The importance of keeping records
One of the things that has really helped me with AOSD s keeping my own records. Its a very difficult thing to diagnose, so the doctors need all of the help they can get.
First lets consider the major symptoms:
- A rash. Take photo’s, normally the rash doesn’t itch and its clearer after a hot bath.
- A spiking temperature. Keep a log of your temperature, if you have Still’s it will alternate between well above normal and a little below, at least once a day and sometimes twice. I found that this pattern was not too evident when I was in in hospital because they gave me asprin all through the day which masked the effect. In my case its only when I left hospital and stopped the asprin that all became clear.
- It involves joints and muscules and it moves around. Keep a pain chart, I had a daily chart that recorded which joints and muscles hurt and how much. I colour coded it and produced graphs. When my doctor looked at the pain chart and the temperature chart he said “Ah Ha AOSD”. In my case the chart is a wild pattern, with different muscles and joints showing up in different colours most days. However I can see that when I am getting close to a flare, its my fingers that are the early warning!
- It maybe induced by Stress, Keep a stress chart, I did this as soon as I went back to work. When I comparsed the stress and pain chart they were almost the same. When I showed it to HR at work it was much easier to have a discussion about working from home and changing the type of work I do.
So in summary I have no majic cure for AOSD, but if you want a better deal from your doctors and from your employer, I think it pasy to keep your own records!