Fibromyalgia: My Journey of Health, Perspective, and Trust

This is less a post about failing, although I certainly had those moments. It's just something I'm sharing. I hope it helps someone in some way.

It started back in May of 2011. Around the time of this picture on the lake. I randomly started having trouble breathing and realized I was coughing a lot. Of course, working at WebMD, I began a long process of self-diagnosing. (Something I try to never do now.) My symptoms seemed to point to asthma, although I imagined a dozen worse scenarios. The doctor thought it could be severe allergies so he gave me some medications to try. It didn't help. 

I went back and he gave me an asthma test. It did not indicate asthma but did show some improvement in breathing with a breathing treatment, so he put me on inhaled steroids and a rescue inhaler. That did seem to help a bit... but when I say a bit, I really mean that. It was minimal improvement. I spent the whole summer barely able to breathe and unable to be outside for more than a couple of minutes. I couldn't work out. I could barely walk around for any length of time. Every breath was difficult. I even had a lung MRI to see if I can a blood clot -- no. Nothing.

During church, I couldn't sing because I couldn't breathe. I would sit there in church while everyone sang and just cry and pray that God would let me just be able to sing. That's all I wanted. I left discouraged. I cried all the time and freaked myself out with internet self-diagnosing. I was such a mess. I spent most of the time lying or sitting on the couch watching tv. The stress was so bad that I  couldn't sleep well. Almost every thought was "What is wrong with me?"

Side note: 

Jeremy was so patient during this time. He would resist what I'm sure (in retrospect) was a strong urge to tell me to stop whining and thinking about myself. Instead, he would pray with me and hold me and remind me of how God promised to care for us.

Later in the summer, I developed additional problems. For some unknown reason, I was getting sick to my stomach just about every day. On top of the breathing problems and sickness, the worrying itself was wreaking havoc on what was left of my wellness. Worrying does horrible things to your body.

During the day, I could barely stay awake. Later after work, I would crash right away. Then I'd get up and try to cook something for dinner, not because I was expected to, but because I was trying to prove a point. I COULD DO IT ALL. But then I'd crash again.

We went up to Pennsylvania around Labor Day to visit Jeremy's grandparents that year and I spent that week sick. I had very random, weird symptoms like pain in odd places that would go away and return in another spot. Unexplained aching. I thought, "I'm only 25... how is this even possible? I've never been sick in my life!"

(I'd also had zero compassion for anyone who was less than healthy. I assumed they brought that sickness on themselves with diet/exercise/other decisions like that. I'm not proud of that, but it's how I felt up to this point.)

Then, I developed an infection of some kind. That lasted a week and made me even more miserable. Finally, I couldn't stand the wondering/worrying anymore so at 25 years old, I had a colonoscopy, abdominal MRI, and had a test for celiac disease. All came back perfectly normal.

You would think that was good news, but I was beyond terrified. What could be so hidden that no doctor can find what is wrong? Why am I hurting everywhere? Why is this happening to me? Am I going to live like this? Am I about to die from something? I was sure that was it. And I cried again out of anger and fear. I didn't trust God. I trusted myself, and I couldn't keep up, and I trusted the doctors who'd let me down and the medication that didn't work. Everything I had trusted had failed.

During one visit, my doctor suggested that, because my mother has fibromyalgia, maybe that was similar to what was wrong, although he didn't diagnose me. Diagnosing fibromyalgia is really tricky. But he suggested I try a medication that might help. I was above that. Medicating every day? No, not me.

Finally, and I don't know when or how this happened, I broke for the first time. I gave in. I told God: "Whatever. Whatever you want for me, I wasn't willing before, but just do it. I don't want to live with pain or die young, but whatever. I give up."

It wasn't the most humble of prayers, but I was at the end of my rope.

I started to take action instead of just lying around crying. First, I cut some things out of my diet to see what happened. Dairy turned out to be a culprit. I eliminated it and felt some relief. The breathing problems starting going away on their own. I have no explanation, other than perhaps anxiety was triggering some of it. And I caved in and took the medication. It was such a huge step for me. I was so humiliated to be "one of those people," but God made it clear to me that this should not be a matter of pride. Jeremy and I went to New England with friends that fall, and though I was still in pain and not well yet, we had a wonderful time. I look at the picture here and see myself and what I was going through, and the memories are both wonderful and painful.

Today, I have no issues with breathing or stomach pain. I'm certainly relieved about that.

But the bigger picture here isn't that. This may sound strange, but I really believe that the trial I faced was as spiritual as it was physical, and I believe God used it for my ultimate good. I was almost defeated emotionally, physically, mentally. I felt like I was at the bottom of a dark pit, and God lifted me out. You can explain the physical healing with the actions I took plus the medication, but spiritually and emotionally, the healing was miraculous to me. I've never been so happy to sing in church in my life. I know the value of breath. I know how it feels to hurt every day. To be desperate. To be loved unconditionally by a loyal, encouraging spouse. For that, I am well aware of how blessed I am. Jeremy and I went through a valley together and came out different people. And I learned something really important: I can't trust doctors alone, or medicine alone, or the internet alone, as stupid as that sounds. It's really easy to do.

In the spring of 2012, shortly after all this happened, my church showed a video of a mission trip to Africa including the life story of a man who ran an orphanage there and took in children with HIV and AIDS. Now, I've seen mission videos a bazillion times, and while I've been moved, I've never been broken. This video broke me. I went home and sobbed for the people that didn't know hope and had nothing. I began to truly think of others and not just myself. And that heart change continued.


What followed was a year of focusing on living for others, a class at church about getting outside of yourself and listening to God’s leading in your life, and, for the first time that I can remember, a real desire to help others. This whole process of sickness and healing was changing me and making me a more compassionate person.

Now, I still have problems. When I first wrote this blog, I had a working diagnosis of "probable fibromyalgia." Now, it's more or less confirmed, and I continue to be on medication for it and have made other lifestyle changes to help. I try to eat foods that fight inflammation, and we ride bikes together fairly often. I limit caffeine (booooo!) and drink a LOT of water.

Summer is brutal for me. I have flares that make me feel fuzzy (fibro fog...Google it!). I get really bad muscle stiffness and pain, especially in my neck and upper back, and I am exhausted no matter how much I sleep. But it's not all the time, and it does improve significantly when the weather cools and humidity fades.

In the time since this happened, I've also had two beautiful children and have continued to learn more about faith and trust and selflessness. And I'm OK. I'm content. I was 25 when this all started and I'm 34 now (2019), and I'm still learning, but life is good! I wrote a little more about this all on a different blog post here. Check it out, and leave me a message if you also struggle or if you have any other comments for me!