Wednesday, April 20, 2011

I Have a Diagnosis…Now What?

What does one do after receiving a diagnosis of ME/CFS or fibromyalgia?

Some of us are just happy to hear that it is not all in our heads.  And after such a long battle to get diagnosed, it is easy to think the worst is over.  But for many of us, it’s not. Eventually, we come to the realization that we are stuck with an illness that has no cure or universal treatment.  In fact, we are still figuring out what causes it.

So many symptoms and issues go along with these illnesses, and the symptoms and their severity seem to vary constantly.

We often encounter the infamous Mack (when we feel like we were run over by a Mack truck).  I used to say I woke up feeling like I was beaten unconscious the night before because every inch of my body ached in pain. 

Some days I’ll think I’m fine—until I sit up and the room spins or I’m overcome with nausea.  Other days I can’t even get out of bed.  If I can get up, it usually feels like weights are dragging me down.

Fibro fog constantly makes me feel like I’m trying to listen to what someone is saying after being suddenly awakened during the deepest part of sleep—only every other word registers. 

Along with these illnesses comes a lack of understanding from others, as well as difficulty finding a knowledgeable doctor.

I naively thought once I had been officially diagnosed that I would get the help I needed.  I also thought I was done with antidepressants and psychiatrists.  I was surprised to find how little changed after I received my diagnosis. 

The rheumatologist who diagnosed me referred me back to my primary doctor.

So what happened when I went back to my doctor?  He informed me that I should still see a psychiatrist—for patients with chronic illnesses develop depression—and I should take some antidepressants because they tend to alleviate pain and fatigue.

I tried to explain to my doctor that I had taken antidepressants back when I was having migraines because the neurologist convinced me that they would make my migraines go away.  Antidepressants hadn’t made my symptoms go away then; why would they make them go away now?  He told me that all antidepressants were different and that I should try the ones I hadn’t. I figured there was no harm in trying.

Some people have great success with antidepressants for ME/CFS or FM.  My experiences continued to be anything but successful. 

(Story continues in upcoming posts.)

2 comments:

  1. "Fibro fog constantly makes me feel like I’m trying to listen to what someone is saying after being suddenly awakened during the deepest part of sleep—only every other word registers."

    BEST description EVER!!

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  2. I read this and wept openly for a long time. Your description of everything, not just the fibrofog as julia mentioned, was so spot on it was like taking a page from my own journal.
    Thank you for sharing it.
    Not that I would ever wish either of these illnesses on anyone, even my own worst enemy, but it feels so good to know I am not alone...

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