Our Thursday patient discussion on 1 October 2026 covered several subjects raised by people attending the session, including brain fog and fatigue, food intolerance, heart palpitations and anxiety.
One subject generated particularly strong discussion: keeping a health diary. Four of the five people taking part described keeping quite detailed records of their health, using methods including calendars, colour coding and notebooks.
As always, these Thursday Sessions are informal discussions between people living with aspergillosis. They give patients an opportunity to compare experiences and raise subjects that matter to them. The comments below should not be interpreted as medical advice, but we have added some background information where it may be helpful.
Brain fog and fatigue
Brain fog and fatigue were among the symptoms discussed during the session, including the experience of these symptoms while taking systemic corticosteroids such as methylprednisolone.
People living with aspergillosis can find fatigue particularly difficult because there may be several possible contributors. The underlying lung condition, infection, poor sleep, medicines, corticosteroid treatment and recovery from an exacerbation can all potentially play a part.
One of the difficulties is therefore working out whether a change represents the illness itself, treatment, or something unrelated.
People also discussed how long recovery can take following a flare. Even when the most obvious symptoms have improved, energy levels and the ability to work or carry out normal activities may take considerably longer to return.
Food intolerance
Food intolerance and the possibility that particular foods might make symptoms worse also came up during the discussion.
When symptoms naturally fluctuate from day to day, it can be difficult to know whether a particular food really caused a change or whether the two things simply happened at the same time.
Looking for a repeated pattern can be more useful than drawing conclusions from a single episode. This is one situation where keeping a record may help.
However, repeatedly removing foods from the diet without good evidence can result in an unnecessarily restricted diet. Significant or persistent suspected food intolerance is worth discussing with an appropriate healthcare professional.
Heart palpitations
Heart palpitations were another symptom mentioned during the session.
There are many possible causes of palpitations, including medicines, infection, dehydration, anxiety and heart rhythm problems. They should therefore not automatically be attributed to aspergillosis.
New, persistent or concerning palpitations should be discussed with a healthcare professional, particularly if they occur with symptoms such as chest pain, fainting or significant breathlessness.
Anxiety and calming techniques
Anxiety was another important part of the conversation.
Living with a fluctuating chronic illness can create considerable uncertainty. A new symptom, a change in breathing or waiting to see whether treatment is working can understandably cause anxiety.
People attending the session were interested in simple calming and relaxation techniques that might help when anxiety becomes overwhelming. We will return to this subject in a future session and provide some practical resources.
Relaxation techniques can help reduce the physical response to anxiety, but they should not be used to dismiss or ignore a new symptom that needs medical assessment.
Health diaries – strong support from the group
One of the most interesting parts of the 1 October discussion was how many people were already keeping detailed records of their health.
Four of the five people taking part described using some form of detailed health diary.
These were not necessarily simple lists of symptoms. People described using daily records, calendars, colour coding and an A5 notebook to keep track of what had happened and when.
Several participants clearly regarded these records as an important way of understanding their health over time.
Are health diaries actually worth the effort?
The discussion prompted us to look at what research tells us about health diaries.
There is good reason to record important changes when they happen. Human memory is not particularly good at reconstructing fluctuating symptoms over several weeks or months, and contemporary recording can make patterns easier to identify.
Research in respiratory diseases such as asthma and COPD has shown that symptom diaries can detect changes over time and may show deterioration around an exacerbation.
However, the evidence does not show that everyone with a chronic respiratory condition benefits from completing a detailed diary every day.
Daily recording can also become burdensome, and adherence tends to fall when people are asked to record large amounts of information for long periods.
The experience of our Thursday group therefore suggests a useful middle ground:
A health diary may be most valuable when it helps answer a question – what changed, when did it change, what else happened at the same time, and did it get better again?
Why might this be particularly useful in aspergillosis?
Aspergillosis can involve several things changing at once.
Someone might experience increased breathlessness or fatigue, develop different sputum, start antibiotics, change a steroid dose, alter an antifungal treatment and then gradually recover.
Several weeks later, remembering the exact sequence can be difficult.
A simple record might show:
Sputum changed on Monday → breathlessness increased Tuesday → antibiotics started Wednesday → temperature settled Friday → fatigue took another ten days to improve.
Similarly, a diary might help establish whether a new symptom repeatedly appears following a change in medication, or whether good and bad periods follow a recognisable pattern.
You don’t have to record everything
The discussion showed that some patients find quite detailed recording extremely useful. That does not mean everyone needs to do the same.
For someone wanting to try a simpler approach, it may be enough to record:
- whether it was a good, average or bad day;
- anything important that changed;
- significant changes in cough, sputum, breathlessness, fatigue or other symptoms;
- starting, stopping or changing a medicine;
- an infection, exacerbation or hospital visit; and
- anything else that may help explain the change.
Before a clinic appointment, the diary can then be used to identify the important patterns rather than presenting months of individual daily entries.
Don’t let monitoring become another burden
There is also a potential downside to tracking health too closely.
For some people, repeatedly checking every symptom can increase anxiety or make illness occupy even more of everyday life.
If keeping a diary becomes stressful, takes substantial time or produces information that is never useful, simplifying it – or stopping – may be entirely reasonable.
A health diary should work for you; you should not feel that you have to work for the diary.
What we took from this week’s discussion
The 1 October Thursday Session ranged across brain fog, fatigue, food intolerance, palpitations and anxiety. But one of the clearest messages came from the patients themselves.
Four out of five people taking part had developed their own detailed way of recording changes in their health.
The research does not tell us that everybody with aspergillosis should keep a daily diary. What the discussion highlighted, however, is how valuable some people with a complicated, fluctuating illness find having a record that helps them make sense of what has happened between appointments.
Further reading
- NICE evidence review: monitoring asthma control
- Daily symptom diaries and exacerbations in COPD
- Self-monitoring and self-management in chronic disease
Thursday Sessions are informal patient discussions organised by the National Aspergillosis Centre CARES team. Experiences shared during the meetings are personal experiences and should not be taken as medical advice. New or worsening symptoms should be discussed with an appropriate healthcare professional.
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