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:

1. A rash.  Take photo’s, normally the rash doesn’t itch and its clearer after a hot bath.
2. 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.
3. 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!
4. 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!