective drugs have been tried; this is the left hands isomer of zopiclone (clinically the same drug)
* Ambien/zolpidem - this is a very useful medication, but some idiots took Ambien CR and drove less than six hours later, which caused the FDA to recommend limiting the dose to 5mg, especially in women; many doctors are unwilling to go to the more effective 10mg dose, even if you don't drive and the 5mg was worthless
* zopiclone/Imovane/Zimovane/Imrest
* zaleplon/Sonata

Steve

Saturday, October 12, 2013

Suboxone

Suboxone is NOT PAIN MEDICATION! It is for ADDICTS! It is buprenorphine and naloxone, but the naloxone/Narcan has no real effect when swallowed.

Below 0.2mg (like the buprenorphine patches) are for pain, above 2mg (like Suboxone) buprenorphine acts more like naltrexone. It prevents true opioids from working.

Sorry for the tone of this post, I'm frustrated, I've been seeing a lot of lies about Suboxone lately and it drives me nuts because most of the lies are started by DOCTORS!

Buprenorphine also seems to be much more habit forming than most opioids (likely due to the strong affinity for three mu-opioid receptors) and appears to create a much stronger physical dependence. It's harder to get off of than methadone, fentanyl, oxycodone, and morphine, especially for pain patients. For addicts, there's no high, so there's no temptation.

My last therapist specialized in pain patients and addicted patients, he told me that most of his patients that went on Suboxone regretted it. So many of them said that they'd rather stop heroin or methadone than stop Suboxone. I've also heard similar things from pain patients in my dozen different support groups after they were tricked into taking it.

I STRONGLY advocate AGAINST anyone starting Suboxone or Butrans
(buprenorphine patches) without FIRST researching them IN DETAIL.

Suboxone helps a few, but it hurts many. It is expensive, bad medicine. Methadone is 1/60th the price of Suboxone and it works for pain, dependence, or both at any dose.

Explanation of dependence, pseudo-addiction, addiction, and tolerance, for those interested
http://bit.ly/drugfallacies

Doctors can only LEGALLY prescribe Butrans for pain and Suboxone is only for opioid dependence. Accepting a prescription for Suboxone usually means that your chart will forever read "Opioid Dependence" or "opioid addiction".

Steve

Friday, October 11, 2013

Update

My wife and I had our quarterly checkup with our PCP Wednesday night. As some of you know, my wife and I are under-medicated because of a number of factors, including Opiophobia, the semi-recent increase in the War on Drugs, and the fact that our PCP also does Suboxone (treats addicts).

Our PCP still refuses to increase our Duragesic. My wife was switched from OxyIR to oxymorphone, after months of requiring that multiple doses of OxyIR 30mg. He wasn't as stingy as when he put me on oxymorphone, but her pain is finally diagnosed (EDS, type 1 & 2), but he still a bit stingy.

After 7-9 months of begging for an increase, he finally increased my oxymorphone again. It's still nothing collapsedl compared to the Actiq that he refuses to prescribe since he's started doing buprenorphine/naloxone treatments (generic Suboxone and Suboxone film, mainly the film according top the literature the drug reps litter the office with). That is also why he refuses to use methadone for pain management.

Wow, off-topic, sorry. Still waiting on insurance approval, fingers crossed that we get approved and that these help.

Tuesday, October 8, 2013

Chronic Pain Harms the Brain

Chronic Pain Harms the Brain
http://bit.ly/16PpDKC

I believe that the brain imaging illustrates the damage most clearly. Failure to treat acute or chronic pain leads to CNS damage and chronic pain. Untreated and undertreated CP/IP (Chronic Pain/Intractable Pain) leads to brain atrophy and death.

-Steve
Please consider taking the time to read my previous posts  check out the links on the sidebar. Thank you.

Sunday, October 6, 2013

OT- a bit of humor

When It Comes To The Truth About Drug Addiction, Scientists Are 'Breaking Bad'

When It Comes To The Truth About Drug Addiction, Scientists Are 'Breaking Bad'
http://onforb.es/1bBgrvp

Please just take a few minutes to read it. It is a great article.

Quote from article that reiterates what I've been saying, groups like PROP are greedy, not concerned.

Dr. Hart explains why. According to the Times,

“Eighty to 90 percent of people are not negatively affected by drugs, but in the scientific literature nearly 100 percent of the reports are negative [affects],” Dr. Hart said.  “There’s a skewed focus on pathology.  We scientists know that we get more money if we keep telling Congress that we’re solving this terrible problem. We’ve played a less than honorable role in the war on drugs.”

Steve

Friday, October 4, 2013

Pacify the Shutdown

I know that this is somewhat political, but the vast majority of CP/IP patients rely on the federal government to survive (SNAP, Meals on Wheels, SSI, SSDI, Medicare, Medicaid, CHIP, etcetera) and these services are threatened by the government shutdown. Anything that can be done to end this helps us and the standard petitions are being ignored.

*****
House Speaker John Boehner must act like an adult and stand up to tantrum-throwing, infantile Republicans to call a vote on a clean budget resolution and end the GOP shutdown. For every person who signs the petition, CREDO will send Boehner a pacifier. To read more and/or add your name now:

http://bit.ly/18WkWfX

Support

I haven't had a pain related post in a few days, so I wanted to check in. The first decent idea that came to mind as support. We all need great support systems, but family and friends can't always handle our pain and stress, so we turn to each other.

As an intractable pain patient, I find three problems with support groups:
1) There aren't many around me
2) I can't travel to one during a pain flare, when I need to avoid isolation most
3) Support groups only meet at select times, usually once a week

So, we turn to online support groups. There are many online support groups on Google Groups or Yahoo Groups. There are also Facebook groups, but I don't recommend them because they aren't as close knit and you can't have the messages delivered directly to your inbox. I have found several groups that I really like, but the most broad and helpful one, with the least restrictive rules is LWCP. It has also helped me the most. I will say that there are many other great groups and my recommendation of LWCP doesn't mean that I don't value the other groups. As a Moderator of LWCP (the owner has become a great friend), I review membership requests. If anyone does decide to join, please note that you found the group from my blog when you sign-upm

LWCP- Living With Chronic Pain

Steve

Thursday, October 3, 2013

Logo Contest

Wherever someone posts a link to this blog on Facebook, a terrible tools/under construction image shows up.  I short, I need a logo. Preferably something elegant and simple.

The logo should be square. Other than that, let your imagination run wild.

Unfortunately, I can't afford a cash prize, so the prize is limited to the pride of having your design chosen and helping me spread awareness about CP/IP.

Please email any submissions to me at:
IntractablePainKills@gmail.com

They will be posted to the site and a vote will take place.  If too many are received to

I'm planning on leaving the contrary open as king as necessary, but I'm hoping to begin the voting phase by October 21 and end voting by October 31. If anyone is working on a logo and needs additional time, please email me and I'll gladly extend the deadline to get the best logo.

I've attached something that I found on Facebook that I like. I'd prefer a drawing, image, or pattern in addition to this, but I'm flexible. It doesn't need to be anything looked this, I'm just floating an idea, a starting point.

Steve

Update- October 3

I don't really have much to say, I'm still recovering from spending the day out on both Saturday and Monday. I'm still in pain. I'm trying to get by. I just want you all too know that I haven't forgotten about you.

It's 11:20am and I still haven't slept, which means I've recovered from the post-exertional malaise from the CFIDS, but now the insomnia has returned.

Steve

Wednesday, October 2, 2013

Open Enrollment

The Affordable Care Act of 2009 (HeritageCare, aka ObamaCare)'s exchanges opened yesterday, October 1, 2013, so now seems like a great time to remember everyone to ignore the propaganda and get the real information and/or sign up at:
HealthCare.gov

Remember, coverage begins January 1, 2014 and open enrollment ends in 180 days (March 31, 2014) NM

For those considering opting out, remember... Even if the fine is a little cheaper than getting coverage, opting out means your not insured if you get hurt or sick. Please think through your decision. None of us are invincible!

Steve