What I Wish I Had Known about FM

6 girl on bench happyEven though we haven’t met, we know each other through the challenges and triumphs of this very strange condition called fibromyalgia.  We could sit and share a cup of tea, laughing and crying over the craziness of the physical nuances we experience that signal when our central nervous systems are in overdrive– sore throats, mouth cankers, vision changes, hearing water running in the neighbor’s yard two houses away, and recognizing by fragrance what type of “unscented” shampoo someone uses.

Today 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 five years with advice and looking ahead five years with hope.  I hope you’ll write and share your list 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.  

If you wonder at times if you've got brain fog, it's probably your brain saying hey - you better change something because my connections aren't working so well today.

Unexpected physical symptoms will occur:  low grade fevers, food intolerances, migraines from bright lights, feeling agitated, ringing ears, extreme tenderness to touch (even your scalp), deep physical fatigue, and funny, rearranged words like kin pushion instead of pin cushion will pop out of your mouth during conversation.  Don’t be alarmed.  Take a few deep breaths and center yourself.  Then immediately get some rest.  These are FM symptoms that come and go.  There are too many additional physical sensations to list, so I’ll just encourage you to lovingly accept yourself, stay positive, and think about something that you enjoy.

Surround yourself with uplifting beauty.  Be honest about setting health goals – walking for two minutes daily and cutting out wheat are realistic places to start.  Keep moving because your muscles will stiffen up after staying in one position after about 15 minutes.  Stay hydrated to lessen your headaches.

After enduring the brain-seizing pains and life-altering symptoms, you still have two big, hard things to do.  Eliminating both toxic relationships and grieving over “what could have been” will improve your health.  Connect your mind and body and spirit.  Learn to love yourself.

Recognize when depression sets in and let someone know what's happening.  Be open to talk therapy.  Tools—ways of changing how you see things—will free your mind of cultural taboos about being sick.  

Be present.  Regularly let yourself be off duty and watch clouds.  Your brain needs a rest because it’s been so busy managing the extrasensory perception and overload of neurochemicals.

A different, interesting, and purposeful life is ahead of you.  Your life will be enriched in ways you cannot anticipate now.  Hang in there.  Connect with others who understand.  Together you'll learn to love life again.

Gentle hugs,