With a cold you have a runny nose or can almost ascertain a cancer patient due to hair loss from chemotherapy. These characteristics make sick visible.
But, with Fibromyalgia, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, migraines, and many other “invisible illnesses,” visibility doesn‘t even show up under a microscope.
It started as nothing more than calf cramps one evening in April 2014. I went to bed thinking, “Oh I just worked out too hard yesterday.” I was on an every other day work out regiment at this time. The cramps didn’t hurt. It was just calf cramps.
The next morning, I woke up, feeling great. I put my feet down on the bed and stood up, my legs crumbled under me and within a blink of an eye I was on the floor, in pain (a 4-5) and confused. I tried to get up again. I couldn’t do it. So, thinking, ‘Well, hmm that’s weird,” I called for my Mom and told her something was wrong with my legs. I explained it felt like I had pulled every single muscle in my legs but the pain wasn’t that terrible. So, to the doctor I went. Here started two and a half years of testing, poking and prodding, and weird medicine concoctions. One ER doctor in my first days of this told me to drink tonic water with quinine, to help with the leg cramps, which after only two days of drinking I couldn’t continue. It was so horrid tasting.
I didn’t mind sitting in the tube for MRIs, or the many trips to Mayo Clinic in Rochester, or all the needles, except for the needle used for my electromyogram (EMG)! Every single test run, except my ANA which was spiked but not for concern, came back normal. Normal. Nothing was wrong.
Over a year and a half in, the moment happened that made me mad for the first time about what was going on with me. My doctor told me she didn’t believe me, that, “It was all in my head.” Simply because every test came back normal.
Nothing was visibly wrong. So, therefore there was nothing wrong with me. My legs just weren’t working because I didn’t want them to work. I was somehow subconsciously making them not work.
I knew something was wrong. Those in my life could see that something was wrong with my legs. But, medically nothing was wrong.
That’s when on one of my many trips to Mayo Clinic was to go to the Fibromyalgia Pain Clinic. There, they checked for the trigger points to determine if what was wrong with me was Fibromyalgia. There they said, “You have Fibromyalgia.”
The thing with Fibromyalgia, it can’t be detected or “tested.” It’s hiding. You can seek answers and theories as to what is happening, and once everything else under the sun is ruled out, the diagnosis comes. You can come out of hiding.
Nerves are on fire, 24/7 just ranging from low to extreme. Muscles are weighed down and are being torn apart – almost as if they were tied to the rack, the ancient torture device that stretched people until their joins dislocated and limbs tore off. At least, for me this is how it feels on a level 10 pain scale day. In addition, fatigue is like Sleepy from “Snow White and the Seven Dwarfs.” No wonder there isn’t a way for a doctor to medically and physically see what’s going on!
But, once found, the game of Hide and Seek was over.
Hide and Seek became survival.