Tuesday, February 7, 2012

The Long Journey to Diagnosis


It typically takes a long time to get a diagnosis for fibromyalgia. You can't detect it in a blood test, the symptoms are strange and constantly changing, and we have still barely scratched the surface in understanding it from a medical perspective.

Still, you'd think that something this strange, that has been around for awhile, would have been better studied by now. I believe the main reason that it has not been better studied until recently was because it overwhelmingly effects women, and women's complaints are way too often dismissed or ignored. I have personally seen it happen.

I have a friend who began to suffer a variety of strange symptoms. Significant pain. Numbness of the hands. She was getting in worse and worse shape over time, eventually getting to the point where she could no longer drive because of the numbness in her legs, so I wound up taking her to doctor appointments. I would go in with her because she sometimes had trouble focusing on what the doctor was saying or remembering to ask him questions.

Tests were done, but nothing was found. She just kept getting worse. Her doctor dismissed it as being all in her head. She over reacted to her pain. There was really nothing there.

She had to beg repeatedly for more tests, and eventually they scanned the proper place. She was suffering from a tethered brainstem, which is as bad as it sounds. Scar tissue had formed around the base of her brain that was slowly crushing her brainstem. It wasn't all in her brain, but just below it.

She is now completely disabled from what her doctor kept insisting was all in her head. That doctor is still her primary care doctor, thanks to our healthcare system. No other doctor in her insurance group is seeing new patients, so she can't change. The other thing you learn when you have a serious condition is just how horrible our healthcare system is for anyone who does not happen to be wealthy. People living nice middle class lives get reduced to poverty because of their health problems, even with what is considered decent insurance.

I remember the exact moment when I first became aware of the problem. I kept hearing over and over in my head “Something is wrong, something is wrong.” It was not hearing voices, but my own voice, loud and persistent. Something was very wrong. The pain was horrible and getting worse. I told my wife that I thought I might need to go to the hospital, and shortly after that, it was very apparent that I needed to go to the hospital. She broke some land speed records getting me there.

They gave me some drugs to relax me, did some tests, and found nothing.

It took over a year of going to doctors for me to get a diagnosis. That is actually a pretty short time for most people with fibromyalgia. I went to specialists. I had countless tests done. I had so much blood taken that my blood vessels were getting bruised.

I got strange diagnoses and treatments that did nothing for me. I even tried Chinese medicine, which seemed to make me much worse, but who knows since fibromyalgia symptoms get better and worse seemingly at random.

In fact, though, I was almost a textbook case for FM. The problem was that most doctors had never heard of it. I finally got a doctor who was familiar with the symptoms. When I got a book about fibromyalgia I so well matched the symptoms there was no doubt in my mind. The diagnosis was later confirmed by another doctor considered an expert in fibromyalgia treatment.
Things are getting better, as more and more doctors are becoming aware of fibromyalgia. It is still a long difficult process to get a diagnosis, though, as they have to rule out almost everything else first. There is no simple certain test.

Even with a better understanding of the condition, for many women suffering with fibromyalgia and looking for an explanation for all their pain and misery, there are still going to be a lot of doctor's who tell them, because they are women, that it is all in their head.

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