Nearly two years ago, I packed up my studio apartment as I finished a year of teaching in metro Detroit. I prepared to make the move back to the west side of Michigan, where my then-fiancé and I would be renting a house in a small town. We had both gotten jobs teaching in the same district, and would actually be co-teaching three classes together a few days a week. We were newly engaged, moving back to our college town, and living the dream.
As the start of the school year neared, I ambitiously planned and organized for the first week of classes. Once things got rolling, I quickly fell into a groove with my new schedule. I was a little nervous, but mostly excited for this new adventure. I signed up to run my fifth marathon in the fall of 2016, and eagerly set out to complete my training runs each evening. Little did I know that training this year would be quite different.
My Journey with Running and Autoimmune Disease
About 3 weeks into the school year, I started to lose my voice. It turns out “singing” loud enough to be heard over 30 children for 6 hours a day could really take a toll on your vocal chords. After a few days with no voice, I noticed the typical cold symptoms beginning to appear. I dreaded its onset, but knew that the first few weeks of the school year were prime time for germs.
After battling this cold for about a week, my arms began to feel sore.
A few days after the soreness appeared, I found myself unable to fully extend or bend my left arm. My elbow had swelled up and looked like it was retaining a small pond’s worth of fluid. Confused by what was happening, I assumed I had picked up some virus that was making its way through my system. It was a very strange feeling not to be able to put my arm down at my side or to bend it as I ran.
Another week passed and my elbow started to feel a little better, but my cold had turned into a raging cough with a runny nose that would never go away. As my left arm regained its range of motion, my right elbow began to feel painful.
Sure enough, a few days later I was unable to extend my right arm.
I have never been a fan of doctor visits. They leave me sweating, anxious, nervous, and feeling way sicker than I usually am. Because of this, I put off visiting the doctor and assumed that these mysterious elbow problems were still somehow related to whatever cold I was battling.
The cold lasted about 3 weeks before it eased up, leaving me with just a cough. But, low and behold, about 2 weeks after I finally started to feel better, it returned. Each time, it seemed to return more intensely than before.
Each time I worried that running might be making the joint pain worse.
After missing quite a few marathon training runs due to illness (and worrying that the runs I did complete might be making my elbow condition worse) I decided to call it quits on the fall marathon. I threw away my training plan and decided to focus on shorter distances while getting healthy.
The fall of 2016 is full of memories where I felt less than stellar, trying to pull myself together long enough to venture out and do normal activities. Football games, Thanksgiving, and winter concerts were filled with illness and many days where I thought I wouldn’t be able to make it into work. I got used to walking around with my arm bent at my side, and wasn’t even surprised when I saw picture after picture of my bent armed self.
I soldiered on, trying to find ways to cover up the fact that I was unable to bend my arms enough to clip a microphone to the top of my shirt for students with hearing aids. I avoided upper body workouts like they were the plague, and my husband eventually got used to helping me push myself off the couch, or reaching to get things for me from the top shelf of our closet.
By June of 2017, I finally decided it was time to visit a doctor.
There was now more time in between each bout of illness, but it still recurred quite frequently. My elbow pain continued to bounce back and forth between arms, but was less severe than the first few times it occurred.
Even so, I ventured in to see my doctor in June. She ordered some blood tests, which I begrudgingly completed. A few weeks later I received a call that I was being referred to a rheumatologist.
My lab results showed signs of autoimmune disease.
I had to wait until September to get in to see the rheumatologist, and when I did he ordered even more blood work. He confirmed the fact that I had an autoimmune disorder, and after four visits narrowed it down to what he thought to be Rheumatoid Arthritis. He prescribed me some pretty intense medication to take three times a day – for the rest of my life.
After hearing his diagnosis, I decided to get a second opinion. While it made sense to me that my lab work showed the appropriate antibodies to diagnosis a connective tissue disorder, I wanted to feel confident in this diagnosis before committing myself to a lifetime of medication.
I scheduled an appointment in March 2018 to see a different Rheumatologist. During the few months leading up to this appointment, I completed all the research I could find. I read books, found blog posts, online support communities, and research papers dedicated to the topic of autoimmune diseases – specifically joint and connective tissue disorders.
The second rheumatologist diagnosed me with Mixed Connective Tissue Disease, which is basically a combination of Rheumatoid Arthritis, Lupus, and Scleroderma. It shows characteristics of all three diseases, but does not include all the symptoms of each. He prescribed me a less intense medication to take once a day, to prevent any further damage.
Despite all of my doctor visits, lab work and consultations, I still felt like my main questions were left unanswered. I was confused how I could be getting so sick so often after living an active lifestyle and remaining healthy throughout my life. Isn’t running supposed to help us prevent illness? I was frustrated that so many questions were being unaswered. It seemed impossible to continue running with a chronic illness.
Is it safe to exercise with autoimmune disease?
In all my research, I stumbled upon a podcast that was created by a Function Health Practitioner. He uses his podcast to share stories and treatment tips based on patients he’s seen, and treatments he has had success with. Functional Medicine operates under the belief that everything within the body is connected, and that your lifestyle, along with what you eat, can dramatically affect your health.
Their research shows how the food you consume directly relates to health issues you may have. They believe that by changing your diet and/or lifestyle, you may be able to cure or lessen symptoms of any disease – from obesity, to chronic illness, and even diseases such as cancer.
The thought of being able to change something natural that I was already doing – eating – and decreasing my symptoms was so appealing to me. I knew that I didn’t wanted to be chained to medication for the rest of my life, always masking the symptoms but never really treating the root of the problem. Even better yet, making some adaptions to my lifestyle may end up helping my running.
Is there a way I can use running to help manage an autoimmune disorder?
As a runner, choosing to live a healthy lifestyle really comes naturally. I run to decrease stress, maintain weight, and continuously improve my fitness. Running helps me feel better when I am congested, tired or unmotivated. It inspires me to continue to strive to become the best version of myself.
The past 18 months have been a constant challenge to learn to view running in a new way. When I am sick, there are times when running in fact is a bad choice. Putting my body through added stress when its immune system is at war with itself only leads to worsening conditions. The times when I am most frustrated and stressed are often times when I am unable to run.
Chronic illness as a runner is incredibly frustrating. We pride ourselves in our health, values, priorities, and setting positive examples for others. So when all of this is suddenly taken away despite years of hard work, it feels like a slap in the face. After 18 months of fighting the mental struggle and confusion that comes with autoimmune disease, I have learned to view health in an entirely different way.
After visiting a functional health practitioner a few times this past month, I am ready to make a change. I am slowly learning more and more about our bodies and our health, and know that this knowledge will only help me to improve. My goal is to get to the root of this chronic illness and put a stop to it. The next few months are going to be a challenge in terms of changing my diet, especially with my obsessive sugar indulgences.
Throughout this journey, running has been my one constant.
Running has changed my life for the better in so many ways, and I am eager to learn and discover different ways of viewing our sport. I believe that running is what has kept these symptoms from appearing sooner, and continues to keep my muscles and cardiovascular systems strong which prevented these flares from becoming anything more serious.
Running will take a new shape as I attempt to become the healthiest version of myself. The food I will be eating now will serve the sole purpose of nourishing my body and mind. I will eat to run, take rest days when I need them, and hope to become an even stronger runner.
The running journey begins this upcoming Monday, as marathon training begins for my 6th marathon this fall. If you are struggling to balance chronic illness or autoimmune disease and running, know that you are not alone. Running takes different shapes throughout our lives and looks different for each and every person. Know that there is no right or wrong way to run, amount to run, or reason to run. Running is there for each of us in its own unique way.
Looking for more inspiration? Check out Mikula’s articles – a running blogger working who’s accomplish some major goals all the while battling an autoimmune disease!
Wednesday 5th of August 2020
Hi, I've just found your article - thank you - it really helped me. I used to love running, out on the fells (I live in Cumbria, UK) but got diagnosed with systemic sclerosis last year and I also have interstitial lung disease (only mild). I am so frustrated with my running now - I bike lots and walk mountains and my heart rate is reasonably high during these exercises but manageable. However even the slowest shuffle sends my HR into peak. I feel like a shadow of the person I was but I know my fitness hasn't decreased as I do loads of other stuff no problem. Every doctor I speak to says it's loss of conditioning but I genuinely feel like my muscles just don't get the oxygen they need. I guess I'm trying to find out if you experienced a real slowing down of your pace? Does your HR seem higher now when running than it did previously? Sorry for the long message, just feeling desperate and don't want to give up on running but also don't want to stress my heart rate out too much. Hope you can share your thoughts. Thank you
Runnin' for Sweets
Saturday 8th of August 2020
Hi Elaine - thanks for reading and I’m so sorry to hear about your diagnosis. I know how ridiculously frustrating these types of diseases can feel, and although I don’t have much personal experience with your particular disease, I can imagine what all you must be going through. It sounds like you are doing well staying active and I personally believe that maintaining our fitness (to the best of our ability) is the best way to keep symptoms after bay and continue to feel like ourselves. For the first few years after I was diagnosed I definitely experienced an increased heart rate whenever I had a flare. Things would get worse and I was tired all the time and running felt a million times harder. My heart rate was super high on all of my easy runs during these times. The best thing I did during these times was to take it easy and not give myself a hard time about it. I tried supplementing with lower impact workouts such as yoga to stay active but not get my heart rate up too high. This past year I switched to a plant-based, vegan diet and it has done WONDERS for my energy level and really improved my cardiovascular health on the run. I’d be happy to share more if you’d like to hear. I hope you are able to find a healthy balance and stay as active as you wish. These health issues sure can be frustrating but there is definitely a light at the end of the tunnel - it’s just a matter of finding what your body responds to best. Thank you for sharing your story!!
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