Tag Archives: appropriate 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!


Chronic Pain Patient In Crisis: Lifesaving Care Needed

4 Oct


This is my first time responding to any type of blog, forum, etc. This story hit home (Surprise! We’re Chronic & Intractable Pain Patients NOT Addicts)!

You explained my life to a “T”. I can feel my body dying. I dont know where to get help. The harder I try to find a good doctor, the worse it looks. As I am writing this, tears are rolling down my face. The suffering is not only affecting me, but also my children and wonderful husband. I am crying also because there are so many of us.

Please if anyone knows how I can get help let me know. I am at the end…only enough strength left in me to try ONE more time to get help,and this is only because I love my husband and children too much to give up. I dont know what to do, and I am so frightened. — Shannon (Original Post here)

Getting Help While In Chronic Pain Crisis
Answered by Heather Grace

Shannon: First & foremost, I’m so sorry for all you’ve been through, and all you continue to go through. And, I’m so glad you took a chance & reached out! That tells me you know you deserve better than what you’ve been given. And somewhere inside you, I think you believe it is possible for things to turn around for you, too. Because *it is* – truly!

I can feel the pain & desperation in your message, because sadly, I know where you’ve been. Yes, it feels like a crushing nightmare that you cannot awake from…

Not only are you suffering physically–all the people who are supposed to help you are NOT doing so. Not doctors, perhaps not even some loved ones. Pain is a cruel, cruel illness–it is so misunderstood. The toll it takes on one’s health is serious enough. Add to that the torment of being judged, doubted and mistreated… It DOES feel like it’s more than anyone can or should be able to bear. And, for some, this suffering IS too much to take.

Intense pain caused by injury or illness does lead many to thoughts of suicide. It’s the lack of treatment when a person gets to that point that I believe pushes people over the edge. Pain KILLS.

I know, because I have been on that ledge, Shannon, right where you now stand. I tried twice to step off it. Twice a voice somewhere inside me said “NO! You can’t. It’s *not* over.” Like you, I told myself, ‘FINE. Just one more try. If this doesn’t help, I can still end my pain on my terms.’

And when I decided to try once more, a strange set of circumstances lead me to the perfect doctor *and* the perfect support system. Ironically, it was a stranger who helped me, too. He gave me the phone number of the doctor who saved his wife’s life. What a gift that was! And here I am.

As hard as it is to do, you have reached out your hand to ask for help. Don’t you see how perfect it is that you asked ME to help you find your way out of this darkness? I was you, Shannon, in 2007. Though it was just five years ago, I am now a completely different person.

I now see the power of what ONE PERSON can do. Pain Advocacy has become my life. I do what I can every day, hoping to repay the kindness that was shown to me when I needed it most. Your letter really touched me, and I want to give you all the help I can, so you can be well again.

Though you have every doubt in the world, though is the hardest fight you’ve ever faced… Even if you don’t see if yet, YOU ARE A SURVIVOR. You ARE strong enough, you CAN do this. I know from personal experience! It can and will get better for you with the right help. A doctor who “gets you” makes all the difference. I will help you find the right treatment to save your life.

Two things to get you started:

(1) All patients without effective care may benefit from the advice given in the article, Tips & Secrets: How to Find a Good Pain Management Doctor online at http://thepainstore.blogspot.com/2010/10/how-to-find-good-pain-doctor-tips.html. This is based on information I have used, myself–as well as tools I’ve used to help others.

(2) It becomes especially important to ensure physicians see that you are suffering with severely pain. How do you do this? Provide current and prospective physicians information on the OBJECTIVE signs of severe pain: http://pain-topics.org/pdf/Tennant-PainSigns.pdf. Medical professionals often refer to pain as the 5th vital sign, but how many actually look for it in their patients? So many doctors believe pain is a subjective complaint. In fact, there are many signs!

Going forward… Know that effective pain care does exist. And, I will help you find it.

All I ask of you, Shannon: Promise me you will trust me enough to hang on. Not just for your family, but because YOU deserve a chance at life again. To really live. You will get there! And one day, you will be so well, you may find yourself in my shoes… helping someone else to survive this terribly difficult disease.

If at any point you feel like you are in need of immediate attention, please call 9-1-1. There is also the National Suicide Prevention Lifeline: 1-800-273-8255. I sincerely hope you don’t get to this point, because I believe you want help as much as you truly deserve it. Hang in there, ok?

I’ve emailed you my contact info. Feel free to write back or contact me via Twitter @IntractablePain, anytime, as well.

Take care Shannon, and I’m so glad you reached out! I’m hoping to hear from you very soon. Hopefully today… I’m here for you.

Hugs, Heather G.

UPDATE December 2012: I am happy to report than Shannon is doing much better, under the care of a specialist who is working to resolve her intractable pain and related conditions. I’m so pleased–everyone deserves appropriate access to care for their chronic & intractable pain!

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

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 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.

Pain Advocacy: United We Stand, Divided We Disappear

30 Sep

by Heather Grace, IPJ Staff Writer

As Pain Awareness Month draws to a close, I’ve been thinking a lot about the overriding message… Why it is we all work so hard and what we are trying to accomplish. Pain advocacy is so important, especially with the many mixed messages out there, always confusing the public about whether there are any actual people with pain, or whether we are all a bunch of wanna-be junkies.

I really think the tide is turning, and this year, 2011, was an important one. The IOM report did a lot to open people’s hearts and minds. And the work of organizations both national and local, helped a lot to foster a positive message.

This is why our fight is so important, and this is the start of something really important, for all people with pain. The future can be a really bright one if we all realize that advocacy isn’t something for someone else to do. Advocacy is important to all the people who have been hurt, mistreated, suffered due to negligence or even ignorance, about the proper way to treat chronic and Intractable Pain.

I heard this quote in a documentary about being deaf in today’s world. It was talking about how easy it was for society to disregard the deaf. That as society grows, deaf people tend to blend in and eventually become outsiders. How true that is, for all people with pain, as well. Just as you cannot tell someone is deaf just by looking at them, you cannot tell—in most cases—that someone has chronic or Intractable Pain. Though our illness may be invisible to many, our passion, our drive and our voices ARE NOT.

I think that the reason this fight has touched us all so deeply, and brought us into advocacy with both feet is simple:


The ways in which we’ve all suffered indignities–and even just indifference–makes it easy to see how small our world can become if we don’t fight for better pain care, as well as acceptance.

We must stand up and be counted, and tell everyone about our experiences… Tell them all how difficult it has been to live in our world. We must keep fighting until the everyone else with pain is able to join the fight, alongside us!


For those of you already doing this important work, I am grateful! To my fellow advocates, I want you to know that I treasure your contributions to this important cause, and understand the difficult choices you face. I see the work you are doing, to make the world a better place for all people with all types of pain. It surprises me, each year, how hard everyone fights, through their own serious illness, to help others… the 116+ million of us with chronic pain.

Thank you for working through your own difficult circumstances, for braving the toughest days, doing what you needed to do, to be there, even the times when you really should NOT have been, because the pain was so severe. It is both heart-wrenching and inspiring, that you would risk your own health, sacrificing for this cause, for all of us. I am so thankful to work with people who are as dedicated as I am, and willing to give their all, literally.

As October approaches, I hope you will all take the time to relax, recharge and renew… Gain back anything that you lost due to the many ways you pushed yourself, to make a difference for the entire pain community. I hope you will stay connected, and be out there fighting, when you can. But please, give yourself a break, when you cannot.


For those of you who are interested in getting involved, but do not know where to begin, here are some suggestions:

Not sure what to do or where to do it? If you are looking for a very specific idea, based on your skills, challenges or even just your location, email me. I would be happy to provide you with personalized suggestions, based on your unique situation.

So, Pain Awareness Month is almost over. But, it’s not too late to have a positive impact. Whether it is September 2011, or you are reading this months or years from the time I wrote it, you have the power to act… Right here, right now. Become an advocate, for yourself. Or, for someone you love. If you are already doing this powerful work, there is something else I would like you to do. Though admittedly, I really overdid it this month, I’ve still been doing little things to bring people with pain together—asking them if they would be interested in also doing this important work. I invite you to do the same:


Please, reach out to someone you may not have reached out to before. Ask him/her to join this fight. If you see the heart of an advocate in them, tell them so! Also, tell them what you do to make the world better place for people with pain. Invite them to join you! The more we reach out to help others who feel alone and invisible because of their pain, the more we become a powerful voice of unity, speaking out about pain.

Thanks for taking an interest in pain advocacy. I hope this will be the first step among many to come. Remember, there are many of us out here, and we are all working for the same common goal. Isn’t it better to be working together? Let’s do it!

Take care, everyone! xo Heather Grace

Support California’s Anti-Fail First Bill, AB-369: Send Your Letter Today

21 Apr

by Heather Grace, IPJ Staff Writer

The deadline to get your comments to Legislators regarding AB 369, the ‘Fail First’ bill, is rapidly approaching. My letter is enclosed, below. Won’t you share YOUR story, too?

April 21, 2011

Dear Legislators,

I am writing you today to request that you support AB 369. This legislation is critical to ensuring that medical decisions regarding prescriptions and treatments for pain are made by the direct patient care providers (physicians, nurse practitioners and physician assistants), and not insurance administrators.

AB 369 will help medical professionals do what they do best practice
health care. Step therapy or “fail first” therapy occurs when an insurer requires that other therapies must be tried and must fail, before people with pain can obtain the appropriate treatment, recommended by their physician.

AB 369 will save countless people from permanent disability. I know, because I am a victim of Step Therapy in the CA Worker’s Comp System.

I spent over 9 years working for a medical education company. I started
out as an Intern. Thanks a lot of hard work and dedication, I soon became the company’s Webmaster, as well as Web Department Manager. I loved what I did, truly!

I never dreamed that a spinal injury would change my life forever–especially because it didn’t have to. When I realized something was wrong with my neck (in addition to neck pain and headaches, my arms were going numb) , I did what I was supposed to: I told my employer. Their Workers Compensation carrier examined me and did an x-ray. Seeing no broken bones, they announced it was a ‘soft
tissue injury,’ even though I had a nagging feeling it was something

It took OVER TWO YEARS of heat, ice, physical therapy and Tramadol for
anyone to listen to me. When I finally got an MRI, I was relieved. There was a disc pressing against my spinal cord, causing the numbness. I had an answer! Now they would patch me up, good as new, wouldn’t they? A simple surgery could make things right again. Except, that’s not what happened…

Instead, I got… more of the same. Nerve glides, physical therapy, acupuncture, occupational therapy, over-the-counter medication, muscle relaxers, non-opioid pain relievers, stretching machines, home exercises, TENS units, sound waves, spinal decompression, ultrasound.

It was enough to make me want to lay down and die. I had been working
through all of these useless steps, trying to keep as normal a life as
possible as I was slowly being driven insane, with pain. There was no
rhyme or reason to any of it–it was just a bunch of stall tactics. What did they think would happen? Would I spontaneously heal?

By the time I got disc replacement surgery, I was dropping things. I was useless physically, and the pain was getting worse and worse. I was scared,
confused, mostly really depressed. I’d lost my dream job to a ‘layoff’–my employer got tired of waiting for me to get back to ‘normal.’ This only gave me more time to think about how miserable I was! It felt as though the Work Comp system’s steps were really a bunch of hoops. And, I was too sick to jump through them anymore.

Fail first in the Workers Compensation system is truly akin to medical neglect! No one’s ever that concerned if a certain treatment does not work. Being in a holding pattern–one useless treatment after the next–was hell on earth. I was in such severe pain, I was SUICIDAL. My WC lawyer said his hands were tied. The WC doctor said it was up to the insurer. The insurer refused to give a ‘yes’ or a ‘no’ to a question that should have been a no-brainer.

From the time I reported my injury til the time I got the one treatment
that would actually help–disc replacement surgery–took SEVEN LONG YEARS! That length of time in Worker’s Compensation without the appropriate therapy should be criminal! By the time my surgery was granted, it was too late…

Most people agree that the best they can ask at the end of their lives is a peaceful death. So many people don’t realize that it is possible to live with severe constant pain for years–or worse, for the rest of your life, due to step therapy.

Only when I decided to leave the Work Comp system and seek out a doctor
who could treat my pain, did I find any humanity. Finally, I had a doctor that focused on my symptoms–he was not bound by red tape. Still, he had bad news: because my spinal cord injury has gone untreated for so long, I had developed a nerve injury. There would be no cure for me, the ‘system’
and its hellacious steps had seen to that. I was destined to live with
this pain, indefinitely.

I will remember that day for the rest of my life. I was 33, and I had been in constant pain for almost 5 years. Though I was glad to finally have answers, I never expected I would be
permanently disabled by pain!

There *IS* a fate worse than a painful death, and I am living it. I’ve been given a life sentence, forced into a lifetime of pain. My sin? Trusting a system that did not care if I lived or died. I had begged, pleaded for their help. One WC Adjuster actually quit–I would like to think it was because of the guilt he felt over his part in my case. I told him I was suicidal due to the severity of the pain, and I still didn’t get surgery for another four months!

I’ve been coping with constant pain for nearly a decade now, and I am not even 40 yet. I’ve been in severe constant pain for so long, I cannot remember what it is like to be without it. People take for granted a life lived without pain and I am facing another 40 years of Intractable Pain.

Am I angry? Feel cheated? Sure, absolutely. I wish I had recourse for
what was done to me–a way to prevent WC from doing this to anyone
else, ever again. All I have is my story and the will to fight. And, you have the power of this bill in your hands. Please put an end to the nightmare of ‘fail first.’

You have the power to right a horrible wrong. Maybe not for me, but for
others who are destined to go down the same road I did. Though I am
thankful for good pain management, my life just isn’t the same. CONSTANT, SEVERE PAIN has taken away my ability to work a normal 40-hour per week job. It prevents me from being the productive person I once was. Though my heart and mind are stronger for what I have been through, I am a prisoner in this worn out body.

Now more than ever, we need AB369! PLEASE, HELP PREVENT STEP THERAPY

Improper or inappropriate care invariably leads to more persistent
illness and complications, which is far more expensive in the long run. True health care cost containment can be realized with bills like AB 369. Restoring a much needed balance in the provision of appropriate health care is good for everyone. Please give this bill your support!

Thank you,
Ms. Heather Grace
CA State Leader
American Pain Foundation
Twitter @intractablepain

Want to share your story, and help your legislators understand what AB 369 means to you? Visit http://action.painfoundation.org/site/MessageViewer?em_id=13221.0&printer_friendly=1 to send your letter to legislators, instantly!

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

Debunking The Myth: There Are Diagnosable, Objective Signs of Severe Pain

20 Mar

by Heather Grace, IPJ Staff Writer

Do you have severe, persistent pain? Have you been diagnosed with a serious pain-related illness like Reflex Sympathetic Dystrophy, Adhesive Arachnoiditis or Central Pain Syndrome? Has your pain graduated from chronic to intractable? Is it difficult to treat?

For the vast majority of pain patients, it is hard to find–and maintain–good pain management. And, it seems to be getting worse year after year. There are many issues that stand in the way of good pain care. One of those issues? The long-standing myth that doctors are at the mercy of patients’ to tell them about their pain. Why would pain be any different than any other serious illness? As you will learn in this article, pain is surprisingly similar to other chronic, debilitating diseases.

Pain: Subjective or Objective?

It has long been believed that pain is a subjective complaint–meaning that only the patient can really tell you what is going on. Surprise! That’s simply not true! Forest Tennant, MD, DrPH, an Intractable Pain specialist for over 35 years, has used what he’s learned in his practice to help patients with many different illnesses that cause chronic and intractable pain. And, he’s also spent much of his career helping other physicians better understand pain. In fact, he’s written over 350 articles on pain, based on his research as well as his experience with severely ill patients. In a ground-breaking 2008 paper, Dr. Tennant highlighted the signs of severe pain.

Yes, you read that correctly. There are specific diagnostic criteria that a doctor can to identify and treat pain sufferers, just as he would diagnose any other illness. Pain does indeed have objective signs!

Sadly, the majority of doctors still don’t know this is possible. It’s perhaps the greatest flaw in the curriculum at medical school. Pain is simply not a focus of their study. Despite the fact that pain is one of the chief complaints patients have when visiting their physician, most doctors just don’t have enough training in its diagnosis and treatment.And, this is one of the many reasons pain sufferers are not getting the care they desperately need.

So, what can we do to help doctors understand the plight of the pain patient? It’s simple, really. This information must be spread, far and wide. Whether you are seeing your family doctor, an orthopedist, a pain management physician or any other medical professional, please help them further their education on pain: provide them with Dr. Tennant’s ground-breaking paper! It’s time that doctors realized that pain is something that can be objectively diagnosed. All you need are the right tools. Here they are! From the article:

Using Objective Signs of Severe Pain to Guide Opioid Prescribing.

Pain Treatment Topics, June 2008.
by Forest Tennant, MD, DrPH

Online at: http://pain-topics.org/pdf/Tennant-PainSigns.pdf (PDF)

How do doctors ensure they are treating only true pain sufferers? Thankfully, there are many ways to tell. Using the signs listed here, medical professionals can distinguish between drug-seekers and relief-seekers. According to Dr. Tennant, severe pain “produces more objective physical evidence of its presence than does the average case of diabetes or coronary artery disease.”

Persistent pain that is either untreated–or even under-treated–will produce physiologic responses. These include: changes in pulse rate, blood pressure and pupil size. Other signs include: cold hands/feet, sweating, body asymmetry, sensory avoidance, muscle atrophy and seeking positional pain relief. What does that mean? Please review the charts on this page for the nitty-gritty on these signs.

The best news, of course, is that astute healthcare professionals can use these measures to objectively identify pain patients. No more guessing, no undue stressing. The pain rating scale is not the only tool in a physician’s arsenal. While it is helpful to request a patient’s rating of their own pain, on a scale of 0 to 10, doctors can compare this information and other complaints put forth by a patient against the objective measures. This strengthens the therapeutic relationship, while also ensuring doctors are relieving the suffering of pain patients in their care.

Blood Tests: More Objective Evidence of Pain

Hormones. Further evidence of severe, persistent pain can be found in blood tests. Doctors should look for changes in hormone levels: stress hormones, testosterone, progesterone, estrogen. Both men and women will have readings that are out of the norm. Depending on how long a person has been dealing with pain (early on vs. years into it), the adrenals, for instance will either produce very high readings or very low, respectively. Stress hormones work over-time, trying to combat what is going on in the body. Eventually, however, the body can no longer cope and stress hormones are depleted. All hormone levels go out of whack. Signs can be seen in the patient, such as changes in volume of body hair, irregular menses in women, etc. These are questions that can be asked during an exam, to help clarify possible hormone issues, prior to testing.

Drug Testing. As a pain patient, expect your doctor regularly test you, to ensure compliance. This basically means, your doctor wants to know you are taking the medication you have determined helps relieve your pain–and you are not taking anything else that you have not discussed with him. (Either prescription or illicit drugs.) This may be blood tests, however, urine testing is far more common. Perhaps this is because the results are available right there in the doctor’s office, but know that this is controversial. If a urine screening comes back with unexpected results, request a blood test to verify the data.

It’s a sad fact that this is necessary in pain care, but because of the DEA and State Medical Boards, doctors are using this to protect themselves. Yes, it’s true–this doesn’t happen in any other care of any other serious illness. It’s almost not in the doctors’ hands anymore–it’s a necessary evil. Just know it’s happening all over; you are not being singled out. This is just one more way a doctor can ensure he/she is treating on pain patients, and not people who might try to sell their medication and/or abuse other substances. A pain management physician never wants a drug addict or drug dealer to enter their office. However, they can and they do. If a simple test means I have access to pain management, which allows me to be a productive person, well, I say, why not? After all, I’ve got nothing to hide! Nor do any other pain patients. Now, it’s just another thing on the list of ‘things to do’ at the doctor’s office. So relax, provide your sample, and move on with your life.

A good relationship with your doctor is key. So long as you are a pain patient and are not keeping anything from your doctor, all of the information here will strengthen the therapeutic relationship. Trust is a huge part of being a pain patient. You must prove yourself, and continue to prove yourself, throughout your care. It shouldn’t be the case, but sadly, in this climate of hyped up Oxycontin addiction and overdoses splashed in headlines, doctors have to be vigilant. If they weren’t, they wouldn’t keep their doors open very long! Be upfront and honest–always tell your doctor what you think might help, and he/she will share his ideas with you. If you aren’t getting good pain care, keep looking. Good doctors are out there, even though, admittedly, they are harder to find than they should be!

Differences from One Patient to the Next

Patients may wonder whether these objective measures may be problematic for them, given the differences in measurements from one patient to the next. The answer here is simple. When you visit a new pain management physician, provide him/her as many records from prior doctors as you can. If your blood pressure tends to be very low, then perhaps what appears to be a ‘normal’ reading is actually very high. Conversely, if you already had high blood pressure prior to the start of your serious pain, you can provide a pain doctor with evidence of this. Most people with high blood pressure are treated for it with hypertensive drugs. If your blood pressure was high and it subsequently increased, this will be noted in your files. So will any increase in blood pressure medication, since your pain began. This will help a physician understand that the blood pressure rating may be low due to medication, not because you aren’t in pain.

Additionally, these ratings will change, over time. Once a patient receives the appropriate medication, he/she will get some degree of pain relief. If you are getting medication that helps, your blood pressure/pulse and other signs will improve, because you are getting the pain under better control. It is also important to note that even if patients are not getting the pain relief they seek, either one or the other of blood pressure or pulse can be within normal range.

In my case, I felt immediately at ease with my doctor, after our first visit. I think my pulse was still very high for the first several months, but my blood pressure went down fairly quickly. I finally felt like this was my answer–this doctor could help me. The stress I felt was being combated by the mere fact that I trusted this man to help me. Less stress often means better pain control. Additionally, patients who are generally getting good relief but are having a very stressful morning, fighting traffic, etc, may have higher than normal readings, as well. It is best for doctors to always give the patient time to calm down from any such issues, before they are screened for blood pressure and pulse. This will assure readings that more accurately reflect a patient’s true resting blood pressure/pulse rates.

What Does a Pain Patient Look Like?

Personally, during my first visit to an Intractable Pain specialist, I was scared. By the time I saw this doctor, I was literally at the end of my rope. If he didn’t have any answers, I was determined to find my own way out of this, even if meant death. It was a very dark time for me, no question.

I had no clue about all of these objective measures for pain when I saw him, I was just sitting, trying to fill out paperwork, wondering if I would ever feel like myself again. There was no question that I was in serious pain. I had been on high doses of Vicodin for some time, but it just wasn’t managing my pain anymore. There are far better medications out there that don’t require patients to take in 3000 mg of acetaminophen per day, or more, as I was for several years!

At that time, many of these signs were present in me. Very high pulse (94, if I remember correctly) and blood pressure was equally high (I don’t recall the exact rating, but it was in the neighborhood of 145/110). I don’t recall my pupil measurement. Hands and feet were like ice nearly all of the time. I slumped to the right in my chair, guarding my left arm, which was very numb. I could no longer tolerate leaning it on the arm of any chair, no matter how padded it was. At the same time, I kept my back straight, trying to always pick a chair with a high back. If that wasn’t possible (as if often the case at doctor’s offices), I selected a chair that was very tightly up against a wall; that way, I could lean my head up against it. I scarcely moved my head or neck, trying to stay very rigid. My neck was a mess.

I forced myself to shower, but didn’t do much other than comb my hair. No make-up. By the time I’d showered, I was already late. Everything took so long to do, it seemed! Even though it was January, I wore very flat shoes, flip flops, because most everything else was so uncomfortable, anymore. I found that my feet being covered, especially the toes, hurt. And heels, forget it! No matter how cute, 90% of my shoes just collected dust.

Clothes too! I wore loose fitting clothing, but tried to make myself as presentable as possible. I used to dress fairly professionally, as you would expect a Department Manager in Marketing/IT. That was who I was for so long–nearly a decade. But, increasingly, even in the last few years at work, I could not wear my nicer suits, or even nice flowing skirts/dresses, because none of the shoes I was able to wear looked right with them. I struggled to find semi-professional clothing and after a few years of this, I plain gave up. Soft cottons without any pilling were about all I would manage.

Several times, during my visit with the doctor, he asked me to repeat myself. Apparently, I was speaking very softly and didn’t even notice it. That’s common with neck injuries, he told me. I still am not exactly sure why, but the fact that my surgery was near my vocal chords does make some sense. (They had to go through the front of my neck to do the surgery safely, so I was warned I might never speak again, etc. Luckily that didn’t happen, but I often have people asking me to repeat myself, especially people I don’t know and am not comfortable around. Weird, but true.)

As he examined me, he noted muscle atrophy and weakness. My doctor took photos of my pain areas. Even I could see the swelling in my forehead and the crease, as I looked at the photos–it was noticeable, though I’d never thought about it before. I have chronic headaches, which are apparently visible when they’re nearly round-the-clock! He also noted inflammation in my upper back. It all made sense. It was right there, for all to see, if they would only look!

I often bit my lip, thinking it was a nervous habit. Apparently, it’s something people in pain do to distract their nervous system from the pain. I also became very clumsy. That’s how I would describe it. Many cuts and bruises, mostly on my legs. I’m not sure if it was the numbness or my body’s desire to be rid of the constant pain signal I was dealing with. I was at an 8, 9 or 10 on the pain scale, consistently, before I saw this very knowledgeable Intractable Pain specialist. Apparently, some patients, consciously or unconsciously, hurt themselves, to help their bodies redirect the pain signals.

Important Questions Regarding Intractable Pain

During that initial visit, my doctor asked me questions no one else had asked before–honestly, I was starting to get nervous…

Had I been sleeping? Hardly at all, max of four hours at a time. Even that much was rare. I was exhausted.

What about eating? Not much, but lots of sugary stuff, mostly. Really bad. He nodded.

Did I go out much? See family or friends? Not really. Not ever. I was starting to worry. What did that mean?

Then he asked about exercise. Or if I went out and did anything I enjoyed, at all. No and no.

What did I do with my time? Sit around, worry, try to sleep, watch some tv. Not much, at all.

My alarm bells were going off. It was as if he knew me better than I knew myself! At the same time, I was worried it was something really, really bad. I mean, the pain was bad–really bad. But, what was all this about? Throughout his questions, my doctor was taking notes–lots of notes. Notes make me nervous. Other doctors rarely listened so intently! I started to kind of space out–maybe I was in shock, or maybe I was too worried to think straight, anymore. We were still talking, but I was so consumed with the WHY behind it all, that I didn’t hear much else, until he asked this one:

How are your teeth? Grind them? Lots of cavities? Other dental work?

That was it, I lost it, completely. How did you know? I began to sob. He left the room, grabbed a box of tissue and came back. (I suspect, this was also to give me a chance to compose myself.)

When he returned, I had to give him every bit of info, about my teeth. I often gritted my teeth in my sleep–not grinding, but jaw clenched, very tightly. In the past few months, it was as if I only left my house to go to the dentist. Crown after crown. Cavities rotting into seriously bad situations. My first ever bridge. I didn’t know anyone who had one of those, except me. I was a dental nightmare!

Based on the exam, interview, photos and all the paperwork, it was pretty clear to my new doctor that I had Intractable Pain, which has some extra symptoms for doctors to look out for, in addition to the subjective pain signs above. Eventually I learned I also had Reflex Sympathetic Dystrophy.

Tough stuff, but at least now I know. And with the help of a knowledgeable doctor who cared to ask the right questions, I have some semblance of a life back. Pain management makes a big difference. Is it the same life I was living before? No. I will always have pain. That’s what Intractable Pain is. But, more than that… I am still here, and I am fighting for others with pain, like me.

What Can I Do To Make My Doctor To Understand My Pain Is Real?

Please, share the signs and symptoms of pain with your doctor. Let them know you are not crazy, faking or lying. Your pain is real and they can see the symptomsif they just know where to look. Print out the brilliant work by Dr. Tennant for your doctor(s), loved ones, fellow pain sufferers you know. Bookmark it, too. It’s here: http://pain-topics.org/pdf/Tennant-PainSigns.pdf for all to see!

Change starts with you! Give copies to other people at your doctor’s office. Start a movement. Push for the care you need; push for better care, for everyone. The more doctors understand a true pain patient, the more we will all get the pain care we desperately need. Many of the people I know with severe, persistent pain have gone through hell, just to get someone to listen. Isn’t it time that era of pseudo-pain care came to an end? Real pain care starts today–with you!

Remember: Pain doesn’t discriminate. It affects people of all races and economic status at all stages of life—from our very young to our elders. Research has also shown that about a third of people who report pain indicate that their pain is *disabling* — both severe and having a high impact on functions of daily life. Pain is a national healthcare crisis, impacting over 116 million Americans.

The Bottom Line: People in pain have a right to timely, appropriate pain care. And thanks to Dr. Tennant’s work, all doctors will be better equipped to diagnose, then treat it.

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

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