READER REPORT:

Living with fibromyalgia

STEPH CRUIKSHANK
Last updated 05:00 12/06/2014

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Living with an invisible illness

I need about 16 hours of sleep. Why? Chronic condition's destroying my wife No snake-oil quick fix can cure my pain I may look fine but my body feels broken 14-year-old's life 'spent on a leash' Fibromyalgia means unrelenting pain Bed-bound for nine years One slip of the knife changed my life 'No help' despite life of pain 'You wouldn't know my brain was misfiring'

Have you ever forgotten a word in mid sentence? Not the conversation, just a word?

How about woken in the morning hung over, but not been drinking the night before?

These are just a couple of the weird symptoms of a little known but rather common condition called fibromyalgia.

You might be thinking, what on earth I would want to write about this for!

Over the past five-plus years I had been going to my doctor with different illnesses, aches, pains and general unwellness. Most of the time I would be prescribed antibiotics or painkillers and sent off for blood tests, X-rays, even MRIs and once a lumbar puncture. That really hurt!

I was diagnosed with fibromyalgia about a year ago. I went to my new doctor with chest pain. Guess what! There was nothing wrong with me. Turned out it was just another symptom of fibro. He asked me a few questions, sent me off for numerous blood tests and some X-rays; nothing wrong. He applied pressure to different areas on my body, called trigger points; there are 22 of them, 11 on each side of the body, neck, shoulders, arms and knees etc. I wanted to smack him one; he hurt me! Then he sent me home with a little piece of paper with just one word on it. Fibromyalgia. He told me to go home and Google it! And so I did. It was a word that was to change my world forever.

I could relate to most of the symptoms mentioned, the big one being pain. Long term, enduring pain. Non-specific, and generalised, yet often debilitating pain. Sometimes sharp, like having your head impaled on a hot poker, sometimes an ache somewhere, anywhere on the body for no apparent reason. Other times I felt a burn, even while doing something as simple as tying up my hair. And guess what! No amount of painkillers, no matter how strong, could take away the pain.

Since learning about this fibromyalgia thing, it has explained a lot of other stuff for me, and why I have experienced some of the things I do on so many levels.  At work, at a rest home hospital, I can walk into a room and know exactly whether I am dealing with number one or number twos. That apparently is sensitivity to smells! Yay! I also really shouldn’t drive at nighttime; I have been known to scare my passengers! I see things differently than most people at night under street lights. There’s also this thing called directional disorientation. I don’t just get lost on campus, I get lost in the buildings, still after six weeks of being here.

There are times when people have thought I had been drinking, when I haven’t. I have episodes of being uncoordinated with little balance and slurred speech. I have had a team leader ask if I had been drinking before work. Come on, it was 7 o’clock in the morning.

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Have I mentioned the fatigue? The overwhelming tiredness and exhaustion. I could sleep for a week I think, but alas, no sleep will come. Pain will keep me awake; ringing in the ears will keep me awake. Itchy skin, night sweats - the list goes on, and is made worse by stress and exhaustion.

There are also the flare ups. Usually these occur when I haven’t been handling too much stress well, and can feel overwhelmed by everything going on around me. Flare-ups are when pain and other symptoms are intensified.

It would appear that I have been with fibro for many years, experiencing a raft of different symptoms (there are up to 60 of them) at different times, blissfully unaware. Misdiagnosed and mistreated for many a year.

So, who gets fibro? And why, how? Turns out it is more common in women than men. Usually the symptoms will start from around the mid twenties to mid forties. The diagnosis is made usually by ruling out any other diseases that have similar symptoms. There are no clear reasons why a person will get fibromyalgia, though it seems a lot of those with it have had post-traumatic stress disorder at some stage.

The term "sufferers" has been used a lot in the reading and research I have done, but I purposely don't use that word. I don’t want to suffer, or be a sufferer of fibromyalgia, or continue to be a victim of my past. I want to and have gotten on with my life, and all I still have to offer and achieve.

Which brings me to the point of my reasoning for speaking out on the topic. When I first started taking tertiary studies classes at the beginning of this term, boy was I scared, overwhelmed and worried that I would not be able to manage all that successfully being a student and working will be. I am looking at being a student for the next four years. I want to start a nursing degree next year. And I don’t want this thing to stop me. In learning more about it, I get to find ways to manage it, and deal with the day to day issues that it brings for me.

The good news is that the doctor says I will not die from fibromyalgia. Apparently the bad news is that I get to live with it for the rest of my life.


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