My Story by Moira Smith

My Story, part two
A "new life" | Moira’s walking blues|
Exercises that work | Pain problems |

My Story, part three
Dark days || Improving || Learning to live with it

Introduction

I originally wrote this story in several stages for the ‘Canberra Fibromyalgia and Chronic Fatigue Syndrome Pages’, a web site I created and maintained for ten years. Since I first posted it on the World Wide Web, hundreds of people have read it, and many of those people have contacted me to say how similar their own experiences have been. In fact, nearly everyone who emailed me at my web site mentioned my story. For many, it was clearly the most valuable item there. I hope those correspondents won’t mind if I pick out some quotes to illustrate the general response:

“Reading you tell of your medical ordeals made me feel less alone”
“I really identified with the description of your symptoms!”
“It sounds so close to how I started out my quest for a diagnosis”
“Just read your story and see many similarities with my own..”
“I almost feel normal. All this time I didn’t think anyone understood.”
“WOW! I read your story -- and I thought I was writing it!”
“I was sitting at my computer yelling "YES!!!" as I read your story. I'm not alone!!!”
“Finally! Someone who understands the way I have been feeling! ”

One email was entitled in capital letters: YOUR STORY IS MY STORY.

I came to realise that reading my typical account of suffering mysterious and invisible symptoms, and of being undiagnosed and doubted for so many years, validated other people’s experience in a powerful way.
It has comforted many to know that they are not alone in their suffering, and that there are others who understand what it is like to have this illness. And I myself have been comforted to know that it is not only my story - it is the story of everyone with chronic fatigue and pain. The details may differ, but the general picture is the same.

I ended the initial version of the story with my diagnosis of Fibromyalgia, because my original intention was merely to describe my symptoms and the years I spent trying to find out what they meant. I also ended on an upbeat (or tried to anyway) by implying that getting a diagnosis was the end of my troubles. Actually, that ushered in one of the worst years of my life. Twelve months or so after being diagnosed, I left my job because I was too sick to work any more. After that, I updated my story from time to time, and now (ten or eleven years later) I hope the new ‘ending’ will give my fellow-sufferers hope that life can indeed improve.

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Why do I hurt?

Like many Fibromyalgia sufferers, I spent years trying to find out why my joints and muscles were so painful. As a child, I had chronic headaches, and what were called ‘growing pains’. Later my pains were described as ‘fibrositis’ or ‘rheumatism’. Not by doctors, though. The first doctor I consulted for the pain, when I was 19, prescribed tranquillisers. After that I didn't usually mention my pains to doctors, but I did read numerous books on arthritis and rheumatism, looking for an explanation for my symptoms.

From my early twenties I also had, seemingly unconnected with my other aches and pains, a problem neck, which I thought was the result of my poor posture. It caused me frequent, sometimes disabling, pain; determined not to let it affect my life, I just took stronger and stronger over-the-counter painkillers and tried to ignore it. At one stage I consulted an osteopath, at another I learned Alexander Technique. These did seem to help for a while, but I couldn't afford to go regularly.

Later, in my early thirties, I developed lower back pain. It began suddenly, like an injury, and then set in as a chronic symptom which first came and went, and then stayed. The first doctor I went to about this was dismissive; the next took me more seriously and sent me for X-rays, which showed no reason for my pain. She also did a blood test, which showed nothing except a slightly high white blood cell count. And she prescribed anti-inflammatories, which not only helped my back but also my problem neck, and therefore became a prominent part of the personal pharmacy I carried everywhere with me.

Over the next few years, although I was still in my thirties, going to aerobics classes three times a week, I started to feel like an old woman. Despite all the stretching and flexibility exercises I was doing, I seemed to be stiff all the time. I found that when I squatted down to look at the bottom shelf of books in the library, I could hardly get up again. I remember thinking that my body felt generally ‘uncomfortable to live in’. I did the rounds of several chiropractors and physiotherapists for various problems, but with little success.

I never felt very energetic, either. When I got home from work I often felt like going straight to bed—it was really difficult to make myself go out again in the evenings. I contrasted this with the lifestyle of friends who would come home from a hard day at work and then go out again to some evening class, several times a week. Sometimes the tiredness was accompanied by muscle aches and chills; I often felt as if I was coming down with the flu, especially before important meetings or trips, though it never actually seemed to happen. I gave up aerobics and took up Tai Chi, thinking that this would be a more suitable exercise for me. But while my fellow Tai Chi students were saying how good they felt after class, I was going home to take painkillers.

By this time I had started to learn how to choose better doctors, and I had become the proud owner of a large collection of X-rays and scans of various parts of my body—all showing fairly normal results. Various blood tests also came out normal but, as my pains got worse and I was increasingly stiff, I became convinced that I had rheumatoid arthritis. When I started getting numb prickling sensations in my legs, I worried about atherosclerosis and multiple sclerosis. I began having problems with my memory, and wondered if I was developing Alzheimer's. And in the meantime, I was also seeing my doctor for other uncomfortable problems such as gastric reflux and itchy rashes.

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The "F" word

Around the middle of 1995, at the age of forty, I became aware that I was feeling unwell. My aches and pains all flared up worse than before, I was sleeping badly (not that this was all that unusual) and in bed at night I was disturbed by restless legs. I was even more tired than normal, and had trouble concentrating. I was also experiencing strange symptoms: the soles of my feet were so sore I couldn’t stand for more than a few minutes (presenting a real problem during the 'Quiet Standing' exercise at Tai Chi class), and I was getting unpleasant feelings in the palms of my hands, as if I had been pressing them against a rough surface with all my weight. My memory lapses were also getting worse.

Added to all this, I just felt ‘ill’. Something was really wrong with me, I was sure. Considering my age, I decided these were the symptoms of oestrogen deficiency. I went along to my doctor and explained what was happening, and told her I thought it was my hormones. By this time—and over a number of years—we had, I suppose, done all the X-rays and tests possible to rule out rheumatoid arthritis or any other conditions that could have been causing my ‘aches and pains’. Also, this was the first time I had brought in a list of symptoms rather than just mentioning them occasionally, one by one. She asked me some questions and said she would do a blood test but added, ‘This is really more like Fibromyalgia’.
I had never heard of this illness. She gave me a photocopied journal article on ‘fibrositis syndrome (Fibromyalgia)’ which had me really puzzled—it talked about ‘tender points’ in specific places on the body being used as diagnostic criteria, admitted that little was known about the cause of the muscle pain, but speculated that lack of stage 4 sleep was a contributing factor ... how bizarre! The article also mentioned irritable bowel and bladder as being associated with Fibromyalgia. My first reaction to this information was that it was all very far-fetched and seemed to be just another way of saying, ‘you have pain in various parts of your body but we don't know why.’ There were no books in the library on this mysterious illness, either. (The American College of Rheumatology had only fairly recently published its Criteria for the classification of Fibromyalgia, in 1990. Also, this was before the internet made so much information available to us.)

So the diagnosis of Fibromyalgia didn't make much of an impression on me at first. I felt that, if this was the name we were going to give my aches and pains, it was hardly going to change my life after all these years. In fact, life in general was actually going rather well. I liked my job in the Public Service, and I had recently been promoted. I was earning good money for the first time in my life, and the future seemed bright. Reminding myself that things had been stressful at work lately, I took a week or so of recreation leave, thinking that all I really needed was ‘a break’. Unfortunately, the time off didn’t do me as much good as I had expected. In fact, by the end of it, I was still feeling quite ill, but I felt I had no choice then but to push on.

Later, when I got connected to the internet, I started finding more and more information on Fibromyalgia on the World Wide Web, and became less sceptical about the diagnosis. I learned from what I read that it was possible that most if not all of the various ailments which had dogged me through the years—such as cystic ovaries, unexplained itchiness and rashes, insomnia and possibly even my depression—could well be connected with Fibromyalgia too. And then I stumbled upon the alt.med.fibromyalgia newsgroup where I could share my experiences with sufferers all over the world. That's when I first realised that there were some very sick people out there, and started to wonder what was in store for me.

NOTE: I was later diagnosed with CFS as well. Apparently the dual diagnosis is not uncommon, which is not surprising as the similarity of symptoms is striking. Since I started reading up on the subject, I have found that there are varying opinions as to whether Fibromyalgia and CFS are similar responses to different diseases - "different insult, same result", or actually one and the same. I have written an article about this issue: Fibromyalgia and Chronic Fatigue Syndrome - what is the Connection?.)

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Getting sicker

At first it seemed that, despite my diagnosis, life would continue as normal. I had a name for my aches and pains, and an explanation for my other symptoms. Working full-time had become difficult, but I didn't imagine it would become impossible. Then I had to have a gum operation—a congenital malformation of the root of one of my teeth had caused an infection. Unfortunately, after the surgery, a worse infection set in and I felt very ill. Antibiotics cleared it up, and I went back to work, but I never really got better. A new and more severe stage of my illness seemed to have begun.

The next few months were a real nightmare. I was trying to get to grips with a challenging new assignment at work, while my pain and fatigue were becoming daily worse. I stopped trying to lead a social life, and spent evenings and weekends ‘resting’ in the hope of recovering my energy. It was futile.

At work, I tried to cope with my worsening memory by keeping a notebook by the phone, so I could record every conversation. I made very precise ‘to do’ lists, recording what I did for each item and the date. I pushed myself to keep going by doing one thing at a time towards completing each task.

But each step was so exhausting. Just to write and print out a simple letter—never mind the complex briefings and reports I was also required to write—was a monumental task. The strong painkillers I had always taken regularly, and was now taking on a daily basis, weren't controlling my pain. And I was becoming more and more depressed.

There came a point at which just getting up in the morning, getting ready for work, and driving to the office, was calling on reserves of determination and energy I no longer possessed. Some mornings I couldn't get it together at all. Other mornings, I made it half way and turned back. Some days I did make it all the way, only to go home early. Because I was late most mornings, I could never find a parking space anywhere near the office building, and had to walk what seemed like miles on sore feet. I would arrive at my desk to begin my working day already exhausted and close to tears.

I was still trying to present a professional, capable image to my bosses and colleagues. I was battling on with all my strength, as had become my custom, trying to filter my physical or mental symptoms out of my consciousness. I had worked before while ill. Like one in five Australians, I had experienced depression, and I had learned how to keep going through the really bad days and still get something done. But now I seemed to have lost the knack. I tried to behave as if nothing was wrong and carry on as usual but, by this time, I was actually achieving very little. My attendance at work was becoming erratic, and when I was there, I didn't spend much time actually working. I was wasting time going outside for endless cigarettes, and sneaking off to the little ‘sick room’ to lie on the rock-hard narrow camp bed in the dark, hoping to recoup some strength. (A sign on the inside of the door warned me to tell my supervisor I was there, but of course I didn't.) The humiliation of being so obviously incapable of doing the most basic task, of visibly falling apart in front of everyone, was a real killer. My self-esteem and confidence plummeted.

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Losing

In June 1996, I gave up the struggle to keep going to work. Actually, I could not have voluntarily made the decision. By this time, I was so depressed that I was seeing a psychiatrist again. It was my psychiatrist who ordered me to stop, seeing clear signs that I was seriously depressed and, as the euphemism goes, ‘at risk’.

My last day at work seemed a day like any other ... I left the office at lunchtime and drove home crying all the way. The following day, my psychiatrist told me I was not to go back to work until he gave me permission, and wrote me a certificate signing me off work, initially for one month. But from the way he was talking, he left me in no doubt that he did not expect I would be returning to work anywhere near that soon. And in fact, I never went back to that job—or to full-time work—again.

A month or two later I went back to the office to clear out my desk. Into a few cardboard boxes I packed my personal possessions—those little items with which office workers mark out their personal territory: calendar, coffee mug, clock, tissues, pot plant, photos of my niece and nephew. Into the boxes went, too, the reference books, documents and notes that I had collected in the course of eight years of working for the Public Service—my professional toolkit.

There was hardly anyone around to see me go, and I wasn’t sure if I was glad about this or not. At the last minute, a colleague arrived in time to help me get the boxes down to my car. I was relieved that it was someone I knew fairly well, as by this time I was in tears. I drove home and put the boxes unopened into the spare room. It was another year before I could bring myself to look at them again.

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Questions

Like so many of us, I often wondered, looking back: could things could have turned out differently if I had been diagnosed earlier, or if I had realised the full implications when I finally was? I asked myself whether, if I had been more careful and looked after myself better—pushed myself less, and taken more time off (and had the financial resources to do so)—I might still be working. Just how much of the development of my illness was related to stress? Does stress merely make the symptoms worse, or can it actually provoke the development of a more serious form of the disease? Was it moving house and changing jobs within the space of two months that precipitated my decline? What if I had been given antibiotics for my gum infection sooner?

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