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Ankylosing spondylitis

Ankylosing spondylitis symptom diary: how to keep one that you will actually read back

A symptom diary fails when it asks too much. The structure that keeps an AS diary short, and how to read it back months later.

A symptom diary is only useful if two things are true: you keep filling it in, and you can read it back later. Most diaries fail the first test by asking too much, and the second by recording prose that nobody can scan.

What an AS diary is for

Three things, in order of how often they come up. First, answering "how have you been?" at a review with something better than recall. Second, noticing what tends to sit alongside worse stretches in your own history — poor sleep, a heavy week, a missed dose. Third, keeping a truthful record of flares: when they started, how long they lasted, what you did.

It is not for finding the cause of your AS. A diary can show that two things tended to occur together in your record; it cannot show that one caused the other. See how to track pain patterns.

The structure

Numbers first, words second. Numbers can be charted and compared; words cannot. A workable daily entry looks like this:

A daily AS diary entry. Everything in the first five rows is a single number or a tick.
FieldFormatExample
Morning stiffnessDuration band30–60 min
Spinal pain0–104
Other joints0–10 + where2, left knee
Fatigue0–106
SleepHours + disturbed?6 h, woke twice
Flare?Yes / no, start date if newNo
MedicationAs taken, changes onlyMissed evening dose
ActivityOne lineMobility 20 min, scaled down
NoteOne line, only if something happenedLong drive yesterday

Record stiffness and pain separately. They behave differently and a clinician will ask about them differently. Fatigue also gets its own line: it has its own BASDAI question because research at Bath identified it as a major component of AS, and the index was developed with input from people with AS (Garrett et al., 1994).

Paper or app

Paper is fast and private, and the printable AS symptom diary template is laid out for it. Its weakness is the read-back: a month of pages is hard to scan for a trend, and impossible to chart.

An app trades a little friction at entry for a great deal at review. The signals become charts, flares become shaded ranges, and a period can be summarised for an appointment. HAVYT’s AS Mode is built around exactly this diary structure, with training, medication and connected health data recorded alongside rather than in a separate place.

Reading it back

Once a month, or before an appointment, look at the whole record rather than the last few days. Ask three questions of it:

  1. What is the direction? Are stiffness and pain drifting up, down or flat over the period?
  2. Where are the worst stretches, and how long did they last?
  3. What was different in the days before those stretches — sleep, training, medication, illness, travel?

The third question is the one to be careful with. An association in your own record is worth raising with your rheumatology team; it is not a finding, and it should not change your treatment on its own.

Sources

  1. Ankylosing spondylitis: overviewNHS
  2. Garrett S, Jenkinson T, Kennedy LG, Whitelock H, Gaisford P, Calin A. A new approach to defining disease status in ankylosing spondylitis: the Bath Ankylosing Spondylitis Disease Activity Index. J Rheumatol 1994;21(12):2286–91Journal of Rheumatology (PubMed), 1994
  3. The Bath Indices: outcome measures for use with ankylosing spondylitis patients (BASMI, BASFI, BASDAI, BAS-G)National Axial Spondyloarthritis Society (NASS)
  4. Leverment S, Clarke E, Wadeley A, Sengupta R. Prevalence and factors associated with disturbed sleep in patients with ankylosing spondylitis and non-radiographic axial spondyloarthritis: a systematic review. Rheumatol Int 2017;37:257–71Rheumatology International (PubMed), 2017

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