Pediatric Geneticist for my 23 year old wife

I'd like to take a minute to apologize for posting this from my cellphone without proofreading it. I believe that I have fixed all of the topographical errors and missing pieces of information.

My wife has been suffering from unrelenting pain for years. She's seen almost every specialist known to man. She's been called crazy, hypochondriac, lazy, drug seeking, and God knows what else. She's been through a total of over eighteen months of physical therapy. She's had half of a dozen surgeries.

She was on a chronic pain support group describing her symptoms when someone told her (my wife) that she (the friend) had EDS (Ehlers–Danlos syndrome) and my wife's symptoms sounded extremely familiar. My wife and I researched EDS and decided that it was worth looking into from a clinical perspective.

In June, my wife and I had our three-month follow-up appointments with our PCP. He wasn't convinced that she had EDS, but he admitted that it was possible, so he referred her to a genetic specialist in the hopes that, even if it wasn't EDS, he might find an answer to the route of her pain and various other symptoms.

Well, my wife was scheduled to see one of the Pediatric Geneticists at Hershey Medical Center 9/30 at 10:30am. Remember, my wife and I have had quite a few issues with physicians at that hospital, especially regarding pain, opioids, and botched surgery. We didn't want to go there, but we didn't have much of a choice, so we made an exception to our "NEVER go to Hershey" rule. Anyway, we never got the paperwork in the mail, so we decided to get there an hour early.

They took us back right away. We never got a chance to fill out the paperwork, which they promised that they'd bring to the secondary waiting room ASAP. The doctor (geneticist) and the genetic counselor came in. The doctor was old, which worried me because my wife is on significant doses of opioids, many older doctors are extremely opiophobic, and the doctors at this hospital are known for rampant Opiophobia. The doctor took an extremely thorough history and exam. He told the generic counselor that the diagnosis was obvious. Every new exam test and question about her history and family history just reasured him of this apparently obvious diagnosis. He repeatedly told us that should have been diagnosed in early childhood. This diagnosis is the cause of her pain and the stretch marks that were repeatedly blamed on the prednisone. Dr Ladda spent well over an hour talking to us and reassuring us.

Anyway, he gave her an official diagnosis of EDS (Ehlers–Danlos syndrome) Type 1/2.

He proceeded to tell her that ANYTHING that helps her, including opioids and an intrathecal pump should be tried. Be then he proceeded to confirm what we already knew:
* opioids are not that dangerous
* opioids can cause physical dependence
* opioid addiction fear is vastly overblown
* opioids can be extremely effective for pain relief
* tolerance develops
* you have to weigh relief versus side effects (only side effect either of us suffers from is constipation)
* Miralax is great for OIC (opioid induced constipation)

He's recommending that her PCP
* increase her current dose of Duragesic
* refer her for an intrathecal pain pump evaluation
* stop harassing her about her need for pain medications
* order follow-up echocardiograms every 2 years

I know that I had plenty more that I wanted to say, but I can't remember,so I'll post this as-is and if anyone notices anything that I may have forgotten, please comment and/or email me.

Steve
bit.ly/IPkills
IntractablePainKills@gmail.com

Notes: EDS is a genetic disorder, but the geneticist informed us that the blood tests are clinically irrelevant, so the doctor diagnosed solely on examination, a series of physical tests on her joints and skin, patient history, and family history.

There is no direct treatment for EDS, there is no cure. There are lists of things that she can do to limit damage. Other than that, pain control through whatever means necessary (opioids, SCS, IDD/pump, APAP NSAIDs, Lidoderm, etcetera) should be the primary concern.

Saturday

I started writing this yesterday as a post to my support group, but couldn't focus long enough to edit it for this blog. I've tried to edit it from current tense to past tense, but I easily could have missed something and if I did, I apologize.
Written 9/29/2013
Edited 10/8/2014

-------------------------

I spent most of Saturday at my daughter's favorite park and, oddly enough, the local cemetery (Molly Pitcher is buried there, my 5 year old daughter can't get enough of history) with my daughter. We (my wife) and I took her to the park with my Dad today and I'm in excruciating pain. I knew that I'd pay for it, I was maxed out on my breakthrough pain meds and Zofran/ondansetron for the day before dinnertime* and I would kill for an epidural or nerve block (I don't believe in serial nerve blocks and I never really want too have one done), but it was do worth it to see her eyes light up while reading the historical marker and making new friends and racing down the slide with one of her seven new friends and finally mastering the monkey bars. We also took my Dad to Giant (grocery store) because he needed groceries and things have been tight and Bank of America hasn't exactly followed through with the pre-employment promises and it was nice to be able to help him.

Anyway, back to my point, I may not walk for days, but nothing compares to spending eight hours with your kid and being sure that she, at least for a little while, they forgot that your sick and/or dying.

She figured out that I was sick I'm her own and I just couldn't lie to her. Yes, I sugar-coated the facts, but I lost too many people without watching and can never forgive the adults that let me get blind-sided. I was the kid that was way too mature for my age and got along with adults just as well as I did with kids, I babysat my newborn cousin at the age of ten. Yes, adult(s) were in the house, but they were busy and I liked the responsibility. Anyway, she's exactly like that and we thought she could handle it, and she has. My mother doesn't agree, but she was/is a terrible mother. She's also one of the ones who let me repeatedly get blindsided. My point is that her opinion means nothing to me. In fact, her disagreement assures me that I made he right choice.

Anyway, my real reason for this post is to say that I had an awesome day and I have an awesome kid and it was worth the pain and suffering over the next 3-4 days.

* My doctor allows me to take my six daily doses as I see fit instead of every for hours. PAIN MEDICATION SHOULD ALWAYS BE TAKEN AS PRESCRIBED

Safe

I recently bought a new medication safe and I'm pretty happy with it, so I though I'd share it with you. It's not like those crappy lock boxes from Walmart that even I can open with my bare hands. It is a safe. It even has hardware to bolt it too the ground.

I got it for $30 (was $150), but the provide went up by $1.99.

Quarter Master 7825 Electronic/Digital Home Office Security Safe
http://bit.ly/18t5A2o (corrected link)
The current price is $51.99
You need coupon code AUTUMN10
To get it for ~$32 by checking out with Visa V.me mobile

It's a pretty nice digital combination safe that uses four AA batteries (included) and no one is opening it with their bare hands (like a Walmart lock box).

Outside dimensions: 13.75'' H x 9.75'' W x 9.75'' D.
Inside dimensions: 12 '' H x 8.75'' W x 8.5

Note: I am not an affiliate and do not benefit from your purchase, it's just a really good deal that I'd like to share.

Update 9/25/2013

Another day of excruciating pain, waiting out the clock.

A little good news, they're opening a new pain management office about twenty miles from here. Unfortunately, it's part of the same group that refused to help me before. Still, that means hiring at least 1-2 doctors, which increases the odds of one of them overriding the office manager and helping me.

Wisdom

"You know that old saying... Those who can, do. Those who can't, sign our paychecks. Change that last part to make the laws."

Courtesy of Cabot

Update

I spent several hours at the park with my daughter yesterday, I risky over did it. I'm in excruciating pain and I can't sleep even with my nausea medications. I used another of my severely limited supply of Lidoderm (my insurance gives me crap about opioids, but doesn't covert Lidoderm without a shingles diagnosis, what a racket).

On the plus side, re-watching Mythbusters and remembering some neat facts. Mythbusters is a really good distraction.

Mini rant: pharmacy can't get fentanyl patches in stock and we're eventually going to be stuck with a new brand that may or may not be useable. I'm so sick of artificial stuff shortages thanks to the War on Drugs!

Steve
IntractablePainKills@gmail.com

Opioid Refugees: Patients Adrift in Search of Pain Relief

Opioid Refugees: Patients Adrift in Search of Pain Relief

http://bit.ly/16pSb6k

OT- Today in History 9/21/2013

Today is Saturday, Sept. 21, the 264th day of 2013. There are 101 days left in the year.

Today's Highlight in History:

On Sept. 21, 1912, magician Harry Houdini first publicly performed his so-called Chinese Water Torture Cell trick at the Circus Busch in Berlin, escaping after being immersed upside-down in a vertical water tank, his ankles secured in a set of stocks which made up the tank lid, which was locked into place.

On this date:

In 1792, the French National Convention voted to abolish the monarchy.

In 1893, one of America's first horseless carriages was taken for a short test drive in Springfield, Mass., by Frank Duryea, who had designed the vehicle with his brother, Charles.

In 1897, the New York Sun ran its famous editorial, written anonymously by Francis P. Church, which declared, "Yes, Virginia, there is a Santa Claus."

In 1912, legendary cartoon animator Chuck Jones was born in Spokane, Wash.

In 1937, "The Hobbit," by J.R.R. Tolkien, was first published by George Allen & Unwin Ltd. of London.

In 1938, a hurricane struck parts of New York and New England, causing widespread damage and claiming some 700 lives.

In 1948, Milton Berle made his debut as permanent host of "The Texaco Star Theater" on NBC-TV.

In 1962, "The Jack Paar Program," a weekly, prime-time show that followed Paar's stint on "The Tonight Show," began a three-year run.

In 1970, "NFL Monday Night Football" made its debut on ABC-TV as the Cleveland Browns defeated the visiting New York Jets, 31-21.

In 1982, Amin Gemayel, brother of Lebanon's assassinated president-elect, Bashir Gemayel, was himself elected president. National Football League players began a 57-day strike, their first regular-season walkout.

In 1987, NFL players called a strike, mainly over the issue of free agency. (The 24-day walkout prompted football owners to hire replacement players.)

In 1989, Hurricane Hugo crashed into Charleston, S.C. (the storm was blamed for 26 directly caused U.S. deaths). Twenty-one students in Alton, Texas, died when their school bus, involved in a collision with a soft-drink delivery truck, careened into a water-filled pit.

Ten years ago: Former Citigroup CEO John S. Reed was named temporary head of the New York Stock Exchange. Paul Martin was elected by Canada's Liberal Party to succeed Jean Chretien (zhahn kreh-TYEN') as prime minister. NASA's aging Galileo spacecraft deliberately plunged into Jupiter's turbulent atmosphere, bringing a fiery conclusion to a 14-year exploration of the solar system's largest planet and its moons.

Five years ago: South African President Thabo Mbeki (TAH'-boh um-BEH'-kee) announced his resignation. "Mad Men" became the first basic-cable show to win the top series Emmy; "30 Rock" and its stars Tina Fey and Alec Baldwin won comedy awards. The United States took back the Ryder Cup with a 16 1/2-11 1/2 victory over Europe. Baseball said farewell to the original Yankee Stadium as the Bronx Bombers defeated the Baltimore Orioles 7-3.

One year ago: No one was injured when a plane carrying Ann Romney made an emergency landing in Denver after smoke filled the cabin. The wife of the Republican presidential nominee Mitt Romney was traveling from Omaha, Neb., to Los Angeles, when an apparent electrical fire broke out. A man was bitten multiple times after leaping from a monorail into a tiger exhibit at the Bronx Zoo. People lined up to buy Apple's iPhone5 as it went on sale in the United States and several other countries.

Today's Birthdays: Poet-songwriter Leonard Cohen is 79. Author-comedian Fannie Flagg is 72. Producer Jerry Bruckheimer is 70. Musician Don Felder is 66. Author Stephen King is 66. Basketball Hall of Famer Artis Gilmore is 64. Actor-comedian Bill Murray is 63. Hall of Fame jockey Eddie Delahoussaye is 62. Rock musician Philthy Animal is 59. Former Australian Prime Minister Kevin Rudd is 56. Movie producer-writer Ethan Coen is 56. Actor-comedian Dave Coulier is 54. Actor David James Elliott is 53. Actress Serena Scott-Thomas is 52. Actress Nancy Travis is 52. Actor Rob Morrow is 51. Retired MLB All-Star Cecil Fielder is 50. Actress Cheryl Hines is 48. Country singer Faith Hill is 46. Rock musician Tyler Stewart (Barenaked Ladies) is 46. Country singer Ronna Reeves is 45. Actress-talk show host Ricki Lake is 45. Rapper Dave (De La Soul) is 45. Actor Rob Benedict is 43. Actor James Lesure is 42. Actor Alfonso Ribeiro is 42. Actor Luke Wilson is 42. Actor Paulo Costanzo is 35. Actor Bradford Anderson is 34. Actress Autumn Reeser is 33. TV personality Nicole Richie is 32. Actress Maggie Grace is 30. Actor Joseph Mazzello is 30. Rapper Wale (WAH'-lay) is 29. Actors Nikolas and Lorenzo Brino are 15.

Thought for Today: "The crisis of yesterday is the joke of tomorrow." — H.G. Wells, English author (born this day in 1866, died 1946).

Charting the Depths- CP/IP frequently causes Depression

Depression remains rampant, misunderstood, and stigmatized. For decades, the disease model of depression has dominated discussion of what depression is and what should be done about it. Here, we take a more balanced view of depression and strive to bring this topic out of the dark. We are devoted to expanding the conversation by linking up people who currently suffer from depression, people who have overcome depression, and the friends and family who care about people who suffer from depression. Please join me in helping to start a better, richer national conversation about depression.

http://on.fb.me/1aVxfsZ

Depression comics

These comics are intended to describe what it's like to live with depression, but several of them apply to chronic and intractable pain.

http://bit.ly/16ysiST

Is a glass of water all that different from pain?

I received an email thatcan easily be used to explain how difficult living chronic pain can be...

A young lady confidently walked around the room with a raised glass of water while leading a seminar and explaining stress management to her  audience.

Everyone knew she was going to ask the ultimate question, 'half empty or half full?' She fooled them all. "How heavy is this glass of water?" she inquired with a smile.

Answers called out ranged from 8 oz. To 20 oz.

She replied, "The absolute weight doesn't matter.  It depends on how long I hold it. If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm.  If I hold it for a day, you'll have to call an ambulance.  In each case it's the same weight, but the longer I hold it, the heavier it becomes."

She continued, "and that's the way it is with stress.  If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."

"As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden- holding stress longer and better each time practiced. So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night. Pick them up again tomorrow if you must.

... many of us can handle acute pain without outside help beyond acetaminophen/paracetamol/Tylenol or ibuprofen/Advil/Motrin, but handling chronic pain of equal severity is a much more daunting task.

Acetaminophen/paracetamol/Tylenol

The FDA took over 40 years to finalize the monograph for acetaminophen. During which we eradicated small pox, decoded the human genome and cloned a sheep.

Acetaminophen also the most deadly OTC drug, with over 150 people dying each year in the USA alone. More than half are accidental overdoses, not suicides or longterm effects.

Acetaminophen alone kills more people per year than all prescription opioids COMBINED.

Infant oral solutions are actually 3x more potent than children's oral solutions because its terribly difficult to make children swallow medicine. Also the "infant" dose applies to children up to 3 years old. Imagine trying to keep this straight. Or, if a physician means children's but you buy infants because they didn't specify, you could overdose your child by a factor of 3, and that could kill them. This isn't just a hypothetical, it has happened.

Just things to think about when we self medicate or, for the health care providers, medicate your patients or, for parents, medicate our children.

Prescription Assistance

I encourage everyone, with or without insurance, to check out the Partnership for Prescription Assistance for discounts and free medications. Every cash patient should have an Rx discount card.

pparx.org

Steve

Walgreens' "secret checklist" reveals controversial new policy - 13 WTHR Indianapolis

Walgreens' "secret checklist" reveals controversial new policy - 13 WTHR Indianapolis

http://bit.ly/1fkEiOT

Someone actually got a copy of the policy. The PDF is available at:

http://bit.ly/1fkEPAs

Steve
IntractablePainKills@gmail.com

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

OT- Today in History 9/19

Today is Thursday, Sept. 19, the 262nd day of 2013. There are 103 days left in the year.

Today's Highlight in History:

On Sept. 19, 1982, the smiley emoticon was invented as Carnegie Mellon University professor Scott E. Fahlman proposed punctuating humorously intended computer messages by employing a colon followed by a hyphen and a parenthesis as a horizontal "smiley face." :-)

On this date:

In 1777, the first Battle of Saratoga was fought during the Revolutionary War; although the British forces succeeded in driving out the American troops, the Americans prevailed in a second battle the following month.

In 1796, President George Washington's farewell address was published.

In 1881, the 20th president of the United States, James A. Garfield, died 2 1/2 months after being shot by Charles Guiteau; Chester Alan Arthur became president.

In 1934, Bruno Hauptmann was arrested in New York and charged with the kidnap-murder of Charles A. Lindbergh Jr.

In 1945, Nazi radio propagandist William Joyce, known as "Lord Haw-Haw," was convicted of treason and sentenced to death by a British court.

In 1957, the United States conducted its first contained underground nuclear test, code-named Rainier, in the Nevada desert.

In 1959, Soviet leader Nikita Khrushchev, visiting Los Angeles, reacted angrily upon being told that, for security reasons, he wouldn't get to visit Disneyland.

In 1960, Cuban leader Fidel Castro, in New York to visit the United Nations, angrily checked out of the Shelburne Hotel in a dispute with the management; Castro ended up staying at the Hotel Theresa in Harlem.

In 1961, Barney and Betty Hill, a New Hampshire couple driving home from vacation, experienced what they later claimed under hypnosis was a short-term abduction by extraterrestrials.

In 1962, the Western TV series "The Virginian" debuted on NBC.

In 1970, the situation comedy "The Mary Tyler Moore Show" debuted on CBS-TV.

In 1985, the Mexico City area was struck by a devastating earthquake that killed at least 9,500 people.

---------

Ten years ago: Former Hurricane Isabel raced from Virginia to Canada, delivering far less rain than expected but leaving millions without power. Iraqi leader Saddam Hussein's defense minister, Sultan Hashim Ahmad, surrendered to U.S. forces.

Five years ago: Struggling to stave off financial catastrophe, the Bush administration laid out a radical bailout plan calling for a takeover of a half-trillion dollars or more in worthless mortgages and other bad debt held by tottering institutions. Relieved investors sent stocks soaring on Wall Street and around the globe.

China's food safety crisis widened after the industrial chemical melamine was found in milk produced by three of the country's leading dairy companies.

Hours after performing for thousands of South Carolina college students, former Blink-182 drummer Travis Barker and celebrity DJ AM were critically injured in a fiery Learjet crash that killed four people. (DJ AM, whose real name was Adam Goldstein, was found dead in his apartment on Aug. 28; he was 36.)

Baseball's new instant replay system produced its first reversal when Tampa Bay's Carlos Pena had a two-run double changed to a three-run homer during the fourth inning of a game against Minnesota. (The Rays beat the Twins, 11-1.)

One year ago: Members of Congress presented the Congressional Gold Medal to Myanmar democracy leader Aung San Suu Kyi (ahng sahn soo chee) in a ceremony in the Capitol Rotunda. The Justice Department's internal watchdog found fault with the agency's handling of a gun-trafficking probe in Arizona that resulted in hundreds of weapons turning up at crime scenes in the U.S. and Mexico. The inspector general's report referred more than a dozen people for possible disciplinary action for their roles in Operation Fast and Furious. The Windseeker ride at Knott's Berry Farm in Buena Park, Calif., broke down, leaving about 20 riders who expected a three-minute thrill dangling 300 feet over the amusement park for nearly two hours.

Today's Birthdays: Author Roger Angell is 93. TV host James Lipton ("Inside the Actors Studio") is 87. Actress Rosemary Harris is 86. Former Defense Secretary Harold Brown is 86. Actor Adam West is 85. Retired MLB All-Star pitcher Bob Turley is 83. Actor David McCallum (TV: "NCIS") is 80. Singer-songwriter Paul Williams is 73. Singer Bill Medley is 73. Singer Sylvia Tyson (Ian and Sylvia) is 73. Singer Freda Payne is 71. Golfer Jane Blalock is 68. Singer David Bromberg is 68. Actor Randolph Mantooth is 68. Rock singer-musician Lol Creme (10cc) is 66. Former NFL running back Larry Brown is 66. Actor Jeremy Irons is 65. Actress Twiggy Lawson is 64. TV personality Joan Lunden is 63. Singer-producer Daniel Lanois is 62. Actor Scott Colomby is 61. Musician-producer Nile Rodgers is 61. College Football Hall of Famer and former NFL player Reggie Williams is 59. Singer-actor Rex Smith is 58. Actor Kevin Hooks is 55. Actress Carolyn McCormick is 54. Country singer Jeff Bates is 50. Country singer Trisha Yearwood is 49. Actress-comedian Cheri Oteri is 48. News anchor Soledad O'Brien is 47. Rhythm-and-blues singer Espraronza Griffin (Society of Soul) is 44. Celebrity chef Michael Symon is 44. Actress Sanaa Lathan (suh-NAH' LAY'-thun) is 42. Actress Stephanie J. Block is 41. Rock singer A. Jay Popoff (Lit) is 40. Comedian and TV talk show host Jimmy Fallon is 39. TV personality Carter Oosterhouse is 37. Actress-TV host Alison Sweeney is 37. Rock musician Ryan Dusick is 36. Folk-rock singers-musicians Sara and Tegan (TEE'-gan) Quin are 33. Actor Columbus Short is 31. Rapper Eamon is 30. Christian rock musician JD Frazier is 30. Actor Kevin Zegers is 29. Actress Danielle Panabaker is 26.

Thought for Today: "Start every day off with a smile and get it over with." — W.C. Fields, American comedian (1880-1946).

It's not the morphine, it's the size of the cage: Rat Park experiment upturns conventional wisdom about addiction

It's not the morphine, it's the size of the cage: Rat Park experiment upturns conventional wisdom about addiction

http://bit.ly/1aUzVKW

The government (especially DARE) lied to us. Just like they did with cannabis. Does anyone remember the study that "proved" that cannabis kills brain cells? The one where they suffocated monkeys with smoke over and over again, then dissected their brains and pointed to the suffocation damage and said that cannabis kills brain cells, even though it actually heals the brain.

We really can't trust our government to study anything (CFIDS, cannabis, opioids, the majority of drugs approved by the FDA in the past decade).

Steve
IntractablePainKills@gmail.com

RSO/cannabis & other cancer cures

Cancer is worth more than our lives. Cannabis both prevents and treats cancer, including the most deadly childhood cancer, DIPA/DIPG

Essex tea is another potential treatment that got shut down.

Severe Flare

I want to amputate my legs right now. The pain is unbelievable. Nothing is helping. I'd give anything for relief. I'd give wanting to have an unravel pump, Actiq/OTFC/Fentora/Onsolis/Subsys/Lazanda/Abstral, and/or methadone (in addition to the Duragesic).

It is despicable that we must suffer when there are drugs and treatments that could help us, especially when we can pay for them.

It's hard to believe that we went from opioids being OTC (over the counter), to CII, and now to practically unattainable.

Steve

OT- Today in History

I know that this board it's supposed to be about pain, but I'm in too much pain to give the high quality posts that I'd prefer and we can all use some distraction.

Today is Friday, Sept. 13, the 256th day of 2013. There are 109 days left in the year. The Jewish Day of Atonement, Yom Kippur, begins at sunset.

Today's Highlight in History:

On September 13, 1788, the Congress of the Confederation authorized the first national election, and declared New York City the temporary national capital.

On this date:

In 1759, during the final French and Indian War, the British defeated the French on the Plains of Abraham overlooking Quebec City.

In 1803, Commodore John Barry, considered by many the father of the American Navy, died in Philadelphia.

In 1912, a state funeral was held in Japan for Emperor Meiji.

In 1948, Republican Margaret Chase Smith of Maine was elected to the U.S. Senate; she became the first woman to serve in both houses of Congress.

In 1959, Elvis Presley first met his future wife, 14-year-old Priscilla Beaulieu, while stationed in West Germany with the U.S. Army. (They married in 1967, but divorced in 1973.)

In 1962, Mississippi Gov. Ross Barnett rejected the U.S. Supreme Court's order for the University of Mississippi to admit James Meredith, a black student, declaring in a televised address, "We will not drink from the cup of genocide."

In 1970, the first New York City Marathon was held; winner Gary Muhrcke finished the 26.2-mile run, which took place entirely inside Central Park, in 2:31:38.

In 1971, a four-day inmates' rebellion at the Attica Correctional Facility in western New York ended as police and guards stormed the prison; the ordeal and final assault claimed the lives of 32 inmates and 11 employees.

In 1989, Fay Vincent was elected commissioner of Major League Baseball, succeeding the late A. Bartlett Giamatti (juh-MAH'-tee).

In 1993, at the White House, Israeli Prime Minister Yitzhak Rabin and PLO chairman Yasser Arafat shook hands after signing an accord granting limited Palestinian autonomy. "Late Night with Conan O'Brien" premiered on NBC.

In 1996, rapper Tupac Shakur died at a Las Vegas hospital six days after he was wounded in a drive-by shooting; he was 25.

In 1998, former Alabama Gov. George C. Wallace died in Montgomery at age 79.

Ten years ago: Angry mourners swarmed Fallujah (fuh-LOO'-juh), Iraq, a day after eight Iraqi police were killed in a friendly fire incident involving U.S. troops; the U.S. military apologized for the deaths. The California Democratic Party voted to endorse Lt. Gov. Cruz Bustamante (boost-ah-MAHN'-tay) while continuing to support Gov. Gray Davis in the October 7 recall election. Indiana Gov. Frank O'Bannon died at age 73. In Las Vegas, Sugar Shane Mosley beat Oscar De La Hoya, winning a close but unanimous decision to take the WBC and WBA 154-pound titles.

Five years ago: Rescue crews ventured out to pluck people from their homes in an all-out search for thousands of Texans who had stubbornly stayed behind overnight to face Hurricane Ike. After wild conjecture over who would play Alaska Gov. Sarah Palin on "Saturday Night Live," writer-performer Tina Fey returned to her old show for an opening sketch featuring her and Fey's former "Weekend Update" co-host Amy Poehler as Sen. Hillary Clinton.

One year ago: Chanting "death to America," hundreds of protesters angered by an anti-Islam film stormed the U.S. Embassy compound in Yemen's capital and burned the American flag. New York City's Board of Health passed a ban on the sale of big sodas and other sugary drinks, limiting the size sold at restaurants, concession stands and other eateries to 16 ounces.

Today's Birthdays: Actress Barbara Bain is 82. Actress Eileen Fulton ("As the World Turns") is 80. TV producer Fred Silverman is 76. Former White House spokesman Larry Speakes is 74. Actor Richard Kiel is 74. Rock singer David Clayton-Thomas (Blood, Sweat & Tears) is 72. Actress Jacqueline Bisset is 69. Singer Peter Cetera is 69. Actress Christine Estabrook is 63. Actress Jean Smart is 62. Singer Randy Jones (The Village People) is 61. Record producer Don Was is 61. Actor Isiah Whitlock Jr. is 59. Actress-comedian Geri Jewell is 57. Country singer Bobbie Cryner is 52. Rock singer-musician Dave Mustaine (Megadeth) is 52. Radio-TV personality Tavis Smiley is 49. Rock musician Zak Starkey is 48. Actor Louis Mandylor is 47. Olympic gold medal runner Michael Johnson is 46. Rock musician Steve Perkins is 46. Actor Roger Howarth is 45. Actor Dominic Fumusa is 44. Actress Louise Lombard is 43. Tennis player Goran Ivanisevic (ee-van-EE'-seh-vihch) is 42. Country singer Aaron Benward (Blue County) is 40. Country musician Joe Don Rooney (Rascal Flatts) is 38. Actor Scott Vickaryous is 38. Singer Fiona Apple is 36. Contemporary Christian musician Hector Cervantes (Casting Crowns) is 33. MLB pitcher Daisuke Matsuzaka is 33. Actor Ben Savage is 33. Rock singer Niall Horan (One Direction) is 20. Actor Mitch Holleman ("Reba") is 18.

Thought for Today: "Better to be without logic than without feeling." — Charlotte Bronte (BRAWN'-tee), English author (1816-1855).

Yesterday in History

Yesterday was Thursday, Sept. 12, the 255th day of 2013. There were 110 days left in the year.

Yesterday's Highlight in History:

On September 12, 1943, during World War II, German paratroopers took Benito Mussolini from the hotel where he was being held by the Italian government.

On this date:

In 1846, Elizabeth Barrett secretly married Robert Browning at St. Marylebone Church in London.

In 1888, entertainer Maurice Chevalier was born in Paris.

In 1913, Olympic legend Jesse Owens was born in Oakville, Ala.

In 1938, Adolf Hitler demanded the right of self-determination for the Sudeten (soo-DAYT'-un) Germans in Czechoslovakia.

In 1942, during World War II, a German U-boat off West Africa torpedoed the RMS Laconia, which was carrying Italian prisoners of war, British soldiers and civilians.

In 1953, Massachusetts Sen. John F. Kennedy married Jacqueline Lee Bouvier (boo-vee-AY') in Newport, R.I.

In 1960, Democratic presidential candidate John F. Kennedy addressed questions about his Roman Catholic faith, telling a Southern Baptist group, "I do not speak for my church on public matters, and the church does not speak for me."

In 1962, in a speech at Rice University in Houston, President John F. Kennedy reaffirmed his support for the manned space program, declaring: "We choose to go to the moon. We choose to go to the moon in this decade and do the other things, not because they are easy, but because they are hard."

In 1963, "The Spy Who Came in from the Cold," a novel by John le Carre, went on sale in Britain.

In 1977, South African black student leader Steve Biko (BEE'-koh) died while in police custody, triggering an international outcry.

In 1986, Joseph Cicippio (sih-SIHP'-ee-oh), the acting comptroller at the American University in Beirut, was kidnapped (he was released in December 1991).

In 1992, the space shuttle Endeavour blasted off, carrying with it Mark Lee and Jan Davis, the first married couple in space; Mae Jemison, the first black woman in space; and Mamoru Mohri, the first Japanese national to fly on a U.S. spaceship.

Ten years ago: In the Iraqi city of Fallujah, U.S. forces mistakenly opened fire on vehicles carrying police, killing eight of them. The U.N. Security Council ended 11 years of sanctions against Libya. Typhoon Maemi (may-mee) slammed into South Korea, killing at least 117 people. Music legend Johnny Cash died in Nashville, Tenn., at age 71.

Five years ago: A Metrolink commuter train struck a freight train head-on in Los Angeles, killing 25 people. (Federal investigators said the Metrolink engineer, Robert Sanchez, who was among those who died, had been text-messaging on his cell phone and ran a red light shortly before the crash.) Hurricane Ike began battering the Texas coast. Grand Ole Opry star Charlie Walker died in Hendersonville, Tenn. at age 81.

One year ago: The U.S. dispatched an elite group of Marines to Tripoli. Libya, after the mob attack that killed the U.S. ambassador and three other Americans. President Barack Obama strongly condemned the violence, and vowed to bring the killers to justice; Republican challenger Mitt Romney accused the administration of showing weakness in the face of tumultuous events in the Middle East.

Today's Birthdays: Actor Dickie Moore ("Our Gang") is 88. Actor Freddie Jones is 86. Actor Ian Holm is 82. Actress Linda Gray is 73. Singer Maria Muldaur is 71. Actor Joe Pantoliano is 62. Singer-musician Gerry Beckley (America) is 61. Original MTV VJ Nina Blackwood is 61. Rock musician Neil Peart (Rush) is 61. Actor Peter Scolari is 58. Kansas Gov. Sam Brownback is 57. Actress Rachel Ward is 56. Actress Amy Yasbeck is 51. Rock musician Norwood Fisher (Fishbone) is 48. Actor Darren E. Burrows is 47. Rock singer-musician Ben Folds (Ben Folds Five) is 47. Actor-comedian Louis (loo-ee) C.K. is 46. Rock musician Larry LaLonde (Primus) is 45. Actor Josh Hopkins is 43. Actor Paul Walker is 40. Country singer Jennifer Nettles (Sugarland) is 39. Actor Ben McKenzie is 35. Singer Ruben Studdard is 35. Basketball player Yao Ming is 33. Singer-actress Jennifer Hudson is 32. Actress Emmy Rossum is 27. Actor Colin Ford is 17.

Thought for Today: "Find the good. It's all around you. Find it, showcase it and you'll start believing it." — Jesse Owens (1913-1980).

Update: Neurosurgeon

WARNING: NEGATIVE POST

After an hour waiting, I spent another 20 minutes listening to a neurosurgeon tell me that the tumor that's doubled in size over the past year could not possibly be causing my
Back pain
Neck pain
Leg pain
Headaches
Dizziness
Nausea
Vomiting
Wasting
Difficult swallowing
Vision problems
Loss of dexterity
...and every other symptom that every other doctor has attributed to the tumor.

He ignored all of my concerns and when I tried to explain how defeated I feel, he indirectly threatened me with involuntary committal.

Not wanting to fight cancer is not the same as suicidality.

I explained that I didn't want another fifty years of constant agonizing pain and all he had to say was that the tumor is likely an incidental finding. Even if the tumor is not the cause of the pain, the pain still plagues my life.

Have I contemplated suicide, absolutely! Would I go through with it and put my family through that, HELL NO! We have the right to abstain from treatment and wanting to die without a fight and that does not make us suicidal. Radiation and chemotherapy are pain inducing poisons.

Since chemotherapy kills more people than it saves, what's so crazy about wanting to die gracefully?

If they aren't going to treat the pain, why should I fight the cancer? I'll take my handful of semi-decent years, thank you. I have no interest in years of fighting a cancer that will eventually kill me. Even if they eliminate the cancer, the treatments will cause memory and other neurological deficits, unrelenting pain, CIN (chemotherapy induced neuropathic) and only God knows what else.

I'll stick with my nontoxic alternative treatments that allow mt daughter to have a father, not an unrecognizable chemotherapeutic husk.

How can they expect me to fight when my pain is so severely undertreated?

Steve, age 23
DIPG (inoperable brainstem glioma (cancer))
Intractable Pain

On the lighter side

Patriot Day

I want to take a moment to thank all of those rescue workers who selflessly risked their lives to save their fellow Americans. I especially want to thank those rescue workers who fled to NYC to save lives and where left without medical care.

While my blog is generally dedicated to chronic pain patients as a whole, but today I'd like to remind everyone that many of our heroes (from 9/11, the War in Afghanistan, and the War in Iraq) are needlessly suffering because the VA is instituting no opioids policies at many of their hospitals and even the few who can afford private practice physicians are finding that doctors who prescribe opioids are harder and harder find.

My best friend is an ex-cop, "ex" Marine who is without pain management after an IED took his eyes and left him with shrapnel around his spine. Without notice, his doctors dropped him and left him without pain relief, which has resulted in countless emergency room visits, intensive care admissions, and hospital visits. He's had organs shut down from untreated IP. And I know he's not the only one. If we can't give our heroes relief, what chance do the rest of us stand?

Steve

OT- Today in History

Today is Tuesday, Sept. 10, the 253rd day of 2013. There are 112 days left in the year.

Today's Highlight in History:

On September 10, 1813, an American naval force commanded by Oliver H. Perry defeated the British in the Battle of Lake Erie during the War of 1812. (Afterward, Perry sent out the message, "We have met the enemy and they are ours.")

On this date:

In 1608, John Smith was elected president of the Jamestown colony council in Virginia.

In 1846, Elias Howe received a patent for his sewing machine.

In 1912, the jungle character Tarzan made his debut as "Tarzan of the Apes" by Edgar Rice Burroughs was first published in The All-Story magazine.

In 1919, New York City welcomed home Gen. John J. Pershing and 25,000 soldiers who'd served in the U.S. First Division during World War I.

In 1939, Canada declared war on Germany.

In 1945, Vidkun Quisling was sentenced to death in Norway for collaborating with the Nazis (he was executed by firing squad in October 1945).

In 1962, the U.S. Supreme Court ordered the University of Mississippi to admit James Meredith, a black student.

In 1963, twenty black students entered Alabama public schools following a standoff between federal authorities and Gov. George C. Wallace.

In 1979, four Puerto Rican nationalists imprisoned for a 1954 attack on the U.S. House of Representatives and a 1950 attempt on the life of President Harry S. Truman were freed from prison after being granted clemency by President Jimmy Carter.

In 1983, John Vorster (FAWS'-tur), prime minister of white-ruled South Africa from 1966 to 1978, died in Cape Town at age 67.

In 1987, Pope John Paul II arrived in Miami, where he was welcomed by President and Mrs. Reagan as he began a 10-day tour of the United States.

In 1993, "The X-Files" premiered on Fox Television.

Ten years ago: Swedish Foreign Minister Anna Lindh, 46, was stabbed in a Stockholm department store; she died the next day. (Mijailo Mijailovic (mee-EYE'-loh mee-EYE'-luh-vich) was later convicted of murdering Lindh and was sentenced to life in prison.) The first video image of Osama bin Laden in nearly two years was broadcast on Al-Jazeera TV. Israel bombed the home of a Hamas leader, killing his eldest son and a bodyguard in retaliation for two suicide bombings.

Five years ago: The world's largest particle collider passed its first major tests by firing two beams of protons in opposite directions around a 17-mile (27-kilometer) ring under the Franco-Swiss border. Frank Mundus, the legendary shark fisherman said to have inspired the character of Quint in "Jaws," died in Honolulu at age 82.

One year ago: An airstrike killed al-Qaida's No. 2 leader in Yemen along with six others traveling with him in a breakthrough for U.S.-backed efforts to cripple the terror network's operations in the impoverished Arab nation. Chicago teachers walked off the job in what would become a seven-day strike, idling nearly 400,000 students in one of the nation's third-largest school district. Andy Murray became the first British man since 1936 to capture a Grand Slam title, beating defending champion Novak Djokovic, 7-6, 7-5, 2-6, 3-6, 6-2 to win the U.S. Open in five grueling sets.

Today's Birthdays: World Golf Hall of Famer Arnold Palmer is 84. Actor Philip Baker Hall is 82. Actor Greg Mullavey is 80. Country singer Tommy Overstreet is 76. Jazz vibraphonist Roy Ayers is 73. Singer Danny Hutton (Three Dog Night) is 71. Singer Jose Feliciano is 68. Actor Tom Ligon is 68. Actress Judy Geeson is 65. Former Canadian first lady Margaret Trudeau is 65. Political commentator Bill O'Reilly is 64. Rock musician Joe Perry (Aerosmith) is 63. Actress Amy Irving is 60. Country singer Rosie Flores is 57. Actress Kate Burton is 56. Movie director Chris Columbus is 55. Actor Colin Firth is 53. Rock singer-musician David Lowery (Cracker) is 53. Actor Sean O'Bryan is 50. Actor Raymond Cruz is 49. Retired MLB All-Star pitcher Randy Johnson is 50. Rock musician Robin Goodridge (Bush) is 48. Rock musician Stevie D. (Buckcherry) is 47. Rock singer-musician Miles Zuniga (Fastball) is 47. Actress Nina Repeta (NY'-nuh ruh-PEHT'-ah) is 46. Rapper Big Daddy Kane is 45. Movie director Guy Ritchie is 45. Contemporary Christian singer Sara Groves is 41. Actor Ryan Phillippe (FIHL'-ih-pee) is 39. Actor Kyle Bornheimer is 38. Rock musician Mikey Way (My Chemical Romance) is 33. Olympic bronze medal figure skater Timothy Goebel is 33. Rock musician Matthew Followill (Kings of Leon) is 29. Singer Ashley Monroe (Pistol Annies) is 27. Singer Sanjaya Malakar ("American Idol") is 24. Actor Chandler Massie is 23. Actress Hannah Hodson is 22.

Thought for Today: "History is the great dust-heap ... a pageant and not a philosophy." — Augustine Birrell, English author and statesman (1850-1933).

Update

As you might have noticed, I've given up on Adsense approving my application, so I've been piecing together some affiliate programs to create some revenue. I'd really like to expand this beyond the basic, everyday CP/IP blog and that takes capital, capital that I don't have.

If anyone finds the monetization intrusive or bothersome, please feel encouraged to send me feedback. This site is about helping other CP/IP suffers get through one day at a time, not money and while I believe that some revenue will allow me to help more people, I do not want the monetization to hinder my primary goal.

Today is another one of those days where the pain feels never-ending and I'm just doing my best to get through.

Please check back often and don't forget send feedback.

I'm very interested in articles that benefit CP/IP patients, family, friends, doctors, loved ones, and caregivers.

If anyone wants to share their story, including treatments tried, failed, and current, I'd love to give you your own page on my blog. Please consider including a picture of you, or a picture that represents you.

Steve
IntractablePainKills@gmail.com
http://bit.ly/IPkills

Amazon Prime

If anyone is interested, Amazon is offering Amazon Prime, including the VoD (Video on Demand, streaming) service free for 30 days.  It's a great resource while you're writhing in pain and need a good distraction.

http://amzn.to/1b22tBr

http://www.amazon.com/gp/video/primesignup?tag=ipki-20

If you're like me and forget to cancel free trials, you'll love this, Amazon allows you to (after signing up) go into settings, then Prime settings and tell it not to automatically renew. I highly recommend it. After all, you can always change it later or restart Prime later.

By using this link, Amazon will donate $2 to my blog (you have to sign up for the 30 day free trial of Prime, but you don't have to spend a penny), which will go towards improvements and everything remaining will be donated to various chronic pain charities.

Steve
IntractablePainKills@gmail.com
http://bit.ly/IPkills

Anytime you plan on making a purchase with Amazon, please use the link below.
http://amzn.to/13I04Hs

Cannabis

Cannabis is a miracle drug. It cures cancer, it reverses damage from and/or treats:
Cancer
Chemotherapy
Radiation
Multiple sclerosis
Alzheimer disease
Dementia
Pain
Neuropathy
ADHD
Asperger syndrome

You get the idea right?

Unfortunately, far too many pain patients must make the choice between cannabis and opioids. Even in states where medicinal and recreational cannabis is legal, patients are dismissed for having a positive urinalysis result for cannabis.

THC and CBD actually fight cancer cells. In DIPA/DIPG, the most deadly childhood cancer, they cause tumor cells to commit suicide and eat themselves. They can stretch out a six month prognosis into eight or more healthy years and, in rare cases, cannabis can be curative.

The federal government would have is believe that Marinol/dronabinol is a good alternative to herbal cannabis, but that's a bald-faced lie. Marinol is good for having a plausible reason for positioned urinalysis and to get way too high. Marinol only contains THC, no CBD and none of the other useful cannabinoids.

Even generic dronabinol is extremely expensive because it is synthetic THC created in a lab. The THC is suspended in deranged oil and encapsulated in gelatin. The oral route of absorption makes it extremely unpredictable.

Hopefully, Sativex will be approved soon because it actually contains two strains of cannabis, giving a roughly equal ratio of THC and CBD.

If our government approved Marinol (CIII), why are cannabis sativa and cannabis indica still CI?

Controlled Substance Summary
CI- high potential for abuse, no medical use, can't be prescribed (LSD, cannabis
CII- high potential for abuse (cocaine, codeine, methadone, morphine, fentanyl/Sublimaze/Duragesic/Actiq/OTFC/Fentora/Onsolis/Subsys/Lazanda/Abstral, alfentanil/Alfenta/Rapifen, remifentanil, sufentanil/Sufenta, oxymorphone/Opana, hydrocodone/Norco/Vicodin, hydromorphone/Dilaudid/Exalgo, oxycodone/OxyContin/OxyIR/Roxicodone, methamphetamine, amphetamines/Adderall, methylphenidate/Ritalin/Concerta)
CIII-moderate potential for abuse (Vicodin, Marinol/dronabinol)
CIV- low potential for abuse (alprazolam/Xanax, lorazepam/Ativan, diazepam/Valium
CV- codeine cough syrup, pseudoephedrine/Sudafed, Lyrica/pregabalin

Bad Days

I've been having bad days for almost a month straight. Opioid pain medications are great, when they're dosed properly, but when the DEA has doctors too afraid to prescribe adequate doses, patients suffer.

As I continue to suffer through a flare without the Actiq/OTFC (or Fentora, Onsolis, Subsys, Lazanda, or Abstral), I can comprehend why some people resort to street drugs. I, myself, am allergic to morphine, which is the major active metabolite of diacetylmorphine. I'm lucky in a sense because my allergy to morphine protects me from any temptation that might arise on days like this when my pain is unbearable.

No one should get their medication from the streets, whether it be heroin/diacetylmorphine/diamorphine, morphine, oxymorphone/Opana, oxycodone/OxyContin/OxyIR/Roxicodone, hydromorphone/Dilaudid/Exalgo, hydrocodone/Norco/Vicodin, codeine, methadone, fentanyl/Sublimaze/Duragesuc, sufentanil/Sufenta, alfentanil/Alfenta/Rapifen, or any other opioid. Medications should be taken EXACTLY as prescribed by your doctor.

Now that my public service announcement is complete, I'm going to take my full dose of lorazepam and tizanidine and pray for some asleep.

Some non-opioid pain relief options (depending on your pain type) include:
* Ice/cold packs
* Heating pads
* benzodiazepines (if prescribed)
* muscle relaxers
* Ibuprofen/Advil/Motrin
* hot shower or bath
* massage
* meditation
* distraction (TV, movies, etcetera)
* comedy (endorphins)
* sex/orgasm (endorphins)

-Steve

Remember that you can share my blog on chronic, intractable pain at
http://bit.ly/IPkills

I'm always open to comments and suggestions:
IntractablePainKills@gmail.com

Tolerance, physical dependence and addiction: Definitions, clinical relevance and misconceptions

Tolerance, physical dependence and addiction:
Definitions, clinical relevance and misconceptions

Health care professionals, patients and families have exaggerated concerns about opioids and their potential side effects, in particular tolerance, physical dependence and addiction. Therefore it is critically important to understand the meaning of these terms and their clinical relevance to the management of cancer pain.

TOLERANCE

Definition:
Tolerance is a physiological state characterized by a decrease in the effects of a drug (e.g., analgesia, nausea or sedation) with chronic administration.

Clinical relevance:
It is important to distinguish between tolerance to analgesia and tolerance to side effects.

(1) Tolerance to analgesia.
Patients with unchanging pain can have a consistent level of pain relief from the same dose of opioids over time. The need for higher doses of opioids is typically due to worsening pain and disease progression, rather than tolerance. If analgesic tolerance does develop, increase the dose until side effects are not tolerated.

(2) Tolerance to opioid side effects.
Tolerance usually develops to many of the side effects of opioids (sedation, nausea, itch) in a few days. Tolerance almost never develops to constipation. Constipation should always be anticipated and treated. If a patient does not tolerate the side effects of one opioid, another opioid should be tried.

Misconceptions:
To some, the need to increase the dose in response to the patient's report of pain is misinterpreted as a sign that tolerance may be developing. Unfortunately, this sometimes leads the physician to reduce the dose in a mistaken attempt to avoid or delay the development of tolerance. The appropriate response is to reassess the pain and increase the dose as indicated to relieve pain.

Sometimes, to prevent the development of analgesic tolerance, opioids are administered at intervals which are too far apart to maintain continuous pain relief. This practice is inappropriate because it subjects patients to needless cycles of pain and pain relief.

Often, health care professionals and patients are concerned about using opioids from the 3rd step of the WHO ladder, such as morphine, because of the mistaken belief that the medication will lose its analgesic effect; they want to save it until the pain is really severe. This concern about analgesic tolerance is unfounded and can lead to inadequate pain management.

Some health care workers and patients believe that using morphine for pain relief will suppress respiration and possibly cause death. In fact, clinically significant respiratory depression and sedation are very rare in cancer patients. This is because tolerance to the sedative effects of morphine develop rapidly, and because pain reverses morphine's depressant effects.

PHYSICAL DEPENDENCE

Definition:
Physical dependence is the physiological adaptation of the body to the presence of an opioid. It is defined by the development of withdrawal symptoms when opioids are discontinued, when the dose is reduced abruptly or when an antagonist (e.g., naloxone) or an agonist-antagonist (e.g., pentazocine) is administered.

Clinical relevance
Physical dependence is a normal and expected response to continuous opioid therapy. Physical dependence may occur within a few days of dosing with opioids, although it varies among patients. Physical dependence (indicated by withdrawal symptoms) does not mean that the patient is addicted.

Health care workers should advise patients to take their pain medication as directed, and that withdrawal symptoms may occur if they reduce their dose or stop taking the medication. Symptoms of withdrawal may include agitation, insomnia, diarrhea, sweating, and rapid heart beat. If the source of pain is successfully treated or removed, physical dependence is easily treated by gradually decreasing the opioid dose, e.g., reducing the daily dose by 10 to 25 percent every 2 days. When a daily dose of 10-15 mg of parenteral morphine (or its equivalent) is reached, maintain that dose for 2 days, then discontinue.

The development of physical dependence should not limit analgesic therapy. Antagonists and agonist-antagonists in the patient who is physically dependent should be strictly avoided because their use will neutralize the analgesic effect and cause a withdrawal syndrome.

Misconceptions:
Physical dependence is frequently equated mistakenly with addiction. It is incorrect to use the term 'physical dependence' (a physiological state) to describe addiction (a dysfunctional psychological and behavioral syndrome).

Patients who express concern about physical dependence should be given correct information and reassured. Example: "Do not to stop taking your medication abruptly or you will have symptoms of withdrawal. If you no longer need opioids for pain relief (for example after a course of radiotherapy), your physician can gradually decrease your dose over several days."

ADDICTION

Definition:
While tolerance and physical dependence are physical changes in the body, addiction is defined by aberrant changes in behavior. Addiction is compulsive use of drugs for nonmedical reasons; it is characterized by a craving for mood altering drug effects, not pain relief. Addiction means dysfunctional behavior, in sharp contrast to the improved function and quality of life that result from pain relief. Aberrant behaviors which indicate addiction may include: denial of drug use; lying; forgery of prescriptions; theft of drugs from other patients or family members; selling and buying drugs on the street; using prescribed drugs to get "high."

Clinical relevance:
Addiction is extremely rare in cancer patients who use opioids for pain (see abstracts). Biochemical, social and psychological factors are more important in the development of addiction. Opioids should not be withheld for fear that a patient will become addicted. If a pain patient requests a strong analgesic, it is likely that the patient has inadequate pain control.

Misconceptions:
People who fear addiction, yet desire pain relief sometimes think "So what if I get addicted, I am going to die anyway." Such thinking creates an unnecessary trade-off between addiction and pain relief; in fact, addiction is rare and should not be a worry when opioids are used appropriately to relieve pain.

Patients and family members who express concern about addiction should be given correct information and reassured. Example: "Sometimes patients taking opioids for pain relief are concerned about addiction. However, you are taking opioids for pain relief whereas addicts take drugs to get high. You are not an addict if you take pain medications to relieve your pain."

PSEUDO-ADDICTION

Definition
Pseudo-addiction describes what happens when healthcare workers perceive as addictive behavior a pain patient's requests for more or stronger pain medications. In fact, the patient's behavior may be a response to inadequate pain management. Pseudo-addictive behavior is pain-relief seeking behavior. Pseudo-addiction is an iatrogenic phenomenon, e.g. it is when problems result from the treatment efforts of health professionals.

Clinical relevance
Pseudo-addictive behavior may occur when analgesics are prescribed in inadequate doses or at dosing intervals that are longer than the duration of action of the drug. Pseudo-addictive behaviors are more likely to occur in patient care settings where health care professionals are inadequately trained in pain management and the rational use of opioids. The appropriate clinical response to pseudo-addictive behaviors is to reassess the patient's pain and to treat the pain adequately.

SAMHSA Report: Good and Bad News on Drug Use in America

My opinion on SAMHSA Report: Good and Bad News on Drug Use in America

Heroin (diacetylmorphine/diamorphine) use likely rose in all age groups except children because doctors aren't treating pain anymore.

If you have CIPN (Chemotherapy-induced Peripheral Neuropathy) or other IP (intractable pain), and cannabis doesn't help you and medications like Actiq, Duragesic, oxycodone/OxyContin/OxyIR/Roxicodone, oxymorphone/Opana, hydromorphone/Dilaudid/Exalgo, and morphine are no longer available, what choice do you have? For many, it's diamorphine or die. Untreated IP kills.

Thanks to the lack of access, many pain patients have had to make such troublesome decisions.

Even the increase in cannabis use can surely be linked to expanded medicinal use as more states come to their senses and legalize and also more pain patients are switching to cannabis as opioid medications are vilified by the media and made next to impossible to acquire.

Luckily, binge drinking and DUI have both decreased, although DUI has only decreased mildly.

Steve
Check out my new blog at
http://bit.ly/IPkills
Send feedback to
IntractablePainKills@gmail.com

SAMHSA Report: Good and Bad News on Drug Use in America
http://bit.ly/18MG1Gm

Deborah Brauser

Sep 05, 2013

The newly released 2012 National Survey on Drug Use and Health (NSDUH) report from the Substance Abuse and Mental Health Services Administration (SAMHSA) contains both good and bad news this year, especially with regard to adolescents and teens.

Rates of binge drinking and heavy drinking in the previous month continued to decrease in those between the ages of 12 and 17 years, although the rates of driving under the influence of alcohol by teens in 2012 were comparable to the rates found in 2011 (11.2% vs 11.1%, respectively). The rates were significantly lower, though, than the high of 14.2% in 2002.

In addition, use of tobacco products continued to drop for this age group, as did the rates of overall substance dependence or abuse.

Although the rate of marijuana use rose in almost every age group, and was up from 5.8% of all Americans in 2007 to 7.3% in 2012, use of this substance dropped slightly for those aged 12 to 17 years.

However, use of heroin by all individuals older than 12 years rose dramatically during the past 5 years, from 373,000 users in 2007 to 669,000 users in 2012.

"These findings show that while we have made progress in preventing some aspects of substance abuse, we must redouble our efforts to reduce and eliminate all forms of it throughout our nation," said SAMSHA administrator Pamela S. Hyde in a release.

"Reducing the impact of drug use and its consequences on our nation requires a robust public health response coupled with smart-on-crime strategies that protect public safety," added Gil Kerlikowske, director of the White House Office of National Drug Control Policy (ONDCP), in the same release

The National Survey was released at a press conference on September 4 in observance of the 24th annual National Recovery Month.

"Making a Difference"

"The annual survey is the largest of its kind and is the government's primary vehicle for determining how many persons are using illegal drugs, alcohol, and tobacco, as well as how many are misusing pharmaceuticals," reports SAMHSA.

The NSDUH had approximately 70,000 participants throughout the United States.

It showed similar, although slightly increased, rates between 2012 and 2011 of past-month nonmedical use of prescription medications by individuals between the ages of 18 and 25 years (5.3% vs 5.0%, respectively). Both rates were significantly lower than the 6.4% found in 2009.

"For the first time in a decade, we are seeing real reductions in the abuse of prescription drugs in America, proving that a more comprehensive response to our drug problem can make a real difference in making our nation healthier and safer," said Kerlikowske.

Marijuana was the most commonly used illicit drug in 2012, just as it was in 2011, with 18.9 million past-month users. Still, the rate of use dropped from 7.9% in 2011 to 7.2% in 2012 for those between the ages of 12 and 17 years.

Although the overall use of illicit drugs by persons older than 11 years "remained stable" between 2011 and 2012, the NSDUH reports that 23.9 million Americans used illegal substances last year.

More Needs to be Done

The report was a little sunnier when it came to tobacco use in the 12- to 17-year-olds. The rate of use was 8.6% in 2012 compared with 10% in 2011, and was significantly lower than the 15.2% rate found in 2002.

In addition, this age group showed a drop in past-month overall use of illicit drugs, with a 9.5% rate in 2012 and a 10.1% rate in 2011, as well as small drops in the specific use of hallucinogens and inhalants.

Not so rosy is the report that "many American needing treatment for a substance use disorder are still not receiving specialty treatment." In other words, 2.5 million Americans older than 11 years received specialized treatment in 2012 ― but more than 23 million needed it.

The most common reason given for not seeking treatment was having no health coverage because of cost, followed by not being ready to stop using substances and current health plan not covering treatment and/or costs.

"These statistics represent real people, families, and communities dealing with devastating consequences of abuse and addiction. We must strive to prevent further abuse and provide the hope of treatment and recovery to all people needing help," said Hyde.

"Expanding prevention, treatment, and support…will be our guide as we work to address emerging challenges, including the recent uptick in heroin use shown in this survey," added Kerlikowske.

The complete survey findings are located on the SAMHSA Web site .

Happy Birthday

I'd like to take a moment to wish my good friend, Custis, a happy 33rd birthday.

He's dealing with a lot, pain wise right now, so he can definitely use some strength and well wishes.

Steve
IntractablePainKills@gmail.com
http:/bit.ly/IPkills

Desperate for sleep

So, it's 9:20am and I'm finally getting sleepy thanks to my giving in to my body and taking lorazepam, oxymorphone, tizanidine, and Rozerem.

Sweet dreams to all.

Remember, I'm always looking for post ideas, suggestions, and/or questions.

Steve
IntractablePainKills@gmail.com

Sleep, or lack thereof

As day five of my pain flare begins and, at 6:40am, I still haven't slept I am left with a choice. I can take a little extra medication and finally get some sleep or sitting up and suffering.

It's times like this when I am reminded how lucky I was two years ago when I could properly treat 2-4 of my up to six daily flares. Of course, now that flares last days, there technically are fewer of them.

I'm so tempted to treat this flare, but I must pick and choose because I'm now on less than half of what I used to take.

For now, I'll suffer in the dark and hope that the Rozerem, tizanidine, and lorazepam kick in soon and give me a few hours of relief.



Steve
IntractablePainKills@gmail.com

Off-topic

Something lighthearted to help get through the day.

Steve
Remember, topic suggestions are always welcome
IntractablePainKills@gmail.com

Opioid Availability Epidemic

My best friend has been suffering for almost a month now because his pain management doctor dumped him without warning or cause. He's a veteran, blind, and a cancer patient (relapse of leukemia) (If he can't get help, what chance do the rest of us stand?). He's afraid that he isn't going to make it to his 33rd birthday this Sunday.

While some may assume that this blatant malpractice is a fluke in the system, it has salt become par for the course. I, myself, am vastly undertreated and lost my pain management doctor January 2012 and have been looking for one since.

The media and the DEA are scarring our doctors away from prescribing these essential medications.

New doctors are warned to avoid pain management and the remaining pain management doctors are instituting injection only policies where they do high profit procedures that cause most of us an increase in pain or they only make recommendations. Recommendations are fine, if you're PCP is willing to follow the medications and prescribe your medication, but few are. This recommendation-only policy also causes significant lags in care, which means an overall lower quality of care.

We walk into doctors offices, hospitals, urgent cares, and emergency rooms to find signs that say that pain medications will not be prescribed. Imagine if you walked into your doctor's office to found a sign saying that they will not prescribe insulin to diabetics or beta blockers to hypertension patients?

I'm all for a solution to the abuse problem, but we need to focus on helping addicts get off drugs with Rehab and methadone while educating kids before they start. Stopping chronic pain patients from getting relief solves nothing.

While Florida is one of the worst states, Texas, Pennsylvania, and dozens of other states have significant issues. There simply aren't enough pain management doctors for every CP/IP patient to see one, especially since most PMs don't prescribe anyway. PCPs and other specialists must start treating chronic pain patients, especially theones on low doses, already stabilized by a pain specialist, or unable to find a pain management doctor.

As Hippocrates said, "cure sometimes, treat often, comfort always". I'm not sure if opioids count as treatment or comfort, maybe both, but letting patients suffer without relief from pain when pain is possible is far from anything in the Hippocratic oath.

Steve
IntractablePainKills@gmail.com

Email Address

My new email address, which is specifically for my blog is up and running. Please feel free to email me for any reason.

Steve
IntractablePainKills@gmail.com

Financial Assistance

Many people discuss their inability to pay for prescriptions or other medical costs.

If you're not working, file for Medicaid, Social Security, CHIP, SNAP (Food Stamps), and every problem available to you.

Never pay cash price for a prescription, free pharmacy discount cards are available everywhere.

The Partnership for Prescription Assistance is a wonderful resource. It links you to discount programs, drug manufacturer assistance programs, and much more.
pparx.org

Look for community clinics and ask your doctors about sliding fee scales. Catholic, county, and teaching hospitals are also great resources.

If you need any specific help, feel free to email me. My email address is
IntractablePainKills@gmail.com

Steve
http://bit.ly/IPkills

Can we afford to ignore the $600 billion a year cost of chronic pain?

How can there be so little research on CP/IP? One percent of research funding? What a joke.

Can we afford to ignore the $600 billion a year cost of chronic pain?

Roger B. Fillingim, PhD, president of the American Pain Society is one advocate speaking out about the problem faced by patients who suffer from chronic pain, defined as being present for 3-months or more. But he;s not the only expert who is taling about finding better ways to help people in pain.

Fillingim says funding for research for better treatments is an unmet need that can no longer be ignored.

Fillingim points out chronic pain costs more than $600 billion a year for treatment and lost work time, yet grants awarded by the National Institutes of Health (NIH) account for just 1 percent of research.

Yet another recent finding suggests when it comes to treating uncomplicated back pain, physicians are willing to order costly imaging tests and prescribe expensive medications to patients.

“The best hope for achieving significant advances in pain prevention and treatment is through directing a more appropriate level of funding for pain research grants that will translate advances in pain science into relief for patients,” Fillingim said at the American Pain Society’s (APS) annual scientific conference.

“Given the funding cutbacks in Washington, it is time to align and shift biomedical research funding priorities more closely with the most serious unmet medical needs in our society, and improving treatment for chronic pain is at the top of the list,” Fillingim adds.

One recently highlighted issue in the news came from Beth Israel Deaconess Medical Center researchers who point out cost associated with mismanagement of back pain treatment by health care providers.

The report that was published in the July 29, 2013 issue of JAMA Internal Medicine, suggested health care dollars could be saved and patient outcomes improved if physicians followed recommended clinical guidelines for back pain treatment that is the 5th leading cause of visits to the doctor.

According to the JAMA study authors, back and neck pain costs Americans approximately $86 billion a year, with another $20 billion added to that for loss of productivity.

Current guidelines suggest using acetaminophen of a non-steroidal anti-inflammatory drug in addition to physical therapy. Most back pain, the authors say, resolves within 3-months, yet physicians often opt for expensive MRIs and narcotics for pain control, according to the report.

Added to the unmet need of treating pain is that most physicians don't have adequate training. A finding published in the Journal of American Osteopathic Association, today reports just four U.S. medical schools offer a required course on pain management.

Raymond Hobbs, M.D., a Henry Ford Internal Medicine physician and senior author of the evidence-based clinical review article agrees effective pain management is a "major health care problem".

Hobbs points out pain can be affected by a variety of factors, including negative emotions. But prescribing narcotics carries a very real risk that patients can overdose. Hobbs has developed a tool to help primary care physicians, outlined in the journal article.

Untreated pain is disabling and costly. While The American Pain Society is calling for more research funding to treat chronic pain, other researchers are finding added costs from physicians not following guidelines currently in place for treating back pain. The end result of both scenarios is that patients suffer and health care costs continue to escalate.

Mark Jensen, PhD, editor of The Journal of Pain says current pain treatments just aren't adequate. "We are beginning to learn the biological processes that drive chronic pain and distinguish it from acute pain, but much more research is required to determine which treatment approaches are most effective in acute and chronic pain," Jensen said in a press release.

The Institute of Medicine (IOM) reports there are more than 1 million Americans suffering from chronic pain. Pain experts are asking that more to be done to help patients suffering from chronic and often debilitating pain.

http://bit.ly/13rc8wy

I Complain

I have a habit of complaining, A LOT, but this blog is my story and although I'm a negative person from time to time, this blog is a story of survival. I've survived abuse, depression, Asperger's, my parents' divorce, the loss of so many loved ones, the loss of my youth to CP/IP, inoperable cancer, and the loss of my dreams.

I was on my way to becoming a doctor (my dream job). That was the hardest thing for me to overcome, but I found another way to help people. I belong to dozens of online support groups and give advice. It's the people from those groups who have been urging me to start a blog.

Steve

OT- Computers

Okay, so my computer crashed and I'm stuck fixing it. It was so much easier before I developed IP.

If anyone is interested, I found a service that gives up to 22 GB of free online backup. You have to use this link to get the full amount of storage. Then, install it on any PC, Mac, iPod, iPhone, iPod Touch, android phone, or android tablet. Personally, I signed up using a different email address for each device and I have five accounts with 20-22GB each. Anything shared between two accounts only counts as half against your storage quota. One 100GB folder can be shared with five 20GB accounts. Just make sure you use a different device and email address for each account.

http://bit.ly/Copy22GB

Base storage 15GB
Referral bonus 5GB
Link to Twitter 2GB
-----------------
Total storage 22GB

Although I listed this under Affiliate, I do not receive anything financial for sign-ups. However, I do receive additional storage, which I plan on using to add multimedia content to IPkills.

Chronic pain major cause of health loss | New Zealand

Chronic pain major cause of health loss | Voxy.co.nz

http://www.voxy.co.nz/health/chronic-pain-major-cause-health-loss/5/164178

Okay, this isn't something new to us, most of us have known this since we became disabled, but it is nice to have someone else acknowledge it.

As prescriptions for pain medication get harder to get, we need to remind our doctors that our pain medication does more than manage our pain, it minimizes disability.

Steve
"The problem with the world is that the intelligent people are full of doubts while the stupid ones are full of confidence."
- Charles Bukowski

Chronic pain major cause of health loss
Monday, 12 August, 2013 - 15:30

Arthritis New Zealand’s Chief Executive Sandra Kirby welcomed Dr Kieran Davis’s reference to the fact that chronic pain accounted for at least 5 percent of the health loss recorded in the recently launched study ‘Health Loss in New Zealand’.

There seems to be little understanding in New Zealand that chronic pain is a burden similar in size to that of anxiety and depression. Both ranked second equal only to heart disease.

The Chronic Pain Health Report, commissioned in 2012, noted that chronic pain affects at least one in eight New Zealanders. In this survey just under half of people with chronic pain had some form of arthritis. "For people with arthritis living with pain is a complex and unavoidable reality, which has a profound effect on the wellbeing of individuals, families and communities," said Ms Kirby.

Arthritis New Zealand notes that services to manage chronic pain are under developed in New Zealand. As the 2012 pain report notes, regional pain services are under resourced and people suffering from chronic pain have to wait for months for this service. "Managing chronic pain requires multi-disciplinary approach that we don't seem to prioritise in health funding."

"The 2006 Health Loss data supports our stance that with an ageing population we can expect the costs of chronic pain to require far more of our health resources. A resourcing challenge we make to health funders," Ms Kirby concluded.

http://bit.ly/CPhealthloss

Tramadol/Ultram, tapentadol/Nucynta,and death

I constantly run into chronic pain patients who are being lied to about tramadol and tapentadol. These are not "strong opioids", they do not carry the safety record of morphine, codeine, oxycodone, oxymorphone, hydrocodone, hydromorphone, methadone, or fentanyl. Unlike those real opioids, tramadol and tapentadol have ceiling doses (upper limits on dosage) and they can kill you when combined with antidepressants.

Ultram/tramadol and Nucynta/tapentadol aren't actually opioids at all. They're SSNRIs with mild opioid activity. On their own, either one can cause Serotonin Syndrome (aka Serotonin Storm), which can be deadly. Wherever I found out someone Is talking tramadol (or tapentadol), I like to advise them to make themselves acquainted with the signs and symptoms of Serotonin Overdose.

SSRIs, SSNRIs, triptans, MAOIs, and several other drugs increase serotonin in the brain. Now, serotonin is a good thing, but too much of this good thing starts to kill brain cells and thats when Serotonin Syndrome begins. All antidepressants (except buproprion/Wellbutrin/Budeprion, which is the only NDRI, norepinephrine dopamine reuptake inhibitor)

Just one serotonin increasing drug can cause serotonin storm, but it's rare, most cases of serotonin syndrome/storm are the result of being on more than one serotonin increasing drug concurrently. The most common combination is tramadol plus an antidepressant. Too many doctors prescribe antidepressants (like Cymbalta/duloxetine, Effexor/venlafaxine, fluoxetine/Prozac/Sarafem, paroxetine/Paxil, and Savella/milnacipran) for pain patients. These pain patients get no relief or inadequate relief, but they continue to take them while their doctors start them on tramadol.

The most dangerous thing, in my opinion, about serotonin syndrome is that it can start at any time, even if you have been on a stable dose for years.

Remember that Serotonin syndrome signs and symptoms typically occur within several hours of taking a new drug or increasing the dose of a drug you're already taking, but that can occur at any time.

Common signs and symptoms include:
*Agitation or restlessness
*Confusion
*Rapid heart rate and high blood pressure
*Dilated pupils
*Loss of muscle coordination or twitching muscles
*Heavy sweating
*Diarrhea
*Headache
*Shivering
*Goose bumps

Signs and symptoms of severe serotonin syndrome, which can be life-threatening, include:
*High fever
*Seizures
*Irregular heartbeat
*Unconsciousness

More complete symptom lists are available at Serotonin Syndrome- Wikipedia. If you ever suspect serotonin syndrome, contact your doctor and/or proceed to an Emergency Room immediately. Serotonin syndrome is treatable, and even reversible, if caught early enough.

Steve
IntractablePainKills@gmail.com

Contact Me

If anyone is interested in contacting me about topics that you'd like me to discuss, any suggestions that you have, or if you have any questions, please don't hesitate to email me.
IntractablePainKills@gmail.com

RIP Futurama, again

-Steve

Update

My back is killing me, my legs are even worse. I wish that I could impart some wisdom, but days like today are for watching TV and waiting for them to pass.

I'd like to invite anyone and everyone who has any questions, or needs advice on handling their doctors.

A little more about me

I had an intrathecal morphine pump trial June 24-26, 2011. It was wildly successful, but the pain management office that works with my Neurosurgeon declined me as a patient because I was already taking a high opioids (which is necessary to qualify for the procedure and I was told that I couldn't even be on hydrocodone/acetaminophen if I wanted to be CONSIDERED as a patient), so they doesn't implant the pump. I still haven't found am office willing too implant one for several reasons
1) liability- my brainstem tumor will kill me by growing enough that it stops my breathing and/or heart, this will mimic opioid overdose
2) I am on a high dose of Duragesic (fentanyl) patches, but I could easily discontinue them with an intrathecal pump
3) my age,  I am 23 years old, I was 21 at the time.

-Steve

"The problem with the world is that the intelligent people are full of doubts while the stupid ones are full of confidence."
- Charles Bukowski

Posted from Blogger for Android

Remarkably Low Opioid Abuse in Pain Patients

Remarkably Low Opioid Abuse in Pain Patients

A recently reported study evaluated the prevalence, characteristics, associated healthcare resource utilization and costs of diagnosed abusers of prescription opioids in a large managed care population. While such analgesic abuse may be a growing problem, the prevalence rates of abuse and addiction among patients with pain appear to be surprisingly low and not supportive of the so-called “epidemic” claimed by many sources.

For this new study, Carl L. Roland, PharmD and colleagues identified all patients aged ≥12 years with prescription opioid abuse in the Thomson MarketScan Commercial and Medicare Supplemental research databases spanning January 1, 2005 to September 30, 2010 [Roland et al. 2013]. Diagnoses of “opioid abuse” were based on ICD-9-CM (International Classification of Disease, 9th Revision, Clinical Modification) codes denoting opioid abuse, opioid addiction, and/or poisoning (eg, overdose) with opioid agents (excluding heroin). The databases included information on 70.5 million persons in the United States. For comparative analyses, opioid abusers were matched 1:3 on demographic variables with non-abusers.

Writing in the May/June 2013 edition of the Journal of Opioid Management, Roland et al. report that the overall prevalence of diagnosed “opioid abuse” during 2005-2010 was 0.195%, and there had been more than a twofold increase from 2005 to 2010 (0.067% to 0.145%). Prevalence was calculated as the number of unique individuals with an ICD-9-CM coding divided by the total number of unique enrolled patients for the period of interest, reported as a percentage.

During 2005-2010, diagnosed opioid abuse was more prevalent in males (0.220%), those aged 18-25 years (0.271%), and those from the Northeast region of the U.S. (0.231%). Furthermore, abuse was more common in patients with a comorbidity of pain (0.462%) and in those prescribed opioids for pain (0.924%).

In comparative analyses, a total of 15,398 opioid abusers were matched to 46,194 non-abuser controls. As might be expected, medical comorbidities were significantly (p < 0.0001) higher in opioid abusers versus non-abusers. Also, healthcare resource utilization was significantly greater for abusers than non-abusers, and total all-cause-costs were higher for abusers than non-abusers.

The authors conclude that prescription opioid abuse — ie, abuse, addiction, poisoning — has increased over time and such behaviors are associated with significantly greater health resource utilization and costs compared with non-abusers. They further state that results from this present study affirm those of other research using similar methodologies but different databases.

COMMENTARY:
First, it must be noted that this study was sponsored by and the entire research team was employed by Pfizer Inc., New York, NY. Some readers may question whether data collection and interpretation might have been biased by commercial conflicts of interest of some sort.

Secondly, there may be some doubts as to whether ICD-9-CM codes used for classifying opioid abuse and addiction were sufficiently sensitive and specific for purposes of this study. Along with that, proper attribution of coding depended on clinician recognition of opioid abuse or addiction, and the extent of their training and skills in doing this was unknown.

Despite these concerns, it is astounding that the prevalence of opioid abuse — representing abuse/addiction/poisoning combined — during 2005-2010 in this very large population of patients with pain was <0.2%. Specifically among those prescribed opioid analgesics, the rate was <1.0%. Even with a large margin of error, and potential biases, these data would seems to belie recent declarations of an opioid abuse/addiction “epidemic” — at least among patients being treated with opioids for pain conditions.

Controversies surrounding prescription-opioid abuse and addiction were discussed in a lengthy UPDATE [here]. Review studies have noted opioid abuse/addiction rates of 0% to 50% among patients in pain treatment, and opponents of opioid treatment for chronic pain often claim 30% of patients may become addicted to those analgesics. Certainly, this is still a poorly defined and frequently confusing topic and, most certainly, data in this latest study suggest that the prevalence of “abuse” denoted by ICD-9-CM codes, which also encompass addiction, is of small proportions.

REFERENCE: Roland CL, Joshi AV, Mardekian J, et al. Prevalence and cost of diagnosed opioid abuse in a privately insured population in the United States. J Opioid Management. 2013(May/June);9(3):161-175 [abstract here]

http://bit.ly/LowAbuse

PROP

PROP, Physicians for "Responsible" Opioid Prescribing, submitted a petition to the FDA. It will have three major effects if granted for non-cancer pain patients. They're asking for the following label changes on ALL opioids:
1) Limit patients to 90 days on opioids, eliminating their year in CP/IP patients because pain isn't considered chronic for the first six months
2) Change FDA approved indication to read "severe pain", instead of "moderate to severe pain" or "moderately-severe to severe pain".
3) Limit the daily dose of all combined opioids to 100mg MED (morphine equivalent dosage). That's roughly 60mg/day oxycodone/OxyContin/OxyIR/Roxicodone, 30mg/day oxymorphone/Opana, 24mg/day hydromorphone/Dilaudid/Exalgo, 100mg/day hydrocodone/Norco/Vicodin, or 25mcg/hr fentanyl/Duragesic patches.

Thankfully, PROMPT (Professionals for Rational Opioid Monitoring & PharmacoTherapy) and many others have decided to fight back.

I urge everyone to write comments and explain why it will hurt CP/IP patients and do little to curb opioid abuse.

If anyone has any stories of their struggles to get adequate, or any, opioids for pain relief, please send them to the FDA and/or email them to me in my new letter to them as a founding member of CPSA.

Please visit:
PROP Petition (official government site for the petition)

Welcome

Welcome to my blog. This blog is dedicated to everyone who's told me over the years that I should start one and to every chronic pain and intractable pain suffers, their friends and families, and the doctors who do their best to help us.

About Me- I have suffered from intractable pain since 2009. I have suffered from chronic pain since I slept in a crib. I have an inoperable brainstem tumor, specifically a DIPA/DIPG (Diffuse Intrinsic Pontine Astrocytoma/Glioma) that was found January 8, 2006 and diagnosed April 1, 2008. I also helped found the Central Pain Syndrome Foundation. After significant hesitation, I tried opioids. Once I reached "high" doses, my pain significantly improved,until the dose was reduced. I still take a somewhat high dose of Duragesic.

My wife also has intractable pain, so I've been a caregiver as well.

My daughter started kindergarten last week. She is staying with my father while we wait on housing assistance because we lost our home after my mother-in-law passed away and doesn't leave any money to cover the mortgage. We're staying with my wife's great aunt, but the house is not suitable for a child and her wellbeing is too important to even consider her living here.

I'd like to end my first post with a few reading suggestions

The Intractable Pain Patients' Handbook for Survival

Overcoming Opiophobia

High Dose Fentanyl for Cancer Pain

-Steve