Running on Empty

If you are part of the running community in any capacity, then you are likely familiar with Mary Cain’s recent New York Times op-ed piece in which she describes physical and emotional abuse by her former coach, Alberto Salazar, while she was training at the Nike Oregon Project. Cain, a professional middle distance runner from Bronxville, NY, and the 2014 World Junior Champion in the 3000 meter event, began training with Salazar when she was only 17 years old.

In her video, Cain explains how Salazar and her other male coaches were convinced she had to get “thinner, and thinner, and thinner” in order to get faster. But instead of improved performance, Cain’s under fueled, under nourished body started breaking down. She lost her period for three years and broke five bones. In short, Mary Cain experienced relative energy deficiency in sport (RED-S), a syndrome in which disordered eating (or low energy availability), irregular or missing periods, and decreased bone mineral density are present. As a result, she also experienced self-destructive and suicidal thoughts, all of which contributed to an early halt to a promising career of very talented young woman.

If you did not run competitively in either high school or college, you may be under the impression that situations like Cain’s are isolated incidents. Sadly, however, that could not be further from the truth. In fact, they are all too common in all levels of women’s sports.

I ran cross country and track in both high school and college and have always had male coaches. And while my high school coach was fantastic, and always had nothing but encouraging words for everyone on the team, my college coach was moody and abusive. Don’t get me wrong, I remember much of my time as a collegiate runner very fondly, and I made many lifelong friends during those four years on the team. But, I also have darker memories of that time. I graduated college in 1993, and yet still have a painfully clear memory of a conversation with my coach one day on the track. It was cool and cloudy day in early spring, and we were standing on the far side of the track near the 200 meter starting line. I was not having the best day, performance-wise, probably because I had stayed up late the night before cramming for an exam.

My coach said, “Your thighs are getting too heavy.”

Not quite sure I had heard him correctly, I responded, “What?”

“Your thighs are getting too heavy,” he repeated.

I can’t even remember what I said or did immediately after that. I was shocked. I knew that he had criticized some of my teammates about their weight, but it was the first time he had said anything to me. I had always been naturally lean, and was already one of the more slender women on the team, standing 5’8″ tall and just barely 120 lbs. at the time.

I do remember what I did later that day at the dining hall, though. I ate a smaller meal than what I needed to properly fuel my body. Fortunately, however, I also reached out to one of my best friends on the team about what had happened. Never one to be easily influenced, she convinced me that he was “wrong” (to put it politely), and that I should just ignore it. And thankfully, I did…to a point. I never starved myself to the point of only eating salads for lunch and dinner, as some of my teammates did, but the experience did lead me to be hyper aware of my weight at any given time.

Think about that for one moment. My coach said 6 words to me about my body, more than 25 years ago, and I still remember almost every detail about that conversation.

Coaches play a highly influential role in the lives of the athletes they coach. And there are some great coaches in this world – coaches who support and nurture their athletes, who help provide them with an environment in which they can grow and thrive as individuals. But there are also a lot of not-so-great coaches, like my college coach and Alberto Salazar, who hold a lot of power over the lives of young, vulnerable athletes, but don’t always make the wellness of those athletes a priority.

In another recent New York Times article, retired professional runner Lauren Fleshman offers some helpful advice as to how we should address this pervasive problem. Essentially, we need to do a much better job supporting girls and women in sports, while not holding them to unrealistic body standards and forcing them to fit into a sports program designed for boys and men. We need to have more women coaches in power, and need to make more resources, such as sports nutritionists and psychologists, available to athletes of all genders. It would be disingenuous not to acknowledge that a lean build can provide a competitive advantage, but it is far from the only factor, and weight loss should never be the focus of a training program. Rather, athletes should be provided with comprehensive information about nutrition and RED-S, which would help decrease injury risk and improve physical and mental health for both females and males alike.

If you, or anyone you know, is suffering from an eating disorder, there is help available. Please talk to your doctor or visit https://www.nationaleatingdisorders.org to learn more about the National Eating Disorder Association (NEDA), which supports individuals and families affected by eating disorders. For 24/7 crisis support, text ‘NEDA’ to 741741.

This piece first appeared on StateCollege.com on November 30, 2019.

Thanks for reading,

Cheryl

Move. Tag. Support. Share.

These four simple words comprise the essence of #IMovedToday, a social media movement that aims to support and encourage people in their efforts to integrate more activity in their lives.

Many people are starting the new year with new goals that involve movement and health. In fact, according to a YouGov poll, the most popular New Year’s Resolution for 2019 was to get more exercise…a great goal! Unfortunately, according to U.S. News, approximately 80% of resolutions fail by the second week of February. The reasons that happens are numerous and often complex, and are usually accompanied by sinking feelings of guilt and failure, as people slip back into their old, less healthful habits. But what about those 20% of people who stick with their resolutions? What factors are associated with making positive long term changes in their lives?

A study from 2016, led by Drs Kaitlin Woolley (@Kaitlin_Woolley) and Ayelet Fishbach, and published in Personality and Social Psychology Bulletin, suggested that both enjoyment and importance are significant factors in whether people stick to their resolutions. In fact, the researchers found that enjoyment was the factor that mattered the most. In other words, if the participants were getting immediate, positive rewards from their new habits, they would be more likely to make positive long term changes.

This is where #IMovedToday comes in! #IMovedToday is both a hashtag and a supportive, non-judgemental online community that will support your efforts to incorporate more movement in your life. The “rules” for participating are simple and welcoming:

• 1) MOVE. Anyway you want to. Walk, run, bike, shovel, lift, yardwork. Literally anything you want!
• 2) Post about your movement on Twitter or Facebook. Use the #IMovedToday hashtag, and tag others you think would want to join.
• 3) Support other #IMovedToday people. Search #IMovedToday on Twitter, and like, encourage, and engage!
• 4) Have FUN! Enjoy your bodies abilities and reach your goals to MOVE!

#IMovedToday is the brainchild of Mark Milligan (@markmilligandpt), a practicing physical therapist in Austin, TX, who specializes in orthopaedics and pain science. Mark is also the founder of Anywhere Healthcare (@Anywhere_Health) – “A telehealth platform solving the problem of healthcare access by allowing any provider of any discipline remote access to their patients.”

I recently spoke to Mark, and asked him how he came up with this simple, yet highly motivating, concept. Here’s what he had to say:

“Life is changing in America. In America, people are dying faster and earlier every year and for the first time in century, the life expectancy in the U.S. is getting shorter. Diseases such as heart disease, respiratory disease, cancer, and diabetes are changing the landscapes of our lives as we all know someone who has or who has died from one of these conditions.

Movement is necessary for life. The information and evidence on movement and it’s protective qualities at this point in time are undeniable. Here’s the catch. Most people think that exercise has to be hard, long, exhausting, and unpleasant. That’s a myth. The research supports that just 150 minutes per week (about 21 minutes per day) of intentional movement can provide great health benefits for body and brain! However, if you have not been moving, or have pain with moving, or are having a hard time seeing the benefits of movement, you are not alone!!

Change is hard, especially changes that take daily sacrifices and different choices even when our surroundings don’t change. Most have experienced this in some way throughout their lives. The most common experiences include trying to lose weight, start exercising, stop drinking, to be honest, changing any behavior that is different from the one you already do!!

On the path of change there are several different stages and each stage needs support in different ways. During all stages, information and support are needed. #IMovedToday was born out of a desire to provide information and support people making the choice to change their life, and move when that choice is HARD! So please join us. We will support you in your choice to move and make a difference in your life, and the more people you bring along with you, the better!”

And there you have it! How did you MOVE today?

Thanks for reading,

Cheryl

Building resilience through new experiences

When is the last time you tried something new? And I don’t mean something mundane like a new flavor of coffee or eating at a different restaurant, but rather, a sport or activity intended to challenge you in some way. Importantly, this experience need not be a demanding physical pursuit. Rather, it could be anything that forces you out of your comfort zone, such as learning a new skill, joining a local club, volunteer work, or whatever interests (or scares!) you. Whether your goal(s) involve meeting new people, being more physically active, or checking boxes of your bucket list, trying new things can lead to personal growth and enrichment, as well as help build resilience.

I experienced persistent pain for the better part of a decade, and during this time, I felt my world shrink, and my experiences (new and old) were far and few between. I still went to work, spent time with family, and fulfilled social obligations, but struggled to participate in many other activities, either due to the pain itself, which often worsened with physical activity, and/or feelings of jealousy, anger, and resentment, as I watched my friends and family go about their active lives and do the things I could no longer do without pain…things that were no longer enjoyable to me because of my pain and the seemingly hopelessness of my situation.

Current advice to patients experiencing persistent pain usually involves encouraging them to continue to participate in their favorite activities, despite their pain. And this makes a lot of sense, considering that social isolation can lead to depression and, in some cases, further worsening of symptoms. But what happens when participating in said activities actually worsens your mood and increases feelings of isolation?

I’ve been a runner for most of my life. I started running when I was 13 years old, ran competitively in high school and college, and even continued running after my persistent pain started in my late 30s. Eventually, though, after I developed two tibial stress fractures, vertigo, and started having trouble walking, I had to stop. In fact, I stopped running for nearly three years. But you know what I didn’t stop (at least initially)? Being involved. In fact, I made a strong effort to remain connected with my friends and the local running community. I started timing local road races, and even got certified as a USATF Track and Field Official so I could “participate” in college track and field meets. But truthfully, this did not help me feel less isolated. In fact, it only amplified my feelings of inadequacy and sadness about not being able to run. For me, the answer (at the time) was to stop being involved with running, to stop rubbing salt in my wounds. I needed time for these invisible wounds to heal, while I also worked on healing my body.

Now that I consider myself recovered from persistent pain, which importantly, does not mean I’m 100% pain free all the time, I am once again running and am involved with the local running community. But unlike before my pain, I am no longer hyper-focused and dependent on running. And while I still identify as a runner, it’s no longer my identity, per se. I no longer link my happiness to running. Rather, I have worked very hard over the last couple years to broaden my interests, to try new things, to grow as a person and as an individual, to build resilience. Granted, most of my new interests are still physical in nature, and include strength training, swimming, cross country skiing, and road cycling, among others. This past weekend, I even participated in a summer biathlon event (run, shoot) which was a real blast (pun intended)! Okay, summer biathlon does involve running, but it also involves something new, and was really fun and unique experience for me.

I went cross country skiing for the first time this past February.

In hindsight, I wish I had made more of an effort to try new things and get involved in a variety of activities before I developed persistent pain. Perhaps, then, I would have had other interests to focus on while I was working to recover. Could I have tried more new things while I was going through persistent pain? Definitely. But it’s also true that new experiences, including many otherwise enjoyable activities, can seem too overwhelming while dealing with the stark realities of living with pain.

I realize now that my narrow and hyper-competitive focus on running likely amplified my feelings of loss and deep social isolation often experienced by those in persistent pain. These days, I am no longer dependent on running for my happiness. I no longer have all my eggs in that basket. Yes, I’m a runner. But I am also a wife, a mother, and so much more.

Thanks for reading,

Cheryl

PA Summer Biathlon Race Report

One of my favorite events to watch in the Winter Olympics is the biathlon, a race that involves the power, speed, and endurance of cross-country skiing with the precision, accuracy, and calm of marksmanship. Depending on the particular competition, any missed shots result in extra distance or time added to the contestant’s total skiing distance or time, and the contestant with shortest total time wins.

I’m not sure about anyone else, but I get pretty pumped up and overconfident about my athletic abilities while watching the Olympics. Ski jump? “I could do that!” Haha! Uh…no. Okay, I might be able to do curling (very poorly), which has a low risk of death and looks easy, but in actuality, also requires a high level of skill and training. But seriously, it’s hard not to get excited about sport in general while watching the Olympics. It’s a truly amazing display of elite athletic ability and competition.

In any case, back in February, while reading more about Olympic biathlon, I happened to discover that Pennsylvania (PA) has a Biathlon Club and holds four summer biathlon events each year. I was immediately interested. Summer biathlon?! What’s that? Well, obviously, there is no snow here in the summer in PA, so instead of cross-country skiing, there is cross-country running. (I later found out that the PA Summer Biathlon series was originally developed as a way to encourage US interest in winter biathlon.)

http://www.pabiathlon.com/

After checking out the PA Summer Biathlon schedule, my spouse, son, a friend, and I signed up for one of their events, which happened to be this past Saturday in Nescopek, PA. As the weekend approached, the weather forecast was not looking good. They were calling for heavy rain the few days before the race and on race day morning. Disappointing, but a little lot rain was not going to stop me. I’ve run in poor weather conditions before, and was ready for the challenge.

This biathlon was set up as follows:

1 mile run

25 m shoot in prone (5 shots)

1 mile run

25 m shoot in standing (5 shots)

1 mile run

The run was an out-and-back course, mostly flat, through a corn field, and there was a 70 m penalty lap for each shot missed before heading back out for the next mile loop.

No experience is necessary, but if you’ve never participated in biathlon, you must attend the beginner’s clinic which is held immediately before the race. We all went to the clinic which was really helpful and informative. We learned about the rules and history of biathlon, how to use a .22 caliber biathlon rifle, and then had a chance to practice 5 shots in prone and 5 shots in standing (with individual supervision/training). I surprised myself, never having handled a rifle before, and made 4/5 in prone and 2/5 in standing (during practice). Just before the event, we had a brief pre-race meeting and then got started. They sent people off in sets of 1 or 2 on the minute. We wore biathlon bib tanks over our race clothes, and it had the number which told you when you started. I had number 7 and so I started in the 7th wave.

To start, we ran a mile on the well marked, out and back course. The course conditions were very poor…uneven footing, flooded, with deep, unavoidable puddles that seemed to get bigger and deeper on each lap. To add to the challenge, I had to stop and tie each of my shoes again during the first mile (despite double knotting them beforehand). But honestly, I LOVED it! Well, I probably would have overall enjoyed myself more if it were sunny and 65°F, but the ridiculousness of the hard rain and mud brought back a lot of fun memories of college cross country. Also, since it was an out and back course that we did three times, we all got to see all the other competitors several times, which added to the enjoyment. There was really no way to run super fast through the course, although the overall winner, a local, very experienced woman biathlon competitor, managed close to a 6:30 pace to win the entire event.

After the first mile, you head to the range. There is a walk zone where you must stop running as you enter the range. The range marshals then direct you to a lane where you set up and shoot. If no lanes are open when you get there (which didn’t happen to me), they will give you a time deduction for the time you spend waiting. Anyway, for my prone shots, I only made 2/5 this time. My rifle jammed on my 3rd shot and I had to raise my hand and ask for help. It took a minute or two, and they couldn’t fix it, so they changed out my rifle. Supposedly, they deducted time for that, but I’m not sure how much or exactly how they figured it out. I suspect it was a loose estimation. Honestly, though, I wasn’t really too concerned about that since it was my first time competing, and it was pouring rain. Anyway, since I missed 3 shots, and I had to do 3 penalty laps and then head back out in the mud for another mile.

After my second mile, I headed back to the range. For my standing shots, I only made 1/5. No problems with the rifle, but it was a lot to remember to how set up in the ideal position, and it’s harder to control your shot when you are still breathing relatively hard. Four more penalty laps…..

I then headed out for the last mile. At this point, each of my “lightweight” Topo Fly-Lite 2 trainers weighed about 5 lbs each. But who cares?!?!? It was such fun! Classic cross-country style running!!! At least I finished my run before the sideways, torrential rain came down. Other competitors were not so lucky.

In any case, we all won awards. I took 1st place Masters Female and my spouse, son, and friend, all won their age group. Oh, and for each shot you miss during the event, you get a ticket to put in a raffle. And we all won raffle prizes too! In fact, everyone won a prize! Yay!

Aside from the rain, the only real bad part was the bathroom. It was a true outhouse, and not exactly clean. But overall, super fun!!!! We all enjoyed ourselves a lot. There are several more events this summer, and I’m already signed up for another one in July.

Hope you enjoyed this race report!

Cheryl

Disclaimer: I do not own a rifle or any other type of firearm, and I am very much in support of stricter gun control laws. My interest in biathlon was to experience the combined sport aspect of running and marksmanship.

A Patient’s Perspective

I was recently interviewed by Edwin Porras, an ambitious and inquisitive physical therapy student, who asked me about my experiences with injury, pain, and physical therapy. He is eager to spread the word to patients and clinicians alike about the importance of allowing patients to tell their full story. Ironically, I think I’ve had more opportunities to tell my full story since I’ve recovered from persistent pain than I did the entire 6+ years I was in pain! The interview, which was first published here on March 13, 2018, appears in full below.   – Cheryl

Missed Opportunities?: A Patient Interview with Dr. Cheryl Keller Capone, PhD

“Movement competency and variety are key to building resilience and confidence in one’s body.” -Dr. Cheryl Keller Capone

According to the CDC, in the year 2016 approximately 84% of the adults had some sort of contact with a health care professional. For kids, that number shoots to 93%. Additionally, some physician visits are much, much shorter than expected and there is some data that suggest patients cannot tell their story without being interrupted. On average, patients are interrupted by the 18 second mark (this varies depending on the source). These numbers side by side reflect an overarching concept in physical therapy and healthcare as whole: There are hundreds – if not thousands- of missed opportunities to build meaningful relationships each day. The average 18 second interruption is specifically for physicians but attacking physical therapy colleagues is not the goal. Instead, these statistics are a serious call to arms for all providers to actively listen to a patient’s story.

There are a ton of awesome resources specifically for physios ranging from business, soft-skills, and clinical examinations. More recently there have been leaders in the physical therapy industry also pivoting to provide joint patient-provider resources to learn from one another. So, in the spirit of this culture shift, I’ve chosen to shut up and listen to scientist and patient Cheryl Keller Capone, PhD give her input regarding patient care in PT and her perspective on the profession.

Q: Can you please tell us a little about who you are and what you do?

A: I am an Associate Research Professor at Penn State University. I am currently using genomics to study blood cell development with an overall research goal of understanding gene regulation in mammals. In total, I have 24 years of scientific research experience in several different areas, including muscle development, neuroscience, and mitochondrial DNA forensics.

In addition to my research, I’m also a certified personal trainer through the National Academy of Sports Medicine and enjoy working with clients on a part time basis.

Q: What do you prefer to be called? Dr. Cheryl Keller Capone? Dr. CKC? Run CKC?

A: Most of the time, I just go by Cheryl, but I do have multiple aliases! In scientific settings, I actually go by Cheryl Keller or Dr. Keller, as my PhD and all of my scientific publications are under the name of Keller. When I got married, it was still pretty common for women to change their name, so at the time I chose to add Capone to the end of my name, making my full name Cheryl Keller Capone, which I do use for my SoMe handles. Nowadays, it is more common for women to keep their name, and if I were getting married today, I would not change it.

Q: I see on Twitter that you are a very physically active person. If you had to rank your top 3 favorite physical activities, what would they be?

A: I primarily identify as a runner. I started running when I was 13 and ran competitively in high school and college. More recently, I took up road cycling and swimming and have competed in a couple of triathlons. That said, I would not include swimming in my top 3! I’m not a very good swimmer (at least not yet), and still feel like I’m struggling in the water. It’s a highly technical sport and takes a very long time to master, especially as an adult. So, for the third sport, I think I’d have to choose hiking. There are a lot of great places to hike in central Pennsylvania.

Q: Which do you recommend everybody try at least once and why?

A: I think people should try to participate in as many different sports and activities as possible. Movement competency and variety are key to building resilience and confidence in one’s body.

Q: In as many or few words as you like, can you please tell us your story as a physical therapy patient and where it has lead you to today?

A: I have a long history of pain and injuries, including a mild neck injury and a repetitive lumbar hyperextension back injury dating back to adolescence. Although I experienced rather severe back pain during my teen years, I did not receive any treatment as the doctor who examined me at the time said that it was probably just a muscle spasm and that it would get better. Unfortunately, it took a very long time to improve, and I later discovered that I have a spondylolisthesis of L4/L5 with evidence of a bilateral pars defect. As a result, I’ve experienced extension based back pain as well as some limitation of cervical rotation, for most of my life. That being said, I did not let that stop me, and went on to run competitively in both high school and college.

I continued to run after college but experienced a variety of lower leg injuries and pain over the years that sometimes forced me to take some time off. Overall, though, nothing too severe. Then in 2009, I began experiencing some bilateral pain and intermittent tingling in my feet that developed after I stopped using my orthotics for running. I continued to run through these symptoms and eventually developed posterior tibial tendonitis in my left foot. I faithfully completed my home exercise program and “graduated” from physical therapy, except that my symptoms did not really improve. Instead, things got much worse. Over the course of the next few years, I not only had pain in my feet, but I also developed many other symptoms, including pain in my back, constant tingling in my feet and one hand, two tibial stress fractures, stress incontinence, vertigo, nausea, heart palpitations, difficulty walking, and every time I tried to sleep on my left side, my entire leg would go completely numb.

I saw a variety of clinicians, including several orthopedists and physical therapists, each of whom had a very different opinion as to what was going on. Each provider focused on only a subset of my pain/symptoms (some of which didn’t arise until late in the game) rather than looking at the big picture, and each recommended a different treatment plan. And when the treatment didn’t work, I was told that there was “nothing wrong” with me.

In hindsight, I needed someone to help me calm my nervous system and teach me how to regain control of my body. The problem was that I could not find anyone who could (knew how?) to help me.

Finally, in the summer of 2013, I finally happened across a compassionate physical therapist who helped me calm my nervous system and taught me about movement and strength training. I slowly began to improve and began to see the light at the end of the tunnel. Truth be told, despite tremendous progress and improvement, I eventually plateaued and was still not yet back to running. In hindsight, I just needed a fresh pair of eyes and sought help from an insightful chiropractor who identified a few more pieces of the puzzle and facilitated my return to running. It was not an easy road, but I’m very grateful for these two caring clinicians who helped me and taught me the skills I needed to get control of my life

Q: What was your initial impression of the physical therapy profession?

A: I first went to physical therapy when I was 16 for some knee pain associated with running. At the time, it was diagnosed as “runner’s knee”, and the condition did initially improve with physical therapy, but to be honest I struggled with that same knee pain (as well as back and hip pain) on and off for many years, suggesting that the underlying issues were not addressed. As we now know, “runner’s knee” is more of a collection of symptoms, rather than a specific diagnosis, and much of the treatment I received was heavily focused on knee biomechanics, rather than considering me as a whole person, including my history of extension based back pain.

Q: What is your opinion of the profession now?

A: I strongly believe in physical therapy as a means for addressing a variety of musculoskeletal problems. But I also think there is a very wide range of skill and clinical expertise among physical therapists, and it can sometimes be difficult to find the right therapist for the right person. There are also still a lot of ineffective, non-evidenced based therapies being used to treat patients, and that does a disservice to the patients and the profession as a whole.

On the other side of the coin, many people harbor a lot of preconceived notions and false beliefs about pain and injury, and that can often lead to treatment “failure” and dissatisfaction of physical therapy as a treatment option.

Overall, given the recent movement toward a biopsychosocial model as a treatment framework, I’m very optimistic about the future of physical therapy. But I also think there is a still a lot of work to do, in terms of educating both physical therapists and patients alike, to move the profession forward.

Q: Where/how can the career of physical therapy improve from a scientist’s perspective?

A: Physical therapy should be evidence-based, and physical therapists should always be reading the literature to keep up to date with what’s current in the field. But it’s also worth keeping mind that theories evolve as new evidence becomes available, so it’s important to view the new evidence with a wide lens and a historical perspective. Further, it’s also worth noting that, just because something is published, doesn’t mean the evidence is of high quality. Learn to read and think critically. With that in mind, however, given individual biological variation and unique life experiences, I am also a proponent of N=1, in which each patient is an individual, a single case study.

Q: …From a patient’s perspective?

A: Take the time to really listen to your patient’s full story. Then treat the person in front of you.

Q: Because I follow you on Twitter, I am aware of (and greatly appreciate) how passionate you are about practicality and the critical importance of science in decision making within all realms of life. How does this scientific method reconcile with patient values in the physical therapy clinic?

A: We all suffer from confirmation bias and tend to disregard evidence that does not support our own opinion or preconceived notions. It’s part of the human condition. But it often prevents us from growing and making positive changes in our lives. Working to recognize our own biases, as well as the values and biases of others, can help build a stronger therapeutic alliance between clinician and patient.

Q: If you could give advice to a patient in musculoskeletal pain, what would you say?

A: A turning point in my own recovery was when I finally learned that I could not rely on anyone to fix me…that I needed to own my pain and my own recovery. I, alone, was responsible for my own rehabilitation and return to an active life. It’s a realization that can be both empowering and scary at the same time, but it’s also a path toward independence and resilience.

There aren’t many words to follow powerful responses from a patient like the ones above, so I won’t even try. Let’s continue to move the needle forward on patient care.

Thanks for reading,

Cheryl

Reassuring the Persistent Pain Patient

This post first appeared in The Physical Therapy Tribune on February 6, 2018.

When I was struggling with persistent pain, I saw many providers who confidently reassured me that I’d be fine, that I’d get better. The problem, however, was that even after completing their recommended treatment or exercise program, I was not fine. I did not get better. And not only did I not improve, but sometimes my symptoms got worse, often accompanied by an increasing sense of despair and hopelessness, which would further feed into the pain cycle.

Unfortunately, this experience is all too common among those who suffer from persistent pain. These individuals have often seen numerous clinicians, each of whom may have provided different, and often incomplete, explanations of their pain. The reasons for this are vast and multifactorial, and include our broken health care system, lack of understanding of modern pain science, confirmation bias, inadequate or inappropriate treatment, and the use of quackery, among others. But what I want to discuss in this post is the concept of reassurance. It is quite common, and often expected, for clinicians to reassure patients that they will improve over time with (and sometimes without) treatment. And no doubt, especially in acute care situations, a little reassurance can go a long way toward healing, especially for patients exhibiting fear and avoidance behaviors. Further, sometimes persistent pain patients also just need some reassurance that that pain doesn’t equal damage, and that it’s okay to move.

But is reassurance always helpful to those experiencing persistent pain? I’d argue that there can often be a fine line between helpful reassurance and overpromising. Given the complexities of pain and pain-related behaviors, it is not uncommon for pain to be/become persistent, even in the presence of a strong therapeutic alliance in which patients receive high-quality care from a skilled provider and take an active role in their own recovery. And if pain can persist/be persistent despite these desirable circumstances, what happens in the majority of persistent pain cases in which many factors complicate potential recovery? More pain.

But wait? Wasn’t the patient reassured that they’d “be fine”?

Oh, they weren’t fine? They didn’t “get better”?

What do you think goes through the mind of a patient with persistent pain when they are told they’d improve, but then don’t? I know what went through my mind, but also spoke to a few people I know who are currently experiencing persistent pain, and asked them whether they had been reassured about their pain and prognosis, and if they found that reassurance to be helpful. Several people responded, all with a consistent theme. In particular, the general consensus was that early on, the reassurance was welcome and gave them hope, but as time when on and treatment failures accumulated, they began to lose confidence in the ability of the medical community to help them.

This comment pretty much sums it up:

“At first, I did. It seemed to offer hope, and the first orthopedist I saw as well as a physical therapist said they were determined to find answers and find the source of the pain/issue. At about the 8 month mark, after many tests, x-rays, MRI’s and many, many PT visits, the reassurance seemed hollow.” – Vanessa M.

Although it’s not scientifically based, I think this comment illustrates how important it is to beware of how, as a clinician, your words influence those in your care. Reassurance is an important aspect of care, and sometimes that may be all someone needs to improve their outlook and condition. But it’s also prudent to keep in mind that, depending on the situation at hand, the type of reassurance you offer can also be viewed as false hope or even insincerity by patients struggling with persistent pain.

So, what should you do? I suggest offering gentle reassurance, without overpromising. Recovery from persistent pain is never a guarantee. But is it possible…and there is most likely a path forward for almost everyone. Your job as a clinician is to:

1. Use your knowledge and expertise to help them learn to find their own way
2. Help them set realistic goals and expectations.
3. Offer them support and encouragement.

During my own recovery, the physical therapist who helped me the most spoke this powerful phrase:

“I don’t see anything that would preclude a full recovery”

Let’s break that down. He did not say that I’d “be fine”. He did not say that I’d be better in 6-8 weeks. He did not say that recovery would be easy. Rather, he told me that it was going to take hard work. He told me that it was going to take time and patience. He told me that I’d continue to have some bad days, but over time we’d expect to see more good days than bad days. He told me we would work through it together. He was optimistic. He gave me hope. But he never overpromised. And during some of those dark days that are inevitable while experiencing persistent pain, I would think of that statement. It helped drive me forward. It was, well…..reassuring.

Thanks for reading,

Cheryl

 

Want to learn more about your pain? Talk about it.

It’s been a long time since my last post, and even longer since I’ve written about my chronic pain experience. In case you missed it, you can read my basic story here. I’ve also been very fortunate to have had several recent opportunities to tell my story on a couple physical therapy based podcasts, beginning with the Duck Legs podcast (episode 8) this past spring and more recently on the Pain Reframed podcast (episodes 14 and 22). Talking about my pain experience on these podcasts turned out to be not only a wonderfully cathartic experience, but also provided some additional insight and clarity to my pain as well as some of the challenges I faced while trying to find appropriate care and during my recovery.

Perhaps not surprisingly, the more I’ve talked about my pain experience in public, the more people have reached out to me looking to gain insight into their own pain or that of a loved one. I feel much empathy and compassion for these individuals, as I understand all too well how pain can quickly become all-consuming in the search for answers and relief. Pain is a highly individualized experience, and modern pain science tells us that pain is complex with biological, psychological, and social components. And the reality is that there is rarely a simple answer or solution to pain.

When I was in chronic pain, my family and friends quickly grew tired of hearing me talk about it, and quite honestly, I didn’t really blame them. It’s difficult to listen to someone talk about his or her pain day after day. And while it’s often true that focusing or dwelling on your pain can amplify or prolong it, it is also true that the act of explaining your pain to someone else can help you learn more about your pain and provide clues as to what provokes it and what relieves it. This information has much value as it can help you identify ways to manage or control your own pain, which is often a more effective long term strategy than one that relies primarily on external sources. Further, this increased self-awareness can also be particularly useful when seeking care from medical providers who are often under scheduling constraints and only have a limited amount of time to spend helping you.

To be clear, when trying to understand something as complex as pain, I feel that the act of actually speaking the words out loud has advantages over just thinking quietly about it. The process of forming the words when speaking (or writing) forces you to think more clearly to find the right words to describe exactly what you are feeling. And by the “right” words, I don’t mean to imply that you need to use proper medical terminology. Rather, use the words that come natural to you. For example, what movements or positions seem to make your pain worse? What activities are you having trouble accomplishing and why? What relieves your pain? Take the time to talk through and explore these questions and possible solutions, and speak them out loud or write them down. What did you learn about yourself and your pain? Take that information and make a change! Mindfulness is key (and the topic of an upcoming post)!

Hopefully, you have a close friend or family member who is willing listen to you, but if not, don’t be afraid to talk out loud to yourself! (Of course, you may want to do this in the privacy of your own home, or risk looking a bit odd in public.) I’m completely serious though…speak the words out loud. I think you will be surprised at how challenging it can be at first, but how valuable it is the long run in helping you to clarify your thoughts and emotions as well as aid in the identification of various recovery strategies.

Over the next few weeks and months, I plan to write more about my own recovery strategies, as tell you about my first triathlon. Yes, you read that correctly. I did a triathlon this summer as a celebration of my recovery from chronic pain. Woohoo! Stay tuned….

Thanks for reading,
Cheryl

Getting my Duck Legs on

I recently had the honor of being a guest on the Duck Legs Podcast, run by physiotherapy students Jared Aguilar, Dy’mire Jones, and Tyler Adams. Their mission, if you will, is to interview various professionals in an effort to go beneath the surface to better understand the mindset needed to be successful.

First, let me say that these guys make a fantastic team! I had never been on a podcast before, and admittedly I was a little nervous. But after just a couple minutes of talking with them, it was as if I was chatting with a group of old friends.

In Part I, we discuss my journey to becoming a scientist, including how I battled self-doubt and self-awareness. You can hear my complete origin story as a researcher and how I transitioned between several fields of science, from muscle development to neuroscience to genomics. You will also learn about my struggles with persistent pain and my frustrations with the US healthcare system.

In Part II, we discuss my physical therapy journey, including how I got into strength training, pain science, appreciating movement, finding a passion for coaching, empathy, epigenetics, natural selection, and…wait for it…evil turtles!

You can access the full episode on iTunes by clicking here.

I have to admit that one of the hardest things about doing this podcast was reviewing the recordings afterwards. (cringe) Do I really sound like that? Ugh!

That aside, overall I had a great time, and it was a valuable learning experience. Sure, I could have probably done a better job explaining some of the scientific concepts, used few more analogies, etc., but we are our own worst critics, and the first time for everything is always a bit rough. Truth!

In any case, I want to thank  Jared, Dy’mire, and Tyler for the wonderful opportunity, and encourage you to follow the Duck Legs Podcast on Facebook and Twitter. They have had some great guests so far and have big plans for the future. You won’t be disappointed! Go get your duck legs on!

Thanks for reading,

Dr. Cheryl Keller Capone

 

 

 

Do you feel the need, the need for fatigue?

If you’ve never seen the classic ’80s movie, ‘Top Gun’, go watch it. For those of you have seen it, you may recognize that the title of this post is based on an oft-quoted line: “I feel the need, the need for speed.” The movie is about a group of advanced fighter pilots in an elite US Navy flying school. These guys are in the prime of their life, physically speaking, and they go hard and fast. All. The. Time.

Okay, now that we have today’s ’80s education out of the way….

I was talking to a friend the other day, and she was telling me about a recent workout she did at a local gym. She had taken a high intensity interval training (HIIT) class, which involves alternating short periods of intense anaerobic exercise with less-intense recovery periods.

“It was great, “she said with a big smile on her face, “My legs were toast. I could barely walk afterwards!”

Let that sink in for a moment. She could “barely walk” at the end of her workout, and she was happy about it!

Now, I’m sure she was exaggerating to some extent, but her sentiment is not uncommon. In fact, I regularly see posts on social media from people who brag about feeling completely spent from spin class, kickboxing, running, or a workout involving scores of burpees, push ups, lunges or whatever. Regardless of the nature of the exercise, these individuals regularly push themselves close to their breaking point. Not only do they believe that exhaustion is the hallmark of a good workout, but they seem to have a need for fatigue. They crave that physical, psychological, and emotional rush that often accompanies a really hard effort. It can feel satisfying in more ways than one, and serves as an immediate confirmation (and sometimes as a lasting reminder) that you “worked out”….an invisible badge of honor, so to speak. And I get it. I used to seek it too. In fact, prior to my long bout with injuries and chronic pain, I often viewed deep fatigue as an integral, even desirable, aspect of exercise. If there was no fatigue, I didn’t work hard enough. But I was wrong.

Complete exhaustion does not equal great workout.

Before I go any further, allow me to explain. There is nothing wrong with hard work that challenges you. And I’m not picking on a specific form of exercise. Crossfit, powerlifting, running, HIIT, just to name a few, all have value and provide exercise benefits. Getting your heart rate up to promote cardiovascular fitness is, indeed, a valuable component of a healthy exercise program. There is also a time and place for pushing your limits and going for PRs. However, these times should be saved for competition and/or lightly sprinkled on top of a large volume of quality training that is designed to help you improve, not stress your body to the point at which you have difficulty moving your body.

Wait…doesn’t exercise reduce stress? Yes! Many studies have demonstrated that regular exercise has been shown to decrease overall levels of tension, elevate and stabilize mood, improve sleep, and improve self-esteem.

So, why would exercise cause stress? Well, exercise itself is a form of physiological stress. The body actually needs stress to grow stronger, faster, more agile, etc. and, in fact, the stress must be above a minimum threshold intensity in order to produce these adaptations. But here’s the rub: Too much stress, in the form of intensity and/or frequency, can result in chronically elevated stress hormones such as cortisol, which can interfere with learning and memory, lower immune function and bone density and has been linked to weight gain, high blood pressure, and heart disease, among other things. Further, pushing your body to the point of excessive fatigue also places a tremendous amount of stress on your nervous system. The reason you may have “trouble walking” after a hard workout is because you’ve taxed your nervous system to the point where the brain starts shutting down your ability to move before you’re able to inflict serious or permanent damage to yourself.

Does this sound like a good path to better health and fitness?

I don’t think so either. The goal of any health and fitness program should be to improve, not take a step backwards. Yet, day after day…especially in January….people flock to the gym and push themselves beyond their limits. Quite frankly, it’s counterproductive and not helping them reach their goals. The hard part for most people, however, is finding that sweet spot. How do you know if you are getting enough exercise, but not too much? How do you know if you are putting in enough effort, but not too much?

Ask yourself…

Are you making steady progress toward your health and fitness goals? Are you moving well, seeing improvements in body composition and strength? Are you less “out of breath” after you run up a flights of stairs?

Are you practicing quality over quantity? More is not always better. Better is better. Strive for high quality training. If quality starts to fall off and your form or technique starts to fall apart, then you’re done. Better yet, stop before your form begins to break down. (An exception to this rule is hypertrophy training, or bodybuilding, which requires working to failure.)

Can you see yourself exercising this way a few times per week for the next 10-20 years? A good exercise program should be sustainable over the long haul.

How do you feel after your workout? A quality workout should leave you feeling invigorated and ready to tackle your next task of the day.

Do you feel completely recovered before beginning your next workout? If not, you are very likely are overtraining which depletes your body’s resources and inhibits your ability to recover, putting yourself at increased risk for illness or injury.

“Suppress your desire to keep pushing and learn to do the minimum amount in order to progress.” – Neil Meekings, Trainer and Therapist at Kinect Health

One also should keep in mind that, in addition to recovery, proper nutrition and adequate sleep are critical to good health and fitness. You can be on an ideal exercise program, but if you are eating and sleeping poorly, your performance will suffer and progress will stall.

Listen, it would be great if we were forever in our physical prime like Maverick and Goose. (Well, maybe not so much like Goose. And if you don’t know what I’m talking about, go back and reread the first sentence of my post!) But the reality is that most of us are not in our twenties, and if you are in your twenties, you won’t be there forever. Going hard all the time is just not sustainable, and it won’t improve your health and fitness in the long run.

Finally, always remember to put health before fitness. If you are having any pain or discomfort, make time to seek help from a physical therapist who can help you address it before it becomes a bigger problem. They can help facilitate your return to a pain-free, active lifestyle.

Happy New Year!

Thanks for reading,

Dr. Cheryl Keller Capone

Why do people ask strangers for medical advice?

I belong to a local “moms” group on a popular social media site. It is a closed group of over 3,700 members. Most of the posts are fairly mundane with members usually looking for recommendations or support for this or that. More recently, however, I have seen an increasing number of posts in which people are looking for medical advice….and not just medically related advice, such as newborn sleeping patterns, but specific questions about illnesses and injuries.

To illustrate, here are three recent posts (unedited, but names omitted for privacy):

I think I may have plantars fasciitis. What’s the best way to treat it?

My 2 yr old has been complaining that his belly hurts for 3-4 days. He won’t eat but wasn’t really an eater before. He won’t drink much, if anything. He won’t play or be himself. Temperature was 99.4. He’s not puking, no diarrhea. Flu?

I’m looking for opinions on the flu shot for my 9 month old son. Last time we were at the doctor they offered it to me but I declined because I was unaware babies that little could have one and I needed some time to think about it. He has an appointment tomorrow and I know they are going to ask again. I’m having some mixed feelings about it! Help!

The last one was particularly disconcerting to me because this poster got a lot of support from anti-vaxxers, all of whom encouraged her not to vaccinate her son.

To be very clear, this group is not moderated by anyone with a medical degree. Rather, members of this group are asking other, equally unqualified, strangers for medical advice. When I first started noticing these posts, I was somewhat surprised. Why would someone ask a bunch of strangers for medical advice, I thought to myself, incredulously? But the more I thought about it, the more I realized that I did understand at least some of the reasoning behind it, because (shhh….don’t tell anyone) I’ve done it myself.

Wait, what?!

Yes, it’s true. I turned to the internet for medical advice after losing confidence in the local medical community when I was struggling through many years of chronic pain, paresthesia, and movement dysfunction. Before I go any further, let me clarify that I started off taking a relatively standard route for some pain and intermittent tingling in my feet that developed in 2009 after I stopped using my orthotics for running. I saw my primary care doctor who sent me to an orthopedist, who referred me to physical therapy. Mind you, each provider had a different opinion as to why I was having pain and tingling. I faithfully completed my home exercise program and “graduated” from physical therapy, except that my symptoms were not really any better. Instead, things got worse…much worse. Over the course of the next 4 years or so, I not only had pain in my feet, but I also developed a multitude of other symptoms, including pain in my back, constant tingling in my feet and one hand, vertigo, nausea, heart palpitations, difficulty walking, and every time I tried to sleep on my left side, my entire leg would go completely numb from hip to toe.

To be perfectly honest, this was just the tip of the iceberg. I could write pages upon pages describing my various symptoms and how I felt betrayed by my own body. My nervous system became so jacked up that at one point I’m pretty sure I could feel all the seams of my clothes against my body. Given my background in neuroscience, I came to understand that pain is a complex beast with biological, psychological and social components, but knowing that did not lessen my symptoms. I needed help. In hindsight, I needed someone to help me calm my nervous system and teach me how to regain control of my body. The problem was that I could not find anyone who could (knew how?) to help me. Over the course of several years, I saw two primary care doctors, four orthopedists, three physical therapists, two chiropractors, two podiatrists and a massage therapist.

I hated filling out new patient forms. How could I possibly describe all of my seemingly-unrelated symptoms without sounding like a hypochondriac? I couldn’t. Sigh. No, I didn’t want pain meds. No, I wasn’t depressed. I was afraid, however, and angry. I was afraid of being essentially disabled at the age of 40, and I was angry that no one could seem to help me. In a matter of only a couple of years, I went from being able to run sub-20 min 5K to having difficulty just standing up and cooking dinner for my family. I didn’t care about running anymore. I just wanted to be able to get through the day without pain and numbness.

Frustratingly, everyone had a different opinion on what was “wrong”. Each provider focused on only a subset of my pain/symptoms (some of which didn’t arise until late in the game) rather than looking at the big picture, and each recommended a different treatment plan. And when the treatment didn’t work, I was told that there was “nothing wrong” with me.

Eventually, I lost confidence in the ability of the local medical community to help me, so I turned to the internet for information, desperate to find something or someone who could shed some light on my situation.

I asked strangers on the internet for medical advice.

Truth be told, asking unqualified individuals for advice did not solve my problems, but I did learn some helpful information from online professional resources. I also discovered that there are many other people out there who also feel let down by our health care system for a variety of reasons. Some of these reasons are relatively straightforward and related to access and cost of care and insurance coverage. My own quest for relief forced me to take a lot of time off of work for appointments, and I spent many thousands of dollars (out-of-pocket) for treatments, procedures and physical therapy. Fortunately, I have job flexibility and decent health insurance through my employer, and could therefore absorb these costs and not lose my job. This is not a viable option for most people, however, and so I can understand why many people turn to the vastness of internet and the “crowd sourcing” of social media….someone out there must have the answer, right?

No doubt that there are numerous other factors at play that lead people to seek medical advice on the internet, the discussion of which are beyond the scope of this post. But I think the fact that people are willing to ask complete strangers for medical advice speaks volumes about the depth and complexity of this problem.

As for me, when I was at the proverbial rock bottom in the summer of 2013, I finally happened across a compassionate physical therapist who helped me calm my nervous system and taught me about movement and strength training, and more recently, an insightful chiropractor who identified a few more pieces of the puzzle and facilitated my return to running. It was not an easy road, and I still face some challenges. But I’m very grateful for these two caring clinicians who helped me and taught me the skills I needed to get control of my life.

Ironically, my successful treatment by these two providers was not supported by our traditional health care system. The physical therapist runs a small cash-based practice, and while this model cost me a lot of money (worth every penny!), he was also not constrained by insurance company rules and regulations dictating the number and length of visits that would be covered. Thus, we had the flexibility to arrange a treatment schedule and plan that worked for both of us and met my individual needs. By comparison, the chiropractor that helped me did accept insurance, but my insurance company refused to pay for about half of the visits, claiming that there was no evidence of medical benefit or reduction of pain as a result of his treatments.

When I received that denial letter from my insurance company, I actually had to laugh. In the past, my insurance company had paid for several MRIs and mutliple injections, none of which helped relieve my pain, but they refused to pay for some manual therapy and movement patterning, treatments that did actually improve my condition. I glanced at the letter again and shook my head. With all the hassle and frustration built into the system, is it really a surprise that people turn to strangers for medical advice? I don’t think so.

Then I laced up my running shoes and went out for a run.

Thanks for reading,

Dr. Cheryl Keller Capone