If I have the courage to confess my vulnerability, to share my struggle with a hard to diagnose, difficult to treat, invisible illness ravaging lives, can my words help others in pain?
Three decades ago, my chiropractor in Switzerland, suspected my back problems were due to more than injuries. He surmised that I had fibromyalgia (FM) a musculoskeletal disorder that causes chronic over-all body pain. He recommended seeing a rheumatologist.
Unfortunately, most people suffering from FM either go undiagnosed for years or are misdiagnosed. On May 12, 1992, Fibromyalgia Awareness Day started to bring attention to this misunderstood disease and commemorate Florence Nightingale, the founder of modern nursing, who also suffered from fibromyalgia.
FM can include fatigue, anxiety, migraines, irritable bowel syndrome, skin sensitivity, stiffness and autonomic 
system dysfunction. It impacts the muscles, and can lead to pain numbness, tingling, twitching, restless legs and osteoarthritis. FM also often includes other co-infections and immune system dysfunction, which is why it is paired with CFS.
With FM, the stress response, an automatic brain reflex, is on autopilot. The brain sends out fight or flight signals with widespread effects. It’s as if one’s body is locked in a state of hyper vigilance, like a smoke alarm going off forever without a fire.
The problem lies with the amplification of pain and sensory processing in the central nervous system. Part of the brain goes haywire in glial cells.
“Most doctors don’t believe FM exists,” my Swiss rheumatologist told me, when he confirmed my FM diagnosis in 1996. “You are lucky that I do. Fortunately, you are protected by your profession. As a physical education teacher, you move all day. Movement is the best treatment for FM.”
At the time of my diagnosis, skepticism reigned within the medical community and general public. I suffered in silence and charged forward, 
determined to raise a family, teach and coach kids to never give up.
No matter how hard I try to manage pain, FM waxed and waned. Every flare up sent me spiraling in despair.
I remain locked in a state of hyper vigilance and heightened anxiety. FM deregulates sleep causing insomnia. With my body’s inability to enter the deep sleep stage, my muscles and brain never go into a restorative state, which results in muscle tenderness/pain/inflammation.
Specialists know that FM disrupts hormones, burns out adrenal glands, increases chronic pain and affects the sympathetic nervous system, but they still don’t know how to diagnose or treat it.
The clinical signs are nonspecific and overlap with other diseases. Ironically, researchers found eerie similarities between FM and long COVID, which helps legitimize FM. Research on long-haul COVID, which has similar effects, may offer hope.
Experts also know that fibromyalgia tends to run in families. My paternal grandma suffered from it back in the early days when FM was known as rheumatism or fibrocystic. My sister also has fibromyalgia.
Due to a lack of research and the difficulty in identifying causes of the illness, many practitioners still do not believe that the disease exists.
Believe me it’s real. As an iron-willed McKinzie descendant, resiliency is my middle name. As a former pro athlete, who has overcome many debilitating injuries, I am as tough as they come. Yet, the pain of FM can knock me to my knees.
Though the cause is unknown, there is a genetic predisposition. FM often manifests after a car accident, (check) or illness like Lyme disease (check 2) and the physical or emotional trauma after the loss of a loved one, parent or child (check 3).
There is no known cure, but thankfully fibromyalgia is not a death sentence like some forms of cancer and other illnesses.
My health is compromised, but I am still here fighting!
Many treatments fall short. Sleep aids to regulate sleep dysfunction, myofascial massage, exercise, diet, yoga, relaxation and breathing techniques can help.
I am not a trained heath practitioner. I cannot offer medical advice, but as a fellow human being,
I can share insight on how to cope.
I can validate that your pain is real.
I can remind you that you are not alone.
I can you cheer you on from my mountaintop!
Thank you for this post, Pat! There is still so much we have to understand and learn about the interaction of mind and body.
Herzliche Grüße aus Berlin, Bette
Vielen danke, Bette. It helps ease the pain just knowing one is not alone. I totally agree the mind and body are so intricately intertwined. I am working on both continuously, a work in progress, like all evolving human beings. Thanks so much also for suggesting following Suleika’s writing. She is inspiring and I gain insight whenever I read her work.
Thank you for explaining all this, Pat. I had a dear friend who had FM and was in constant pain. I hated standing by — helplessly — and watching that. What a crying shame too many doctors don’t recognize the symptoms, acknowledge its existence, and proactively treat it … especially since it runs in families. Good for you, hanging in there. Keep moving!!
Thanks for your kind words, Debbie. Has your friend found any treatments to relieve the pain? I get the most relief by trying to remain active. I am at my best in water where I can escape my body temporarily.