How I Got My Fibromyalgia Diagnosis [Fibromyalgia Awareness Month: Day 2]

All but two of my missionary companions.

My diagnosis journey started in 2013 while I was serving as a missionary for the Church of Jesus Christ of Latter-day Saints. The day I came home, January 1, 2014, is one that I will never forget. So many different emotions were running through my head. I was terrified, humiliated, excited, nervous, sick, happy, relieved, and a million other things. Coming home six months early from my mission was super hard. I had been sick on and off for about half of my mission (I served for 11.5 months out of 18 months). I was serving in the Baltimore, MD area and LOVED sharing the gospel of Jesus Christ. I had incredible experiences and met some of the most incredible, Christlike people. As much as I wanted to be there and to share the gospel of Jesus Christ, God definitely had another plan for me.

Reunited with my family at the airport. Pictured: Joe, Mom, Meghan, Garrison, Grandpa & Grandma, Cami, Jamie, Dad, and Will.

The decision was made over the Christmas holidays that I had to come home early because I wasn’t getting better. The doctors in Maryland had no idea what was going on with my body. In fact, my mission president didn’t even do an official exit interview with me because he was 100% positive that I would be back. Well, that didn’t happen because my primary care doctor said that there was a good chance that I was going to get sick again and that it could really impact me for the rest of my life. Little did I know that those words were so true.

I was so frustrated that I came home early. I hated that I couldn’t give anyone a direct answer on what was going on with me medically because I just didn’t know. Plus all the doctors didn’t know. To capture what was going through my head back in 2014, I posted this on my blog:

As most of you know, I came home six months early from medical reasons. Unfortunately, those reasons have yet to be solved. I keep getting pneumonia or bronchitis and for some reason, I can’t get over it. Many doctors have called me a “medical mystery” and have told me that there isn’t anything that they can do. But I’d beg to differ. There is always something that can be done.

I went to the doctor’s SEVEN times last year because I had bronchitis/pneumonia . This year, I’ve gone three. Three years ago, I went twice. Year before that three times. So on and so forth. You get the picture. It hasn’t been easy and believe me when I say that I’ve gone insane just sitting around watching Netflix. But the one thing that has been consistent is the Lord’s hand in this whole thing.

–My blog post titled, “Lord, Give Me Mountains to Climb”. [2014]

So, being the ridiculously assertive and control-freak that I am, I took matters into my own hands. I gave up on going to the doctors once they told me I just had a bunch of food allergies (molds and a mild chicken, apples, and walnuts allergy) which lead me to going gluten and dairy free. I researched, and researched, and researched during 2014 to 2016. I learned how to eat healthier. I joined Beachbody, and worked as a coach that ran fitness and nutrition groups. I learned about organic foods. I learned how to eat clean. I learned how to actually cook something that wasn’t in a box. I joined my university’s swim team and eventually made captain for marketing. I worked full-time as a supervisor at a girl’s residential treatment center. I dated a lot and broke a few hearts. I was having the time of my life. I loved 2014-2016. I had my challenges like any college student, but I really enjoyed that time of my life.

Then one day during my fall semester of 2016 all of the symptoms came back. The same symptoms that I had while on my mission. My knees started to blow up out of nowhere. My hands were swollen. I was loosing weight rapidly. I was in pain all the time. My legs, hands, arms, shoulders, back, and joints always hurt. It was the weirdest thing I had ever experienced. I stopped exercising and tried to take it easy for a few months. But nothing was helping me. So, I was back at square one. It was so frustrating.

My very swollen hand.

I made an appointment with my primary care doctor. He ran some blood-work and guess what? They finally found something. I was terrified. My doctor referred me to a rheumatologist and then the testing began. I was poked so many times that my really good vein is now hard to find. The results came back inconclusive. Meaning, my c-reactive protein, ANA, and sedimentation rate indicated a inflammation problem but there was nothing definitive. The doctor thought that I had Lupus, a autoimmune disease that attacks your healthy tissues. Since my ANA test was positive, he ran it again to verify the results but they came back inconclusive. This was the moment that having Dr. House around would have been very helpful: “It’s NOT Lupus!”

2017 was the year that I never thought was going to end. Since my ANA was a false positive, and I was still having chronic pain issues with the inflammatory response, my doctor asked me to come back into the clinic for further testing. When I came back, I was expecting more X-rays, needles, and whatever. I was right about some of the testing. He ran an X-ray on my hands to see if I had any damage in my joints which I didn’t. He ran my blood work again and the same CRP and sedimentation rate came back positive. Nothing else showed up. Then the worst part of all the testing happened. He started pushing on my joints. I held back tears as he pushed on my shoulders, hips, hands, feet, and knees. Finally, he took a step back and smiled. He said, “Well, the good news I know what’s wrong with you. The bad news is it’s Fibromyalgia.”

To be continued.

XO Sam

1 thought on “How I Got My Fibromyalgia Diagnosis [Fibromyalgia Awareness Month: Day 2]

  1. Pingback: Fibromyalgia Awareness Month: Days 3 to 7 | Samantha Quinio

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