The Voice of the Patient is brand new on Monday, August 29th!
Christy Natale had dealt with chronic back pain for more than 7 years. Read her story below. We’ll split this interview into a couple of episodes – Dave
I started having back pain when I was 22. I had been a pretty normal and healthy young adult who had finished college and was getting ready to apply to physical therapy school.
I noticed that they pain would come on when I was active. At the time, I was working two jobs and both required a lot of heavy lifting (50+ pounds), and I was lifting often. The pain would come on early in the day and progressively get more intense. In the evening, I’d go home and go straight to my bed. In the mornings, I’d feel better, but the tasks of my day would just ramp it up again.
I saw a number of healthcare professionals who determined that the pain was from my sacroiliac joint. I underwent a number of treatments and interventions and spent a lot of time in physical therapy working on my strength. I continued getting care through graduate school (physical therapy school) and slowly the procedures got a little more invasive. Some helped a little bit, but nothing really made my pain go away. I was often discharged for lack of progress and would be referred to another therapist or professional who was felt to be able to help me. This went on for six years. I was concerned about how I was going to have a career as a physical therapist. My love was pediatrics, but it was so hard on my body.
In 2011, I had my sacroiliac joints (bilaterally) surgically stabilized. This was 6 years after the onset of my pain and two years into my career in pediatrics. I did my rehab, recovered well, and my pain decreased over time.
All the years of pain had a huge emotional impact on me. It was very, very hard to be young with persistent pain. I didn’t have much of a social life at all and felt very trapped by the pain and alone. I wasn’t sure what my future looked like. I was working a job I loved, but I was miserable. It was a relief that my surgery was a turning point for me to start having less pain and get some of myself back. Around this time, I saw a geneticist to rule out Ehlers Danlos Syndrome, because I had multiple joints that were intermittently painful and was a very flexible child and adult. He felt that I fit the criteria, but that I was deconditioned and would do well with exercise. I wasn’t very satisfied with his nonchalant demeanor or being labeled as deconditioned. In hindsight though, he was right.
After a few years, I was ready to start an exercise program. I had gained quite a bit of weight that I was unhappy about. I’d never been really athletic or committed to an exercise program and, as a naturally thin person, I’d never had to be.
I wasn’t motivated to walk or ride a stationary bike (I tried and failed to be committed). I found a gym that had a pretty good system that was inherently motivating with points and different things you could earn that indicated that you were consistent or doing well. I began to lose weight, get stronger, and feel pretty good about myself. My joints were starting to feel better and I was on a good path with weight loss.
About six months after starting this workout program, I had sudden and severe low back and leg pain following a workout that I did. I returned to PT. My back pain resolved fairly quickly, but my hip remained a problem.
As a patient and healthcare professional, I wanted to know exactly what was going on with my hip, because I reasoned that knowing what was causing the pain could help us find a solution to it. I had some imaging, saw an orthopedist, and found that I had a labral tear and hip impingement. A month later, I saw an orthopedic surgeon who was very kind and knowledgeable, but was honest with me that my SI fusion complicated the outcomes if she were to do surgery. She referred me for more physical therapy and a diagnostic injection.
I was having a really hard time with the hip pain and with the thought of being in a situation again where therapy and appointments were a regular part of my life again. I had done so well with my SI surgery, but it seemed that I had traded one pain for another. I felt like I had a new world to learn about and was overwhelmed.
This was the start of 13 months of physical therapy for my hip. It was incredibly reactive and progress was slow. A cortisone injection initially gave me a lot of relief, but the pain came back and persisted. I worked with a great physical therapist whose approach was different than any other the others who had worked on my SI joint. He put me a little more in control of my care with an emphasis on a home exercise program, did very little manual therapy, and only wanted to see me once every two weeks. I actually didn’t like this at all because I was used to therapists being more involved. I was used to a therapist “fixing” my body to improve my mechanics and he didn’t do any of that. His focus was really on getting me stronger, improving my coordination and motor control, and I had a very thorough home exercise program that I stuck to. I really struggled with pain, though. I was using pain medications and muscle relaxers as frequently as I could and still do my job. I was miserable and the pain was distracting in the first few months. It slowly improved, but I recall being bothered that I was still having pain and felt that surgery was inevitable.
My good friend Antony Lo is a physiotherapist in Australia who was in my ear a lot as I worked through things with my hip. He encouraged me to do what I could do without pain (which wasn’t much). There was a day when I was especially frustrated with how my hip was feeling. He asked me to tell him what I thought was going on with my hip. By this time, my PT had discussed with me that my pain was more chronic in nature and we needed to treat it as such. This was really hard to hear, because chronic pain to me felt like a label, and I didn’t want that label. I think there’s a lot of negativity around chronic pain, and it really felt like I was being put into a class of people who can’t be helped. When I told Antony about all the problems I had, which included things like “labral tear decreasing stability of the hip, CAM-type impingement putting stress on the labrum, functional undercoverage of my hip due to my leg length discrepancy and pelvic obliquity …” His replied with, “does that matter?” I remember feeling a little deflated. I knew what was going on with my hip because of imaging and appointments with professionals who understood hips. The reasons I had for my pain validated my pain and I didn’t like being questioned.
Antony and I are friends, though, and really just made me think because he wouldn’t say something like that if he didn’t have a point. I mulled over his question and kept coming back to it. I’d find out later that his point ultimately was something that I was about to learn: that in a chronic state, pain is not a reliable indication of damage, that what is found on imaging may or may not be significant, and that pain can improve even when there are a lot of reasons for it to be there. No other therapist was willing to be so blunt with me. My own therapist was amazing and worked through things systematically. I did see improvements, but my ultimate hope to be pain-free seemed like it wasn’t possible.
I took Greg Lehman’s class on reconciling biomechanics with pain science about 7 months into dealing with my hip. I stood in the back because I couldn’t sit for very long. These were my take-away points:
* Biomechanics matter far less that we think they do.
* The human body is strong, resilient, and adaptable.
* A lot of manual therapy techniques don’t work the way we think they do (they work on the neural system)
* Pain can be from tissue sensitivity to input, especially when the pain has been going on for a while.
* Pain is a danger signal that is interpreted by the brain based on context and is unreliable as an indicator of tissue damage.
* We need to stop making our patients fearful to move or to instill in them that there is only one right way to move because research shows us that that isn’t true.
I found his course to be interesting and enlightening. I learned a lot about how pain works and the role of the brain in pain. Interestingly, it was shortly after I took his class that I recall a large improvement in my pain. In hindsight, I think being educated about pain was a key point in helping me to hurt less and be less fearful in general. I was always afraid that if my hip hurt after I did something, it was because the tear was bad, I was making it worse, and it wasn’t going to get better. Hearing that my pain was more likely due to my hip being sensitive was empowering! Hearing that my body could adapt and was strong was even more empowering! I started framing my pain around the thought of tissue sensitivity and also took it to heart that my body could adapt to the things happening at my hip. It wasn’t long before I was doing more and more functional weight bearing exercises in PT and we were talking about exercise in the community. My hip was still irritable and the pain came on if I did too much, but I started noticing that it didn’t last as long. Previously, a 30 second plank led to 3 days of symptoms. I was still getting symptoms, but they were getting more manageable. Hip flexion seemed to be problematic, but I was happy that I wasn’t coming home from work and going straight to the couch any more. I’d tried cycling, but didn’t love it (at all) and felt like the repetitive hip flexion of biking aggravated my hip. I was happy to be doing something, felt like the pain was manageable, and thought maybe that was the best things were going to get. Today, I think that in order to feel like progress is being made, a patient needs to feel successful in the things that matter to them. I didn’t care about biking and only did it because I felt like I was limited to low-impact activities. Little did I know that was not the case.
Through a series of events, I decided that I wanted to try CrossFit. My PT was ok with this, as my activity tolerance was improving. He was ready to discharge me from PT, but I was very nervous about this. However, by structuring my therapy the way he had, my PT had provided me with knowledge and tools I needed to continue to manage my pain and make progress outside of the clinic. So, I joined the intro class at one of my local CrossFit affiliates, but I was really skeptical that I’d have success. All of my experiences with pain before were clouded by failure: I’d fail PT and be discharged, and then fail to improve on my own and then return to PT. It was a circle. I expected that the intro class might be too much or that a month down the road my hip would go back to its high pain state and I’d have to stop. I had a PT tell me during my SI rehab that no one with my history should ever do CrossFit, and that had stuck with me over the years. Instead, I was surprised to learn that I could actually do quite a bit with very little increase in pain. Not
only was my body responding ok with the right modifications in place, but I was so proud to be starting CrossFit. I had no idea that feeling strong and capable was so important to me, but it was when I walked into the gym as an athlete and stopped being a patient that I felt the most significant gains were made. In the first few months, the coaches modified everything for me. I was able to graduate from PT to community-based exercise. Our goal was to add just enough load that I could do the movements and not have pain the next day. I started with very little weight, very limited range of motion, or a substituted movement. We never pushed into pain and slowly increased what I was doing. There were ups and downs with pain. When I’d have symptoms, I’d take it as an indication that that was too much for where I was and that I needed to strengthen more and modify for a while longer before trying again. Using this method, I was able to do more and more.
My coach, Rich Fly, was incredible at understanding how to modify things for me and still challenge me to make progress toward the things I couldn’t do yet. I think the key thing that he did for me was to put me in a place each day where I had to stretch myself to achieve something new, but he always made it attainable so I’d be successful. He’d take me where I was on a given day and push me to be my best. It’s been a wonderful gift to have someone invest in me that way. We ran into a bit of a roadblock with running and jump roping, but everything else was going really well. It seemed like running and jump roping were always going to be things that I wouldn’t be able to do without hip pain. Every time we tried, I’d have a flare up. I resolved that perhaps those things just weren’t things I was going to do and I eventually accepted that because I had come so far. Outside of those things, my pain continued to decrease. And boy did I love CrossFit. My coach continued to work with me on running and jumping. We’d scale, change the movements up, and do what we could to try to create a similar load to my body that didn’t cause pain. It took a while, but eventually, small broad jumps became box jumps, and box jumps led to taller box jumps, and the box jumps led to jumping jacks, which led to jumping rope. Running followed a similar path, and it’s something I continue to work on.
What’s been amazing to me as I reflect back, now nearly a year into doing CrossFit, is that I never expected my body to be able to tolerate load and exercise intensity the way I’ve been able to push it in CrossFit. I didn’t expect my pain to improve, but to remain at that tolerable, manageable place or perhaps get worse again. Yet, I’m now lifting heavy weights, running, jump roping, and doing everything we’re supposed to do on a given day without hip pain. A lot of the time, I’m performing at a similar level to the other women in the gym. I have very little hip pain and no SI pain today. I thought I’d always be limited and I expected pain to always be a part of my life. Due to the nature of joint hypermobility, I have had other joint pains come up, but the whole experience with my hip has taught me how to face pain when it arises. I no longer fear pain when it comes up or go immediately to my rehab doctor; I just acknowledge that I probably did too much and need to let the joint rest, modify the movement, and then try again a little later. So far, this has been effective for me and I think the autonomy I have is a huge reflection of the care I received in PT as well as participating in something I love.
So many professionals had made me feel fragile; CrossFit shows me that I’m strong. Every new skill, heavier lift, or faster time is a huge accomplishment. What this has done for me emotionally has been huge. The CrossFit community is amazing as well. As a part of the gym, I’m a member of a community, and this stretches outside of the gym walls. Chronic pain stole my social life and I feel like CrossFit has redeemed that in a way. I love having community around me again.
In my daily work as a physical therapist, I’ve found that I want the kids I work with to have that same sense of accomplishment in the things they do. In talking with my coach about this, we noticed that there aren’t a lot of fitness opportunities for children with physical disabilities. So, this summer, we started a small pilot program at the gym to introduce them to exercise and strength training. We have a small group of kids who are wheelchair users who are coming twice a week, for 30 minute sessions, using CrossFit equipment. As their therapist, I’m noticing improvements in their strength and skills, but even more so, I see a reflection of myself in them: this isn’t therapy; in the walls of the gym, they are treated like athletes and I know this is huge for them. It’s made me really happy to be able to merge these two areas of my life, especially knowing firsthand how empowering it is to be made to feel strong and able. I’m immeasurably grateful to my coach for making the program happen and for everything he did to get me to where I am today. And thank you for allowing me to share my story! I think patients and therapists need to know that pain can improve even in light of structural problems. I “should not” be able to do the things I’m doing today with my hip pathology, SI fusion, and joint laxity. What a gift I’ve been given by having a PT who didn’t hold me back or make me dependent on him and a coach who was willing to work with my potential. Being able to participate in CrossFit has changed my life!