Fibromuscular Dysplasia's Patient Registry Good For Research, But Is It Good For Patients' Quality of Life?

Fibromusclar dysplasia patients learned that principal investigator, Dr. Jeffrey Olin of Mount Sinai School of Medicine, would be presenting initial findings from the FMD patient registry at the International Symposium on Endovascular Therapy mere hours before his talk. Not that it mattered much. Patients weren't part of the ISET program. We didn't get to hear what Olin said. We—the people in the study—got a news release. Or at least there was a release put out and a few subsequent health news articles, which those who were paying attention shared around the FMD community. 

To any FMD patient, the findings were less than surprising. Of the 339 patients studied, 91 percent were female—a fact evidenced by any FMD social community, including the one for which I am a co-founder and moderator called FMD Chat. More than 95 percent of patients suffered one or more of the following symptoms: high blood pressure (66 percent); headaches (53 percent); rhythmic ringing in ears (30 percent); dizziness (28 percent); a whooshing sound in the ear (24 percent); neck pain (22 percent). Again, this list of symptoms and their prevalence offers no new information to patients. Olin reported that the location of FMD affected arteries showed the most common being the renal arteries followed closely by the carotids and that many patients have FMD in multiple locations. We knew this too.

FMD is often found by accident after a stroke or transient ischemic attack, Olin said. Yes, we know. It should be looked for in young patients with high blood pressure or migraine-type headaches. Yes, we know. FMD can be diagnosed with angiography, CTA, or MRA. Yes, we know. Angioplasty can be used to open up affected arteries if done early enough. Yes, we know. Blood thinners and antiplatelet drugs may be prescribed. Yes, we know. FMD can lead to a tear in the artery or permanent kidney damage. Yes, we know. It is unclear what causes FMD. Yes, we know. FMD is an underdiagnosed disease. Yes, we know.

Granted, rare disease patients tend to be extremely well-informed about their disease. We have to be. The very nature of a rare disease is that it is rarely seen, so patients often know more than the healthcare providers treating them. This is particularly true for patients living in rural communities without access to teaching hospitals. Patients become the teachers—assuming that the healthcare providers are willing to listen. 

What we don't know is why a registry, which began in 2008 and costs nearly $50,000 a year paid to the University of Michigan to maintain, has yielded information that does not correlate with what patients really want to know. Among FMD Chat group participants, questions are never about what percent of patients exhibit a particular symptom. The questions overwhelmingly begin with "why." Why did my artery dissect? Why do we dissect when we do? Why the headaches and neck pain? Why orthostatic hypotension post FMD-related carotid dissection? Will dissections continue to happen? Is one born with FMD or does it develop over time? Will FMD progressively develop in additional arteries after first being diagnosed? Is it a connective tissue disease? Having been previously healthy and then diagnosed with FMD, why do other health problems occur? How many people die as a result of FMD and at what age?

What we don't know is why FMD patients tell story after story about traveling great distances across the country to see doctors identified as FMD specialists to leave with no plan of action, no sense of treatment, and an overwhelming sense of frustration. Diagnostic angiograms, CTs, and MRAs come back "unchanged" or even "normal" though will little explanation as to whether normal is normal or normal is the new normal for that patient. Stents may be placed, but there is no promise of their effectiveness. Angioplasty may be performed... and required again and again. Some cases have resulted in bypasses, yet there is little to no data on whether the bypasses will remain patent. More often than not, patients report physician visits as exactly that—a visit—having been sent home with no new information and no hope. It is no way to live. 

These issues do not bode well for a much exclaimed conjecture from Olin's report: FMD may affect 4 percent of the U.S. population. Four percent of the U.S. population is approximately 9 million people. FMD is currently classified as a rare disease. With the U.S. a rare disease is one that impacts less than 200,000 people. Projecting that FMD affects 45 times as many people in the U.S. not only means that FMD would lose its rare disease classification; it means that 9 million people will have the same questions as the current group of frustrated and terrified FMD patients. 

Problems with this 9 million figure are two-fold. First, no reports generated from ISET explain what methodology Olin used to derive this 9 million figure. How does a study of 339 patients translate to the potential of 9 million patients in the U.S., much less world-wide? Secondly, how will losing rare disease status affect allocations for future research funding? Even the non-healthcare provider and non-researcher would be safe to say that there's more funding to be found for researching more common diseases. From an outsider perspective, it seems rather at odds that the researcher who stands to gain funding for his work chairs the advisory board of the Fibromuscular Dysplasia Society of America, which funds the registry. "Dr. Olin and his associates from the registry hypothesize that patients who develop FMD have an as-yet unidentified genetic predisposition that interacts with an environmental trigger," reports Mitchel Zoler in Family Practice News. "His hope is that, by continuing to expand the registry and by receiving substantially more research support than FMD now gets, a more concerted research effort can address the genetic questions raised by the family-history findings." 

Researching FMD is important—at least to those of us who have it, to our family members current and future, and to those who may one day be diagnosed. However, the most immediate need it to improve FMD patients' quality of life. More must be done across the related specialities to address the issues that many FMD patients struggle with on a day-to-day basis including crippling fatigue and pain, the inability to work and lost income, depression and anxiety, isolation and fear. These issues are imminent threats to patients' overall health, and without a concerted effort to holistically treat patients there may well be fewer patients willing and able to participate in research studies. 

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This blog post is part of the RARE Project's blog hop to raise awareness of World Rare Disease Day, held on Feb. 29, and is part of a collaboration among the RARE Project, The Afternoon Nap Society and Grand Rounds. To read Grand Rounds selected posts, some of which also address rare disease, click here. 

• An estimated 350 million people are affected by rare disease worldwide.

• One in 10 Americans is affected by rare disease, which is more than 30 million people and more than the total number of people living with cancer worldwide.

• There are more than 7,000 rare diseases with some affecting less than 100 people.

• Almost 80 percent of rare diseases are genetic in origin.

• These rare conditions are chronic, life threatening and fatal. There are no cures for any rare
disease, and only 5 percent of the diseases have any type of treatment.

• Thirty percent of children with RARE disease will die by their fifth birthday.

• More than 50 percent of rare diseases have no foundations, advocacy group or community support.

Being Better to My Body: Day 1

I went to the grocery store yesterday. I spent $114.08 (but saved $32.55 thanks to in-store discounts). My list reads as such:

Kellogg's Raisin Bran $1.93
Kellogg's Raisin Bran $1.93
Quaker Oatmeal Squares $3.00
Quaker Oatmeal Squares $2.42
Mount Olive Garlic Dill Pickles $1.44
Mount Olive Polish Dill Pickles $1.44
Arnold Healthful Nutty Grain Bread $2.98
Laura Lynn Splenda Knock Off $2.48
Extra Apple Pie Gum $1.08
Bass Ale $11.97 (for the hubs)
Daisy Light Sour Cream $1.38
Smart Balance Spread $1.88
Smart Balance Spread $1.88
Skim Milk $2.73
Weight Watchers String Cheese $4.18
Yoplait Light $.75
Yoplait Light $.75
Yoplait Light $.75
Yoplait Light $.75
Purina Dog Chow $12.48
Air Freshener $2.88
Air Freshener $2.88
Frozen Chopped Spinach $2.50
Frozen Chopped Spinach $2.50
Morning Star Black Bean Burgers $2.98
Morning Star Garden Veggie Burgers $2.98
Clementines $6.98 (splurge!)
Berry Boost juice $2.50
Green Goodness juice $2.50
Smart Sausage Italian Style $3.00
Smart Sausage Chorizo Style $3.00
Tamari Almonds $3.62
Blueberries $2.50
Blueberries $2.50
Mushrooms $1.98
Edamame Beans $.85
Eggplant $1.55
Organic Baby Carrots $1.98

For good measure, let's take the beer, dog food, and air fresheners out of the equation, which lowers the bill by $30.21 for a total of $83.87.

Am I worth $83.87?


This question gives me pause. My immediate response is, "Depends on how long that $83.87 lasts." The amount represents 10 percent of my bi-weekly take home. Let's assume that I'm a creative cook with a few things already in my cabinet. Let's assume that I will have to make at least one similar trip to the grocery store and one more at half the cost. At an estimated cost of $210 for the month, groceries will have taken up 13 percent of my take home pay. I spend 24 percent of my take home pay on my half of the mortgage (the hubs and I do our banking in a somewhat complicated arrangement that works for us). The great Jimmy Buffet once sang, "You treat your body like a temple; I treat mine like a tent." And it is with that line in mind that I have decided to be at least half as good to my body as I am to the place it inhabits. In other words, as of today, I am spending the money and making the effort to eat right.

My last post was a cathartic wake-up call to what can only be described as my food addiction. Eating right is no matter of rocket science. There is no great veil of secrecy as to its means and its end. Cheetos = bad. Raw veggies = good. Drink more fluids. Avoid the trans-fats. Watch those carbs and sneaky little calorie bombs like sodas, nuts, and juices, but remember that there is room for most things in moderation.

It is the moderation part with which I have the most difficulty. Once upon a time, I went vegetarian for two months as a self-selected research subject for a graduate paper I was writing about the environmental impacts of our dietary choices. For the record, the average American diet requires the production of a ton and a half of carbon dioxide-equivalent—comprised of carbon dioxide, methane and other greenhouse gases—compared to a strictly vegetarian diet, say University of Chicago assistant professors of geophysical sciences Gidon Eshel and Pamela Martin. Even as a vegetarian, I struggled with moderation. I've always had a love affair with bread, crackers, chips, potatoes, pasta. And it doesn’t matter if its whole-wheat, fiber-enriched, low-fat, baked whatever if you eat the whole damn bag of it. Calories are calories. My weight swung back and forth: up seven pounds after several bagels and then back down to where I started, down a pound, then back up three. Eating wasn’t so much an exercise in not eating meat as it was in self-control.

As I again focus on what I am putting into my body, my intent is not first and foremost to lose weight. Being good to my body is the only thing that I can control about my vascular disease, as unlike high cholesterol, it cannot be treated with a pill. Yes, I need to lose weight. Yes, that will probably happen as a result of being better to my body. I'm okay with that. However, the most important thing as I take on this task is to maintain perspective. For me, this is not simply a matter of a New Year's resolution that occurs presto-chango. This is a matter of retraining my body and my soul. It is what Stanford's behaviorial design expert, BJ Fogg, would call an exercise in small habits created to establish a path in life. 

What I am asking for you to do is to join me in my effort to retrain myself. Perhaps you too wish to make changes in your life. Fantastic. Perhaps you don't. That's fine too. It is my hope that making my goal public will give me a greater sense of accountability, and that the public will both support me in my efforts and hold me responsible for my course of action. Will you help me? 

Terrible Twos-day: Duo Edition

Shower singer or karaoke maven? Member of the choir or closet rock star dreamer? Add your voice to these musical duos, or if the neighborhood cats and dogs all run from your musical antics, perhaps it is best if you just hum along.

Jack and White - Double Trouble

She & Him - Don't Look Back

Norah Jones & Dolly Parton - Creepin' In

Bonnie Raitt and John Prine - Angel From Montgomery

Taj Mahal & Ry Cooder - By & By (Poor Me)

Ali Farka Toure & Toumani Diabate - Sabu Yerkoy

The Chemical Brothers - Swoon

Get your Tuesday on. 

We Are What We Eat

I didn't exercise today—or really any of the days before that. Exercise hurts. It makes me tired. I am afraid of doing too much and hurting myself. I made sugar cookies last night. I used real butter and real sugar. There are no more left today. I had a burger and fries for dinner tonight. The burger had cheese on it. I had a side of ranch for the fries.

I have had triple bypass surgery. I have had a stroke.

Do you blame me for my disease?

Yes.

I would not expect you to do otherwise.

You do not understand my disease. My disease has no known cause and no known cure. And despite my having made decisions not to sweat off my calories consumed and not to eat smart, the fact is this—my disease manifested when I was a scant 95 pounds, horseback riding six days a week, and eating next to nothing because the pain I experienced upon eating was too much to bear. My disease, though vascular, does not involve plaque, or heart attack, or obesity. My disease is the result of abnormal cell growth within the artery. There is little I can do about it. The only thing that I can do is take good care of my body. And there's the sticking point.

In 2005, surgeons bypassed my renal, celiac, and mesenteric arteries. My renal artery was more than 90 percent closed off and my kidney was dying. My celiac and mesenteric arteries were completely closed, and the resulting loss of blood flow to my digestive organs caused violent vomiting and diarrhea in addition to burning and stabbing pain so intense that, when not slumped on the bathroom floor, I would pace the floor, my fingernails clawing marks into my palms. The bypass surgery immediately relieved all my suffering. I had spent nearly two decades living with a fear of food and that at any time and in any place, I could become crushingly and seemingly inexplicably ill. The change was so dramatic that I no longer knew my body.

In the wee hours of the morning a few months after surgery, I was parked outside my local hospital's emergency room, crying, debating whether or not to go inside because I had a strange burning sensation in my chest. I had become so used to dealing with pain that I continued to wait, and as I did the antacids I had taken began to work. As the pain subsided, so did my anxiety. Antacids had never made a dent in my old body's symptoms, but my new body, suffering nothing more than heartburn, responded to the chalky pills. I felt stupid. I felt betrayed. Even if my old body caused me misery, at least I was familiar with it, so what was a victory became something new to overcome.

It took me more than a year to become comfortable with my new body, and even then there was the decidedly undesirable side effect of losing control of my bowels while I slept—a raw truth I share because I wish no other patient to feel so embarrassed and alone for as long as I did. Only this year did my relationship with another patient who shares my disease and who had a similar surgery allow me to discover that I was not the only one to experience this effect. It was one that I had been cautioned about upon having my gallbladder removed nine years prior, but it never manifested to the same degree as it did post-bypass. Though physically pain free, my pride was near mortally wounded on more than one occasion.

Within a year's time, I had had surgery, gotten engaged, and subsequently acquired a live-in fiancé. The fiancé and I got married; we got a dog; we bought a house. In 1967, psychiatrists Thomas Holmes and Richard Rahe studied more than 5,000 patient medical records to determine if there was a correlation between stress events and illness. They came up with 43 life events and assigned a point value to each. A score of 300 or more points within a year was said to contribute to illness; a score of 150-299 meant a moderate risk; a score under 150 meant little to no risk. I was at 366. (My new husband was not far behind.)

Diagnosed with depression and anxiety as a freshman in college, I was aware of my pitfalls but did not always manage to avoid them, and as my depression and anxiety partnered with so many major life changes, I began to self-medicate. I ate. I ate sadness and despair and shame. I ate fear and envy and blame. I ate inadequacy and nervousness and pity. 

Though still barely within my BMI range, I weighed more than I had ever weighed. In college and pre-bypassm I had shopped in GAP Kids or wore at most a size 2. As an adult, I was around size 4 to 6. I'd crept up to an 8 or even 10. And then, I had a stroke. The stroke a complication of my vascular disease, which as best as the doctors could determine was a blockage or perhaps related to the four cerebral aneurysms they later found. My bypass failed because the diseases' abnormal cell growth had again grown the arteries closed. And so again, I ate. I ate uncertainty and impaired ability and unfairness. I ate guilt and dependency and frustration. 

And I never stopped. 

It would be so much easier if I could force feed a cake directly into my heart and inject gravy directly into my head to fill the voids that are torn into them. Food does not judge. Food does not forsake. Food will never see my vulnerability. Instead I forsake myself, give in to my vulnerability, and consequently judge myself and find myself lacking because I can not, or at least am not, doing the one thing that I can do to help control my disease, which is to treat my body well. It is not a diet that I need. I need a better way to binge, if not for my soul, then upon it. 

World Rare Disease Day, Grand Rounds, and The Afternoon Nap Society's Healthcare & Social Media Mashup

A special collaboration among the RARE Project, Grand Rounds, and The Afternoon Nap Society will use social media to connect patients and healthcare providers while raising awareness of World Rare Disease Day.

As a rare disease patient and healthcare blogger, I saw a unique opportunity to facilitate this collaboration, which will bring RARE Project’s rare disease blog hop together with Grand Rounds, an online collection of each week’s best in healthcare blogging. As a participant in the RARE Project’s Jan. 30 blog hop and as host of the week’s edition of Grand Rounds, The Afternoon Nap Society will serve as crossroads for readers. Those readers following RARE Project blog hop posts will be linked to Grand Rounds’ featured posts, and those readers who follow Grand Rounds will be linked to the RARE Project blog hop as one of the weekly edition features. “Grand Rounds has always sought to highlight the best of the healthcare blogging community, and the RARE Project’s mission is certainly worthy of recognition and acclaim,” said Nick Genes, MD, PhD, who is Grand Rounds’ founder and a resident in the Emergency Medicine program at Mount Sinai Hospital in New York City. “This collaboration represents a rare opportunity to align goals. We’re thrilled to be working together.”

This collaboration has the potential to bring together bloggers from around the globe to raise awareness of World Rare Disease Day, held on Feb. 29, and facilitate the exchange of information and ideas among healthcare professionals, patients, advocates, caregivers, and journalists. It is yet another testament to the fact that social media has emerged as the new frontier in medicine. Its rapid, interactive format and global reach provides healthcare professionals and patients with the ability to exchange information and ideas with an audience that is larger, more diverse, and more widely geographically distributed than traditional face-to-face interaction ever would allow.

It is my hope that this collaboration among The Afternoon Nap Society, the RARE Project, and Grand Rounds will help others use social media to breakdown geographic borders, make connections with one another, and learn more about the rare disease community. Whereas patients with more common diseases such as cancer or diabetes stand a very good chance of knowing someone who has been affected, a rare disease patient — particularly one who lives outside a highly-populated metropolitan area — may be the only patient with his or her diagnosis at a doctor’s practice. I know I am. Social media helps reduce the isolation rare disease patients may experience. I was fortunate that shortly after my diagnosis with intimal fibromuscular dysplasia, I connected with another fibromuscular dysplasia patient on the Mayo Clinic’s discussion forums. That connection resulted in additional connections around the world, and now I have a online community of patients and healthcare providers that I consider to be family as much as friends. As a group, we are making rare feel so much less alone.

For more information about RARE Project, visit rareproject.org, or to sign up to participate in the RARE Project’s blog hop, email bloggers@rareproject.org by Jan. 23. Discover more about Grand Rounds at getbetterhealth.com/grand-rounds. To learn more about how to submit a post for the special collaboration edition of Grand Rounds, click here. Please also follow @RAREproject, @grandrounds, and @afternoonnapper on Twitter, and find us all on Facebook too.

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I urge you to oppose the Stop Online Piracy Act and the PROTECT IP Act. These bills will kill jobs and stifle innovation, undermine cyber security, risk censoring the American Internet, and provide cover for totalitarian regimes that want to undermine Internet freedom abroad.

Learn more. STOP SOPA

The Day Valentine's Day Died

To lose a loved one on a holiday means that each year the anniversary rolls back around with festoons made grim by association.

I don't remember how old I was when my grandmother died, but I remember that it was on Valentine's Day. Mema had had a heart attack and was staying with my parents and me afterwards to recover. She had been doing well, but another episode landed her back in the hospital. My mother, father, and I were all dressed up and ready to go out the door for a Valentine's Day dinner together when the phone rang. I didn't know it at the time, but it was the doctors saying that Mema's heart had failed again. If my mother wanted to say goodbye, the doctors could keep Mema alive (or at least as alive as she could be) until my mom got there.

My parents dropped me off at a friend's house. They didn't come back to get me. I remember the phone ringing in the middle of the night, and I somehow knew that the call meant Mema had gone. In the morning, I called my mom and asked, "How's grandma?" The question caught me as strange. I'd never called Mema that. She was always just Mema.

I didn't cry until I got home. I opened my closet and there hung my Girl Scout vest, which Mema had been hand sewing my badges onto. That's what did me in. I took a small comfort in the fact that I had sent Mema a coffee mug covered with hearts and a white teddy bear inside it and a giant heart-shaped balloon that said, "I love you!" I knew that she had seen it before she died, and that at least I got to say what I felt for her, albeit in shiny, crinkly mylar.

My grandmother was 17 when she joined the United States Cadet Nurse Corps in 1944 through Grace Hospital in Banner Elk, N.C. The U.S. government established the program in 1943 to ensure that the country had enough nurses to care for patients both on the home front and at war. The Cadet Nurse Corps greatly increased our country’s number of nursing students, led to greater public recognition for nurses, and changed how nurses were educated and trained.

Mema only spent a year in Corps, but it was a year that shaped her future goals. My mother remembers the distinctive grey and white striped cotton of the summer uniform tucked away in a drawer. Mema's Cadet Nurse shoulder patch always remained with her New Testament.

Mema refused to let her dream of being a nurse die. She worked full-time as a licensed practical nurse while attending college, finally earning her Associate Degree of Nursing in 1976—31 years after leaving the Corps.

Perhaps then it is no coincidence that at age 31, I have discovered my own passion for healthcare. Upon being diagnosed with a rare type of a rare vascular disease (intimal fibromuscular dysplasia), I began writing about my own health experiences and working to both raise awareness of my disease and improve communications between patients and doctors. This type of writing falls within the realm of narrative medicine—combining the humanities and scientific thought, breaking down barriers, and providing a different medium through which to discuss the medical profession. Moreover, this type of writing has allowed me to find my meaning in the world.

I haven't celebrated Valentine's Day since Mema died. All the hearts and the red roses and the pink frilly things just come off as saccharine, manufactured, and meaningless. If one is going to love someone, one should love that person every day and show it every day because any day might be the day that person is gone.


Special thanks to Dr. Claire McCarthy for her Trap Door Days. 

On A Scale of 1 to 10, How Would You Rate Your Pain?

It was 3 a.m. when I arrived at the locked doors of the rural hospital that was my only option for miles. Doubled-over and panting, I pressed the intercom button and gasped my request to be let inside. There was a buzzing click. The doors parted. Instead of meeting a nurse, I met no one. The registration desk was vacant. There was no on in the waiting room. I paced about, flapping my hands, and growing increasingly uneasy. Where was help when I needed it?

A doorway on the other side of the registration desk opened, and a woman in scrubs beckoned me inside. The woman appeared entirely unconcerned with my state of unmistakeable physical duress. While I tried to answer her questions about insurance and previous surgeries, I buckled from the pain. Still non-phased, the nurse continued my interview as I, down on my knees, clung to a chair and answered her questions with my eyes squeezed shut. 

Finally, taken into the ER, I was told I would have to wait for the only doctor working that night. So I did. I waited, and I waited. I have always taken great pride in my ability to remain calm in emergency situations and to be an agreeable, communicative, and dutiful patient. I do not make a scene. I do not make a fuss. It is my firm belief that being an overly-dramatic, screaming, crying mess does absolutely nothing to help my doctors actually treat me. My family members know this. They have been with me in the hospital on more than one occasion, emergency and otherwise, and will testify to my ability to keep cool under pressure. So as we waited for the doctor and I writhed on the floor, my mother, who was traveling with me, grew worried. Before we'd even left our hotel to go to the hospital, she had stated her fear that I was having a heart attack. At the hospital, she sat as calmly as she could, clutching her purse on her lap, and pointedly told the nurse, "We've been through a lot, and I've never seen her like this before."

Wallowing and writhing on the floor—sometimes hunched over and clutching the empty doctor's stool and sometimes curled into a ball against the wall—was less than attractive. I knew that. I had no other choice. I explained that when I had first begun experiencing the symptoms of mild pain under the curve of the left side of my rib cage that I had thought it was gas. The doctor, though still absent, ordered a GI cocktail, something that was explained to me as a cross between Mylanta and lidocaine. Though still huddled in a ball on the floor, I knocked back the shot of white stuff in a singular, desperate gulp and thrust the empty cup above my head. The nurse simply said, "Oooook..."My tongue went numb, but nothing improved. Finally, a nurse asked the ubiquitous question, "On a scale of one to ten, on which ten is the worst pain you've ever felt, how would you rate your pain?"

I lied. I think I said eleven. Hell, maybe I said fourteen. The problem with the one to ten pain scale is that it is completely subjective. What is my ten is not my husband's ten is not my friend's ten is not my doctor or nurse's ten. If I answered my trut, that I was at about a personal seven or eigh, I feared that I would not be taken seriously. my scale is based upon a medical history that includes throwing up and excreting blood so frequently that I've passed in and out of sleep on the bathroom floor; I have had organs removed; I have had a 15-inch horizontal abdominal incision.  half sideways for elaborate bypass surgery; I have had broken bones; I have had both my jaws sawed apart and screwed back together. I HAVE KNOWN PAIN. However, at any given moment the healthcare professional asking me about my pain on a one to ten scale doesn't know my pain in context. the healthcare professional doesn't know how it feels to be me. 

On any given day, my pain is around a two or a three. I live with it. I am cautious take medications for it. Whether at home or in the hospital, I only make the request for meds when I hit a four and am headed toward a five. Perhaps I could cut myself a little more slack,  In my head, I reserve a ten for a pain that I have not yet experienced—say being run over by a train. Perhaps this is wrong of me because the pain scale question describes ten as "the worst pain you've ever felt" and since I've not yet been run over by a train, I don't know for sure what that feels like. Consequently, I have promised myself that if I am in a situation in which the pain is truly the worst I have ever felt, that I will answer, "This is my current ten."

I fear being classified as a drug-seeking patient, if I ask for medication at anything less than pain scale level of five or six. Yet, I also fear not being given adequate pain medication if I remain true to my personal experiences and classify my pain at a level that is less than whatever my healthcare provider thinks is necessary to warrant medication. It is a lose-lose situation in which there is no right answer for a patient to give. We must come up with a better way to communicate our pain and suffering and for healthcare providers to interpret pain and suffering without judgment. 

The body responds to pain in physiological and measurable ways including pupil dilation, increased blood pressure, sweating, and increased rate of respiration. Healthcare providers placing a greater emphasis on these markers rather than on subjective numbers and pictures of frowny faces would increase the accuracy of pain diagnosis and management. These physiological symptoms can be applied both in the emergency setting—where at times patients are unable to communicate—and in the doctor's office where more time should be spent discussing these markers, the effect that pain—short term or chronic—is having on a patient's quality of life, and methods to reduce pain that do not involve drugs. Successful pain management will not only result in happier patients, it will result in healthier patients, as my own experience has shown that a patient who is not in pain has a greater willingness and ability to comply with doctor's orders to improve his or her health through activities such as physical therapy, emotional therapy, exercise, and diet.

2022 UPDATE:  The  CDC has released revised pain treatment guidelines. Here's a good read about it. Public comments on the draft guidelines are being accepted through April 10, 2022.  Patients are encouraged to comment. 

This post is part of a blog carnival addressing pain scales that was organized by the amazing rheumatoid arthritis advocate Kelly Young. Kelly is known as @rawarrior and blogs at rawarrior.com. To read additional blog posts from carnival participants, please visit rawarrior.com.