It all started back in October
of 1992, when I was 38. One day I didn't feel too well, but I couldn't exactly
put my finger on what was wrong. I thought I might be in for a cold or the flu.
That same day I noticed a small rash on my right upper arm - it just looked like
a minor skin
irritation and I didn't think anything of it. The next day I felt completely
normal again and did so for the next week, apart from this small
rash still being present, but it didn't get any worse or trouble me at all.
One week later, it was a Sunday afternoon, and my mum and I had been at our
usual monthly craft market where we had a stall. During the
afternoon, all of a sudden I felt I was getting a temperature and I started to
feel quite off colour. This time I was sure I was in for a dose of the flu.
While driving home from the
market, I really started to feel awful, I was getting feverish. My left index
finger started to hurt and when I looked down at it, I noticed it was very
swollen and tight. I could also feel this prickling sensation on my chest and
shoulders. When I got home I looked in the mirror and saw I had a rash all over
my chest and shoulders. I took a couple of aspros and went to lie down for a
while - the aspros brought my temperature down and I didn't feel too bad after
that. However later that night, whilst sitting down on the couch watching telly,
my knees started to hurt. When I went to stand up I found I couldn't - not
because knees wouldn't work, but because of the pain, it was terrible. I had to
get my husband to pull me up from the couch. For the rest of the evening, I sat
on a kitchen chair (being higher than the couch) as it was easier to get up and
The next day I was feverish again and my knees were even worse so I went
to the local doctor's. She told me I probably had some sort of virus which
was going around at the time which gave people a rash and painful joints.
She told me to take Panadols and if I wasn't better in 4 days she would do
some blood tests.
4 days later I was no better so she ordered some blood tests. The blood tests
revealed nothing significant except for elevated ESD (or was it ESR?) which
meant I had some infection in my body.
At that point, we went to see our previous family doctor (from the area where we
used to live). He was none the wiser either. My symptoms fitted a few sicknesses
but none of these had shown up in the blood tests. However,he was very helpful
and phoned Melbourne's well known infectious diseases hospital, in case they
could shed any light on the matter. He spoke to the Registrar of that hospital
who asked a lot of questions, which I answered - but it didn't really lead
The doctor referred me to a specialist, a rheumatologist. This specialist was a
lovely, gentle man. I mention this as it was important at the time, because I
was now starting to get worried that maybe I had something very seriously wrong
with me and nobody could find out what it was. This specialist also impressed me
with his thoroughness, his concern and as I said before, his gentleness and soft
voice. He didn't frighten me.
He ordered a lot more blood tests, and I mean a lot! He apologised for sending
me for more blood tests but explained that there were a lot more blood tests
that hadn't been covered at local GP level. He also said not to think my local
GP had been remiss in not ordering these extra tests, but at the time I saw my
local doctor, she would've had no reason to order all the extras. The specialst,
Dr. Findeisen, also ordered urine tests and a chest x-ray as well as the blood
tests. He made an appointment for me to return in 2 weeks time, and during that
time he wanted me to keep a 24 hour diary to record my temperature and how I was
During that 2 weeks I faithfully recorded everything, and towards the end
of the 2 weeks, it seemed my temperature was improving and my joints were
improving as well. Again, nothing signifcant showed up in all the tests. He told
me his main concern was that I had Lupus, but the tests for that proved
negative, same for rheumatoid arthritis, and another couple of possibilities
which I now can't remember. His opinion was that it looked like I may have a
virus after all as all the tests I'd had weren't showing up anything.
That was in January of 1993. I did have another appointment to see the
specialist and probably have more tests but I didn't keep it (not until some 6
months later). This was mainly due to the fact that we received the bills for
all the tests. The blood tests alone amounted to close to $300. There was no way
we could afford this sort of money regularly, especially as now I was no longer
able to go to work. I sort of struggled along and did seem to be getting a bit
better. However in late April, the symptoms all returned but oh, so much
It's from here that the order of things get a bit hazy. I just can't exactly
remember the sequence of events so I'll just write what I remember - but I was
now really sick. The pain in my knees, elbows, ankles and wrists and fingers was
excrutiating. My temperature was getting up to 42 degrees C every day (I
think that's about 104 degrees F). I was virtually bedridden as I could barely
walk (in the earlier stages I was able to crawl around on the floor but then I
was unable to even do that). I couldn't eat because I just wasn't hungry and
eating made me feel sick - I lost 20 kilos in 14 days. I could hardly use my
hands, they were all curled up. My right hand was the worse affected and because
I couldn't use it at all for so long, it sort of eventually cemented itself into
the position I held it and even today it is still crooked. I couldn't use the
bathroom on my own - I couldn't do anything on my own because I could
hardly use my hands - I looked terrible too, my face really looked like grey
Then there was the rash. Every morning when I awoke I had these tiny pink
pinpricks all over my thighs, torso and arms. During the course of the day,
these pinpricks got bigger and bigger until they all joined together and by
evening they'd turned into very long red welts (I looked like I'd been whipped)
Somewhere along the way, in desperation, I went out to the infectious diseases
hospital I mentioned earlier, to see what they thought. Another load
of blood tests - again showing nothing specific. The doctor I saw at
the hospital obtained a report from my specialist and told me that my
specialist had been very
thorough and in his opinion, there was nothing more he should have done. At
least this confirmed my faith in my specialist.
It's worth noting here that I saw this doctor at the hospital early in the day,
when my rash looked completely different to what my specialist had ever seen.
The doctor reported to my specialist that in his opinion I had AOSD. He also
said that I should continue seeing my specialist for management. I
learned that my specialist had already considered a diagnosis of AOSD but
the rash I presented with, was not indicative of the disease. The next
time I visited my specialist was early in the day - one look and my rash
and the AOSD diagnosis was confirmed. (I have since seen photos of the
rash on other people, and it is exactly how mine was.)
As I said, I can't remember the exact sequence of events but I'll mention here
some of my memories - they will be quite fragmented. The first time
I was prescribed cortisone - for me it was like a miracle. I'd wake up in the
morning with curled up fingers and hands and within 30 minutes of taking
my ortisone tablets, my fingers and hands would start to unfold and I'd have
limited use of them. The cortisone also allowed me to again become mobile
- around the house at least. I could now walk (still with difficulty) on
my own, go to the bathroom on my own, cut up my own food etc. etc. However,
whenever we went out I had to have a wheelchair - I needed the wheelchair
for about 6 months.
The drugs I remember taking are Plaquenil, cortisone (then later
methotrexate), Prednisolone, Zantac and maybe something else,
I'm not sure now. I eventually got to fear having blood tests. You'd think
I would've got used to them, having them once a week, then once a
fortnight for so long, but it had the opposite effect - I came to dread them!
All along, there were two parts of my body which were affected the worst, my
right ankle and my right wrist (I went into details about my wrist earlier on).
Still today, both my right ankle and wrist are swollen. I can't walk long
distances anymore. I've walked with a marked limp ever since I first got sick.
In fact I've limped for so long that my right calf measures about 5 cms smaller
than my left calf, but I don't mind that. I can't lift anything heavy with my
right hand now, and I can't quite manipulate my hands the way
I used to.
I lived in our loungeroom for about 2 years, almost 24 hours a day lying on the
couch. I hated it because I felt bad that my kids had to see me like that. I
remember sometimes in the wee hours of the morning my temperature would
get so high, I'd open up all the windows in the lounge and let the wind and rain
blow in on me in an attempt to cool down. Other times I had uncontrollable
shakes with the fevers.
There was only a short period of time where my rash was itchy - so itchy, like
hives, I couldn't stop scratching it. I'd wrap up ice blocks in face washers and
put them on my thighs (that's the only place it ever got itchy). Luckily the
itchy bit only lasted for about a month, then it just suddenly stopped itching,
but still looked terrible. I used to say I looked like an alien out of a horror
movie. But luckily again, I never had any rash on my face.
I don't take any medication now, apart from the occasional painkillers if I've
walked too far or for too long and it's been 3 or 4 years since I last saw my
I remember my 40th birthday, we had a party. I was worried about people thinking
I was very drunk because every time I stood up I had to be steadied and I had to
lean on someone to walk.
I remember people staring at me blankly when I was trying to explain AOSD to
had ever heard of it.
I remember one night sneaking in to my kids' rooms, standing there looking at
them, crying softly to myself, and kissing their foreheads because I was
convinced that I wouldn't be waking up in the morning.
My husband was still working when I was sick but luckily my mum had recently
retired and she came down every day to do what she could for me, make lunch
for me (when I could eat again), and just kept me company. Of course she never
told me at the time, but she was sure I was dying, she felt helpless as she
couldn't do anything (a pretty normal mother reaction I think.) My husband was
excellent in looking after me, cooking meals for
the kids etc.
And now for one of the best memories - my last visit to the specialist, he
took my hand, wished me good luck, and told
me, "Well Karen, I hope I never see you again!"
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