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What I Wish I Knew When I First Began Experiencing Fibromyalgia Symptoms

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One summer 11 years ago I wasn’t feeling well so I went to the doctor. Thinking I just had a bad cold, I was shocked to be told I had bronchitis and an infection in both ears. Up until this point in my life I hadn’t had either. With a prescription for antibiotics, I headed home for some much-needed rest. After two weeks of being in bed and eating yogurt and drinking orange juice for most of my meals I was surprised that I was still experiencing fatigue and muscle aches. Since I didn’t have any other symptoms, I just thought my body was still recuperating from being sick and taking medication. Fast forward five more months of pain and nearly debilitating fatigue — a friend suggested I might have something called fibromyalgia. I had never heard that word before, so I went straight to the library to get more information. I quickly read through half a dozen books before I became convinced this is what I had. I went to a different doctor to get a physical to rule out other conditions before I settled on this conclusion. At this point I hadn’t been formally diagnosed, but I kept reading books, trying diets, consumed various vitamins and supplements, and taking medication to see if I could stop having fibro. What I remember reading at the time didn’t give me much hope and I quickly switched to reading books on diet, nutrition, and research articles theorizing the causes of fibro. If I knew then what I know now, I would have changed my approach almost entirely.

First, I wouldn’t have spent so, so, so much time reading for a cure or treatment. I read books, scoured blogs, read up on diets and various exercise programs before I realized the “futility” of it all.

Second, I wouldn’t have gone to the doctor so much. I remember spending so much time and money on looking for the right doctor who could help cure me. I tried medication after medication, all of which came with bills and side effects ranging from uncomfortable to unbearable. At one point I had a primary care physician, chiropractor, rheumatologist and physical therapist I went to regularly for tests over a period of three years. That ain’t cheap.

Third, I would have spent less time feeling like I had a defect. I’m fairly certain I’ve cried more tears, alone, about my health than anything else. It sucked and I wasn’t used to not being in control of my body — this is putting it succinctly.

Fourth, I wouldn’t have kept it to myself. I told a few friends what was going on with me, mostly because we spent so much time together that it was hard to avoid. They comforted me and helped take care of my physically and emotionally when times got hard. I wish I had let more people know, which probably would have helped with feeling “broken.”

Most importantly, I wish I knew the great things I would learn about others and myself through struggling with fibro. After three years I was formally diagnosed. I wasn’t surprised but my doctor ran out of things to rule out. I’d like to say I’m a better person for living with fibro. I’m more compassionate, am at times able to anticipate the physical or emotional needs of other, and am learning to be patient with myself.

It probably goes without saying that if I knew these things 10 years ago I wouldn’t be the person I am now. My hope is that others living with fibromyalgia see what a gift it can be, even in the pain. My hope is that I, too, can remember that.

Originally published: July 5, 2016
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