Bloody Lymey

A Blog About Living with Lyme Disease

The F-Word: Fibromyalgia and Why I’m Doubting the Goodness of Electronic Medical Records

on January 1, 2013

Let me preface this by saying that I BELIEVE Fibromyalgia exists.  However, I do NOT think I have it.  I also think the medical community sometimes uses it as a catchall phrase and that it fits more nicely than “I don’t know.”   I think sometimes, too, it is an accusation instead of a diagnosis and I think I’m being wrongly accused.

My first circuit with the diagnostic world involved terms being tossed at me:  R.A.    M.S.   Chronic Fatigue Syndrome.  One by one, I would go home with the term du jour and google it.  More often than not I would think, “Yeah, but…….”  And I’m doing the same with Fibromyalgia.  Except without as much of the “yeah” part.

Fatigue?  Oh, yeah.  Weakness?  Heck yeah.

I know “Myalgia” means muscle pain.  I do not have muscle pain.  Joint pain, yes.  Nerve pain, yes.  Muscles and tendons?  No.

So I went to the Rheumatologist and he threw that word at me.  I squinted, waiting for an explanation.  He conceded that he pressed my pressure points and that I didn’t have the Fibro’ response.  Just as every doctor before him had done.  Same results.   Didn’t hurt.  Didn’t feel sensitive.  He explained that sometimes people have it and pass the test.  Hmmmmmmm………. I didn’t think it hurt anything for him to think that.  He also said what’s bothering my knees are my tendons.  When I asked if that’s what the “grinding” sensation was, he said “You have grinding?”  He squeezed my knees again, maintained it was my tendons.  I asked about my hands.  He looked at them again and offered no explanation.

I went to the Gastroenterologist yesterday due to a recurring stomach bug.  I filled out the initial questionnaire.  Yes to diarrhea.  Yes to nausea.  Yes to fever.  Yes, yes, yes.  Constipation?  I politely wrote “no,” thinking “I wish” was a more apt answer.  I wrote details in the margins.  He read it and seemed receptive. He showed me a flashcard with numbered stools on it, asking me which ones I identified with. I showed him my baseline as well as my current state.  He asked if I submitted a stool sample before and I told him yes.  He said he would go look it up.  He did.  I heard him murmuring in the other room.  He listed some of my “priors” and current problems followed by the word, “period.”  He was dictating his notes.  I heard the words, “Fibromyalgia Period.”

WHAT?

Yeah. It’s in there now.  In my medical records, evidently.

He was gone a while and returned with pamphlets and a coupon for Citrucel.  “You have IBS.”  He explained that for a clear diagnosis, one must have the symptoms for 6 months but he said that its interference with my life and missed work is an indicator.  I asked him if fever is a part of it and he said no. “You have fever?”  He asked.  I nodded, adding that it was 102 last week so he didn’t think it was just 99.0 and I’m calling it a “fever.”

He waved his hand dismissively.  “That’s something else.”  He went on about how he’s arranging a colonoscopy to rule out other things and showed me to the receptionist before I knew what hit me.  It’s arranged next Monday.

I drove away.  It was all so whirlwind.  I wasn’t prepared to be given a quick diagnosis and shown the door.  Boom. It was over.  (Please remember I did NOT feel good so I was more vulnerable to this outcome).

I got to work and stared at my computer.  My eyes scanned my office, not seeing anything.

I.B.S.

I called my mother and found myself so angry I was crying.  I never do that.  I felt like it was all over once he uttered that word, “Fibromyalgia.”  He never saw the other F word:  “Fever.”

The plan, Stan, is for me to go along with the colonoscopy and ask some tougher questions at my follow-up.  The mistake I make – continuously – is going to these people and assuming they will hear me and my concerns.  I’m just naïve.  Just completely f**king naïve.

Electronic records:  I think they can be used for good or for evil. I think a doctor can scan them with his or her eyes and take what is typed there as an Absolute.  Don’t we all do that?  We see things on the computer that seem SO compelling and legit just because they are typed and in displayed on an all-knowing computer?  How many times do we see things on FACEBOOK and have to type the information into Snopes or something to let a friend who by all appearances is intelligent and educated know that it just isn’t true?  Are doctors this susceptible to the computer and what is revealed in one?  Sure. And why shouldn’t they be?  Medical “records” are just so much more official and authoritative than Facebook memes.

I think it’s possible.  Particularly if they know and otherwise respect the other doctor.

I can’t BEGIN to tell you how sick I am of doctors.  No wonder a lot of us sit in our houses swallowing supplements and eating exotic honeys and rinsing our mouths with oil and other home remedies.  Our families might think we’re strange, but have they ever been to the damned doctors with us and seen with their own two eyes how quick they are to dismiss us sometimes?

In this world  with its insurance obstacles and stuff, we just can’t have one doctor for life.  This ain’t the ’50’s where doctors came to our houses and knew our families and trusted us when we said we were sick.  Now we change insurance and sometimes we have to choose a new doctor.  Doctors take up roots in other communities or change their specialty or get promoted.   They just don’t remember us prior to being sick.  They don’t remember us being physically active and coming in for little more than an annual physical and being given a clean bill of health.  Throw specialists into this equation and it’s worse.  They know us by reputation.  By electronic reputation.

Insurance companies want outcomes.  They want a prognosis and a course of treatment – and they should; they’re paying for this.  So by giving us a vague diagnosis they get themselves off the hook with the insurance company.

I love my primary.  I believe she believes me.  I believe she’s doing the best she can.  But these freaking specialists aren’t very special.

The more I read about Fibromyalgia the less I believe I have it.  When I first read about Lyme Disease I felt like there was a parting of the heavens and I felt like “Yes.”  No but’s.

Reading about IBS, I feel like I’ve had it ever since Lyme and being on antibiotics. I was always either constipated or the Other.

With THIS whatever that brought me to the specialist?  No.  I think it’s laziness.


One response to “The F-Word: Fibromyalgia and Why I’m Doubting the Goodness of Electronic Medical Records

  1. […] At the conclusion of my appointment, he diagnosed me with IBS (see my blog: https://bloodylymey.wordpress.com/2013/01/01/the-f-word-fibromyalgia-and-why-im-doubting-the-goodness…  or copy and paste:  […]

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