Oh no, you are thinking, not some wacky illness-obsessed post!
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.
While he was right on both points, 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 that will hopefully keep me from the crippling condition of my great-grandmom, 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; NOTHING changes 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, dark 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.
Ok, enough of my sad story, I hope to give you some imagery of FM in the poem below:
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
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.