Travelling with FMS

I developed FMS in 1988 following a car accident in which I sustained a whiplash injury. My neck was painful afterwards, and after a few months my back began to ache (I originally worked as a nurse and had had trouble with it before) and then various other bits of me began to ache as well.

Because I was on my way between two places of employment when I had the accident, I was covered under WorkCare. At the time I was employed as an Occupational Health and Welfare Officer for the Office of Corrections, based at Pentridge Prison. My job there was to advise the organisation on matters related to reducing their WorkCare costs and help individual employees return to work after work related injuries. Employers and insurance companies don’t have a high regard for injured workers, and prisons were a very difficult environment in which to convince managers to deal well with injured people. My previous job had been as an Occupational Health nurse with a large public sector organisation where RSI was a major problem. So I heard quite a lot over the years about “golden arm syndrome”, “Mediteranean back”, bludgers and malingerers.

It took me 5 years to return to full time work, and although my employer was good about it (mainly I suspect because they knew they had little choice about it) the Office of Corrections was based in South Melbourne, and I worked in Coburg; so a lot of the people I saw on a day to day basis never actually knew. I had heard enough about WorkCare "bludgers" not to invite the same description on myself. Throughout all this time my GP was sympathetic and supportive. He would investigate each new ache but of course the tests invariably showed nothing. I saw a couple of specialists but they couldn’t find anything wrong with me either. Eventually I was back working full time and, although I had chronic pain, I could function at work, which was what mattered most to me at the time.

In 1994 I changed jobs and went to Victoria Police to manage their in-house occupational rehabilitation unit. This was another extremely unforgiving environment as far as injured workers were concerned. Not much seemed to be known about chronic pain in those days, other than that it was very difficult to manage and was usually related to people seeking "secondary gain" – from their families, employers or whoever. I took great pride in being able to work harder and longer than anybody else, and I told no-one that I suffered from chronic pain. I had a heart attack (an actual myocardial infarction, albeit a small one) about 6 months after I started there, and impressed everyone mightily by being back at work after 6 weeks, and working as hard as ever after 3 months. When I was in hospital after the infarct, a number of doctors and nurses commented that I must have a very stressful job. When I replied that the most stressful thing in my life was having chronic pain, not one of them wanted to know more.

In 1995 I started a graduate diploma in Rehabilitation Studies at La Trobe University, and learned that even doctors and health professionals pretty much despised those with chronic, unexplainable pain – only this time it was beautifully and logically presented in medical and psychological terms. Essentially however, it still boiled down to it being the fault of the person with the pain. During all this time I continued to see my supportive GP, complaining of a weird and wonderful variety of symptoms over the years, all of which were found to have no apparent cause.

By 1998 I was starting to get very tired. I started a Master’s Degree in Health Sciences that year, and found to my surprise that I could no longer cope with doing two subjects per semester. So I cut back to only one. I concluded that being in pain all the time made you very tired, and my supportive GP agreed with that when I told him. I had changed jobs again by then, and was working as a Case Manager in one of the Linkages Programs. I found the work demanding and stressful -- although part of that was to do with organisational issues that all of my colleagues struggled with. I was still however, working harder and longer hours than anyone else.

When my husband proposed that we move to England for a few years, so that he could get some international experience, I was happy to go. Everything in Australia, including my job, just seemed to be getting too hard. We moved in early 2000. A couple of months after we moved, I read an article in the local paper about a support group that was being set up for people with Fibromyalgia Syndrome. I had never even heard of the condition until then, but when I read about the symptoms they seemed very familiar. On my second visit to my new English GP, after I went into some detail about my symptoms, she diagnosed me with FMS and sent me to a Rheumatologist to confirm the diagnosis. That was more than 12 years after my symptoms had first started.

Although we had originally planned to be in England for longer, we moved back to Australia in August 2001 because of changes in the company my husband worked for. I was happy to come back, because I had missed Australia. My husband was happy for me not to work any more if I didn’t want to. I decided that working was too hard and I would keep myself busy with socialising, voluntary work and completing my Master’s degree. I had finished the course work before we left Australia, and now only had a thesis to write.

So I re-enrolled in 2002. Life looked fabulous. The only problem was, I didn’t feel fabulous. I was still in pain and very fatigued. When I tried to explain it to my new GP (I’m sure no-one will be surprised to learn that I didn’t return to the one I had been seeing previously), she told me I was depressed and prescribed pills. I took them dutifully and didn’t feel any better. So I changed them, with the same result. I stopped taking them in March after convincing my new GP that they were not making any difference.

In April 2003 I developed a "frozen shoulder" on the left side. The pain was actually far more intense than what I usually experienced, and movement became very impaired. For the first time I couldn’t do things because I just couldn’t do them, rather than because they caused pain and made me tired. I had already decided to defer from Uni and slow down a bit, and after the shoulder problem started, I gave away - one by one - my voluntary activities as well. Eventually I had given up every activity outside the house other than socialising - which I didn't do a lot, but valued too much to stop.

In September 2003 I enrolled in a CFS/FMS Self Management Course. I didn’t have very high expectations, or think that I would learn much more about managing my symptoms than I already knew. But by this time I was feeling so desperate, that I was willing to try anything.

During the session in which we spoke about grieving for what we had lost, I sat there trying to hide the tears running down my face, and realised for the first time that I had spent the last 15 years denying that there was anything wrong with me. Even after I had been diagnosed -- and that had been a huge relief, because of course I had thought I was just mad -- I had denied that having FMS was going to make a difference to living the life I wanted to lead.

I finally acknowledged that having this illness had changed my life, and would continue to do so. On that day I finally started to grieve for everything I’ve lost. The denial, of course, had been shaped by the views I had developed on the subject of chronic pain and how to live with it, and the fact that I did manage FM successfully for so long by ignoring it. And also by the fact that I am a very clever little vegemite and have found over the years that a good intellect is enough to get you through most of life’s challenges. One of the other participants made the statement that “Learning to live with FM is an emotional and spiritual journey, not just an intellectual one” -- the truth of that still resonates through me.

So, I’m hoping that understanding this at last will help me find my way through it all. At least I know now what it is I have to do. For the moment, I will just mourn for what I’ve lost, for how painful it has been (which I’ve never really acknowledged before) and for all the years spent in the struggle, when an earlier diagnosis would have hopefully shortened the process for me. I have found that the truly remarkable thing about allowing myself to grieve, is that it has also opened me up to feeling more of the joy in life. I have rediscovered my love of music.For probably the first time in my life, I am making no plans -- although I still have a dream or two, and I do have hope for the future. I have a very supportive husband and family and some true friends, and knowing that I won’t be doing it on my own makes it easier.

The other participants in the Self Management Course, who shared their pain and their insights, have had a profound effect on me. Sharing their own struggles, and being honest about their own feelings, they helped me understand how I was dealing (or not as the case may be) with my own journey with FMS, and hopefully how to travel more comfortably with it.

Lyn

2003

The course that Lyn attended in Melbourne was based on Bruce Campbell's CFIDS/Fibromyalgia Self-Help program and was sponsored by the ME/CFS Society of Victoria.

The course has also been run in Sydney and it is hoped to hold it in other places in Australia. The course in Canberra, starting in May 2004, will be sponsored by the ACT ME/CFS Society.

More information about the Australian version of the Bruce Campbell course

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