I have always loved swimming, and since I have started to suffer with AOSD, it has become all the more important to me. Right now I am not able to swim at all, but hopefully within a few days I will be swimming ten lengths, within couple of weeks I may get up...
Well the reason for my relapse again last week appears to be that I have a throat infection. White spots on my Tonsills and a sore throat and mild temperature being the evidence. As always whenever I get an infection the Stills symptoms come shooting back, but this time I...
This is another of my regular updates on how I am progressing/coping with Adult Onset Stills Disease. The following graph gives you an overview of symptoms:
Here are the highlights:
There is a great message board available for people who suffer from Still’s. Nic responded to one of my articles asking for more info on my early history. Here is my answer:
It just started out of the blue. I was in London at a conference, I started with a sore throat in the morning, by lunch time my legs were hurting, I managed to walk to the train in the evening, but could not get off the train by 10:00. The doctors had no idea, and just gave me anti-histamines for a week, but they had no effect, after a couple of weeks I was mobile again, although it took 6 weeks for symptoms to really damp down. After which I was essentially symptom free for 18 months. I had a few aches and pains but I did not really relate these to the Stills flare.
When I had my second flare it too was triggered by a sore throat, again it was not diagnosed, but this time died down after about 2-3 weeks without medication.
My third flare was about 12 months after and was also triggered by a sore throat. I managed to get into hospital this …
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:
I am doing fairly well. I track my symptoms, and using that tracking scheme my average symptoms level during the whole flare was 50, during the peak of the flare it was 70 and its now down to 30 and the 3 day average is fairly stable, although there is still plenty of variation during the day and between days. My mental acuity is still not what it was and I still suffer from fatigue but less weakness as I have done a lot of exercise and so my strength is much improved. I am finding that the more exercise I do the less pain I am in, provided I take it easy. I am still taking 10 mg of Steroids and my doc wants me to use anti-inflammatories as well, but I am not keen to take the risk of further side effects and would rather just put up with the pain.
During the last 2 weeks though I have started with really severe, very localised inflammations, in my knee, jaw and back. The area involved is probably on the size of a 10p piece, but the pain is such that I am …
AOSD Flare Status update
My current Adult Onset Stills Disease flare seem to be nearly over now and I should be back at work in a couple of weeks. This is my longest flare, lasting from Mid January to the end of May. Its not been too severe because now I am diagnosed the drug treatments keep me fairly stable, but its not very comfortable and its difficult to work through the pain, fatigue and difficulty concentrating.
For those of you who are interested, probably only fellow AOSD sufferers I have attached my ‘end of flare report’
I came across across a medical paper on AOSD the other day, but it was so full of jargon I couldn’t follow it. I created an annotated version which I have posted here in case it’s of any use. Not being a medical person myself don’t take it too seriously...
I called this blog, ‘adventures in home working’. Why did I choose this title? Well it sort of sums up a lot of things for me:
1. I have this disease, AOSD, and home working is more suited to people with this condition
2. I am an IT guy, and for a while I have wanted to see how viable it is to work from home
3. I have 4 children, and I wanted to spend more time with them, and be able to arrange my work life more flexibly
4. I have always been a person who works better with people I know and interacts with them face to face. I wanted to get beyond these limitations and extend my circle of friends and contacts
I had my first visit from an occupational therapist today. I have been referred to her to assess the type of work I do and how that can best be adjusted to make it easier for me to cope. She arrived 2 hours late and stayed for 4 hours. The visit itself tired me out but it was very useful. She helped me to see my condition in terms of its affect on my work, and the affect my work has on the condition. The process she went through was enlightening, and should be useful. Not suprisingly she has not worked with anyone with AOSD before but she says that the symptoms and affect on work are simillar to those that people suffering from chronic fatigue go through.
She wants me to start an 8 week controlled trial, where I will work from home on well bounded tasks and keep lots of records. For the first 4 weeks she wants me to increase from 20 hours a week to 37.5, my normal hours in gradual steps.
All in all 4 hours well spent.