AOSD Update

In my last update I was fairly up beat, my pain had declined a lot and I was feeling pretty positive in myself.  I was getting lots of exercise, sleeping ok, and coping well with the fatigue.  However just after that update I got a chest infection, this is what happened:

 

  1. Very quickly, as soon as I noticed that I was starting with a cold, I felt an increase in muscle and joint pain
  2. I went to the doctors 2 days after the cold started and he said I had a chest infection, probably as a result of my steroid suppressed immune system.  I started on Antibiotics that day
  3. The antibiotics got to work quickly and my muscle and joint pain subsided in perfect step with my chest infection
  4. However my fatigue levels did not subside, in fact they increased
  5. After a week the chest infection was gone, but the muscle and joint pain started to come back
  6. After two weeks all of the chest/cold symptoms have gone but the fatigue is very bad and the joint and muscle pain still comes and goes through the day.  My concentration is appalling. 
  7. I went back to the Doctor and he suggested going back to 20mg of Steroids rather than 10mg.
  8. The increased steroid dose has not helped, if anything my fatigue is even worse.  Whereas previously on 20mg of steroids I could not get to sleep before 2:00AM and was awake by 7:00AM.  I am not easily falling to sleep by 11:00PM and struggling to get up by 8:00AM.

 

The following chart gives you an idea of my ups and downs:

 

 

 

However the good news is that I have continued to work 4 hours a day through this latest episode with the following challenges:

 

  1. I can only concentrate for about 30 minutes at a time
  2. I have to take a break every 30 minutes, or do something different
  3. I make many mistakes, and have to do a lot of rework
  4. To get 4 hours done I am finding extended day best, starting at about 8:00AM and finishing at about 8:00PM with lots of breaks in between and gentle exercise.  However fatigue and pain mean I have had to reduce walking to 15 minutes a time rather than 60 minutes, and 10 lengths of the pool rather than 40.

Steve Richards

I'm retired from work as a business and IT strategist. now I'm travelling, hiking, cycling, swimming, reading, gardening, learning, writing this blog and generally enjoying good times with friends and family

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