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,




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,

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




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