Chronic Lyme Disease Summit 2

WEGO health challenge Day 28: The First Time I...

The First Time I… Write a post about the first time you did something. What is it? What was it like? What did you learn from it? 


The first time I ever saw a rheumatologist to determine if I had either fibromyalgia or lupus (some of the symptoms are similar), I had such high hopes.  I thought, finally, someone will believe me and I'll get some answers, some validation.  Boy, was I wrong.


The first person I saw at the appointment was the nurse.  She took my blood pressure and a few other stats, and then asked questions about why I was there.  When I told her I had severe chronic pain, she pointed to a stick-figure drawing on the wall that showed a pain scale from 1 to 10 and the stick figure's face in various expressions to emulate the intensity of each number.  She asked, "Today, what number, from one to ten, is your pain?"  I said, "Ten."  She replied, "No, ten means unable to function at all.  Try again."  (WHAT??)  Incredulous, I replied, "Nine."


Next came the doctor herself.  I had sought out a female doctor as my first criteria, thinking that male doctors would not be as sympathetic to a mostly female illness such as fibromyalgia or lupus.  Wrong again!  She was a tall, blonde and her first name was the same as another tall blonde former business associate with whom I'd had "issues", shall we say.  I probably reacted psychologically and subconsciously to those facts, but too late I couldn't stop it in time for it to show through.  Immediate dislike.  But that was ok, I figured, I'd carry on.  I had such high hopes that this person would "diagnose" me.  I knew I'd been sick for a while and I knew, or thought I knew, that it'd take an expert rheumatologist to give the diagnosis.  I just wanted answers.  What I got was just grief, sadness and frustration.


She came into the fluorescent-lighted room (why would a rheumatologist have that kind of lighting?  Isn't lupus sometimes triggered by fluorescent lights!!?)... shook my hand and asked what brought me here.  Same questions as the nurse.  Pointed to the same chart on the wall, had the same reaction when I said "Ten."  


I told her I have other symptoms as well.  She asked what are those, and I reached into my handbag while saying, "With the brain fog, I have trouble remembering everything, so I wrote it all down, just a sec."  and pulled out my steno pad.  The doctor groaned audibly, and said "Oh GAWD!"  I am not kidding!  Talk about disrespectful!  I immediately became totally intimidated, oppressed, and shoved the book back into my bag and tried to remember my symptoms without looking at my notes.  The emotion of being stifled in this manner won out, and I had no memory whatsoever, thereby looking like a total fool as I rattled off "joint pain, fatigue" and couldn't recall anything else such as the sensitivity to sunlight, rashes, numbness, tingling, and a dozen other symptoms, including brain fog.  


The doctor then pushed and pulled on my fingers, bending them backwards and saying that I had some hyperflexion of the joints but not enough to classify as a connective tissue disease.  She then did the tender point tests for fibromyalgia, of which I "flunked" since I only had 4 tender points that day.  Despite my griping that tender points are not supposed to be used for diagnosis (the general majority of physicians had not yet reached the conclusion and would not for another several years).   She said don't believe everything you read on the internet or something like that.  I told her I've read 25 books on fibromyalgia and lupus.  She was not impressed.  Said I did not have either fibro, lupus (which she called "a VERY SERIOUS DISEASE") or any other connective tissue disease, and sent me on my way.

A week or two later, I received a copy of the letter she wrote to my primary care physician.  It was two pages and very thorough.  Declaring at the end that there was nothing wrong with me.  As I sat there in excruciating pain, walking around in a half-asleep daze, having to re-read the letter umpteen times to be able to comprehend it, with highlighter in hand to highlight the important parts.  Nope, nothing wrong with me, healthy as a horse.

That was my first experience with a rheumatologist.  It wouldn't be my last.  I went back to that same one about a year later.  Same complaints.  Same results.  "Nothing wrong with" you.  She said I have a vitamin D deficiency, and that was it.  Prescribed Rx strength vit D and nothing more.  A few years after THAT, I went to a different female rheumy.  Similar results, although she did give me some nifty wrist splints to stop my hands from going numb in my sleep.  Otherwise, I got the same speech "Lupus is a very serious disease, you do not have lupus.  You do not have enough tender points for fibromyalgia." This time I smiled politely and said nothing about the tender point argument.  It would still be another year or two before we'd start seeing articles on the internet about tender points NOT being a criteria for diagnosis of fibromyalgia.  


During that time frame, I became friends with someone who has lupus.  The symptoms she has, and those that I have, are nearly identical.  I do not refute that it is a VERY serious disease.  No one wants a serious disease.  The point I was trying to make with these doctors is that I am sick, with something, it's chronic, it's daily, and the symptoms are the same as some of the lupus symptoms.  Not everyone with lupus has antibodies in their blood, but again, just like with the tender points, I don't have lupus antibodies in my blood, ergo, I don't have lupus.  Which is fine, I don't want lupus, I'm just SAYING, then WHAT is it?

It was a male primary care physician who eventually diagnosed me with fibromyalgia.  This occurred during the year that all the medications such as Cymbalta and Lyrica became approved for fibromyalgia, and it finally dawned on the pharmaceutical industry that fibromyalgia, instead of being called a "wastebasket diagnosis" could instead be a money-maker for them.  Don't even get me started on THAT topic!

Comments