As promised, I’m back to share with you my journey to diagnosis. I’ve discussed some aspects of this journey before, but I really wanted to share additional details of what was involved with getting diagnosed. It’s really easy for me to focus on the immediate months leading up to my diagnosis, but, in all honesty, my diagnosis was a nearly 5-year journey of doctors’ visits and frustrating experiences before I confirmed what was happening with my body.
I had two primary care doctors throughout the time that I’ve suffered from fibro symptoms. My first doctor didn’t see anything concerning on my bloodwork, but she believed me when I said that I felt unwell. She referred me to a rheumatologist for clarity (an appropriate response), because some autoimmune conditions cannot be determined from basic blood testing. I visited the rheumatologist, who seemed to understand that I was experiencing extraordinary stress along with physical discomfort. However, after completing one round of blood tests, she ended up dismissing my concerns (as you all may know, fibromyalgia cannot be determined by blood testing, which is why some medical professionals deny its existence). I was discouraged by my pain but also relieved that I was not suffering from an autoimmune condition.
I continued to battle my symptoms and found myself vacillating between less pain and more pain, but never experiencing a complete absence of pain. After the first doctor decided to retire from medicine, I started working with a second doctor, who repeated the blood work 3 years after my last round of testing. This doctor also didn’t see anything concerning on my blood testing, but she attributed my symptoms to stress and a demanding daily routine. She didn’t seem to believe that my physical symptoms were real and not easily remedied by minor lifestyle changes.
After having a horrible symptom flare, I knew that I had to take my health into my own hands. I directly contacted a rheumatology office that had good reviews and scheduled my appointment sans referral (I have a PPO for this reason: waiting for referrals can be frustrating). I had already been discussing my symptoms with friends, and more than one of them mentioned fibro as a possibility. I did a little research and was able to clearly communicate my concerns with the rheumatologist. Less than one month later, I had a diagnosis confirming that I was indeed suffering from fibromyalgia.
I “fired” my primary care doc and got a new doctor that was far better for me and my condition. I worked with several specialists and finally started to feel better for the first time in years. The journey wasn’t easy, but it was worth it. I’m just glad that it only took me a few months from the time that I took control of my healthcare to get a diagnosis: for that, I’m fortunate. I know intimately how this process can take many years and many tears, and anyone suffering from this condition has my sympathy and empathy. This path isn’t for the weak, which is why some have labeled themselves “fibro warriors”.
If you have a fibro warrior in your life, please send them a little loving energy: this isn’t an easy experience, and many are doing the best that they can.
That’s all for this week. I hope you all have a wonderful and safe 4th of July weekend. Take care!