Ankylosing spondylitis, part of what is now often called axial spondyloarthritis, is a condition of mornings and nights. Both happen when you are least able to take notes, and both are exactly what the appointment asks about.
This guide is general information about tracking symptoms and preparing for appointments, not medical advice. It does not tell you what your symptoms mean or what to do about them. Talk to your rheumatologist about your own care.
By the time you are in the room, three or six months have compressed into how your back feels that afternoon, which is usually the best it has felt all day. The way around that is not a better memory. It is a short daily record of the handful of things an AS appointment reliably asks about: stiffness, nights, where it hurts, flares, fatigue and function.
1. Morning stiffness, in minutes
"How long does it take you to loosen up in the morning?" is a standard question, and it is asked in minutes because minutes compare cleanly across visits. From memory you will recall the worst morning and this morning, and very little in between.
One number on waking is enough. Over a couple of months it turns into a real answer: "mostly about forty-five minutes, but over two hours on eight mornings, and those were the same fortnight." That is a shape your rheumatologist can work with. "It varies" is not.
2. Nights: did pain wake you, and when
Night pain and stiffness come up at almost every AS appointment, and nights are the hardest thing to report honestly, because you were half asleep for them. Two observations cover most of it:
- Did pain wake you, and roughly when. "Woke around 4am most nights this week" is a different record from "I sleep badly".
- What moving did. Whether getting up and walking around eased it or not is worth one line. Record what happened, not what you think it means.
Write it in the morning entry, next to the stiffness number, while the night is still fresh.
3. Where it hurts, and which side
"My back" is where most AS conversations start, and it loses the most information. The pattern often involves more than the lower back, and it can move between entries:
- Lower back and buttocks. Note the side. Buttock pain that is left one week and right the next is easy to lose when you only remember the latest episode.
- Neck, upper back and chest. Including the chest pain some people notice on a deep breath. Record where and when, not a diagnosis.
- Heels, soles and other joints. A painful heel first thing in the morning, a swollen knee or ankle. Name the place and the side.
This is where tapping a body map beats writing sentences, because the areas change between entries and re-describing them in words every time is what makes people stop tracking by week three.
4. Flares, with dates on them
A flare remembered as "a rough patch sometime in August" cannot be lined up against anything. A flare with a start date, an end date, the areas involved and one line on what it stopped you doing can be. Three dated flares across six months is a pattern. Three remembered flares are an impression, and impressions get discounted, including by you.
5. Fatigue, on ordinary days too
Fatigue is a large part of living with AS for many people and is easy to under-report, partly because it feels like complaining and partly because it is hard to reconstruct. Give it a number of its own on paper, or a line in the note, and record it on ordinary days too, not only bad ones. (Pain Journal has no separate fatigue scale; it goes in the entry's note.) Fatigue that stays high on days when back pain is low is a real observation, and it disappears if fatigue only gets written down during a flare.
6. Function: what it actually stopped
Function is the part clinicians act on and the part patients leave out. Putting on socks, turning your head to reverse the car, a full day at a desk, standing in a queue, sleeping through, picking something up off the floor. Write the date you stopped, or the date it started costing you something. "I have not been able to check my blind spot without turning my whole body since June" is dated, specific and hard to wave away.
7. Medication timing, not medication opinions
Record what you took and when, including missed doses and days late, plus what the following days looked like on the numbers you are already recording. Keep it to what happened. Whether something is working is a question for the appointment, and it is far easier to answer there when the dates are in front of both of you.
Bring a summary, not a notebook
Nobody is going to read months of entries during a short appointment. What works is a summary: the stiffness range, the night pattern, the areas most often involved, the flare dates, the pain averages and the function line. Detail underneath for when they ask.
How often to log
Once a day, in under a minute, is enough, and with AS the morning is the natural moment: stiffness, the night and where it hurts, all at once. Missing days does not ruin anything. A record is a sample, not an exam. The failure mode is not gaps, it is designing yourself a ten minute daily ritual in week one and abandoning it by week three.
Start today
You can do all of this on paper with our free printable pain diary, which already has the body map and the 0-10 scales laid out. When the daily writing gets tedious, Pain Journal records the same things in a few taps, including sleep and the areas on a 39-zone body map (left and right lower back, buttocks, upper back and soles each have their own zone, plus the neck and chest), and builds the summary for you, free for the last 7 days, with no account.
Next: how to track back pain for your doctor, or what to bring to the appointment.
Common questions
What should I track for ankylosing spondylitis?
Morning stiffness in minutes, whether pain woke you in the night and roughly when, which areas were involved
(lower back, buttocks, neck, chest, heels) and on which side, dated flares with a start and end, fatigue,
and what the condition stopped you doing. Medication timing is worth recording too, as dates rather than
opinions about what worked.
Why does my rheumatologist ask about night pain?
Night pain and stiffness are among the things a rheumatologist asks about in axial spondyloarthritis, and
they are hard to report accurately from memory. You do not need to interpret it. Note whether pain woke you,
roughly what time, and whether getting up and moving changed it.
Should I note which side my buttock or hip pain is on?
Yes, if you can. Buttock pain that switches sides from week to week is a pattern that is easy to lose when
you only remember the latest episode. One word per entry, left, right or both, is enough to show it.
Is an app better than a notebook for tracking ankylosing spondylitis?
A notebook works if you keep it up and can summarise it later. An app helps mainly with two things AS makes
tedious: marking which areas were involved when the pattern moves between the back, buttocks, neck and
heels, and producing a summary without rereading every page the night before the appointment (the free
report covers the last 7 days; several-month windows are Premium).
