What is Still’s Disease?
How will Adult Onset Still’s Disease Affect Me?
Still’s Disease is not a paint-by-numbers illness. In fact, one person’s experience may be significantly different from another’s in terms of symptoms and intensity. With that said, there are almost certainly a set of symptoms that all sufferers of Still’s Disease will share.
When describing Adult Onset Still’s Disease symptoms, it is useful to look at the initial acute onset of the disease and the long term chronic phase of the illness.
The Acute Phase
The acute phase describes the severe, relatively short lived set of symptoms that ususally appear at the onset of the disease. This phase lasts from two to four weeks, but may extend as long as a couple of months.
Sore Throat
The illness usually starts with a sore throat that is similar in sensation and intensity to an average winter cold. From this point, almost all patients will experience several symptoms including severe joint and muscle pain, rashes and a high fever.
Joint Pain
Inflammation and pain during the acute phase may strike any joint in the body, but is most common in the knees, ankles and wrists. The pain is often extreme: For example, an affected knee would probably prevent you walking, moving the joint through its range of motion or stretching in any way. The affected joint is often visibly swollen and warm to touch. The nature of the illness is that multiple joints are often affected at the same time (your doctor might describe this to you as being poly-articular).
The inflammation process is very complex - in fact, your doctor might even have problems explaining it to you in detail! With that said, you don’t really need to have an in-depth knowledge of the inflammation process to understand Adult Onset Still’s Disease… just like you don’t need to know how a car works in order to drive to work, it isn’t critical to fully comprehend the science behind the inflammation process.
This video introduces the inflammtion process to patients diagnosed with Rheumatoid Arthritis. Although this video is not specific to Still’s Disease, much of the information contained can be applied to Still’s Disease:
Rash
The next most common symptom is a salmon coloured ash that moves across the body. The rash is usually splotchy, slightly raised and fairly localized. The most peculiar thing about the rash is that it often appears without warning in a varitety of positions - one morning on your thighs… that afternoon on the upper arm… an hour later on your chest. The rash then often disappears as quickly as it arises.
Some people that have Adult Onset Still’s Disease find that there is not a discernable sensation that accompanies the rash. For others, the rash can be unbearably itchy or can feel like a mild sunburn. Creams, ointments and cold packs do not usually bring any relief.
Fever
Sufferers of Adult Onset Still’s Disease almost always experience a fever that often spikes to over 40 degrees centigrade.
The fever waxes and wanes throughout the day, and is usually the highest in the late afternoon or evening. In the morning and throughout the day, a normal (36-37 degree) temperature is normally recorded by the patient.
Another common experience for Still’s Disease sufferers is the incidence of night sweats that accompany the fevers. These sweating episodes are normally drenching - completely saturating your bedding. During these sweats, dehydration becomes a real risk.
Internal Swelling
Although less common, sufferers may experience swelling of the spleen, lymph nodes and lining around the heart (pericarditis). Depending on the severity of the swelling, this may lead to pain in the chest and abdomen and may require hospitalisation.
The Chronic Phase
Some people that are diagnosed with Adult Onset Still’s Disease only ever experience one acute episode. These cases are the minority, however. For the majority of AOSD sufferers, the illness moves into a long term chronic phase.
The rash, internal swelling and fever components of the illness normally subside during this phase of the illness. Joint pain due to the rheumatic component of the disease is often present throughout the chronic phase of the illness. Although not usually as severe as the initial onset, chronic inflammation of the joints often leads to pain, discomfort and disability.
It is of the utmost importance that you have a carefully considered plan to manage the chronic phase of the illness. I understand that you may be reluctant to start a long term medication regime, but it is critical that you don’t try and “go it alone” while the disease is in the chronic phase.
The most severe complication of chronic Adult Onset Still’s Disease is without a doubt joint destruction.
As the body continues to attack the synovial fluid around the joints, the cartilage, tendons and ligaments that form the joint can break down and cause permanent damage. Once the damage has been done, it is irreversible and can only be assisted by surgery.
This is not a path that you want to follow.
There are other untold effects of suffering with Adult Onset Still’s Disease. Living with pain and limitations on your lifestyle is frustrating and can seem to take over your life. Many sufferers of Adult Onset Still’s Disease develop other conditions, and the onset of depression is common. This is often caused by the pressure not only on the patient, but the family and support network of the person living with Still’s Disease.
Flare Ups
Adult Onset Still’s Disease seems to be a cyclical illness, and acute episodes, or “flare ups” occur with most sufferers. These episodes can be as severe as the initial onset of the illness, but are usually shorter in duration. [...next]
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