One Personal Journey Through Fibromyalgia

One minute I was walking down the hall at the lab, a bit gingerly. The next I was leaning against the doorjamb, trying not to scream, as my ankle gave out, shooting agonizing shards of pain from the bottom of my foot all the way up to my shoulders. A coworker popped out and retrieved my cane from where I'd dropped it, helped me back to my office, and hovered nearby as I caught my breath.

As soon as I could see straight again, I hit the search engines, looking for stabbing ankle pain rapid onset. There had been no warning, no cramping, no stumbling. To make matters worse, it was on my GOOD leg.

I'd injured my back a few years before - a nice wrenching disc-shredding incident that left me pretty much immobile for the better part of a year. I'd fought off surgeons and climbed my way back to mobility and employment, with the help of chiropractors, a sturdy cane and a lot of good ole fashioned stubbornness. I was still walking a bit lopsided and not very fast, but I was moving around and working.

One thing I did notice was that I was tired -all- the time. My neurologist said this was not uncommon with back injuries and, since I refused to take the risk of facet-screw surgery (and the risk of paralysis - it was not an FDA approved procedure at the time), I was just going to have to 'learn to live with the pain and fatigue.' (his words)

I got very little done the rest of the afternoon. The search engine results led me to very few solid authoritative sites, and the ones I did find regarding sudden stabbing ankle pain kept trying to push me over to other sites discussing a syndrome called 'fibromyalgia.'

The party line appeared to be that the syndrome only existed as an excuse for middle-aged women (and a handful of men) to not get up and move around. This was in the mid-1990s. Two authoritative voices spoke of its legitimate existence - and one recommended drinking a wicked-tasting cough syrup to ameliorate the symptoms: Guaiafenesin. I stored that data for later use and kept on surfing.

My next stop brought me to a chart of diagnostics, including a full-body diagram of trigger points. The brief text said that if the patient had widespread pain throughout all four quadrants of the body for a minimum of three months -and- if the patient exhibited tenderness at 11 of the 18 trigger points, a diagnosis of fibromyalgia was warranted.

That afternoon, I was exhibiting tenderness at about 15 of the trigger points. In addition, my other symptoms of fatigue, headaches, brain fog, dizziness, insomnia and muscle pain all slotted right into place.

Not the original page I found at that time, but the chart is much better.

So I set up a visit to the neurologist who had been treating me during the worst of the back injury, and he said:

The neurologist was the first doctor to tell me that fibromyalgia does not exist. He was far from the last.

A few months ago, a locally-respected general practitioner whose training has ranged from India to prestigious medical schools in the US stated categorically that fibromyalgia is a figment of my imagination. To quote: "They call it a 'syndrome' because it does not exist. The symptoms you -say- you are having are almost entirely psychosomatic. You cannot not have fibromyalgia since there is no such thing as fibromyalgia."

I decided that that would not be the moment to bring up the positive diagnoses of a second neurologist, an endocrinologist at a nearby clinic, and a second GP, who had started me on a course of muscle relaxants that allowed me to actually get a full night's sleep for the first time in years. During the three weeks I took them, not only was I able to sleep through an entire night, but I was also able to wake up and -move- without experiencing hideous muscle cramping in my back, legs and ankles.

Fibromyalgia has taken over my life a few times in the 12 years since I was diagnosed. Each time I've fought my way back out of the dizziness, fibro flares, nausea, body-encompassing pain.

GENTLE exercise helps; moderate exercise leaves me flat on my back for a day or so.

I avoid tomato products; something about them tends to bring on an attack (a fibro flare - agonizing pain that lasts anywhere from three days to several weeks).

I keep hydrated but don't go overboard. If I drink -too- much water, it can bring on abdominal pain that will also crumple me into a corner.

I belong to several online FM support groups and participate in the more positively-oriented ones. I did attend two meetings of a local support group, but for the most part we were all just too tired to do much - so I stopped going.

But by far my most successful coping solution has been an infectious sense of humor, the ability to laugh, and a joy about life in general.

Well, as they say, 'just when you think things can't get any worse..."

In November, after several trips to the emergency room with chest pain and several times being sent home with a diagnosis of nothing wrong, I landed in the local ER unable to breath and in chest-crushing agony. All in my head? Not this time. In fact, the years of body-wide pain had inured me to pain that was trying to alert me to a heart issue. A rush trip to a city with a cardiac unit and two stents later, we finally got a diagnosis of congestive heart failure on top of COPD (chronic obstructive pulmonary disease).

Since this 3-day ICU stay and hospitalization, although my heart issue has lessened and I'm breathing better, the overall body pain associated with fibromyalgia has actually gotten worse. Several times I have had to cut short a brief trip to the store because it hurts too much to stand still or walk. I've had to drive home carefully (luckily only a few blocks now) and wait in the car for help to get into the house.

I'm bringing it up now because it's become clear that the constant pain of fibromyalgia has masked other far more dangerous symptoms. If you sense this might be the case with your pain as well, don't hesitate or wait until the floor reaches up and smacks you in the face. Go get things checked out now - or as soon as you can do so safely.

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