To me, a new symptom is a curveball. It’s a nice term for something that feels so bad. I feel them as gut-wrenching hits to my stomach that makes pain reverberate everywhere. Shocks, starting one place in my body and going through my body.
Here is how it all began: my body fell apart in my late forties and crashed at age fifty with menopause. It wasn’t a horror story or a deep, high-pitched scream of severe decline. I had a few anxiety attacks here and there, a little more intense than PMS and hot flashes, more frequent than before but not much drama – no sweaty sheets, no wringing tee-shirts.
In an annual check-up, I got the eagerly anticipated diagnosis of an underactive thyroid. Didn’t this mean I could eat what I wanted and the extra pounds would melt away? I thought so, but unfortunately not. I was prescribed Synthroid. I took it for weeks and weeks with no change. I was sleeping all day and everything hurt: my teeth, muscles, joints and nails. But, as I was told, thyroid symptoms need time to adjust and so I was a good patient and waited for it to go away. It didn’t.
Three months later, I still had aches and pains all over. I described it as having the flu without the temperature. I was back in my internist’s office weeping on the table, unable to swing my legs to a seated position; telling her I felt horrible. I couldn’t move. I couldn’t walk. All I did was sleep and ache. Non-stop. My internist looked straight through me, as if there weren’t tears dripping through my swollen green eyes. She turned away, clicked on her fashionable high heels and left the room saying under her breath yet still audible, “I can’t do anything more for you.” My “friend” and I call her “The Ice Princess.”
She sent me to see a rheumatologist in her big medical group (factory). This doctor told me I had scoliosis (the one thing I do not have) and that I had an autoimmune disease which would leave me wide open to all other autoimmune diseases, so I went home and Googled it. I did indeed have an autoimmune disease of the thyroid called Hashimoto’s thyroiditis: the solution? Synthroid. I was on it already, so why was I still so tired, and in pain every waking moment? I couldn’t sleep deeply anymore either . Nothing made sense to me. All the doctors said completely different things and no one, no one, acknowledged my pain.
I then went to three other rheumatologists before finally one of them came up with a disease called fibromyalgia. “I believe you have been misdiagnosed,” the second rheumatologist said. A chill of joy went up my supposedly not-so-straight-spine. A new diagnosis? A new cure? YES!!! I will be cured. Thank you! I was deliriously happy for a few moments until she then told me there was no cure. Curveball? How about complete devastation? And so, it started again. New drugs. All different kinds. Some helped a little, some almost killed me, some were radical and only used to save organs when a transplant was required. Others were benign but NOT helpful at all. One kept me in a bathroom for two straight months, unable to leave my house.
With the firm diagnosis of fibromyalgia I knew I was in a whole new world of chronic pain without any cure. New symptoms would appear from time to time and I would consider those the worst curveballs of all. I would groan when my legs starting hurting so badly I cried out in pain; some were illnesses that were old, yet I had never associated them together. Others were new and I would groan and moan at yet another symptom of some elusive yet particularly painful, widespread disease. I had always had a small bladder, so I never thought about the fact that I had to pee often until the diagnosis of interstitial cystitis was given to me. Hair loss, body aches, muscle aches and those pesky stomach aches I used to get time after time? The ones that made me get all cramped and bloated and then doubled over with intense pain? IBS, also listed under symptoms of Fibromyalgia. Each individual symptom that I thought lived alone now lived within a deeper, bigger context.
As strange as it may seem, having a chronic illness composed of all these connected parts made me feel better mentally if not physically. I thought I was an outcast but now, the diagnosis of all these links put together and given a name made me feel more credible. When I get a new pain, a curveball if you will, first I fight. Then, sometimes I cry. After that I do some research and realize, yes, this is part of that huge family called fibromyalgia. Then I understand and accept. Fighting back at the curveballs, the new symptoms, in the long run, doesn’t help. Trust me, I know.
Think of us as strong weeping willow trees that lean and sway with the strength of the wind. We don’t break from the force, we learn, as hard as it is, to lean in and go on.