I can't speak for everyone. But for me, I knew there was something wrong from the very beginning. I listen to my body. I can tell when there is something wrong. Sometimes it makes me feel like a hypochondriac, but I'm usually right.
Fibromyalgia is caused by some type of event like an injury, an illness, or even a traumatic mental event (such as losing a loved one). But from what I've read, you have to have a genetic predisposition to it, meaning its a hidden trait found in your genes. And it just needs a catalyst for it to start being expressed.
I am fairly confident that mine came from illness. December 22, 2015, I woke up with a severe respiratory infection. It was a full blown case of pneumonia, that required a steroid, antibiotics, and 48 hour bed rest before I could drive home for Christmas. After about a week, I started to feel better, until January 1st, 2016, I went to urgent care because I was afraid my pneumonia was back. My chest X-Ray came back clear, and was diagnosed with a viral infection, and given another round of steroids. 6 weeks later I came down with another bad respiratory infection, this time though it was a strong case of bronchitis. About 6-8 weeks after that, I noticed my first symptom of what I would soon to know as Fibromyalgia.
I first noticed at night, my arms and legs would feel drained. I am not exaggerating, I felt like I could feel the energy being depleted out of my muscles. This feeling started occurring earlier and earlier in the day. Shortly after that started, I began to feel muscle aches in the evening. Muscle weakness would start around 4pm, and aches starting around 8/9pm. I was also tired, all the time! At this point in time, I had scheduled my first appointment with my primary doctor, complaining of the fatigue I was feeling, as well as the weird sensations in my arms and legs. I had also begun noticing I had diarrhea, and was going poo more frequently than I used too. He ordered a CBC with Differential, a full thyroid study, a Celiac/Gluten intolerance, CMV, and Epstein Barr (I had mono when I was 22, and thought maybe I had it again). Everything came back normal. Every test suggested I was currently healthy.
Then it got to the point where I felt muscle weakness all day, and the body aches were starting around 5pm, then 2pm, then noon, then the symptom would be present by 9am. The symptoms kept coming earlier and earlier in the day. And I kept noticing changes in my everyday life. I had been rock climbing for about 6-8 months by this time, and I loved it. But I began noticing my stamina decreasing. My arms would feel exhausted early on in my climb. I was also a beginner runner. For the first time in my life, I was enjoying running. And I was fairly good at it. But I noticed my legs started to get tired more easily. I had a follow up appointment with my doctor. He suggested I see an infectious disease specialist, convinced he would know what was wrong. I refused. I knew it wasn't an infection. I suggest maybe testing my cortisol levels. I thought maybe I had adrenal fatigue. They came back normal. At this point, I was so fed up and out of possibilities, I honestly questioned whether or not it could be cancer.
My symptoms continuously progressed, until the day I woke up with them. I was freaking out. I was crying hysterically on the phone to my doctor's nurse. I didn't understand what was wrong with me. But I knew there was something wrong! I finally had their attention. I immediately had a referral to an infectious disease specialist, and a rheumatologist, as well as a prescription for gabapentin.
The infectious disease specialist told me I did not have any sort of infection. That there was nothing he could do for me. The rheumatologist appointment went a little different. I explained all my symptoms. He had me write down where in my body I had pain, and to what severity the were. He also did the physical examination of testing the 18 trigger spots. After all was said and done, he sat me down and said "You have Fibromyalgia". He finally said it. It wasn't what I wanted to hear. I wanted something curable. But he finally put a name to what I was feeling. I felt relieved that I wasn't crazy. But I felt scared and unsure by the fact that there is no cure.
For me it took 9 months to get an answer. My symptoms started in March of 2016, and my diagnosis came in December of 2016. From my understanding, this is a very short amount of time. For most, it takes anywhere from 1-7 years to possibly get diagnosed. Use your voice! If you feel like something is wrong, follow that instinct. Make your doctor listen to you. You are the one going home every night in pain. You are the one battling this day in and day out. Your doctor sees you what, 1-4 times in a year? Be your own advocate. 9 months seemed like forever for me. I don't know how someone can go 7 years before knowing what was wrong. I've heard some went as long as 20 years before a diagnosis. Let's shed some light on this invisible illness. So that others are not left in the dark, thinking they are alone, and not understanding what is going on with our bodies.
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