Unholy Pain

I have a condition understood poorly.

Chronic pain the hallmark to sufferers all.

A syndrome of many symptoms, surely

the scourge of physicians, sour with unbelief!

Whiners, hypochondriacs we are called.

In restless sleep there is no relief;

the pain similar to muscles mauled.

Burning fatigue, nerves’ constant  bite

waxing, waning but never gone.

Vindication, every sufferers’ right;

yet support of others’ often withdrawn.

 “Fibromyalgia Fog” a lippy phrase

as we struggle with memory and tasks.

Life becomes a fuzzy, misty maze.

Raining inside, with smiling masks

as medications throw us in a daze.

To some, other problems appear

TMJIBS, stiffness and muscle spasms,

Healthcare now our unwanted sphere;

feeling well grows into a widening chasm.

Often undiagnosed for many years

as all other conditions are ruled out.

Then tossed aside, stepchild for life;

Unbelieved, even we begin to doubt.

Is it in our heads? Are we our own strife?

“Never give in” our mottoe’d shout

I may not conquer this Demon Beast

but some day I will even the score.

This unholy pain will surely cease

with  death’s long sweet kiss

and I will feel it’s sting no more.

No, I shall attempt to not depress you too much, but I cannot ignore a condition that has affected me, and affects 1 in 12 new visits to a Rheumatologist.  I was 14 when I realized I Had A Problem that was diagnosed as fibromyalgia in my early 20’s. While 14 is unusually young, it does happen, and is associated with inflammatory disease later in life.

I will never forget sitting in English in Miss Yost’s class and trying to get comfortable for the 1000th time and suddenly realizing that I couldn’t remember anymore a day without pain.  As a very stoic kid-I lived at my ENT doctor’s office due to a congenital problem—I had been told all my life how my parents paid for his kids’ college with my medical bills. And I somehow knew that this would not be an easy answer.

So I suffered in silence and tried in a typically weird teenage way to cope by exercise and anorexia.  Back then FM had a poor prognosis, so it was a good thing that I kept it to myself. But when I got married and got a very stressful job I just couldn’t do it anymore, so I went to my doctor for help.  He jabbed my arm, I yelled and he told me I had FM and there was nothing I could do, but he could put me on Prozac and BTW he thought I was bipolar.  I cried, it had taken 10 years for me to tell anyone and that is the treatment I got.  In a rather cruel twist of fate, bipolar was not my diagnosis either and I was finally diagnosed last year with the true problem that affects so many people in our culture today: Borderline Personality Disorder.

While he was partly correct, his uncaring attitude lost me as a patient.  I suffered for another 15 years, then began with weird and frightening symptoms with very high inflammatory markers so my GP sent me to a Rheumatologist, who said I did have FM and he did have some medications to help, but he was much more interested in my mystery medical condition.  I went to him for a year for an undiagnosed inflammatory condition, then I seemed to get better, so he released me and said he could see me every six months for FM.

Six days later I woke up in horrible pain with fingers as big as sausages.  In true Lori fashion, I tried to live with it until I couldn’t even put clothes in the wash, then I dragged myself back. His first response?  He sat down and yelled at me that he couldn’t do anything else for my FM.  I teared up and said I wasn’t asking him to then showed him my hands.  Ahhh….a  REAL medical problem!  So I got the icky news that I had a pre-rheumatoid arthritis condition that needed a load of medications to keep it from progressing.

While I am grateful for the medications available now, and for the medications that are helping FM sufferers, it still is a condition that is the stepchild of the medical community.  My Inflammatory Arthritis is more painful, but I can walk it out;  only one medicine helps with my chronic muscle pain. And shame on all the physicians out there who dismiss this as Something Beneath Them.  As the payer, THEY are serving ME, and I believe that most of them have forgotten this.

Pearl in the oyster? I am one  tough cookie; I have a wacky sense of humor; I am grateful to live in a time period where medications are available and I think my struggles to shine despite my tarnish have made me a better person.  Live, Love, Learn.

Physical and mental health are so intertwined. I recently discovered that I am my own worst enemy, as my “catastrophizing”  coping skill, and severe depression prior to the start of my symptoms (which were in turn the start of borderline personality disorder) probably helped to initiate the cascaded that led to FM disorder.  So if you have FM or BPD or emotional dysregulation and your doctor wants you to get a mental health evaluation, dont fight it.  It really is all related, and getting your emotional and mental health in good shape is critical.

Make a Forlorn Fairy Smile

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