Tag Archives: pain care

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!

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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 Dark Side of Pain: Serious Challenges We ALL Face

23 Aug

“Advocating for Another” Carnival 2012 – Day 3

by Heather Grace IPJ Staff Writer

Life with chronic or intractable pain can be extremely challenging. There are so many variables that are simply not a factor for people with other illnesses. Pain is a disease that is widely misunderstood, and this breeds all kinds of problems. Here are the top 3 concerns we all face:

1. Effective Treatment

Diseases like diabetes or high blood pressure have simple treatment protocols. Nearly any doctor can treat a patient with elevated blood pressure or elevated blood sugar. Sadly, pain is a different story. Though most patients end up in front of a physician because they are experiencing some form of discomfort, treating pain has become a crisis worldwide.

The Journal of the American Geriatric Society (October, 2005) found that doctors generally receive only a few short hours of training in how to treat and cure pain. They were especially uninformed on the treatment of musculoskeletal, neuropathic and low back pain. Doctors also don’t receive training in multidisciplinary and alternative treatments via medical school.

Trust Me The issue? Doctors are expected to learn more about pain and examining physical complaints while in residency, as well as in the early days of practice. This creates a huge gap in knowledge. Lack of knowledge makes it hard for doctors to know how to treat patients. Often, they just do what their mentors show them to do, and nothing more. If that mentor doesn’t feel comfortable treating pain, then neither will the new physician.

Pain sufferers acknowledge that pain care is in crisis. One survey of over 1,000 people by Purdue Pharma was quite revealing: 2/3 of pain patients said that their over-the-counter medication wasn’t working, while over 50% said their prescription medication wasn’t working. On average, people with pain had been to three doctors and taken four types of medication without success.

Some doctors are ill equipped to treat pain, while others are simply afraid. Doctors face scrutiny from medical boards, the Drug Enforcement Agency (DEA) and even insurers. Whatever the reason, I know many people who have spent years with untreated or undertreated pain. Many more are currently suffering. Writhing in pain, many pain sufferers are just trying to survive day to day, and sometimes hour to hour. Pain treatment is in crisis, and it is only getting worse each year.

2. Media Backlash

Media Attacks The media is a huge barrier to effective pain care. We’ve all seen the headlines. It seems there are overdose deaths all over the country everyday. The truth is, the number of deaths each year isn’t substantially increasing. About 15,000 people per year in the last several years have died with opioid pain medication in their system. Given the fact that chronic pain impacts upwards of 100 million people in the U.S. (IOM, June 2011), less than 2% of the country’s chronic pain patients die each year with opioid pain medication in their system. (See more on the so-called opioid “epidemic” at http://updates.pain-topics.org/2011/11/are-opioid-pain-reliever-deaths.html.)

The pervasive negative messages impact pain care on so many fronts. It doesn’t matter if prescription pain medication saves lives or not. As soon as an effective treatment is classified in news reports as addictive, dangerous and/or deadly, access to treatment becomes an even greater problem–even if the stories aren’t true. Media reports are believed, especially when the same information is repeated all over the place. Once a damaging story hits “the wire,” it spreads like wildfire. The biggest problem? The public believes news reports, never questioning their validity.

OTC medication Even if a pain sufferer hasn’t seen all the headlines, family members are sure to voice their concerns. Chronic pain patients will then feel great shame about their need to take pain medication. Eventually they stop talking about their pain, and especially their pain treatment. Worse yet, the news reports make many believe that taking prescription pain medication is too risky. Patients often use alternatives like acetaminophen, ibuprofen and NSAIDS in large quantities. Even though this can damage internal organs, as pain increases, patients take larger and larger doses of these seemingly harmless over-the-counter medications.

The problem is compounded when the constant media bombardment intimidates physicians. Doctors become hesitant to prescribe pain medication, afraid of a backlash from their medical board or the DEA. Doctors also fear lawsuits from concerned family members, especially when a pain patient dies–even if the death is unrelated to the treatment.

Worst of all, the accurate stories in the media are often buried. There is so little information that doesn’t fall victim to sensational pain medication stereotypes. For stories you can count on, I recommend http://www.pain-topics.org and http://www.ppmjournal.com.

3. Support System Fades Away

We all have a really rough time dealing with the disease of pain. Not just because pain takes a lot out of us, both physically and emotionally. Sadly, that’s not the worst part. There is an awful, unspoken trauma people with pain experience when loved ones–the people that we believed would be there for us 100% no matter what–fade from the picture. They disappear when pain sufferers need their support most. If you’ve walked down the dark and uncertain path that is chronic pain, you know what I am talking about… People leave.

No matter how wonderful our friends and family are, they may not be by our side through the worst of our pain. Seriously ill people are often deserted by the same loved ones who said they’d always be by our side. It can be jarring to lose all sense of normalcy to pain, only to lose even more… when our support system becomes rocky.

We’ve all felt hurt and confused when our supposedly closest allies are not willing to be there through the rough spots. You realize that when people ask “how are you doing?” they don’t want the gory details. Instead of being a shoulder to cry on, most people want/expect to hear, “fine” in return. The losses really add up as we find out that so many people we thought were close friends were really just casual acquaintances.

Everyone I know who has chronic or intractable pain has also lost friends and family because they misunderstand pain. That’s the most devastating part. They love and trust you one moment, and once the diagnosis is shared, all faith in you is dashed. Instead of telling you their concerns, doubt swirls within your loved ones. They’re worried you’re a faker, or an attention-seeker, or maybe just lazy. Or worse. Sometimes they take media reports to heart and believe you’re crazy, or an addict. Or both. Losing people this way us a deep and painful wound.

Even people who believe you may leave. Some have a hard time seeing you suffer, in pain without any answers for years of your life. It hurts them, and it also makes them uncomfortable to be so powerless–unable to help. Sometimes, they fade away because it is easier than to be feel sad and helpless all the time.

Navigating the horrors of pain can be devastating! The challenges of life with chronic/intractable pain are many. It is not by any means easy to live with such a serious yet misunderstood illness. Being tough is a requirement–pain takes over every bit of who you once were, and forces you to begin again. If you’re lucky, you see some bright spots among these challenges. You fight bravely through the worst of it, and learn countless valuable life lessons. In the end you realize there is only one option in taking on such a challenge: if you can’t beat the pain–you learn to live with it, on good days and bad.

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.

Portrait of Activism: Pain Advocates Meet with Los Angeles DEA

21 Aug

“Advocating for Another” Carnival 2012 – Day 1

By Heather Grace, IPJ Staff Writer

Being an advocate in the pain community can be challenging. Much of the country has a stigma against pain care. The media teaches the public that lifesaving medications are dangerous and addictive–to be feared.
Often, that requires pain advocates to be incredibly brave. We don’t just speak up, and go against the grain by telling people how much our lives have improved by received adequate pain treatment.

We also act. How many people with pain would willingly walk into their local DEA office and openly discuss their pain care with federal law enforcement? I don’t know how many. But, we did.

Myself & 3 other dedicated advocates met with the DEA in Los Angeles to discuss how we could better work with them to build a bridge of understanding between patients & law enforcement.


Pictured are L to R: Heather Grace, Radene Marie Cook, Gina Libby and Doug Cook (members of the American Pain Foundation’s Action Network/Intractable Pain Patients United). Taken January, 2012.

People who live with chronic or intractable pain just want some semblance of a normal life. And the DEA wants to go after bad guys. Why would patients ever be suspects? You’d think it would be simple to tell the difference between a patient and a bad guy. Year after year, the line just seems to become more blurred.

The truth is, law enforcement isn’t taught what a patient is/does. They’re taught to hunt the bad guys-often deceptive, often going to great lengths to get pain treatments that should go to seriously ill people. So how does the DEA see a person with pain like any other sick person?

That’s where advocacy comes in. It’s our job to help them see us as victims in the drug war. And, that’s not exactly an easy task! Good patients, good doctors and even good pharmacies have been wrongly accused. And it can take thousands of dollars to prove your innocence. (In the case of patients, the degree of stress involved can also be life-threatening.)

It’s an important issue with no easy answers, but I’m glad we all worked together and got our meeting with the DEA. I think we made an impression by telling our stories and sharing our concern for other people, just like us. Obviously, a single discussion won’t change people’s hearts & minds. That’s why we never give up!

My fellow advocates are incredibly dedicated–doing all they can, fearlessly and tenaciously, for the benefit of all people with pain. I couldn’t be more proud to be a pain advocate!

The above blog entry is part of a week-long series created by WEGOHealth “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.

September is National Pain Awareness Month–What Will YOUR Focus Be?

21 Aug

By Heather Grace, IPJ Staff Writer

As August is nearing an end, we at IPJ are wondering what people with chronic and intractable pain will be doing to acknowledge the important month ahead. To many, September is just another month. But to people with pain, it can be a very meaningful and important time of year. September is National Pain Awareness Month.

Will you celebrate this month–being thankful for your continued health? Perhaps you’ll think about how lucky you are to have adequate pain care? Or will you focus on pain advocacy, recognizing that so few people have the pain care they desperately need? Maybe you’ll write a blog, share a video about your experience with pain, or make your voice heard in the media?

Please take a few moments to discuss National Pain Awareness Month here. Share what you’re doing to take care of yourself, as well as what you’re doing to help others. We’d also love to hear your hopes/dreams for the future of pain treatment.

And to all people with pain: We wish you a happy healthy September, filled with acceptance, support and understanding.

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

Effective Pain Management At Stake: 3 Ways To Address July 1 BCBS Policy Changes

13 Jun

by Heather Grace, IPJ Staff Writer

New Policy Threatens Fate of Pain Management

Blue Cross Blue Shield of Massachusetts (BCBSMA) will make sweeping changes to patients’ pain medication access beginning July 1. Because they are being treated for chronic or intractable pain, approximately 30,000 BCBSMA patients or just 1% of their members will not be impacted. Thankfully, people receiving treatment for serious medical conditions or are terminally ill will be permitted to continue to receive prescription pain medication.

This policy impacts the rest of the company’s nearly 3 million members–anyone who isn’t already receiving pain treatment. By limiting access to these medications, the insurer hopes to reduce the risk of addiction and also to keep medication out of the hands of people for whom the drugs weren’t prescribed. BCBS of Massachusetts is believed to be the first insurer in the nation to adopt this dramatic approach, taking the decision-making out of the hands of doctors who treat patients for pain.

This new policy will prevent Massachusetts’ pain management physicians from deciding what is best for their BCBSMA patients. Initially, patients can receive up to a 15-day supply of pain medication. They are also eligible for one refill of the 15-day treatment, for a total of 30 days worth of medication for pain. Beyond that, doctors must go back to the insurer for “mandatory review.”

From July 1 onward, whether patients receive care beyond the 30-day period will be in the hands of an advisory panel. Doctors must officially request the ability to extend pain treatment via the BCBS panel. I contacted the company and spoke to a Customer Service Supervisor who said the panel would take an estimated 24 to 72 hours to make a decision. Once a determination is made, the patient and his/her provider will be notified of the decision in writing. How long it will take for a ruling in reality is anyone’s guess.

I was also told that physicians were free to request the panel’s assistance on behalf of a patient during the initial 30-day treatment period. While BCBS may feel this will assist patients, ensuring there is no delay in their access to much-needed pain management, I have experienced pain treatment in the real world. It is doubtful that many physicians will go to bat for their patients until they have gone through the entire 30-day supply allowable under BCBS.

As every patient with chronic pain knows, each request for continued pain treatment requires a return trip to the physician. Doctors simply do not grant pain medicine refills to new patients unless they are seen face-to-face. Just how many additional trips to the physician will this new protocol require? It would appear, up to two more visits in the first 30 days. This could dramatically impact physicians as well as patients–further damaging an ineffective overburdened system.

Though only BCBSMA will adopt this policy July 1, it will likely have much broader implications. Each new restriction to pain management spreads like wildfire. (Ex. Washington State’s new pain medication prescribing limit of 120 mg per day impacted patients nationwide.) This 30-day policy may be used unofficially by other insurers. Some companies are probably considering adopting such a policy change officially. The truth is, this represents an alarming trend for the future of pain management.

As someone who’s been through the ringer, permanently disabled by a broken system, one thing is clear to me: those who are destined to need future pain care are in for a rude awakening. If you are concerned that changes like this one are endangering the future of pain management in Massachusetts and nationwide, MAKE YOUR VOICE HEARD! The time to act is now.

Concerned? Tell BCBS What YOU Think!

The problem with changes like this one? If successful, others will follow suit. The incidences of chronic pain are growing each year. Worse yet, so are the incidences of intractable pain, for which there is no known cure. Please, tell Blue Cross Blue Shield of Massachusetts what you think of these changes. Tell them what faulty health care has done to YOUR LIFE and YOUR FUTURE. Please contact them now in one or more of the following ways:

OPTION # 1 – Air Your Grievance Via The Appropriate Department

BCBS Appeals & Grievances Dept
1 Enterprise Dr
Quincy, MA 02171-2126
grievances@bcbsma.com
P: 800-472-2689
F: 617-246-3612

Please provide your name & phone number, as well as a member ID if you have one and contact the department via the method of your choice, above. NOTE: If you are a BCBSMA member, listing your member ID will help. They resolve member concerns within 30 days.

OPTION # 2 – Tweet Your Concern, Allowing For Public Discussion

Tell Blue Cross Blue Shield of Massachusetts what you think via @BCBSMAservice. Visit them on Twitter now: https://twitter.com/#!/BCBSMAservice. Discuss the future of #ChronicPain and #PainManagement!

OPTION #3 – Tell the CEO How The Policy Will Impact People

Call the local Blue Cross Blue Shield of Massachusetts office, Monday through Friday 8am-6pm Eastern at (617) 246-5000 and ask for Andrew Dreyfus. Calls for the CEO are put directly through to his assistant. Enough phone calls may prompt a second look at the policy Mr. Drefus instituted.

Please Take a Few Minutes–Share Your Story

Those of us who have been lucky enough to find access to effective pain management have been to hell and back in the process. It’s hard to find a pain doctor we trust, and more importantly, a doctor who trusts us! Tell BCBSMA what you went through/what you are going through because of policies like this one. Tell them why this change will hurt more people like you. It doesn’t take long. My story: It took me seven years, and in that time, I know many people with pain couldn’t take it any longer and chose to end their suffering through suicide. Believe me, I stood upon that ledge, and I wouldn’t wish that choice upon anyone. That’s how bad pain is–it’s a disease like any other. The problem is, very few people seem to understand that simple fact.

Please help BCBSMA understand what it is like to be suffering with intense chronic pain without effective pain management. It’s time everyone understood, so they would stop playing Russian Roulette with people’s lives. Denying treatment for a serious medical condition endangers patients on so many levels. There’s got to be another way to cut costs & maximize profits, doesn’t there?


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.

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