My Second Blog Post – So what is Adult Onset Stills Disease?

This is the second in my series of posts looking back on my first 10 blog posts.

My second post was also incredibly short, quoting the Adult Onset Still’s Disease website’s description of Still’s disease:

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.

This description no longer exists and the link to the original web page no longer works, but hunting around on the web site I found the updated description:

Patients with Still’s disease usually present with systemic (body wide) symptoms. Extreme fatigue can accompany waves of high fevers that rise to 104 degrees F (41 degrees C) or even higher and rapidly return to normal levels or below. A faint salmon-colored skin rash characteristically comes and goes and usually does not itch (picture of the Still’s rash). There is commonly swelling of the lymph glands, enlargement of the spleen and liver, and sore throat. Some patients develop inflammation of the lungs (pleuritis) or around the heart (pericarditis) with occasional fluid accumulation around the lungs (pleural effusion) or heart (pericardial effusion). Although the arthritis may initially be overlooked because of the impressive nature of the systemic symptoms, everyone with Still’s disease eventually develops joint pain and swelling. This usually involves many joints (polyarticular arthritis). Any joint can be affected, although there are preferential patterns of joint involvement in Still’s disease.

Neither description is very helpful for long term sufferers though because they place the emphasis on the acute symptoms and not the chronic symptoms that many people develop. 

This 11 year old post is interesting though because it provides an example of how fragile links on the web are and how significantly the content has changed in such a short time.  For example the earlier quote “After many years, the disease cripples vital organs such as the heart and lungs” is hardly ever mentioned now as an issue.

This post is also significant because it’s one of the most commented on, which reflects the fact that back in 2004 there was almost no information about AOSD on the web and so people searching for it often found me.

Lets finish this off with my personal definition of Still’s disease:

Still’s disease is a very rare form of arthritis that initially presents with high cyclic fevers, extreme fatigue, brain fog, sore throat, non-itchy rash and widespread, muscle, joint and tendon pain.  These acute symptoms respond well to steroids but over time the condition evolves into a chronic phase which still involves these acute flares every few months but is dominated by frequent, highly variable, fatigue, with more localised pain and brain fog.  It’s the unpredictability, never knowing how I will be from one day to the next, that is the most difficult aspect of the disease to cope with.

I’m writing this post in Caffe Nero as usual, I’ve already been out for a long walk along the beach and the dunes (pictured) to try and get some relief from the rash on my legs which is now very warm to the touch. There was quite a chill in the air today, but my legs kept me warm..