It Has a Name (Health Update #2)

My goodness how you guys love! I am overwhelmed and amazed by the outpouring of support. Y’all are good people.

So the last time we left things I had curious symptoms that left me in enormous amounts of pain, fatigue, and just a general feeling on being unwell. I was managing things with my diet and lifestyle change a bit but then I saw the cardiologist. He put the blood pressure cuff on my arm and my pain regressed to the point where I could barely drive home. That week I knew I couldn’t continue to function that way.

I reached out to my primary care doctor and asked for a referral to a rheumatologist with all symptoms pointing to Rheumatoid Arthritis.

A week went by with no phone call. My pain and fatigue continued to get worse and to be totally transparent, I was starting to feel hopeless and despondent. Eventually I just decided to start calling rheumatologists in the Springs. My answer? They could see me in APRIL.

I just about lost it. The thought of living like this with no direction or answers until April was too much. So after having a good long cry I buckled down and did what my stubbornness has always compelled me to do. Look for another way out to get what I want.

I started calling all of the numbers I could find for rheumatologists in the state of Colorado. On my second attempt I found one in south Denver, about an hour away. They had an opening in 6 days. 6 DAYS! It was a miracle. I was truly humbled and amazed. When I relayed this information to my primary care doctor he was as stunned and amazed as I was.

Sunday afternoon my mom and I drove to Denver and stayed the night. While my dad and brothers were “Mueller Men Weekend”ing it up in Chicago, Mom and I were waiting to see a specialist. Typical for my life.

I went into his office Monday morning expecting a diagnosis of Rheumatoid Arthritis. I had some markers in my blood work and what I thought were classic symptoms. He started asking me a bunch of questions about the location of my pain, how it came on, and noticeably about my sleep patterns. I thought it was odd but answered anyway.

He had me get on the exam table and started putting pressure on my joints and back and hips. He would press down and I would feel sharp pain shoot through whatever space was around the trigger point. Again, he kept asking me about my sleep and how often I felt pain.

I climbed back down and sat in the chair. He walked through three different types of pain we experience and then informed me he suspected I had a fourth, a chronic nerve pain that is often tricky to diagnose and tricky to manage.

Fibromyalgia.

And just like that, I had a name.

In some ways, my body ceased to be the enemy and I could make a villain out of this name.

But what little I knew of Fibromyalgia did not seem like my life was about to get any easier. The doctor gently informed me that this will be a life-long process of managing it. For some reason I’m in a triggered cycle and we need to get me out of it. But once I move past this, the best way to prevent flair ups is by lots of sleep, very low impact exercise, and reducing stress. Apparently stress can trigger the on-set of this disease. Including emotional trauma / stress. (Do three breakups in 12 months count?)

So, I’m not sure what this all means. I’m still planning to see a naturopath who is a Believer and uses a combination of traditional medicine and holistic practices in how she works. I’m hoping she’ll have some ideas of how to manage and prevent more issues.

I’m trying to figure out what combinations of medicines will work to get me out of the currently “cycle” and what I need to do to stay out of it. I know that life will still be different but at least I have some clue as to what could trigger me.

I believe God is sovereign and good and loving and gentle. I believe this isn’t a surprise to Him even though its a surprise to me. I believe it will be part of my testimony of who He is and how He loves. I believe there will be much Life to be lived because of this. I believe I am being refined and renewed even though my body feels like it is withering away. I believe there is Hope.

I’ll ask this again even though I know I don’t need to. Your prayers are the most loving and sacrificial thing you can do for me right now. Thank you for being gentle with my heart and my emotions and my frail body. Thank you for inviting me to things and making me feel cherished and wanted and your graciousness when I can’t show up.

If you know anyone who has walked this road and has ideas or thoughts or words, please send them my way. These are unchartered waters for me and I’ll take all the help I can get!

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4 thoughts on “It Has a Name (Health Update #2)

  1. Hi, I don’t even know how I found your blog, and I don’t know anyone suffering with fibromyalgia, BUT I do know from experience, that when you have a name, you have a lot more peace because you know the ‘destination’ as such. I shall be praying that our Lord sends you the right people and the right information and relief/release from the pain so that you can continue to live for Him.

  2. I know you’re already gf, but look into the Auto-immune paleo lifestyle. I know at the root of it, fibromyalgia fits into the autoimmune disease category (as does Daniels ulcerative colitis) and this is the diet path we are about to start walking down. I’ve been researching it for so long and we’re finally going to give it a go – I’ve seen so many success stories. good luck sweet friend. praying this flare finds a quick stopping point. we’re in this with you!

    • Thanks friend!! I’ve heard great things about the AIP diet. I would say I’ve adopted about 75% of it actually. I see the a naturopath next week and I’m going to find out what more I can be doing and if I need to commit 100%.

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