I've had a really bad couple of weeks with my autoimmune illness. My pain levels have increased and other symptoms have become more noticeable and bothersome. An increase in autoimmune disease activity is often referred to by AI warriors as a 'flare'.
Flares can last anything from a few days to several months. During a flare an AI warrior may experience a return of symptoms and/or an increase in the severity of symptoms. New symptoms can also materialise during a flare. A flare is often marked by an ongoing fever which is not due to an infection. Other common symptoms include increased painful and swollen joints, fatigue, rashes and sores/ulcers in the mouth or nose.
During a flare I have a constant low-grade fever. Sweat runs from every pore and I cannot cool down no matter what I try. Some things make the situation worse - like taking a cold shower or applying wet towels. My joints swell and hurt more than usual, my rashes get worse and ulcers appear on any part of me that is damp and warm (nose, mouth, ears etc). Tonight I have two ulcers on my tongue and one on the inside of my cheek. My kidney pain escalates during a flare too. Besides the pain, the symptom that affects me most is fatigue. I can sleep for hours at a time, wake up for an hour and then fall asleep again. If I have to be awake, I really struggle to make it through the day.
I am unsure what has caused my disease to flare these last two weeks but I suspect that I may have picked up a bug during one of the hospital appointments I attended recently. In a nutshell, anything that causes stress on the body and its immune system has the potential to trigger a flare. However, everyone's lupus is individual to them and we all react to stress differently. It is important to identify which stressors might bring on flares so that we can learn to avoid situations that may result in a flare. Common flare triggers include: sun exposure, emotional stress, injury or surgery, infection, viruses, over-exertion and changes to medication. Pregnancy is also a stressor and Pregnant AI warriors must take special care throughout their pregnancy.
One symptom that is not often mentioned is the effect a flare has on my emotional state. Over time the physical impacts of a flare take a toll on my mood and my ability to cope with my illness. I am almost certainly in a low or depressed mood and tears will come easily because I am unable to look after myself or occupy myself with things that I normally enjoy. I will often retreat into myself, minimising contact with friends and family. I don't want them to see the lupus troll I have turned into! If you are unlucky enough to be around me, I might lash out in frustration - not physically but verbally. A flare is a very difficult thing to cope with mentally and beyond the usual daily dose of antidepressants (that many of us AI warriors take) the low moods are generally untreated.
If you are looking after somebody with an AI illness, it is important to be especially sensitive during periods of flare. They are low points in the progress of the disease and it can be difficult to see the bigger picture, that the disease is likely to go into remission again. Things that are said during a flare may be an expression of anger and frustration that do not necessarily reflect how the AI warrior truly feels.
Equally, it is important for the AI warrior to recognise a flare and its potential trigger so that they can learn to identify and avoid similar stressors in the future. Don't fight a flare, let it take its course....rest as much as you can and gratefully accept help when it is offered. Try to remember that a flare represents the here and now and not forever.
It is also important to remember that flares can trigger new symptoms. If this occurs, you need to contact your care team (GP, rheumatologist, neurologist etc.) to discuss the progress of your disease and update your care plan and medication.
Finally, flares can result in life-threatening emergency situations. Do not hesitate to seek medical help during a flare if this is required.
Flares can last anything from a few days to several months. During a flare an AI warrior may experience a return of symptoms and/or an increase in the severity of symptoms. New symptoms can also materialise during a flare. A flare is often marked by an ongoing fever which is not due to an infection. Other common symptoms include increased painful and swollen joints, fatigue, rashes and sores/ulcers in the mouth or nose.
During a flare I have a constant low-grade fever. Sweat runs from every pore and I cannot cool down no matter what I try. Some things make the situation worse - like taking a cold shower or applying wet towels. My joints swell and hurt more than usual, my rashes get worse and ulcers appear on any part of me that is damp and warm (nose, mouth, ears etc). Tonight I have two ulcers on my tongue and one on the inside of my cheek. My kidney pain escalates during a flare too. Besides the pain, the symptom that affects me most is fatigue. I can sleep for hours at a time, wake up for an hour and then fall asleep again. If I have to be awake, I really struggle to make it through the day.
I am unsure what has caused my disease to flare these last two weeks but I suspect that I may have picked up a bug during one of the hospital appointments I attended recently. In a nutshell, anything that causes stress on the body and its immune system has the potential to trigger a flare. However, everyone's lupus is individual to them and we all react to stress differently. It is important to identify which stressors might bring on flares so that we can learn to avoid situations that may result in a flare. Common flare triggers include: sun exposure, emotional stress, injury or surgery, infection, viruses, over-exertion and changes to medication. Pregnancy is also a stressor and Pregnant AI warriors must take special care throughout their pregnancy.
One symptom that is not often mentioned is the effect a flare has on my emotional state. Over time the physical impacts of a flare take a toll on my mood and my ability to cope with my illness. I am almost certainly in a low or depressed mood and tears will come easily because I am unable to look after myself or occupy myself with things that I normally enjoy. I will often retreat into myself, minimising contact with friends and family. I don't want them to see the lupus troll I have turned into! If you are unlucky enough to be around me, I might lash out in frustration - not physically but verbally. A flare is a very difficult thing to cope with mentally and beyond the usual daily dose of antidepressants (that many of us AI warriors take) the low moods are generally untreated.
If you are looking after somebody with an AI illness, it is important to be especially sensitive during periods of flare. They are low points in the progress of the disease and it can be difficult to see the bigger picture, that the disease is likely to go into remission again. Things that are said during a flare may be an expression of anger and frustration that do not necessarily reflect how the AI warrior truly feels.
Equally, it is important for the AI warrior to recognise a flare and its potential trigger so that they can learn to identify and avoid similar stressors in the future. Don't fight a flare, let it take its course....rest as much as you can and gratefully accept help when it is offered. Try to remember that a flare represents the here and now and not forever.
It is also important to remember that flares can trigger new symptoms. If this occurs, you need to contact your care team (GP, rheumatologist, neurologist etc.) to discuss the progress of your disease and update your care plan and medication.
Finally, flares can result in life-threatening emergency situations. Do not hesitate to seek medical help during a flare if this is required.
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