Steve Richards: AOSD

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

Sat, 07 Aug 2004 15:25:41 GMT

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/

AOSD Update

Tue, 27 Jul 2004 12:59:47 GMT

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:

Very quickly, as soon as I noticed that I was starting with a cold, I felt an increase in muscle and joint pain
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
The antibiotics got to work quickly and my muscle and joint pain subsided in perfect step with my chest infection
However my fatigue levels did not subside, in fact they increased
After a week the chest infection was gone, but the muscle and joint pain started to come back
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.
I went back to the Doctor and he suggested going back to 20mg of Steroids rather than 10mg.
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:

I can only concentrate for about 30 minutes at a time
I have to take a break every 30 minutes, or do something different
I make many mistakes, and have to do a lot of rework
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.

AOSD Update

Tue, 29 Jun 2004 21:20:04 GMT

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 symptoms log

Sun, 30 May 2004 16:40:35 GMT

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.

AOSD and work

Sun, 30 May 2004 13:26:35 GMT

One of the responses to my post on the Stills Message Board was about AOSD and Work, and the difficulty some people have with communicating with their employers about the disease, and in fact with some health industry workers. I thought this was interesting because it’s similar to my experience so I thought I would write a bit about it.

First off you need to be able to explain why Still's affects your ability to work. At first I just tried to describe the pain, but in my case the pain is really not that extreme and others do manage to work with that level of pain. I am a pretty motivated guy normally so that got me thinking a bit more about why I struggle to work when I am in a flare and why even when things have stabilized I don't have the stamina I used to have. This is what I came up with:

Although I suffer from Joint, Muscle and Tendon pain these in themselves I can put up with and generally work through provided my arms and hands are not too bad, (as I spend a lot of time typing)
The main things that affect my ability to work are, the fatigue, difficulty concentrating and mental fog that seriously affects my mental acuity. These things don't stop me dead, for example I am still able to read, have a discussion on the phone, type a couple of emails, but they limit the amount of time I can spend working, the intensity and the quality of my work
An associated problem is the depression, the combination of the pain, the mental affects, the lack of sleep, the fevers, the itching etc don't make me that positive and the slightest issues seem to make me anxious
Finally I have noticed that hard work tends to increase the likelihood of a flare and affects the duration of a flare, so my Doctor tends to encourage me to rest

However I have found that home working makes this all a lot more bearable for the following reasons:

It's much easier to take a real break when I get tired, because there are plenty of other things to do
I am less likely to get drawn into working for too long, or to get sucked into solving problems that are not my responsibility
I am able to work an extended day, lowering the intensity of my activity
I don't have to worry about my ability to drive safely
I have more flexibility in what I do at particular times, for example if my arms are hurting I can sit in a comfy chair and do some reading, or go for a walk or a swim

Finally how to help people understand:

I have kept extensive records, which have helped me understand much better! In particular I found keeping records of things like fatigue and mental acuity particularly useful
It's key to think not in terms of symptoms in their own right but how these symptoms affect your ability to do things
Its key to think about how you feel, not just about the things that the doctors can measure
There is very little available to help Still's patients but one of the most useful things I have found is the wealth of material to help sufferers of Fibromyalgia. This is particularly helpful because this disease has similar pain, fatigue and mental affects to AOSD so its impact on work is similar. Search the web and you will find loads of advice on disability, coping with fatigue etc. You can start here:

http://www.fmnetnews.com/pages/Disability.htm

http://fmaware.org/patient/disability.htm

http://www.nfra.net/fibromyalgia_disability.htm

Document all about AOSD

Sun, 30 May 2004 00:00:56 GMT

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!

AOSD Flare Status update

Sat, 29 May 2004 23:57:37 GMT

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 posted my 'end of flare report' here

Why home working?

Thu, 04 Mar 2004 15:50:56 GMT

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

Visit from the occupational therapist

Fri, 27 Feb 2004 21:50:02 GMT

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.

The importance of keeping records

Fri, 27 Feb 2004 08:56:56 GMT

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:

A rash. Take photo's, normally the rash doesn't itch and its clearer after a hot bath.
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.
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!
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!

Me and AOSD

Fri, 27 Feb 2004 08:45:04 GMT

Approximately 4 years ago I was working in London, and had a sore throat and was noticing some annoying muscle stiffness and pain, I boarded the train to return to Preston and on arrival found I could no longer stand. By the next morning I was unable to get out of bed due to extreme muscle and joint pain. The condition was not diagnosed at this time and no treatments were effective, although home care was possible. After about 6 weeks I was able to return to work. Very minor reoccurrence of symptoms were noticed occasionally, but they had no affect on my lifecycle or ability to work.

After about 18 months I had another flare-up, resulting in approximately 4 weeks off work, again with home care being given. I returned to work however this time I did notice some muscle pain every week or so, however this was never correlated with stress or workload, and had no affect on my lifecycle or ability to work.

Last year I had a major flare-up, causing almost complete disability, i.e. unable to move unaided, feed myself etc. I was admitted to hospital for care and whilst there had extensive tests for 2 weeks, no diagnosis was made but my condition stabilised sufficiently to allow me to return home. Within days the condition flared again and I was re-admitted to hospital for further care. During this period as a result of records I had kept of his pattern of pain and temperature the diagnosis of Still’s was made with confidence.

A treatment plan was created and within a week I was able to leave hospital and 4 weeks later was able to return to work.

Following my return to work around April last year I have never been free of pain. I kept daily records of pain and stress levels. Even whilst continuing to take regular Steroids to suppress the symptoms I had one flare, and since coming off steroids two flares, the last one in January requiring re-establishment of the treatment and two weeks off work.

I approached my company about changing to a less stressful job and working from home, they have agreed in principle, so I am at home right now and decided to start this log.

Ok then what is AOSD?

Fri, 27 Feb 2004 08:39:00 GMT

The link takes you to the AOSD web site. Its a rare disease thats a bit like Arthritis, I started with it about 4 years ago and its been getting worse since then. Here's a little bit of background:

AOSD is an inflammatory condition that attacks internal organs, joints and other parts of the body. It can appear and disappear suddenly. In very severe cases, AOSD becomes chronic and extremely debilitating, causing terrible pain and stiffness. After many years, the disease cripples vital organs such as the heart and lungs.

Thats the bad news, I will tell you a bit about my experiences with AOSD soon, and then things will get a lot more positive!

Adult Onset Still Disease

Fri, 27 Feb 2004 08:31:11 GMT

I started this weblog, because I have AOSD. Most people won't know what it is because less than 1 in 100,000 people have it. But its important because its this disease thats resulted in me working from home, using a Tablet PC and changing my life in many ways. So I thought I would write about the experience, for other people who like me may be going through a life change, or suffering, working from home, or in fact using a Tablet. Finally as I am involved quite heavily in the IT industry I might have the odd useful observation about that as well.