ouldn’t it be ideal if we were in the same space, drinking coffee and getting to know each other? Unfortunately, you are where you are and I am where I am, so we must make do with words. As a writer, I know pretty words. As a woman, living with Fibromyalgia Syndrome, pretty words won’t serve to describe chronic pain and the cluster of symptoms associated with Fibromyalgia.
Sometimes I forget words. Sometimes I forget me. The medical term is Fibro-fog. The first time my brain fogged-up, I had started to make spaghetti. I was standing in the kitchen watching water boil, thinking how pretty the bubbles were. I couldn’t remember what thing was supposed to go in the water or where to locate the thing.
I’m the abused adult child of an alcoholic. We won’t dwell on those years. I wasted too much positive energy trying to make my mother love me. Much of my childhood is blanked-out to the extent I can’t remember the house where I lived.
One of the lingering effects of childhood trauma is Post Traumatic Stress Disorder. I experienced a repetitive dream until I was in my late 30s. My mother would be chasing me with a knife. I would wake up screaming, drenched with sweat, certain she was in my bedroom.
The old theory rings of truth about marrying a version of the bad parent. I did that. But, to my second ex-husband I shall always remain grateful for quashing the nightmares. One night, he sat up in bed, called her a few appropriate names and swore he would make her sorry if she ever came back in my dreams. He vowed my mother would never hurt me again and if
she tried, he would punch her out. That was the last time I dreamed about my mother!
Now, you have an idea of my background. However, I know nothing of yours. Have you been diagnosed with Fibromyalgia
? If not, do you suspect that you have it? How do you deal with chronic pain and living with Fibromyalgia in general? If you have an FMS story, contact us here
For decades, we the people with chronic pain were admonished IT was all in our head. The part of us that wasn’t crazy was under “stress”. So, I swallowed their tranquilizers and muscle relaxers, which didn’t touch the pain. One doctor finally diagnosed irritable bowel syndrome (IBS). His RX was drinking bran mixed in orange juice, a divorce and a job change. The bran swelled-up, causing me to gag. But he was right about the divorce and job. IBS is one of the syndromes in the Fibromyalgia cluster.
From the late 1960s until 1997, one or another of my body parts endured daily pain. Back then, I suspect doctors were afraid of losing their license if they dared manage patient’s pain. Fibromyalgia remained a “tough diagnosis” or “mystery disease”.
Because nobody can see our pain, they have no basis of comparison. After all, we look fine on the outside. Maybe we’re just faking it for attention? I feel empathy for these sad sack people. I would never wish for them walk in my shoes.
By 1997, I had remarried, this time to a good man. He is a musician and we decided to get a fresh start by moving to Nashville. One day the phone rang and a syrup voiced lady inquired if I’d be interested in a free spinal adjustment, with acupressure. Keeping the appointment was my first breakthrough in living with Fibromyalgia syndrome. That god-like chiropractor has earned a special place in my heart. After taking X-rays, he inquired if someone was abusing me. I spilled out stuff about my childhood and marital abuse I’d never told to a living being.
He did the digital palpation of 18 potential tender points. After the session, we went into his office where he gently explained about Fibromyalgia and confirmed that I have it. The X-rays showed places in my back and my neck, which clearly (to him) evidenced abuse. Further, I had latent “muscle memory” of repetitive beatings, which finally clarified the reason I flinch when people touch me.
The criteria for Fibromyalgia diagnosis is widespread pain for longer than three months and 11 out of 18 tender points. I scored 18. Now, this all-consuming, insidious thing had a name. It was if I exhaled the first time in over 30 years. I began researching and reading how other people managed living with Fibromyalgia. I discovered that many strange things, which aggravated me or exacerbated the pain were lesser known manifestations of Fibromyalgia.
Lesser known symptoms of Fibromyalgia
Since you likely know the main signs and symptoms of Fibro, here is some weird stuff I found that might help you better understand you’re definitely not nuts.
Bright lights and noise cause anxiety and agitation. Medical practitioners know little about the cause of generalized hyper-vigilance, except it is another symptom linked to PTSD, Post Traumatic Stress Disorder. I avoid noisy situations whenever possible. I can’t work or read under fluorescent lights.
I’m hyper-sensitive when someone startles me. I literally jump in my chair if someone walks up behind me and touches me. Doors slamming, dogs barking, loud talking, sirens and so on put my body into ‘fight or flight’.
Although it is under-researched, tactile Allodynia is the pain we get from a stimulus that doesn’t affect normal people. My clothes feel prickly and my bed is like one large anthill. Organic cotton is my best friend.
TV and movies with high speed chase scenes, chair gripping suspense, excessive violence, flashing lights, etc. make me dizzy and queasy. Also, I am an empath. For instance, when a character is dying, is raped or a child is tortured, I feel their emotions, experience their pain.
Then, there is excessive sweating. When it’s coat weather, I’m frequently soaked with sweat. I once heard ladies don’t sweat, they perspire. Obviously whoever said that never tried living with Fibromyalgia.
The telephone tortures me. Its ring irritates me. Sometimes I pick the darned thing up and Fibro-fog hits. Especially when somebody is asking questions..I frequently forget my zip code and cell phone number.
I have taken great care not to suggest that you hitch up your big person pants and follow me. I’m not a guru. I’m just an ordinary woman living with Fibromyalgia. But I refuse to let it define me.