My Fibromyalgia Madness

I am sure that these days everybody knows what Fibromyalgia is. We hear about the famous personalities that suffer from it. We see eccentric girls that dress like dolls that have it. Daytime TV talks about it. But what is it?
Some say it is a debilitating disease and others say that it is a psychological condition.

Is it all in the mind? Are those that suffer from Fibromyalgia just little attention seekers? Are they lazy? Are they mad? These questions, and many more never seem to be answered.

It seems to be a trending illness to have these days (In fact it is neither an illness nor a disease it is a syndrome) and everybody and their dog seems to be getting diagnosed with it. Support groups on Facebook are increasing (and decreasing, as discrumpled members get into inane arguments) and their posts consist of mostly complaints. They go on about medication and seem to revel in feeling bad.

I made one of the first ever Fibromyalgia Groups on Facebook in Portugal. After about a year though, I had to leave it. I could not stand the negativity. It seemed to me that all these people wanted to to was was wallow in their self pity and negativity. If I posted something positive to the group, it was ignored. It ended up being an endless stream of badly put together glittering Memes, about gentle hugs and God.
I left my own group.
So what is my story you might ask? Why should I have my opinion? What exactly was ‘My Fibro Madness’?

When I was about 21 I got a severe pain in my shoulder, back, front and right arm. After a few days of severe pain, I could no longer take it and went to the hospital. They had no idea what it was and sent me home after injecting a strong painkiller.
I felt like the pain would never go away and it didn’t. I went back to the doctor. They took x-rays, did blood tests and nothing. They told me just to go away and forget about it. But I couldn’t. I could hardly brush my hair, or even raise my arm. I was told to rest.

A year or so passed and I thought I would pursue it further. I mean I should have been pain free by now, right?

More tests — no results. Despite being told there was nothing nasty going on, it still didn’t feel good. Brain scans, electroencephalograms, cat scans of the head. (I had no idea why they had suddenly started focussing on my head, maybe they thought it was ‘all in my head’)
This went on for years, and years.

I had kids, first pregnancy I breezed though it, bad afterward though. My second pregnancy was tougher. I look back and have no idea how I managed to change my babies clothes, nappies and do washing by hand. I used to just cry sometimes. When spoon feeding my son I used to have to hold my right arm up.
Doctors told me there was nothing wrong.
That it was all in my head.
I knew there was something wrong.

In the meantime, because of pain, bad posture had taken hold of me and my aches and pains became more diverse.

Eventually, after 16 years of pain, I saw a rheumatologist. She diagnosed me after an earth tremor. Yes. I was in the surgery and there was an earth tremor. There were also a few very scared interns there. After the building had shaken and we were sure the worst was over, the doctor examined me. After checking out the pressure points, tender points or whatever they call them and going through all the tests I had had, she decided that I had Fibro. Through a process of elimination. This means, as all other tests came back negative, it had to be Fibro.

So for years I had a diagnosis, but the problem was, whenever I went to the doctor and complained about a new pain, he would simply tell me it was the Fibromyalgia.

Hip pain? — Fibro

Back pain? — Fibro

My shoulder pain? — FIbro

So I just ignored it. Years later when I had a rather active cleaning job, my body started to cave in. My hips (which had never been x-rayed) were causing me a lot of pain. After practically threatening the doctor with death I got x-rays and eventually, (long story) an MRI. It turned out that I had a torn cartilage in my hip and fluid was trickling out. I also had a severe tendinitis in two tendons in my leg. Noting the similarity with the pain in my shoulder I got an MRI on that too. Turned out that I had a calcific tendinitis, tendinitis that had never been treated and and had become chronic. So those severe pains (apparently one of the most painful shoulder conditions you can have) were neither all in my head, nor would it have been easy for me to forget about them — NOR was it FIBROMYALGIA.
I had been caught up in the FIbro net. It got me wondering just how many people have been told they have Fibro when they don’t. I see things on groups and forums that make me shake. People being told that they have Lupus and Fibro, or Arthritis and Fibro.
HELLO! Fibro is diagnosed by elimination, so how can you have arthritis and Fibro? Also nowadays they are told it is a debilitating disease and their is no future (I am not surprised they are so negative!) Even the most recent information on Fibro is distorted.
My advice is, if you have been told you have fibro, avoid medication (that just causes more problems, believe me, I know), exercise, try to be strict with your sleep regime. If you have a nagging husband — leave him. I did and my heart rate slowed down by 20 beats!

To conclude I will say this. I found an article a year or so ago about Fibro saying that actual true cases are very rare. Sadly I have never found that article again. So ask yourself. Are you satisfied with your diagnosis?




Artist, Portuguese teacher, Singer / Songwriter, Writer and Philosopher…kinda…

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Amanda Gleaves

Amanda Gleaves

Artist, Portuguese teacher, Singer / Songwriter, Writer and Philosopher…kinda…

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