Tag Archives: life with pain

Pain Patient Tip For Optimal Health: PROTEIN!

26 Jun

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!

JFK’s Pain Story: Rare Autoimmune Illness Caused Chronic Pain, Then Intractable

27 Sep

by Heather Grace IPJ Staff Writer

While many people believe President John F. Kennedy struggled with chronic pain after World War II, the truth is much more complicated. JFK’s health was far worse than anyone knew, as he struggled throughout his life with serious invisible illness.

While an accident in 1944 worsened his condition, JFK’s struggles with pain actually began in childhood. The former president’s medical records were only released publicly a decade ago. And in 2009, they were analyzed by Dr. Lee Mandel. The conclusions presented a lifelong battle with a very serious illness. His autoimmune disease, Schmidt’s Syndrome, could’ve even prevented JFK from serving in office, had he not received effective treatment early on.

Schmidt’s Syndrome is complex illness, that encompasses Addison’s Disease (adrenal insufficiency caused by abnormal cortisol levels), thyroid disease, diabetes and/or failure of sex hormones. People with Schmidt’s have low immunity to communicable illnesses–they’re always getting catching colds and flus. In JFK’s era, this could be life-threatening.

JFK was sicker than most children, suffering many illnesses and seemingly unrelated symptoms from birth onward. These include near constant infections in infancy, scarlet fever, ongoing diarrhea/nausea, joint pain and fatigue. He was in and out of the hospital numerous times.

Throughout his military career, JFK suffered in silence. He wore a back brace to stabilize his degenerating spine and hid how sick he was. Though he wrote letters home to tell his family how he was really doing, Kennedy refused to go to the sick bay for help. Later in life, severe back pain caused President Kennedy to use crutches for years of his life, even while he was a Senator.

JFK had multiple surgeries on his back. The second operation was life-threatening, because his adrenal fatigue meant recovery would be much more difficult. Family members did not think it was safe to proceed. JFK’s resolve to be well and not live a lifetime in agony is what convinced him to go through with it.

In time, despite excellent care, the seriousness of his condition caused JFK to develop Central Pain Syndrome. This meant intense constant pain and severe nerve damage. Despite his charm and youth, on the inside President Kennedy had more health problems than many of his elder counterparts. Only when he met a physician who was able to manage his intractable pain was Kennedy able to truly thrive.

Before he was president, Kennedy’s care was revolutionized by specialist Dr. Jane Travell. Because her expert care managed his pain and autoimmune symptoms so effectively, JFK went on to lead the country without missing a single day due to illness. His pain management regimen included vitamins and minerals as well as prescriptions for pain, muscle relaxers and sleep.

To this day, similar regimens are used for intractable pain patients, so they can reclaim some semblance of a normal life. Though the pain and nerve symptoms never completely resolve for patients with intractable pain and/or Central Pain Syndrome, pain management means all the difference!

My story is very similar to JFK’s and while I don’t yet have a diagnosis for my autoimmune condition, I’m extremely fortunate to have effective pain care. If it was good enough for one of our most beloved presidents, surely it is appropriate for people living with severe constant pain today. Thanks JFK, for being revolutionary in more ways than the world knew in your day!

See the full story in Practical Pain Management, written by Forest Tennant, M.D.: http://www.practicalpainmanagement.com/pain/myofascial/autoimmune/john-f-kennedys-pain-story-autoimmune-disease-centralized-pain.


Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. Her intractable pain went from chronic to constant due to medical neglect of a serious yet treatable spinal injury. She now lives with Central Pain Syndrome and underlying illnesses. She Co-Manages Intractable Pain Patients United, has been Technical Director/Guest Speaker at For Grace’s Annual Women in Pain Conference. She is also a Pain Ambassador for the U.S. Pain Foundation.

Additional Resources: http://www.thepainstore.com/articles.html
http://thepainstore.blogspot.com · http://www.ippu.info

© 2012 Intractable Pain Journal & Heather Grace. All rights reserved.

Life is Precious & Short: Gather Ye Rosebuds While Ye May

26 Aug

Gather Ye Rosebuds While Ye May
By Robert Herrick, 1591 – 1674
.
Gather ye rosebuds while ye may,
Old Time is still a-flying:
And this same flower that smiles today
To-morrow will be dying.
.
The glorious lamp of Heaven, the sun,
The higher he’s a-getting,
The sooner will his race be run.
And nearer he’s to setting.
.
That age is best which is the first,
When youth and blood are warmer;
But being spent, the worse, and worst
Times still succeed the former.
.
Then be not coy, but use your time,
And while ye may, go marry:
For having lost but once your prime,
You may for ever tarry.

“Advocating for Another” Carnival 2012 – Day 6

by Heather Grace IPJ Staff Writer

Purple RosesThis poem is a great one to illustrate how fleeting time is. For people with chronic illness, this is a sentiment we know all too well. For us, the “good ol’ days” are all the more brief.

Having lived with chronic pain since 1999, I lost a lot of my youth. I had no idea that my youth would be stolen from my grasp all too soon. I was barely 26 when I first visited a doctor, complaining of pain in my arm, and increasing headaches. I didn’t know the entire problem was coming from my neck. That would take many more years of increasing pain, stress and difficulty with everyday life to uncover.

By the time I realized my youth had melted away, I was very ill. Looking back to see what I had lost, I was really sad. And angry. I had spent most of “good years” working my ass off between school, work and writing for a newspaper. I didn’t even stop to smell the roses, much less gather them. If I think about it for too long, it destroys me. (Tears are already crashing down my cheeks as I write this…)

It’s not easy to look back with regret, no matter the circumstance. But is all the more intense when you realize the rest of your life will be spent in constant, severe pain. Obviously, I wish I had the ability to go back, and goof off. Be a kid! Gather to my heart’s content! Be irresponsible… crazy. Stupid, even!

Instead of being a carefree kid, I look back on a lot of hard work: the 12-15 units/year I took throughout college, the late nights in the newsroom and the days coming home smelling like pizza… All of this, to get an AA and two BAs in 5 years time. Even while I was starting to feel really crummy, I was still in gung ho education mode. When my pain went from chronic to intractable, I was in the middle of my MBA program, trying to figure out how to complete my degree! I was convinced I’d be getting my life back soon, so I pushed myself to finish that degree, with help from the ADA office.

Ironically, it was all for nothing. These are degrees that I cannot even make use of today! Truthfully, I feel cheated. I’m so incredibly Type A that even now, I can’t help being hard on myself about making what seemed like wise decisions for my future! I focused so intently on my future, because I wanted out of the crappy situation I was born into… To know that I would never have to go back there. That I could depend on myself, and never have to ask them for anything ever again.

None of it mattered. I’m still broke on the verge of losing everything. I’m still considering whether I should ask them for help or not. And, I’m still feeling helpless and scared like I never wanted to be again. It sucks. To be upset that I “wasted” my youth on education is not a story you hear everyday! But, that’s life with chronic pain/chronic illness. You’re never quite the same as the normal people.

While I am by no means recommending that anyone drop out of school, I do think everyone should spend more time doing things that make them happy, whenever possible. Please just re-read the poem. Don’t put off anything that you value… even if it’s being silly with friends or taking the trip of a lifetime. You don’t need me to light a fire under you, but maybe this was a good reminder.

You may try to convince yourself that there’s all the time in the world to do the things you want to do. In your heart, you know there isn’t–I didn’t have to tell you. It’s a simple truth, but in our busy lives, we forget it sometimes: you never really know what the future will hold. So, what’s holding you back?

These days, I am happy with a “good” day where the pain isn’t too intense and I can do something that’s important to me. When I have the chance to really laugh out loud, that’s a great day. A day when I can forget about the pain for even a minute–that’s a spectacular one!

So, come on, it’s your turn. Happiness is waiting. What will you give yourself permission to do just for you? You’ve been thinking about it… now go out there and do it!

The above blog entry is part of a week-long series created by WEGO Health “Advocating for Another” Carnival 2012. You may follow my blog here, and see me on Twitter @IntractablePain. Check out other entries: #A4AMONTH.

Gather Ye Rosebuds While Ye May is available freely, in the public domain.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

Life with Nerve Pain: True Story of the Princess & the Pea

25 Aug

“Advocating for Another” Carnival 2012 – Day 5

by Heather Grace IPJ Staff Writer/Storyteller

Have you heard the story of The Princess and the Pea? The princess suffered a lot more than discomfort and lack of sleep from a tiny green pea being under her mattress. There’s a lot more to the tale. You haven’t heard the whole story… Until now.

In this fairytale, learn how facing the reality of her nerve pain changes a very sick little girl into the princess she was meant to be.

Go ahead… Curl up and listen, just like you did when it was “story time” as a child:

True Story of Princess and the Pea (MP3)

Feel free to share this story with children who have chronic pain, intractable pain and especially nerve pain. And, if you live with pain, this fairytale may you help explain to children what people with chronic pain go through. I look forward to your comments. Enjoy!

The above blog entry is part of a week-long series created by WEGO Health “Advocating for Another” Carnival 2012. You may follow my blog here, and see me on Twitter @IntractablePain. Check out other entries: #A4AMONTH.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

The End of American Pain Foundation–A New Beginning for Pain Advocacy

10 May

The American Pain Foundation may have come to an end, but the advocacy efforts of APF’s Action Network will be reborn.

by Heather Grace, IPJ Staff Writer

While I by no means speak for the American Pain Foundation nor the Action Network Leaders, as a Leader myself, I *do* realize what a shock the loss of APF is to people with pain across America, and worldwide. (See APF notice regarding the closing, released May 9.) I think it’s important to note that in addition to the work that is being done to re-home the vast APF database of articles and information as was noted on the APF web site, the advocacy efforts will also continue.

Please know that there are very capable individuals working toward solutions that will ensure the vibrant pain community that existed on APF’s web site(s) is rebuilt. We, as Action Network Leaders are doing all we can to support the rebuilding efforts, as well as our ongoing advocacy projects. Behind the scenes since Tuesday the Action Network, APF’s grassroots advocacy team, have been discussing future plans. The volume of people who have stood up and asked “What can I do to help?” are a testament to the dedication of this wonderful group of advocates.

Even more importantly, we have continued speaking out for the rights of people with pain, and we will continue to do so in every possible medium. We have come together like never before and are determined to continue our work as advocates via Facebook, Twitter, blog/article and interview, to bring a promote a message that represents all people with pain. Each of the Leaders strongly believes that all people have the right to timely, appropriate and effective pain care.

While the loss of APF will be felt for some time, it does not change the dire situation for all people with pain in America nor the need for pain advocacy. Pain is a national health care crisis, a hidden epidemic, and the problem continues to worsen. This is why the Action Network was formed, and continues to grow. We are a dedicated network of volunteer advocates from over 35 U.S. states and Puerto Rico. We are people living with pain, caregivers and health care providers who work collaboratively with other advocates, professionals and organizations to transform pain care in America through grassroots advocacy.

Yes, this is a difficult time for everyone, but I hope all people impacted by pain will see this as an alarm being sounded. If you have the passion to make a difference—please do so. Join this fight. It’s time to stop believing someone else will do it–it’s your cause just as it is my cause. Please show your support via the Action Network California Facebook page. If you feel strongly about the pain advocacy movement, LEAVE A COMMENT ON THIS PAGE letting the Action Network know you are interested in advocacy. We need your help now more than ever!

With all the passion of an advocates heart,
Heather Grace
California Action Network Leader
http://www.facebook.com/APFCalifornia
Twitter: @IntractablePain


Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. Her intractable pain went from chronic to constant due to medical neglect of a serious yet treatable spinal injury. She now lives with Central Pain Syndrome and underlying illnesses. She Co-Manages Intractable Pain Patients United, has been Technical Director/Guest Speaker at For Grace’s Annual Women in Pain Conference. She is also a California Leader for the American Pain Foundation.

Additional Resources: http://www.thepainstore.com/articles.html
http://thepainstore.blog·spot.com · http://www.ippu.info

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

The American Pain Foundation Closes…

9 May

Posted on the American Pain Foundation web site on Tuesday, May 9, 2012:

With deep regret and heavy hearts, we sadly inform you that due to irreparable economic circumstances, APF must cease to exist, effective immediately. On May 3, 2012, the Board of Directors formally voted to dissolve the organization.

The Board and staff have worked tirelessly over many months to address a significant gap between available financial resources and funds needed to remain operational. Unfortunately, the economic situation has not changed in any meaningful way, despite our best efforts.

APF hopes to be able to transfer content from various information, education, and support programs to other organizations so that you may continue to benefit from the value these programs have provided to thousands of individuals and families across the country.

Your personal experiences in living with pain and seeking compassion, empathy and medical care – often against the odds — have driven our efforts over these many years. This includes enactment of key provisions of the National Pain Care Policy Act in the Health Reform Bill that led to a landmark report issued in 2011 by the Institutes of Medicine. This report documents the shocking numbers of US citizens that live with pain and calls for immediate changes to address gaps in care. Despite this, the current climate towards improving the plight of people with pain in the US continues to be precarious and hostile.

As you unfortunately know, the need for public outcry around the needs of Americans struggling with pain conditions is greater today than ever before in light of the multi-front assault occurring daily on our right to dignified care. Misguided state and federal policies are impeding access to appropriate and reasonable medical care for people struggling with pain, and deterring even the most compassionate medical providers from treating anyone with pain conditions.

It is therefore critical that each of you raise your voices singularly and together to demand the care you deserve. It is only by continuing to demand attention to the ever-worsening barriers and unacceptable suffering that change will occur.

Elected officials, policy makers, and the media need to keep hearing from each and every one of you so they are not allowed to walk away from the consequences of this over-looked public health and medical problem. Please know that although APF will cease to exist, the resolve and commitment among individuals on the Board and staff remain strong.

An Historic Event: IOM Releases “Relieving Pain in America” Report

1 Jul

July 1, 2011

by Heather Grace, IPJ Staff Writer

Anyone affected by chronic or Intractable Pain knows the heartache, stigma and shame often experienced. Even when speaking to medical professionals or loved ones, we are doubted, judged and sometimes even accused of wrongdoing. Why? Merely because we state our symptoms–the main one being an excruiating degree of pain that no one should ever have to live with.

Yet, far too many people suffer in silence, choosing to just ‘deal with it’ because the alternative is a long, winding hellish road… filled with anger, sadness, disappointment and grief. When the pain gets to be too much, some make the terribly disturbing choice to end their own suffering–via suicide.

It’s a story that is all too common in the pain community. And yet, this deplorable level of misunderstanding, medical neglect and unnecessary death does not exist for sufferers of any other disease.

A ground-breaking report that studied pain from many angles was released on Wednesday, and the buzz is generally positive. Will attitudes toward pain change in the not-so-distant future? Only time will tell, but it is about time that pain is seen as the devastating disease that it is.

In addition to defining chronic pain as a disease,the Institutes of Medicine’s (IOM) Relieving Pain in America notes some very important facts about pain. The two most noteworthy tidbits?

    1. Chronic pain affects an estimated 116 million American adults—more than the total affected by heart disease, cancer, and diabetes combined.
    2. Pain costs the nation up to $635 billion each year in medical treatment and lost productivity—an amount equal to about $2,000 for everyone living in the United States.

IOM’s Committee Advancing Pain Research, Care, and Education reviewed literature, statistics and research; they also spoke to medical experts and members in the pain community in five cities from November, 2010 through April, 2011. The resulting report includes 328 pages of detailed Findings and Recommendations. The plan for this report? Congress will use the recommendations to revamp its approach toward the treatment of pain, in an effort to make things better for pain sufferers now, and in the future.

Some of the key findings from the report are found on page 1-9, Box 1-4:

Pain By The Numbers

  • 116 million—number of U.S. adults with common chronic pain conditions
  • $560 to 635 billion—conservative estimate of the annual cost of chronic pain in America
  • $99 billion—2008 cost to federal and state governments of medical expenditures for pain
  • 60 percent—percentage of women experiencing their first childbirth who rate pain as severe;
    18 percent of women who have caesarean deliveries and 10 percent who have vaginal deliveries report persistent pain at 1 year

  • 80 percent—percentage of patients undergoing surgery who experience postoperative pain; fewer than half report adequate pain relief:
    • Of these, 88 percent report the pain is moderate, severe or extreme;
    • 10 to 50 percent of patients with postsurgical pain develop chronic pain, depending on the type of surgery; and
    • for 2 to 10 percent of these patients, this chronic postoperative pain is severe
  • 5 percent—proportion of American women aged 18 to 65 who experience headache 15 or more days per month over the course of 1 year
  • 60 percent—percentage of patients visiting the emergency department with acute painful conditions who receive analgesics:
  • median time to receipt of pain medication is 90 minutes, and
  • 74 percent of emergency department patients are discharged in moderate to severe pain
  • 2.1 million—number of annual visits to U.S. emergency departments for acute headache (of 115 million total annual visits)
  • 62 percent—percentage of U.S. nursing home residents who report pain:
    • arthritis is the most common painful condition, and
    • 17 percent have substantial daily pain
  • 26.4 percent—percentage of Americans who report low back pain lasting at least a day in the last 3 months

The Recommendations, which are detailed starting on page S-13 of the report, are divided up between aspects that should be put into effect right away. “IMMEDIATE: Start now and complete before the end of 2012.” The others? “NEAR-TERM AND ENDURING: Build on immediate recommendations, complete before the end of 2015, and maintain as ongoing efforts.”

Immediate efforts include:

  • Create a comprehensive population-level strategy for pain prevention, treatment, management, and research
  • Develop strategies for reducing barriers to pain care
  • Support collaboration between pain specialists and primary care clinicians, including referral to pain centers when appropriate
  • Designate a lead institute at the National Institutes of Health responsible for moving pain research forward, and increase the support for and scope of the Pain Consortium

Ongoing plans include:

  • Improve the collection and reporting of data on pain
  • Promote and enable self-management of pain
  • Provide educational opportunities in pain assessment and treatment in primary care
  • Revise reimbursement policies to foster coordinated and evidence-based pain care
  • Provide consistent and complete pain assessments
  • Expand and redesign education programs to transform the understanding of pain
  • Improve curriculum and education for health care professionals
  • Increase the number of health professionals with advanced expertise in pain care
  • Improve the process for developing new agents for pain control
  • Increase support for interdisciplinary research in pain
  • Increase the conduct of longitudinal research in pain
  • Increase the training of pain researchers

Overall, the approach seems like an effective plan. The execution of the plan will be the part that makes all the difference. If handled well, pain care could be revolutionalized. If led by people who are not truly knowledgeable, who let fear and a desire to prevent addiction rule their decision-making, nothing will have changed.

The future looks bright–but it won’t work unless people with pain share their stories, loud and often. Tell the IOM what you think of this report, and how you want to see pain care change. Email them at wwwiom@nas.edu.

It is time people finally knew the truth: We are not Nurse Jackies or Dr. House’s. We are, in fact, just like you or anyone… but, we cope with an unrelenting pain, every minute, every day. Don’t we deserve some real help, now, after all this time in the dark ages of pain care?

Having attended the IOM’s fourth meeting, in March, 2011, I am so pleased to see the progress made for pain sufferers everywhere. This report makes people like me hopeful, for the first time in a long time, about our future.

Testifying before the committee was my first big step into the spotlight, regarding my pain. I was outside the warm, welcoming arms of other people affected by pain. However, I was able to stand there proud, and tell my story honestly and openly. It felt great! Best of all, I was able to share with the committee some very important research from Dr. Forest Tennant, the Intractable Pain Specialist who saved my life. (This important research can be found in the article Objective Signs of Intractable Pain: Constant Severe Pain Symptoms ARE Diagnosable.)

What did I learn from my experience? Everyone who has been affected by pain should do what they can to get involved, in this way. These days, being your own Advocate isn’t enough. If you really want to make the world a better place for pain treatment, you have to be willing to work side-by-side with people just like you, creaing a common voice for the pain patient.

How do you do this? Consider becoming a Leader with the American Pain Foundation Action Network (like I did, thanks to my wonderful friend, Radene Marie Cook!) Visit their new and improved site at http://www.painfoundation.org/get-involved. Or, fill out the Advocacy Survey now. This link allows you to join APF for free, instantly; it will also allow you to connect with local APF Leaders, so you can learn more information about advocacy efforts in your area.


Want more information about the IOM Report? Here’s a sampling of media coverage:

Chronic pain affects 116 million Americans, says IOM report
Los Angeles Times – Marissa Cevallos
http://articles.latimes.com/2011/jun/29/news/la-heb-chronic-pain-iom-20110629
Pain is more than just a complaint — it’s a public health issue. And the time has come to do something about it. So concludes a new report from the Institute of Medicine, written at the…

Report: More than 100 million suffer lasting pain
Washington Post – Associated Press
http://www.washingtonpost.com/national/health-science/report-more-than-100-million-suffer-lasting-pain-steps-needed-to-end-stigma-and-improve-care/2011/06/29/AGJcSjqH_story.html
(AP) — Nearly a third of Americans experience long-lasting pain — the kind that lingers for weeks to months — and too often feel stigma rather than relief from a health care system poorly prepared to treat…

Report: Chronic, Undertreated Pain Affects 116 Million Americans
TIME – Maia Szalavitz
http://healthland.time.com/2011/06/29/report-chronic-undertreated-pain-affects-116-million-americans/
Serious, chronic pain affects at least 116 million Americans each year, many of whom are inadequately treated by the health-care system, according to a new report by the Institute of Medicine…

Pain Costs U.S. $635 Billion a Year: Report
U.S. News & World Report – HealthDay News
http://health.usnews.com/health-news/family-health/pain/articles/2011/06/29/pain-costs-us-635-billion-a-year-report
Pain afflicts at least 116 million adults in the United States each year and costs the nation $560 billion to $635 billion annually in medical and economic costs, according to an Institute of Medicine report released Wednesday…

Don’t blame people for their pain, report says
CNN – blog
http://thechart.blogs.cnn.com/2011/06/29/dont-blame-people-for-their-pain-report-says/
Chronic pain – no matter where it strikes – is a problem not many of us really understand. It can sometimes be dismissed and not effectively managed by health care professionals. Pain is widespread, but underdiagnosed and undertreated, according to a…

116 Million Americans Suffer Chronic Pain, Huge Personal And Economic Burden
Medical News Today – Christian Nordqvist
http://www.medicalnewstoday.com/articles/230018.php
Not only does chronic pain affect the quality of life of over 116 million Americans, there is a massive economic burden too, estimated to be between $560 and $635 billion each year for the country, researchers from the Committee on Advancing Pain…

Relieving Pain in America: A new report from the Institute of Medicine
Stanford Scope – blog
http://scopeblog.stanford.edu/2011/06/relieving-pain-in-america/
The past couple of days have been hard. Struggling with work deadlines, I was also trying to comfort my sobbing six-year-old son as he suffered for hours through what seems suspiciously like his first migraine. Hands tied, I could do little except…

The yearly cost of chronic pain is excruciating
msnbc.com – Alina Selyukh
http://www.msnbc.msn.com/id/43577789/ns/health-health_care/
WASHINGTON — Addressing chronic pain, a hard-to-treat yet highly common condition, costs the United States as much as $635 billion a year and requires a much more comprehensive strategy for curbing lost productivity and healthcare…

Chronic Pain: 1/3 of Americans Live With It, According to IOM Report
ABC News – Susan Donaldson James
http://abcnews.go.com/US/chronic-pain-americans-live-iom-report/story?id=13950802
Cynthia Toussaint has reframed her life after decades of chronic pain and now helps others. For a decade after a 1982 ballet injury, Cynthia Toussaint was confined to her bed, writhing in pain from muscle spasms, unable to walk or to live a meaningful life. Crippled by an array of illnesses, including chronic fatigue syndrome and fibromyalgia, the North Hollywood, Calif., singer and dancer was eventually diagnosed with Complex Regional Pain Syndrome…

Chronic Pain Costs Have Skyrocketed, Report Says
ThirdAge – Emily Jacobson
http://www.thirdage.com/news/chronic-pain-costs-have-skyrocketed-report-says_06-29-2011
Chronic pain costs the United States up to $635 billion a year, and a new government report suggests it requires a much more comprehensive strategy to make up for productivity and healthcare costs. About one in four US adults have chronic pain each…

(Thanks to Mary Bennett, APF, for the news links.)

The Institutes of Medicine’s (IOM) full Relieving Pain in America report can be downloaded for free at http://www.iom.com/relievingpain.

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

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