Chronic & Intractable Pain Self-Care That Works

Pain Self-Care That Works: Create Your Own Pain Management Toolbox

by Radene Marie Cook IPJ Staff Writer

Download PDF of 2015 Presentation: Pain Self-Care That Works

CDC Opioid Prescribing Guidelines–A Threat To Pain Patients’ Lives

by Heather Grace IPJ Staff Writer

On September 16, the Centers for Disease Control and Prevention (CDC) did something dubious. What’s frightening… it’s likely to have a life-altering impact on all chronic & intractable pain patients. Was this a deliberate act? I’ll let you be the judge.

They decided to release/discuss the CDC Opioid Prescribing Guidelines that will go into effect in 2016. These guidelines were designed to further curb opioid abuse. But in fact, they seem to be about arbitrarily curbing treatment.

In order to even view the CDC’s draft of opioid prescribing guidelines, you had to attend the webinar. They were not downloadable. They recorded the webinar, but are not releasing it to be watched for those who missed it.

And to comment on the CDC’s hard-to-access proposed guidelines, you had just one day. No–that was not a typo! Just one day was allowed for comment! Comments had to be in by 5pm eastern on September 17th, which meant people like me and other west coast advocates did not get to comment. Unfortunately, I didn’t find out until it was too late that it would close at 2pm my time. How many others wanted to comment, but were unable to?

A final version of the CDC’s guidelines will go into effect 2016 onward. Based on what I’ve read/heard from an expert in the field, drastic changes are ahead. We should anticipate a very low arbitrary limit on pain medication for all patients nationwide, even the most seriously ill. What’s most troublesome–the CDC intends to set that limit even lower than the 100mg/day now in effect in many states. (See #5, below.)

The draft guidelines are outlined below thanks to the Pain News Network–thankfully. They will not be available in draft form on the CDC’s website, despite the fact that guidelines will be discussed from now through December.

CDC Draft Guidelines for Opioid Prescribing

1. Non-pharmacological therapy and non-opioid pharmacological therapy are preferred for chronic pain. Providers should only consider adding opioid therapy if expected benefits for both pain and function are anticipated to outweigh risks.
2. Before starting long term opioid therapy, providers should establish treatment goals with all patients, including realistic goals for pain and function. Providers should continue opioid therapy only if there is clinically meaningful improvement in pain and function that outweighs risks to patient safety.
3. Before starting and periodically during opioid therapy, providers should discuss with patients risks and realistic benefits of opioid therapy and patient and provider responsibilities for managing therapy.
4. When starting opioid therapy, providers should prescribe short-acting opioids instead of extended-release/long acting opioids.
5. When opioids are started, providers should prescribe the lowest possible effective dosage. Providers should implement additional precautions when increasing dosage to 50 or greater milligrams per day in morphine equivalents and should avoid increasing dosages to 90 or greater milligrams per day in morphine equivalents.
6. Long-term opioid use often begins with treatment of acute pain. When opioids are used for acute pain, providers should prescribe the lowest effective dose of short-acting opioids and should prescribe no greater quantity than needed for the expected duration of pain severe enough to require opioids. Three or fewer days will usually be sufficient for non-traumatic pain not related to major surgery.
7. Providers should evaluate patients within 1 to 4 weeks of starting long-term opioid therapy or of dose escalation to assess benefits and harms of continued opioid therapy. Providers should evaluate patients receiving long-term opioid therapy every 3 months or more frequently for benefits and harms of continued opioid therapy. If benefits do not outweigh harms of continued opioid therapy, providers should work with patients to reduce opioid dosage and to discontinue opioids when possible.
8. Before starting and periodically during continuation of opioid therapy, providers should evaluate risk factors for opioid-related harms. Providers should incorporate into the management plan strategies to mitigate risk, including considering offering naloxone when factors that increase risk for opioid-related harms are present.
9. Providers should review the patient’s history of controlled substance prescriptions using state Prescription Drug Monitoring Program data to determine whether the patient is receiving excessive opioid dosages or dangerous combinations that put him/her at high risk for overdose. Providers should review Prescription Monitoring Program data when starting opioid therapy and periodically during long-term opioid therapy (ranging from every prescription to every 3 months).
10. Providers should use urine drug testing before starting opioids for chronic pain and consider urine drug testing at least annually for all patients on long-term opioid therapy to assess for prescribed medications as well as other controlled substances and illicit drugs.
11. Providers should avoid prescribing of opioid pain medication and benzodiazepines concurrently whenever possible.
12. Providers should offer or arrange evidence-based treatment (usually opioid agonist treatment in combination with behavioral therapies) for patients with opioid use disorder.

Patients: Prepare to Decrease Pain Med Dosages

Despite the fact that I have to be on pain medication for the rest of my life due to severe constant pain from a central pain syndrome / a spinal cord injury, I was advised by my doctor to prepare to decrease my dose, as it is a likely outcome. I’m really worried. I know people I’ve gotten to know like family will die if we’re forced to conform to the these guidelines.

As for me? As strong as I’ve been, I see myself back “on that ledge” between life and death, contemplating suicide, just like I did before adequate pain care in 2006… if it ever gets to that. If the CDC decides they want us dead, and if they indeed force me back to *that* point in 2016 with these guidelines — the twisted, ugly dark place most people come back from — the world would know exactly why I took my life. I won’t allow stats-massagers to list me as an opioid death.

The thing is, I don’t *want* that to happen. I don’t want pain care to get any worse for anybody! But I’ll be silent no more about the fact that I’m terried… truly terried. Neither should you, if you’re reading this and feel the same.

The CDC said the guidelines were developed after a series of meetings with a core expert group and independent peer reviewers that the agency did not identify by name. However, I believe I have found the names of the peer reviewers, thanks to a hidden PDF on their site:

PEER REVIEWERS

Jeanmarie Perrone, MD
Professor of Emergency Medicine, Hospital of the University of Pennsylvania Director, Division of Medical Toxicology, Department of Emergency Medicine University of Pennsylvania
Expertise: medication safety, emergency department prescribing, substance misuse, use of prescription drug monitoring programs, toxicology, provider education

Matthew J. Bair, MD, MS
Associate Professor of Medicine, Indiana University School of Medicine
Expertise: pain management, geriatrics, non-pharmacologic treatments, mental health, veterans’ health

David Tauben, MD
Chief, Pain Medicine
Clinical Associate Professor, Department of Anesthesia and Pain Medicine
Department of Medicine Division of General Internal Medicine
University of Washington
Expertise: medical education, primary care, pain management

You can view the rest of that PDF on my site, in case they remove it.

CDC officials have long been critical of opioid prescribing practices and have repeatedly cited a study that claims over 16,000 Americans are killed annual by overdoses linked to pain medications. But is that true?

Those numbers are grossly overstated, according to my research. I have reviewed many documents on many sites other that Pain-Topics.org, but they have great data on *WHY* the stats are inaccurate/inflated. From my review of this issue, it is clear statistics on a growing problem means more money to fight that problem each year, when the “pie” of government funding is carved up. Perhaps a larger share will go to the CDC next year, thanks to this unreasonable set of rules they plan to force upon people in pain? How terrible that dollar signs are more important than American citizens–even those of us in severe, unending pain.

From my research, I’ve found that pain medication is being sited as a cause of death merely because it exists in people’s systems, even if they were a passenger on a 747 that crashed. Also, to increase numbers of supposed “opioid-deaths,” statistics are inflated by including deaths caused by dangerously mixing of illicit/prescription substances with the intention of getting high. These are not patients who are being treated for serious pain-related illnesses. These are, sadly, people trying intentionally to harm themselves–to create a chemical reaction in their bodies that is unnatural and dangerous.

Not to mention, despite the hype, pain medication abuse is not anywhere near the top 10 causes of death in the U.S.! So why are we the scapegoats? It has to be money… what else could it be? We aren’t hurting anyone. We avoid illicit substances. We beg for help. Repeatedly. Isn’t it time this “war on drugs” stopped making *us* its casualties?

MY QUESTION IS: ARE WE GOING TO LET THE CDC STEAL OUR PAIN CARE AND KILL US ALL?

They claim they will be using evidenced-based material in forming these guidelines, but they don’t talk about all the people who kill themselves because the pain is too much to bear. Nor do they mention all of the people with intractable pain who die due to lack of appropriate care in the emergency room, despite cries for help and pleading with ER docs to call their pain management physician. It’s happened 3 times this year, to people I know!

I suspect a lot of this so-called data comes from PROP (Physicians for Responsible Opioid Prescribing), an extremely controversial organization that has lobbied Congress and criticized the FDA for not doing more to limit access to opioids. Why do I say this? There’s a link to PROP literature calling for “cautious, evidence-based opioid prescribing” on CDC’s website, on a page discussing safe prescribing tools” (See it here, at the bottom of the page.)

In case they remove the link on this page, I’ve included a screenshot of the page, here (click to see larger image):

The email used to comment on this atrocity created by the CDC was opioidcomments@cdc.gov. I got an error message when I tried to comment after 5pm on 9/17. But I suggest you flood the CDC with complaints, anyway! Call the Centers for Disease Control at
800-CDC-INFO / (800-232-4636) or TTY: (888) 232-6348, Monday-Friday
8am-8pm eastern. Email them using their contact form: https://wwwn.cdc.gov/dcs/ContactUs/Form. Write them at: Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329. View http://www.cdc.gov/contact/index.htm for more options.

Even Better: If someone has time, why not post a comment with the contact info for the peer reviewers, listed above? Let THEM know we’re mad as hell and not gonna take this… It’s time we united for the common good. It’s time ALL PAIN PATIENTS became PAIN PATIENTS/ADVOCATES.

Are you with me?

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About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.

Pain Patient Tip For Optimal Health: PROTEIN!

by Heather Grace, IPJ Staff Writer

Most people with chronic or intractable pain have damage to the central nervous system. It’s a long-term process (life-long—especially for those with IP), however, healing damaged nerves *is possible.*

This requires getting appropriate vitamins & supplements. I take a multi-vitamin with iron, B-complex, calcium/magnesium/zinc, fish oil, flax oil & pregnenolone religiously. It also requires proper pain control, often through prescription medication.

Pain management is much more than that, of course. There are many great self-care remedies, such as a no/low impact exercise like swimming or walking. When I’m up to it, I use my elliptical cross-trainer machine. I also take in plenty of protein & amino acids. Relaxation/stress reduction techniques are great too, such as yoga or meditation.

When my pain is at its worst, doing things that make me happy truly helps. Like: online pain advocacy via social media/this blog—aiding others with chronic pain, watching a favorite comedy movie or tv show, or taking a walk somewhere nice—a big park or the beach. Sometimes a solitary stroll is nice, but I also enjoy dog beach on occasion. Watching blissfully happy dogs running & playing—including my own—always puts a smile on my face.

One of the lesser known ways to heal the body on an ongoing basis, though, is through the intake of amino acids. Many of them specifically benefit our nerves, muscles, etc. Taking amino supplements like GABA, Taurine &/or Glutamine is a great start.

However, the very best way to get a variety of pain-essential aminos is by increased protein intake. (Experts agree utilizing food sources of vitamins/minerals is most beneficial to the body.) Lean meat, poultry & fish as well as vegetable sources like beans/lentils are great. All of these contain large amounts of protein and thus, lots of essential amino acids. The problem is, many people with severe pain have a decreased appetite.

Because I am one of the people with a lower appetite than I had pre-pain, I started increasing my protein/amino intake by using supplemental protein powder. I highly recommend it—so long as your physician approves, of course! Looking for the right product is crucial—all protein supplements were not created equal. Look for the ones with healthy, pronounceable ingredients, the fewer the better. Your best bet is brands found at stores like Whole Foods, Sprouts, Mothers or Trader Joes. (Any store that sells quality health food/vitamins/supplements is a great place to look for protein supplements!)

Because I like the taste of whey and egg protein powders most, I prefer brands like Jay Robb. It’s great tasting without having 100 unpronounceable ingredients. As for vegetable proteins, you can’t go wrong with the Garden of Life “Raw” line. This line is organic and contains only plant-based ingredients—great for vegetarians and vegans alike. In addition to a blend of vegetable proteins (rice, garbazanzo bean, amaranth, quinoa, millet, etc) Garden of Life adds a wonderful enzyme blend to aid digestion. My favorites are Raw Protein Energy w/Guayaki Yerba Mate and Raw Meal w/Marley Coffee.

Both Jay Robb and Garden of Life are fairly expensive, however. Prices are in the $30-50 range for most of the quality brands in stores. (Garden of Life is at the higher end of the spectrum.) You can find deals online. However, be sure you’re getting the product from a well-respected vendor with a good reputation. This helps ensure the product is both genuine and was properly stored, to prevent spoilage. Note: I would personally avoid auction sites for a product like this.

In addition to price concerns, any product that’s protein powder with other added ingredients (containing vanilla, sweeteners such as stevia & sometimes more) can be limiting. Most powders are meant for use in sweet recipes, such as smoothies. They can also be added to coffee or tea in place of milk/cream.

That’s my best advice for people who aren’t big on breakfast… add protein powder to your morning coffee or tea and your body will thank you for it! I absolutely love protein powder in iced coffee or iced chai tea. TIP: If you want iced coffee or tea, be sure to add the protein powder to the hot coffee/tea and mix thoroughly before adding ice… it dissolves/mixes into the drink more easily that way.

During spring/summer especially, I make/freeze smoothies but also coffee and chai tea. I blend these with ice and make enough to pop several in the freezer & pull them out to eat during in another hot day. Once frozen, I often eat my frozen smoothies/coffee/tea with a spoon still mostly frozen. Or, sometimes I allow them to thaw somewhat & eat a slushy shake. I’m always happy to have something to eat that with a decent amount of protein that also beats the heat!

Though smoothies, coffee or tea are great ways to use the protein powders as mentioned above, these powders don’t work with just any food. The products with sweeteners, as you may expect, do not work well with savory foods!

If you want more flexibility—so you can add protein powders to *any* foods you want—pure protein powders are the way to go! You’ll find that few of the high-end brands sell plain whey or soy proteins. However, there’s another option… TIP: Find a local store/online retailer that sells these in bulk quantities.

I buy my pure protein in the bulk bins at my local Sprouts. They carry both whey and soy protein. Each has a small amount of soy lecithin added, so the powder doesn’t clump. I buy the whey protein, which is approx $13 per pound. I believe the soy protein is approx $11/lb. It’s quite economical this way and the bonus is, you can buy as much or little as you like!

I add plain whey protein to most of my small meals (like soup/stew, yogurt or oatmeal) so I still get adequate protein. I add it to one my very favorite ‘fast food’ snacks/small meals by Tasty Bite. Tasty Bite sells mild Indian food that comes in 10oz microwaveable pouches—I believe they are meant to be used as side dishes. I often add a tablespoon of whey protein powder to their Madras Lentils, after I’ve cooked it. (Note: The Indian name for this dish is daal makhani, but it is also known as black lentils with red beans). Another fave of mine with a bit of added protein is Tasty Bite’s Kashmir Spinach (sag aloo / creamed spinach with paneer cheese).

TIP: Always add protein powder to hot foods *after* it is heated up. I generally add mine as soon as I’ve turned off the stove and the food nearly is ready to serve. As stated earlier, adding the powder to a warm/hot dish allows it to blend easiest. Adding it at the end also means the protein powder won’t impact the intended outcome of your recipe—you won’t add too much/too little early on. Also, if you’re using whey protein, the fact that it’s a milk product can make hot food recipes easier to scald/stick to a pan if added early on. It’s even possible to ruin what you’re making if you add the powder too soon. This is especially true when a recipe calls for precision, such as candy making. I’ve added protein powder to toffees and brittles, for instance—but only at the very end!

Readers: Any ideas for other recipes that would work well with added protein powder? Share them by commenting below!

Who Isn’t Touched By John Clare’s “I Am”?

I Am
by John Clare

I am: yet what I am none cares or knows
My friends forsake me like a memory lost,
I am the self-consumer of my woes–
They rise and vanish in oblivious host,
Like shadows in love’s frenzied, stifled throes–
And yet I am, and live–like vapors tossed

Into the nothingness of scorn and noise,
Into the living sea of waking dreams,
Where there is neither sense of life or joys,
But the vast shipwreck of my life’s esteems;
Even the dearest, that I love the best,
Are strange–nay, rather stranger than the rest.

I long for scenes, where man hath never trod,
A place where woman never smiled or wept–
There to abide with my Creator, God,
And sleep as I in childhood sweetly slept,
Untroubling, and untroubled where I lie,
The grass below–above the vaulted sky.

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John Clare was born into a peasant family in England 1793. Although he was the son of illiterate parents, Clare received formal schooling til age 12. Through earning money as a agricultural labor (long, difficult days spent ploughing and threshing), he published several volumes of poetry.

For a short time, Clare experienced a brief albeit condescending popularity as Northampshire England’s “Peasant Poet,” at a time when illiteracy was a norm for rural workers. For at that time, poetry was expected only from those in high society.

This was a short-lived dream, sadly. As they say… ‘All sad people like poetry. Happy people like songs.’ Though it’s apparent he was a gifted writer, the sadness, isolation and financial hardship wore on Clare. After suffering from delusions, he was admitted to an asylum where he spent the final 20 years of his life. — Heather Grace, IPJ

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About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.

Smile—Fake Happy Til You Make It!

By Heather Grace, IPJ Staff Writer

You’ve probably heard the saying, “Fake it til you make it.” And lots of people do, everyday. They act as if they have more know-how/money/power/status than they actually do. Sure—it’ll impress people for a time.

But… What if you don’t actually make it? Or the truth is discovered? That kind of “faking it” will likely lead to little more than a sick feeling in the pit of your stomach. It could also result in a great deal of anxiety, as you worry you’ll be found out. Or worse—knowing the real you may never live up to the fake you could cause depression.

I don’t hide behind tall tales, it’s just not who I am. Being an open book is what comes naturally to me—especially with friends & people with whom I share a bond (like the chronically ill, for instance).

I also appreciate realness in every aspect of my life. I’m not about to change my stance dramatically. However, there is a kind of “faking it” that can pay off… and in a big way!

Chronic Illness / Chronic Pain Blues

I could probably write over one hundred sad songs with all the bad days I’ve had in the past 42 years. I’ve been sick since I was a baby, with recurrent ear/nose/throat infections. By age 8ish, I was a fullblown endocrine nightmare as well. I was in/out of doctors offices & labs. My list of diagnoses seemed to grow every few years. No, it wasn’t exactly easy growing up sickly… add to that my very rocky family life (understatement of the century)—and you’d expect sorrow enough to fill a handful of blues albums, easy! But that wasn’t me–far from it.

I was like Tigger! Well into my 20s I was cheerful, bubbly, looking to just be happy & experience life. I wasn’t going to let anything stop me. Hurdles, smurdles! Nothing was gonna hold me back! I was beyond determined to escape my childhood–it was my quest. As an eternal optimist, one thing was clear to me: No matter how challenging life got, I was creative and capable enough that I knew in my heart I would always land on my feet!

That was who I was up until 1999, when a work-related cervical spine injury started causing me pain as well as numbness. Working in the IT field meant long days on a computer. The pain was chronic, due to my constantly heavy workload. Thanks to the oh-so-helpful CA Workers’ Compensation System, my chronic pain became intractable pain—both constant AND severe—by 2003.

It was sheer hell and I still don’t know how I survived 2003-2006. I was seriously screwed up—but refused to believe *I* of all people was permanently disabled. But the blues began to set in, anyway. BIG TIME!

Dark Days, Searching for Light

By mid-2006, things were beyond bad. I’d hoped & prayed for years that my final surgery—microsurgery on the crushed disc in my neck—would solve everything. Finally, that surgery was granted and I was expecting to go back to “normal”… even if the road back was a slow and arduous one. No one really warned me to manage expectations. No one said, “It could get better, or it could get much worse—we cannot predict which will happen.” They should have!

My spine surgery made things much, much worse. When the neck brace came off and I was set to begin rehab, I knew something was very wrong. I told the Physical Therapist that my neck didn’t feel right, like the joints was worn or had sand grinding in it. The pain and neurological sensations were strange to me—nearly indescribable—at the time. But whatever was going on, I was worried. And later, I’d learn why:

Work Comp granted this much-needed surgery too late for it to do much good. Success was not all that likely. My first MRI showing the problem was in 2001, after two years of fighting to get a more definitive test than an x-ray! But, it would take another FIVE YEARS for them to actually do the surgery?! Because my neck surgery happened much too late to prevent the nerve damage that invaded my spinal column and took over, a negative outcome should have been more easy to predict. I’d already been a serious neurological mess for at least two years. So conservatively, my chances were 50-50 that it would help, at best.

After all I’d been through with the pain, multiple nerve surgeries, epidurals & other torturous interventions that I didn’t want or need but was forced into, extreme job stress/a subsequent dubious lay-off, failed spinal surgery & worst of all—a dwindling support system, I was extremely suicidal. Me… the girl who’d considered it unthinkable her entire life, despite all the tough times. Me… who thought SUICIDE was vile–that the word itself was more ugly than any other word, in any language.

Before 1999, I’d never have believed it was possible for things to go that wrong by 2006. Not for me. But the pain & numbness were so severe, they consumed my days and kept me up every night. On an all-too-rare good night, I got two hours sleep. Being in that state yet not being able to sleep felt like a waking nightmare.

The still silence of the early morning was the most difficult… In torturous pain, sleeplessly suffering, my thoughts inevitably turned dark. I was all alone. Afraid. Despite the state I was in, my mind was still razor sharp, and the reality of my situation was dar from pretty. What would my future would look like if I continued this downward spiral? How long could I survive, like this? Did I even want to? After searching for my miracle–spending countless hours and thousands of dollars on my quest–did I think it possible to ever end this agony? Time seemed to slow down when things were at their worst. The clock’s incessant ticking was taunting me–trumpting through each torturous second of this eternal torment!

The ‘Tigger’ in me was no more… that wide-eyed ‘can do’ kid had finally met her match. I had no strength left to fight. I just wanted to die. Because I would only settle for guaranteed death, I was desperately and obsessively thinking about how to do it. It was all-consuming. After researching the less ugly options, I found there was too high a survival rate for those methods. So, it would have to be ugly. The thought anyone I know finding me afterward was too awful to bear. So, I decided I’d use sporty little car to put an end to the constant, unbearable pain. I’d zoom toward the spot I picked out on a desolate road where I’d force my shiny silver beauty to fly though a flimsy chain-link fence and over the side of the freeway, slamming into the cement bridgework below. If the fall/crash itself wouldn’t do it, I figured going from 100 to 0 into a wall of cement would.

Twice, I felt compelled to end my own suffering. In the early morning hours, I sped toward ‘the spot’ without any hesitation. This was to be it, finally. My pain would be no more. To my dismay, I realized that even in the pre-dawn hours, there were more cars on the road than I’d expected. So, it would be a waiting game.

Sitting on the side of the road, I imagined myself doing it, over & over. Everytime I pictured my car hitting the cement area I selected, I stared at the roadway below & said: Now! Inevitably, each time I did so, a car drove by. It happened countless times—on both attempts—despite it being in an area of Orange County where few people were on the road in the pre-dawn hours of the morning.

It was infuriating! The only reason I didn’t actually do it was because I refused to be the cause of anyone else’s suffering. After all, the end of nightmare shouldn’t be the start of someone else’s.

The second time I was so crushingly disappointed and angry, I was slamming my fists into the steering wheel—hard—as I scream-cried so loudly, I worried someone would call the police. Then, the answer came to me, out of nowhere: See JUST ONE MORE DOCTOR, If he can’t help me, then I’ll go through with my “backup plan”—cars on the road, or not.

I’ve never experienced such clarity in my life… it felt like divine intervention, even then. And now, I am certain it was!

Thankfully, that one doctor turned out to be the one! I started 2007 anew. With his help, the intactractable pain was under control & I could smile again. I was still in pain—and I always will be—but at least it’s bearable. No chronic illness / chronic pain blues. No thoughts of suicide. In fact, I can hardly believe the person who was planning every detail of her death in 2006 was actually me. Pain management was my miracle, truly!

Even on the worst days, I am so thankful I found help and got a second chance at life. Suicide seemed like my only way out, but clearly, it wasn’t. Deep down in my soul, I now know I could never let myself get to that dark place ever again. I’d reach out for help, however I had to, even if it was by calling the National Suicide Prevention Lifeline: (800) 273-8255 or going to the closest ER.

I’ve learned so much by standing on that ledge, staring into the abyss. (Though I’d never recommend it!) Though I’m not exactly Tigger anymore, I have my Tigger moments… and some Eeyore too. Regardless, I’m alive and I know how very lucky I am to be here. My hope is that by sharing my these very dark moments so publicly, perhaps I can help someone else resist their own ledge. So my journey continues, with all its ups and downs. (See: Are You a Tigger, an Eeyore, or a Pooh?)

Unfortunately my health problems are back, with a vengeance. Things started to get worse five short years after I found my wonderful Intractable Pain doctor. I now have an autoimmune disorder that’s yet to be fully diagnosed or controlled. Autoimmune health is complex. Many of my symptoms are common to several different illnesses. In time, I’ve got to believe I’ll get the answer to a question that I believe dates back to my childhood endocrine issues. What’s certain is that my hormones are a mess. So of course, the blues are also back. I’m very thankful that I’m not suicidal, but still… Fate is a cruel mistress.

Faking A Smile—One Fake Happy Day

Instead of spending another damn day crying over anything & everything that’s wrong, an idea came to me today, based on some very applicable research I’d read a few years ago (see article below).

Research in recent years has shown that there may be a real benefit to putting on a fake smile. According to many experts, smiling isn’t just a way to express happiness… It may actually be able to cause a happy feeling. Sure, it’s counterintuitive. After all, we smile without giving it a thought when we’re truly happy. But when it comes to the smile-happiness connection, a growing body of evidence supports the theory that happiness is also possible, as an effect of smiling.

So, my mission is to try that theory out, at this very low point in my life. I have no expectations, I mean, how can I? I’m the all-real, all-the-time type. So fake isn’t exactly my style.

Still, I’m hoping there’s something to it! Even though there’s a whole lot wrong at the moment, in my entire life—from my health, to the roof over my head that’s about to be taken from me, to the hole in my pocket where money should be to pay bills—I know one thing for sure: smiling can’t hurt!

Everything’s gotten me so down, I’ve been having trouble getting back up again. So just today, I’m going to try smiling anyway.

Yes—SMILING!

It may seem silly to plaster on a fake expression, but I’ve worn the “I’m ok” mask for years, to hide how much pain I’m in. Why not take it a step further? Instead of faking just ok, I’m faking full-on zippity doo dah BLISS! I want out of this funk, darn it! Since I came back from the edge, being this blue is very unlike me. It has absolutely no redeeming value, either. So, I’m getting out, if only for one day. (And if it works, the optimist in me says I’d be fine with faking happy it til I make it back there, for real. Somehow. Someway. Someday.)

Sure, I’m alone under a mountain of bills I can’t pay & I can’t seem to get to all the things I should have already done, no matter how hard I try… But, just for today, I’m smiling in spite of it all. Just for today—because who knows what tomorrow will bring? I’m hoping tomorrow I’ll have a reason to crack a smile, naturally… Being hopeful can’t hurt, either!

I’m trying on my 100% smile-til-it-hurts “fake happy” for 24 hours. I’ll let you know if it pays off, like the research says it should. If it turns out that it helps to grin for absolutely no good reason, I might just keep it up—who knows? Feel free to join me and take your very own fake smile for a test drive… I’m going to put the saying, “Fake it til you make it” to good use.

So if you see me, count on a smile, ear-to-ear. And if you say “good morning,” “good afternoon,” or “good night,” I have the perfect reply: It couldn’t possibly be bad!

About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org). She is also active on Twitter: @IntractablePain.

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.

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Does smiling make you happy?

by Julia Layton · 03 June 2009 · ©HowStuffWorks.com · http://science.howstuffworks.com/life/smiling-happy.htm

Smiling doesn’t seem like a particularly complicated act: You feel a happy emotion, the corners of your mouth turn up, your cheeks lift and your eyes crinkle. The overall effect tells the outside world that you’re feeling happy on the inside. It’s simple and, in most cases, totally spontaneous. We typically smile without making a concerted effort to do so.

In fact, most people are turned off by the appearance of a smile that takes effort, because so often it’s obvious it’s fake. It’s not hard to detect a fake smile — it usually involves only the mouth, not the eyes.

The appearance of a genuine smile, one involving specific changes in the eyes in addition to the mouth (notably a crinkling of “crow’s feet” and a downturn of the outer points of the eyes) is called a Duchenne smile, after the neurologist Guillaume Duchenne. Back in 1862 he identified the facial muscles involved in spontaneous smiling^[3].

Awkward appearance aside, research performed over the past few decades suggests there could actually be a benefit to producing a fake smile. According to many experts, smiling may not only be an outward manifestation of a happy feeling. It may actually be able to cause a happy feeling.

It’s the exact opposite of how most people see the smile-happiness connection, but with a growing body of evidence supporting the effect, it seems there may be something to it. But does that mean you can just turn off every bad feeling by faking a smile? Could you be a truly, permanently happy person if you master the look?

In this article, we’ll look at the evidence for smiles causing happiness, see how significant the effect is and find out if there are other facial expressions that can trigger the emotions they’re supposed to reflect.

In the 1970s and 1980s, quite a few psychologists got in on the smile-research action, with surprisingly consistent results.

Evidence That Smiling Causes Happiness

In 1989, a psychologist named Robert Zajonc published one of the most significant studies on the emotional effect of producing a smile.

His subjects repeated vowel sounds that forced their faces into various expressions. To mimic some of the characteristics of a smile, they made the long “e” sound, which stretches the corners of the mouth outward. Other vowel sounds were also tested, including the long “u,” which forces the mouth into a pouty expression.

Subjects reported feeling good after making the long “e” sound, and feeling bad after the long “u.”

Other studies reported similar results. One had subjects make the positive and negative expressions by holding a pen in their mouths, either protruding outward for a pout or held lengthwise in the teeth to make a smile. In another, researchers had subjects mimic each physiological trait of a smile until their faces were in a full Duchenne expression.

In yet another experiment, one group of subjects was shown pictures of various facial expressions; another group made those facial expressions and a final group made those expressions while looking in the mirror.

The evidence all points toward smiling as a cause of happy feelings. Subjects were asked questions that pinpointed their emotional state before and after smiling, and they overwhelmingly scored happier after smiling. In the study involving the mirror, subjects who watched themselves smile saw an even more pronounced change in mood than those who smiled without the mirror, and the subjects who merely looked at pictures didn’t experience that change at all.

Those researchers hypothesized that self-consciousness is a factor in the effect — that introspective people might experience a greater smile-related mood lift than those who are less aware of their feelings. Thus the mirror-related boost. But what about the difference between those who looked at pictures and those who created the expressions? Why would the people who put their faces into a smile feel happier afterward?

Most other studies on the topic note the cause-and-effect relationship without having a definitive explanation for it. The reason why Dr. Zajonc’s research is so significant in the field is because he proposes a detailed, physiology-based explanation for the cause-and-effect relationship. According to his hypothesis, the facial changes involved in smiling have direct effects on certain brain activities associated with happiness.

Why Smiling Causes Happiness

While lots of research on smiles triggering happiness was performed in the last half-century, that spurt of interest was actually a renewed interest in the topic. The theory goes back to Darwin, who proposed in the 19th century that facial expressions didn’t only reflect emotions, but also caused them.

A lack of good evidence for how that happened was put the theory on the back burner for many years. But in the 1980s, some interesting studies on the physiology of smiling brought it back into the consciousness of the psychology field. One study found that when subjects contorted their faces to indicate fear, their body temperatures increased and their pulses sped up. Dr. Zajonc’s research took this observation further, into a full-fledged proposal for why a smile might trigger happiness. It basically goes like this:

When the temperature of any body part changes, the chemical activities connected with that area also change. Therefore, when facial muscles are activated in an expression, the biochemical processes associated with those areas of the face are altered according to their temperature change. And research suggests that a cooler brain creates good emotions, while a warmer brain produces negative emotions^[2].

Zajonc points to the part of the body called the internal carotid artery, which is the “pipe” that delivers the majority of blood to the brain. This artery flows through an opening called the cavernous sinus, which contains lots of facial veins. When someone smiles, causing certain facial muscles to stretch and tighten, veins are constricted. This would cut down on the blood flowing to the cavernous sinus, which in turn would reduce the amount of blood flowing through the carotid artery to the brain. Less blood volume means the temperature of that blood drops.

When that cooler blood gets to the brain, brain temperature would drop, too, triggering a happy feeling. The theory works in reverse, too: Zajonc says that when the muscles involved in a frown tighten, the result is increased blood flow to the cavernous sinus and, by extension, a warmer brain.

So, if Zajonc is right — and not everybody thinks he is, but it’s an interesting possibility — does that mean you could avoid sadness for the rest of your life by faking a smile?

Definitely not. Even proponents of the theory don’t suggest that smiling can make unhappiness go away. The theory in a nutshell is: in a state of emotional neutrality, putting a smile on your face can tip you in the direction of a positive feeling.

So don’t walk into a funeral and make everybody smile as big as they can. You’ll look insensitive, and it probably won’t make anyone feel any better. [Editor’s note: But smiling to provoke happier feelings under the right circumstances sounds like a great way to chase away the blues, doesn’t it? Especially if it works!]

For more information on smiling and emotion, visit the links below.

Sources

1. “Can Smiling Make You Happy?” Research and Teaching Showcase. Department of Psychology, University of Alberta. April 1998. http://web.psych.ualberta.ca/~varn/bc/Kleinke.htm

2. Goleman, Daniel. “A Feel-Good Theory: A Smile Affects Mood.” The New York Times. July 18, 1989. http://www.nytimes.com/1989/07/18/science/a-feel-good-theory-a-smile-affects-mood.html?sec=&spon=&pagewanted=all

3. Lienhard, John H. “No. 883: Smiles That Make You Happy.” The Engines of Our Ingenuity. University of Houston College of Engineering.http://uh.edu/engines/epi883.htm

Copyright © 1998-2015 HowStuffWorks, a division of InfoSpace LLC.

Pain Reality Day—September 9th: Vital Chronic Pain Event on Social Media

COMBAT MYTHS/MISCONCEPTIONS WITH YOUR CHRONIC PAIN TRUTH

By Heather Grace, IPJ Staff Writer

For far too long, those of us who live with chronic and intractable pain have spent a great deal of time hidden away, behind closed doors—especially when the pain becomes overwhelming. It’s time to change that! Please join us in sharing what it’s really like on a typical day of a life lived in pain.

Show the world what it’s really like to live with chronic pain by being part of the 1st Annual Pain Reality Day—YOU are invited! Join us via social media all day 9/9/15, using hashtag: #PainRealityDay. This new social media event will take place every year on September 9th as part of the annual Pain Awareness Month campaign.

It’s time to tear down the walls that have separated us from the “normal” world for far too long—to finally fight the misconceptions about pain patients with a healthy dose of truth! Are you brave enough to snap a few pics or a quick video that shows the unshowered, PJ-clad reality of one of those days when you’re just too damn sick to step outside & pretend everything’s ok?

Good! So am I! Why? The world needs to see our puffy-eyed, slightly disheveled excruitiating truth! Maybe then, people will think before they once again brazenly say: “you don’t look sick” (or whisper it, behind our backs). They need to know what it’s like to hurt so badly you can hardly breathe, much less go out into the world and brave another difficult day among the misinformed masses.

They need to know how tough it is to be seriously ill yet seen as a lazy, possibly drug-addicted pill popper. They need to feel the indignity each of us has felt, as we beg doctor after doctor to respond appropriately to our cries for help. They need to understand the anguish of losing an entire support system one person at a time when you need them most—your best friend, your mother, your significant other.

Only someone like YOU, who has suffered one unthinkable chronic pain-fueled tragedy after another, can tell the world what it’s like to slowly fade into invisibility but still be fighting to be believed. So, let’s finally say the things that must be said. Let’s unite as we open the doors to the private hell of the pain patient. We need to be heard just as much as they need to listen!

You’re invited to share each and every raw, real, enlightening truth about your pain during the inaugural Pain Reality Day, September 9th via Twitter, Facebook, your blog or the social media app of your choice. Don’t forget to include the hashtag: #PainRealityDay with each post!

Oh, and feel free to share this event with *everyone* you know who’s impacted by chronic pain: https://m.facebook.com/events/330332963834825.

All About #PainRealityDay

Show the world what it’s really like to live w/ Chronic Pain—all day 9/9/15, the 1st Annual Pain Reality Day, via the Internet. This is an advocacy event that will take place across the whole of the web—every blog, Twitter account, YouTube video and Facebook page belonging to people impacted by pain. Don’t forget to add the hashtag #PainRealityDay to each post, video or blog entry!

Who’s in? Please join us, but don’t forget to share this event with *everyone* you know who is impacted by pain patients, caregivers, health professionals, advocates, loved ones, the media! Share it via Twitter, Facebook, YouTube, etc. This day, 9/9 is for everyone who is advocating for better treatment of all pain patients. Tell everyone to visit PainReality.com for all the details!

What should you share? Any information that expresses YOUR Pain Reality… people need to understand we are just like anyone else with chronic illness invading every aspect of our lives—except that we are also persecuted for our condition. Tell them how it feels to have the people you love most suddenly not support/understand you, or worse—believe you’re lying/exaggerating our your condition. Explain how Healthcare professionals have treated you, just for wanting the help you need to get better. Tell the world how you have had to set aside your feelings/dignity far too many times as people mistreated you for being sick.

If you’re like me, you’ve lost a great deal to your illness:

• your career/ability to work a “normal” job
• your social circle-because you can’t just hang out with friends whenever you want
• relationships with people you thought would be there ‘no matter what’
• your home & any semblance of financial security
• access to the quality of healthcare you could once afford

Express how it feels to lose a great deal of what made you you & to suddenly be dealing with your serious health issues alone. Or if you’re lucky and have family support, share how you have to meet familial obligations/expectations by pretending you’re well enough to do/be what they expect you to… often by pushing yourself/overdoing it/making yourself more ill.

How should you share? Via any social media app (Facebook, Twitter, YouTube, etc.) or your very own blog/vlog—using the hashtag #PainRealityDay. TIP: Using short video clips/vlogs, audio clips or photos are great ways to share your pain reality, in addition to text posts.

Get as personal as you feel comfortable! Remember, #PainRealityDay is about making the world see us for who we really are! So, feel free to openly share all the ways pain challenges you & has made your everyday life different than it once was—before the pain. Got a famous quote from someone who lived with pain helps express how you feel? Or a psinting from a tortured artist? Those are also great ways to express your journey!

Share as many times as you’d like on September 9th, on any social media app… So long as you use the hashtag #PainRealityDay, your story will be connected to this important event. We will be hosting/sharing everyone’s posts via PainReality.com & on this blog. Note: The site is still being worked on, so for now it’s just this introductory information that’s been posted, but more is coming very soon!

When on September 9th? #PainRealityDay is all day long, so join in whenever you are ready! We will start at 12:01am and end at 11:59pm your time. Anytime you feel up to it, throughout the day, share aspects of your world with chronic pain via #PainRealityDay!

People need to see our reality, so please join me in sharing it! YOU are invited… to share our common reality and unite with all of the people who are just like you, on 9/9. In the meantime, spread the word about September 9th — Pain Reality Day, by using the hashtag #PainRealityDay! Feel free to link to this page and to the event on Facebook, as listed above. Can’t wait to ‘see’ you all there!

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About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.

2014 INTRACTABLE HERO Award Winner Doug Cook Gives His All

By Heather Grace, IPJ Staff Writer

 met Doug Cook through his wife Radene Marie Cook, a fellow patient with severe constant pain who became my best friend. Yes, Doug is her caregiver. He has helped Radene navigate the hell that is Intractable Pain since 2000. Unlike most spouses, he stayed after her injury instead of fleeing in terror. The vows they exchanged actually meant something. Though it’s truly sad, loved ones leave when someone gets seriously ill and doesn’t get better. But not Doug. For that reason alone, he is exceptional.

That’s just where the story begins, however. Doug Cook has a quiet way about him that somehow speaks volumes, the more you get to know him. I’d know him for a while before I really saw Doug in action, at the 2010 Women In Pain Conference. Though Radene & I helped put the conference together and were also speakers, Doug Cook was the one who was a huge part of the success of the event.

He arrived hours early, bringing art and other supplies. Doug backed up his SUV, unloading and arranging everything, including beautiful art that was created for the event by For Grace’s Artist in Residence, Radene Marie Cook. Afterward, he spent at least 90 minutes aiding CEO John Garrett with conference design/setup, moving the large conference tables and nearly 200 chairs, ensuring there was plenty of room for everyone to move freely through the space. Even as the event was about to begin, Doug focused on helping people get from the parking lot to the registration area. (Myself included!)

At that point, it hit me. Doug was caring for everyone–ensuring all the people who needed help got it. He continued his efforts throughout the day, helping anyone who needed it. Holding doors for people, moving chairs so that anyone with a wheelchair did not have difficulty getting where they needed to go… doing anything people needed help with.

In his quiet way, Doug has helped make the event a seemingly-effortless success. Not because he was paid to do so–in fact he has volunteered his time. Doug Cook is one of those people with a huge heart; a natural-born caregiver. This innate quality is extraordinary in today’s world, to be sure.

And the conference is just one day among the thousands where Doug gives and gives and gives. When he isn’t assisting Radene, his parents or mother-in-law–or working a full-time job–Doug dedicates a great deal of his time to helping others. He’s been active in his community for many years, doing things like painting over graffiti and ensuring the neighborhood is safe. He spends much of his free time making the world a better place, because that’s who he is.

In 2011, Doug Cook received a Shire BRAVE Award for caregivers. The BRAVE Awards are the first and only to honor the courage and dedication of non-professional caregivers, the everyday heroes who provide regular and consistent care for other people. Out of nearly 400 nominations, Doug and 14 others were honored. Read more about the annual award at http://www.shirebraveawards.com.

In addition to being an award-winning caregiver, Doug has also become a dedicated advocate and speaker. Doug spoke about caregiving at two national conferences in 2012, including the Woman In Pain Conference.

Caregiver. Advocate. Speaker. Award-Winner. Community Leader. Doug Cook is an ‘unsung hero’ that deserves to have his praises sung today and everyday.

So Doug, thank you for all the things you’ve done and continue to do–great and small, noticed or not. Read more about Doug Cook in the caregiver story by ABC News.

About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.