Keeping a Symptom and Activity Diary
Living with Functional Neurological Disorder (FND) can sometimes make it difficult to understand why symptoms suddenly become worse. You may have a good day followed by a difficult one, or find that symptoms appear or increase without an obvious reason.
One useful tool can be keeping a symptom and activity diary.
A diary isn't about finding one single cause for every symptom. Many different things can influence FND symptoms, and the same activity may affect you differently on different days. Instead, the aim is to build up a picture of what you have been doing, how much your body and brain have been dealing with, and what happens afterwards.
Over time, this can help you recognise patterns and make it easier to plan your days.
What should you put in your diary?
Your diary can be as simple or detailed as you find useful. You don't need to record every minute of your day.
You could record:
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Your main symptoms and how severe they were
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How well you slept
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Activities you took part in
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How physically demanding those activities were
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How much concentration or thinking they required
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Noisy or busy environments
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Social activities
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Travel
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Time spent using screens
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Stressful or particularly demanding situations
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Periods of rest
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Relaxing or enjoyable activities
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When symptoms started to increase
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How you felt later that day and the following day
It can also help to record what went well. If you discover that a particular way of doing something allows you to take part without a significant increase in symptoms, that is valuable information too.
Think about the impact of activities
Not all activities place the same demands on you.
It can help to think about activities in terms of the physical, cognitive, emotional, and sensory load they create.
High-impact activities
These are activities that may require a lot from you.
For example:
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Going shopping in a busy supermarket
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Attending appointments
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Long journeys
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Going to crowded places
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Housework or DIY
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Exercise or physical activity
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Spending a long time standing or walking
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Dealing with complicated tasks
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Working for extended periods
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Social events
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Situations that require a lot of concentration
A high-impact activity isn't necessarily a "bad" activity. Many important or enjoyable things can still place a significant demand on you.
The useful question is:
"How much did this activity cost me, and what happened afterwards?"
Sensory and environmental load
Sometimes the difficulty isn't the physical activity itself.
Your brain may also be processing a large amount of sensory information.
Think about environments involving:
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Loud or continuous noise
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Bright or flashing lights
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Crowds
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Lots of conversations happening at once
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Strong smells
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Busy visual environments
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Constant notifications or interruptions
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Driving or travelling
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Large amounts of information
For example, spending an hour sitting in a busy shopping centre might not seem physically demanding. However, the amount of noise, movement, conversation and visual information your brain is processing can still make it a high-impact activity for you.
Don't forget the quieter activities
Your diary should also record restful and lower-impact activities.
These might include:
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Sitting somewhere quiet
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Reading
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Listening to calm music
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Watching television
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Spending time with a pet
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Gentle hobbies
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Having a bath or shower
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Relaxation exercises
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Spending time somewhere familiar and comfortable
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Taking a quiet break after a demanding activity
Not everyone will find the above restful, but this is a good guide.
These activities aren't necessarily about doing nothing.
They are about giving yourself an opportunity to reduce the amount of physical, mental and sensory demand you are experiencing.
You may eventually notice that deliberately including these periods helps you manage the activities that matter to you.
Look backwards as well as forwards
One of the most useful parts of a diary is looking at what happened before your symptoms increased.
It can be tempting to look only at what happened immediately before a symptom.
However, the activity that appears relevant may have happened 24 or even 48 hours earlier.
For example:
Monday:
You attend a busy appointment, travel across town and spend the evening doing household jobs.
Tuesday:
You feel reasonably well.
Wednesday:
Your symptoms increase significantly.
If you only look at Wednesday, it might seem as though there is no obvious explanation.
Looking back over the previous 24–48 hours may show that your body and brain had been dealing with considerably more demand than usual.
This doesn't mean the earlier activities definitely caused Wednesday's symptoms. Instead, it gives you something to consider as you look for patterns.
Ask yourself some simple questions
When symptoms increase, look back through your diary and ask:
What was I doing yesterday?
What was I doing the day before?
Was I somewhere particularly noisy or busy?
Did I have a lot of conversations or social interaction?
Did I have to concentrate for a long period?
Did I travel?
Did I do more physical activity than usual?
Did I have enough opportunities to rest?
Did I have several demanding activities close together?
How well did I sleep?
Was there anything unusual happening?
You may begin to notice that it isn't always one particular activity that matters. Sometimes it is the combination of several demands without enough recovery time between them.
Look for patterns rather than single events
Try not to become too focused on finding a definite cause every time you experience a symptom.
Instead, look for patterns over several days or weeks.
You might notice something like:
"When I have a busy day followed by another busy day, my symptoms often increase on the second or third day."
Or:
"I seem to manage shopping better when I go at a quieter time and don't schedule anything demanding afterwards."
Or:
"If I have a poor night's sleep, I seem to have less capacity for noise and concentration the following day."
These observations can be much more useful than trying to identify one specific trigger.
Your diary is there to help you understand your own patterns.
Use what you learn to plan ahead
Once you start recognising patterns, your diary can become more than a record of what has already happened.
It can become a planning tool.
Look at your calendar and identify the things you know you need or want to do.
For example, you might have:
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A medical appointment on Monday
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Shopping on Tuesday
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A family event on Wednesday
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Housework that needs doing
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Work or study commitments
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A social activity you want to attend
Instead of simply putting all of these activities into the calendar, think about the overall load.
If Monday is going to be particularly demanding, could Tuesday contain something quieter?
If you know Wednesday involves a busy social event, could you avoid putting another high-impact activity immediately before or afterwards?
Could some jobs be moved to another day?
Could a demanding task be followed by something restful?
Think about your week as a whole
It can be useful to stop thinking about activities in isolation.
For example:
High impact → High impact → High impact
may leave very little opportunity for recovery.
Whereas:
High impact → Restful → Lower impact → High impact
may give you more opportunity to recover between demanding activities.
This doesn't mean you have to avoid everything that is difficult.
The aim is to find ways of spreading the load.
Plan for the things you cannot avoid
Of course, life doesn't always allow us to choose when things happen.
You may have an appointment that cannot be moved, a work commitment, a family responsibility or something else that simply has to be done.
In those situations, your diary can help you plan around it.
For example:
Before:
Allow some quieter time if possible.
During:
Think about whether you can reduce unnecessary sensory or physical demands.
After:
Avoid immediately following the activity with another demanding task if you can.
This isn't about "earning" rest because you have done something difficult.
Rest is part of managing your overall load.
Make room for things you enjoy
It's also important that your diary doesn't become a list of everything you cannot do.
The purpose isn't to remove enjoyable activities from your life.
If seeing friends, going to a favourite place, playing a game, working on a hobby or attending an event is important to you, record it.
You can then use what you learn to ask:
"How can I make this activity work better for me?"
Perhaps you need to go for a shorter time.
Perhaps you need somewhere quiet to take a break.
Perhaps travelling at a different time makes the journey easier.
Perhaps you need a quieter day afterwards.
Small changes can sometimes make it possible to continue doing things that are important to you.
Your diary is a learning tool
There is no perfect way to keep a symptom diary.
You might use a notebook, a calendar, a spreadsheet, an app or simply make a few notes on your phone.
The important thing is that it is simple enough that you will actually use it.
After a few weeks, look back rather than just looking at individual days.
Ask yourself:
What seems to increase my overall load?
What helps me recover?
Which activities can I combine?
Which activities need more space around them?
What can I change when I know something demanding is coming up?
You may gradually start to see that managing FND isn't necessarily about avoiding activity. It can be about understanding your capacity, recognising patterns and giving yourself enough space to manage the things that matter to you.
And remember: a diary can help you identify patterns, but it cannot tell you with certainty what caused a particular symptom. Symptoms can fluctuate for many reasons, and you should always discuss new, severe, or concerning symptoms with an appropriate healthcare professional.
We have made an example diary for the week that allows plenty of room to record and reflect. You are welcome to use the one below or make your own. We have seen many different formats, such as a more condensed version with keys and different colours.