Steve's Seaside Life

Tagged: AOSD

All Posts

Ergonomics review

The Osmond Group, no not the pop group! are coming round to do an ergonomic review of my working environment.  I have specifically asked them to look into the following: Suitability of current seating, I want something that lets me change position to suit what’s hurting Issues with keyboard use,...

All Posts

High hopes dashed yet again …

In a previous post I had analysed the possible reasons why I seemed to get better whilst on holiday.  I concluded the following:

1.      I did not go on holiday in the first place unless I was feeling a lot better. 

2.      I did loads of exercise whilst on holiday.

3.      When I get home I get much worse again

I looked into the exercise theory and found:

1.      if you do moderate exercise for 45 minutes or so, regularly throughout the day on an empty stomach this stimulates the stress response

2.      This results in natural Cortisol production

3.      Natural Cortisol is about 1/5 of the Steroids I am being prescribed but could account for maybe 5-10mg dose

4.      Exercising in this way is known to cause immune system suppressing effects, normally a draw back, which is what I need

So this week as my symptoms were not too bad I started so such a regime:

1.      ½ hour cycling

2.      1 hours walking

3.      ½ hour swimming

The effects were just like when I was on holiday and soon I was pretty much symptom free.  Unfortunately it …

All Posts / Chronic Illness

AOSD Update.

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:

 

  1. For most of this period I have been on 20MG of Prednisolone

  2. I have continued to have good and bad days, more bad than good until recently

  3. Then I had a period of 18 good days, the longest period of good health for 7 months, I put this down to the Steroids finally kicking in.  Of course during this time the sleeplessness got worse so I was still pretty tired, but when there is less pain life seems so much better!

  4. I went to see my specialist last week he said given the fact that I am feeling much better I need to cut the Prednisolone to 10MG and then drop it by 1MG per week.  As I have now been on Prednisolone for well over a year I needed a bone scan as well

  5. I had the bone scan and it reveals that there is some cause for concern, but it not too bad at the moment.  I was pretty disappointed by this …

All Posts / Chronic Illness

Nic asked for some more details on my early history of Stills.

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 …

All Posts / Chronic Illness

AOSD Update

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 …

All Posts / Chronic Illness

AOSD Update

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 …

All Posts / Chronic Illness

AOSD Flare Status update

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’

All Posts / Chronic Illness

Document all about AOSD

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...

All Posts

My symptoms log.

I have posted the Excel spreadsheet that I use to log and chart my symptoms.  I have left some real data in it of the last flare that I had because it might be useful for people to compare their experience.  The spreadsheet might be useful for other people as...

All Posts / Chronic Illness

Visit from the occupational therapist

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.