Newly diagnosed? What I wish I had known about fibromyalgia

Someone asked me what I wish I had known about fibromyalgia at the height of my misery and pain, and when I first suspected that I had FM symptoms. So, following the suggestion I’ve read time and again in books, I wrote two letters to myself–looking back with advice and looking ahead with hope. I hope you’ll comment and share your thoughts of what you wish you had known earlier about fibromyalgia.

Dear Friend,

In the coming months, you will be walking a unique and unfamiliar path. Nothing in life so far has prepared you for the changes your body and spirit will endure.

Take heart, because others will reach out and encourage you to trust your intuition. Be still and listen carefully despite the searing, stabbing, and throbbing pains. Quiet your mind when the world spins madly around you with a confusion of sound and light. And when you feel your life force slipping away, gently evaluate why. Have a touchstone to stay grounded when nothing makes sense and mixed-up words roll off your lips. You’ll be okay.

The bizarre sensations like when your hair hurts, or you feel like screaming after sitting on a hard chair for a few minutes, are symptoms of central sensitization. This means your central nervous system responds to your environmental stimuli in a heightened and hyper-vigilant state. Learn what calms your body and keep it nearby–lavendar and a silk scarf in your purse. Give yourself permission to stand and walk anywhere at any time.

When you’re feeling really out of whack, strike a Tibetan bowl to the beat of shamanic drumming. You’ll laugh about this suggestion because you always liked the Beatles over earthy music. Crying over changed life dreams will help. More sunshine improves your pain and spirits.

For a couple of years record your daily activities and their effect on symptoms. And for heaven’s sake, wear a loose dress when your bra and pants cause your back to feel like it’s sunburned. Little steps really do lead to big changes – for both good and bad. Don’t get lazy about eating nutritious food or going to bed on time.


(to be continued…)

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