Adventures in home working

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 am resisting increasing the steroid dose and just putting up with it.  Its taken me a while to get down to 5MG and I don’t want to go through that process again.

At the moment I have pain in all my main joints, wrist, elbows, shoulders, ankles, knees, lower back, am aching pretty much everywhere else and am feeling very tired.  Concentration is poor and I am not in the best of moods!

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:

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 only lasted for 3 days, and then all of a sudden my elbow started to hurt, then my kness and then my ankles etc etc.  I could not sleep because of the pain so I took sleeping tablets.  By the next day I was exhausted and most of my joints were hurting and concentration was typically poor.  So what have I concluded?

1.      I haven’t given up on the exercise theory,  I will have to wait until symptoms subside before I try again though

2.      It may be that it works for a few days and then something triggers a new flare, this is consistent with this trial and the holiday experiences, none of which have left me symptom free for more than 3 days.

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 as I have put a lot of effort into my diet and exercise to try and maintain bone density.
6. My specialist has also said that he wants me to consider going onto Azathioprine or Methotrexate and that I need to decide which set of side effects I fancy having the most L.  Neither looks very inviting. 
7. Feedback from the Stills Message Board seems to favour Methotrexate but I am keen to avoid either, I just don’t know what to do to achieve it, but I am trying as many lifestyle, and diet options as possible.
8. I have just got back from 3 nights away in Scotland.  Something strange happens on holidays I always seem to feel much better, in fact twice on holiday I have been completely symptom free for 2 days!.  This has had me thinking that there is some miracle cure waiting to be found and I have thought through the options.
   1. Less stress; I don’t think this is the reason, holidays are actually quite stressful, lots of time cramped in the car and caravan with 4 squabbling kids etc.
   2. Different diet; I thought this was a factor as on one holiday by chance I had a dairy free diet, but I have tested that since and it didn’t have a huge effect, certainly not significant enough to account for the variation I see in symptoms
   3. More exercise; when we are on holiday we walk a lot; of course I only go on holiday when I am feeling pretty good in the first place.  I think there is something in this, the continued low intensity exercise does seem to help, and I have noticed this at home as well.  The problem seems to be when I stop even for a day symptoms spring back and then it takes a while to build up the exercise levels again.  I am talking about 3 hours of walking a day here, that’s a lot of exercise! When my symptoms spring back 10 minutes is too much!  When I am, flaring getting down the stairs is way to much.
   4. I eat more, because I exercise more I allow myself to eat more snacks, mainly in the form of fruit or dried fruit bars.  It’s possible that there is something to investigate here.
   5. Weather; we have been pretty lucky this year in that we have had really good weather, very sunny and not too humid.  I think there is something in this as well, partly mental and partly physical.  Also good weather tends to encourage exercise, so it reinforces the point above
   6. No work on the computer; I hope this isn’t a factor, (because its my job), but its possible that the sitting around for a lot of the day is a factor.  I use RSI guard on my PC that forces me to keep taking breaks and this does seem to help.
   7. I sleep better, I almost always take sleeping tablets on holiday as the caravans are so hot and the beds uncomfy etc, so I get a very good nights sleep.  I think there is something in this as well.  When I feel really bad I do find that taking sleeping tablets for a couple of days helps.
9. Anyway I am back from holiday and my symptoms are back again, (I have also been under more pressure than usual at work for a few days).  Wrists, Ankles and Knees are the worst.  I have a sore throat again, headaches every day and difficulty concentrating.  I am hoping that some of this is Steroid withdrawal. 
10. I am going to try the sleeping pill trick again for 2 nights, and try and exercise but its difficult.  However I have learned that the symptom pattern is very variable and it may be at the end of the day that I never find a pattern of external events that cause a trigger.  I am just not at the point where I give in to it being something I am unable to influence.

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 time, it was much worse, and they said I had strep throat.  It took about 3-4 weeks to get a diagnosis, of Stills and then they put me on the steroids.  Within 2 days I was out of hospital although it was a few weeks before I was well again.

Last year and early this year I had 2 flares that were not triggered by a sore throat, interestingly they did not have the high temperatures either, just the pain and fatigue and loss of concentration.

However the last of these flares has taken a very long time to clear, its been over 6 months now and I am still on 20MG of steroids, and still in a bit of pain.  Also every time I get the slightest bit of a sore throat, or cold or cough I have a mini-flare again.

There is more detail in by blog.  I have a category specifically on Stills.

http://radio.weblogs.com/0135175/categories/aosd/

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.

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 unable to open my mouth, twist round or bend my knee.  The pain lasts between 3 and 30 hours, comes on in 15 minutes and at the end goes within about an hour.

I am currently working 3 days a week 4 days a week, last week there was one day where I could not get through the full 4 hours, pain and fatigue and loss of concentration, but I made it up the following day.

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 and if you have any questions about the content please check with your specialist as I may have got some of the definitions wrong!

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 well, at least as a template or as an example to stimulate ideas.  I have found the charts very useful to review with my doctors as we have something concrete to discuss, rather than just subjective, I feel grotty.