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Nicky and I go to the same early morning hydrotherapy sessions, several times a week. In the pool one morning, as we were doing our exercises side by side on the parallel bars, and talking about how fibromyalgia had affected our lives, she told me her story. I managed to persuade her to write it down for me. Here it is:
Hello! my name is Nicky and I am 27 years old. Sometimes I feel much older. I was first diagnosed with fibromyalgia by a rheumatologist in April 1995, but I feel sure I have had some of my symptoms since I was 17.
When I was 12 years old my mother took me to an orthopaedic surgeon, because I had been complaining of a sore back. After x-rays and a physical examination, it was determined that I had a mild case of scoliosis. I hadn’t heard of this before. I found out it meant a curvature of the spine. I started going to a chiropractor and had various treatments over the next few years.
As a teenager, I was very involved in the Girl Guide movement. In February 1987, when I was 17, six of us I went on a two day canoeing trip to Burrinjuck Dam, near Canberra. We were paired according to our strengths. Now, looking back, I feel I overdid the canoeing that weekend.
A couple of months later I started feeling pain in my right arm. I decided to try physiotherapy instead of chiropractic treatment. But my pain got worse - spreading to my left arm and my shoulders, and eventually around to my back and up to my head. I always presented a challenge to my physiotherapist, as she didn’t know what she was treating.
About September 1994 I decided to go and visit another chiropractor, who is also an osteopath. A friend of mine, who was being treated by him at the time, spoke highly of him. I am still receiving treatment from him, and he has been very supportive. There is also a masseur working there, and I started having massage once a month. This wasn’t doing anything for me, so I increased it to fortnightly, and as of a few months ago I have been having a massage every week. Massage is generally thought as being relaxing. Well, I can tell you that, while it is pleasant some of the time, it is generally very painful. I hear you say “Well, why do you have it then?” The answer is that it helps to loosen up my muscles, so I am not so stiff. I have developed a high tolerance for pain over the years, through having to put up with it. Sometimes I’m not sure whether this is a good thing or not.
During my school days I had varied support from friends and teachers. Quite a few of my teachers, I felt, didn’t believe me when I was in pain. When I was doing years 11 and 12 I was in a lot of pain. Fortunately I did have some teachers who were very supportive, and loaned me comfortable chairs, or allowed me to go for a walk during class, if I was in pain. Today I am still in the same amount of pain, but I have learned to deal with it better, and focus my mind on other things.
After I left school, I did courses in Child Care and Special Care and for a few years I was employed as a Support Worker in an organisation helping people with disabilities. I didn’t tell them I had a problem with my back. I didn’t even want to admit to myself that my health could be a problem. But when I had been working there for about two years, I attended an eight week rehabilitation program at the hospital. Then my employers found out I had back problems and told me I wasn’t suitable for the work, because I needed to be able to do lifting. I was taken off the job I was doing, and they told me I would be given something easier, but I wasn’t.
I didn’t mind, because I had already realised I needed a change of employment, and had been accepted by the local Commonwealth Rehabilitation Service (CRS) for assistance in finding another job. They specialise in helping people with disabilities. This was in 1994. I had a very nice and supportive case manager who helped me in every way she could. At this stage I was with CRS because of my back, but when I was diagnosed with Fibromyalgia Syndrome the following year, the FMS became the main focus.
One helpful thing my case manager got me to do was to record my activities during the day, e.g. exercise, rest, sleep, working on the computer at home etc, and she would tell me off if I didn’t rest in between. On my good days I tended to try and catch up on things I needed to get done. I used to go full speed ahead, thinking I was Wonder Woman - and I would pay for it over the next few days. I still haven’t really learned, but I do break my day up with rest periods, so I can get things done without getting so tired or sore. I still get frustrated when I have things to do and I am only able to do one thing on my list. I try to achieve at least one thing a day, no matter how small it is.
For about two years my case manager and I tried to find a suitable job without success. For three months I did work training, 2 hours one day a week. This was good experience but at the end of it I still wasn’t ready for work. I am now trying to get the Disability Support Pension but so far without success. I help out at the Arthritis Foundation when I feel well enough. When people ask me what I do, I tell them I do voluntary work for the Arthritis Foundation and that usually satisfies them.
I used to walk regularly, but I find it too painful and tiring now (I get sore hips, and my feet hurt if I walk too fast), though I do try to go for a walk on a flat surface occasionally when I feel I can. I go to hydrotherapy three or four times a week. I love it, as the warm water allows me to do my exercises with much less strain on my body.
I have the usual fibromyalgia symptoms of pain; a lot of stiffness, especially in the morning when I get up; memory and concentration problems; difficulty sleeping (I wake up a lot at night, especially when I’m stiff and sore); and irritable bowel syndrome. I also get numbness and tingling; ringing in my ears; a strange buzzing in my ears, and an electric feeling over my head like static; a sore chest with cramps that can make me sick sometimes; reflux; throbbing and pressure behind my eyes; and dry eyes. I had to stop wearing contact lenses because of that. Sometimes my knees lock up. I have weakness in my arms, and am always dropping things, and that’s really hard because it’s so difficult to bend down and pick them up again! I get tired quickly. I do less than I thought I was going to be able to do. If I get too tired and run down I get swollen glands, mouth ulcers and fevers. I seem to feel the cold more now than I used to. Some of my symptoms make me think I have myofascial pain syndrome as well. I take anti-inflammatories occasionally for my back, and a tricyclic antidepressant to help me sleep.
I don’t dwell on the pain and I don’t let it run my life. I keep a positive outlook on life. I know this helps. But without the support of friends who also have to deal with chronic pain, and my family and my doctors, chiropractor and my massage therapist, I don’t know how I would have coped.
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Moira A Smith - Canberra, Australia
last revised 12 February, 1998