Answer These 4 Questions About Describing Pain With AS

If you live with ankylosing spondylitis (AS), you probably know your pain
very well. You know when your back feels like it’s been swapped with a 90-year-old’s,
when your hips refuse to cooperate, and when “just getting out of bed” feels like
a full-body workout. But the real challenge is turning those feelings into words
your rheumatologist can actually use.

The way you describe your ankylosing spondylitis pain shapes your diagnosis,
treatment options, and even how seriously your symptoms are taken. Doctors
can’t feel what you feel, so your language becomes their window into your body.
A few vague phrases like “it hurts a lot” don’t tell them enough. Clear, detailed
descriptions do.

A simple way to get there is to prep for each appointment by answering four
key questions about your AS pain. Think of them as your personal script. You’re
not being dramatic, you’re being preciseand that’s how you get better care.

A Quick Refresher: What AS Pain Usually Looks Like

Ankylosing spondylitis is an inflammatory form of arthritis that mainly affects
the spine and the joints where your spine meets your pelvis (the sacroiliac
joints). Over time, chronic inflammation can cause pain, stiffness, and even
new bone formation that limits movement.

Many people with AS notice:

• Chronic lower back or buttock pain that lasts for months, not days.
• Pain and stiffness that are worse in the morning or after resting.
• Symptoms that improve with movement, stretching, or a warm shower.
• Pain that can spread to the hips, neck, ribs, or heels.
• Fatigue that feels like you’re running on a half-charged battery.

Not everyone’s experience looks exactly the same, but these patterns help
differentiate AS from typical mechanical back pain. When you describe your
own pain using a few specific questions, your provider can better recognize
these patterns and tailor your treatment.

Why These 4 Questions Matter

Pain specialists often focus on a few core areas when assessing pain: where it is,
what it feels like, how intense it is, how long it lasts, and what makes it better
or worse. Rheumatologists do something similar with AS. The four questions
below organize all of that into a format that’s easy for both you and your doctor
to work with.

Before your next appointment, write down your answers. Bring them on paper,
in your phone’s notes app, or in a pain-tracking app. That way you’re not trying
to remember three months of back pain while sitting on an exam table in a flimsy
gown.

Question 1: Where Do You Feel the Pain and Stiffness?

Location is a huge clue in ankylosing spondylitis. Instead of saying,
“My back hurts,” get specific. AS pain often:

• Starts in the lower back or deep in the buttocks.
• Involves the sacroiliac joints (on either side of the lower spine).
• Radiates to the hips, thighs, or even the upper back and neck.
• Shows up in other joints like shoulders, ribs, or heels.

Helpful details to note:

• Exact spots: “Deep in my right buttock,”
  “low center of my back,” “across both hips,” “under my heel.”
• One side or both: Does the pain switch sides? Stay on one side?
• Radiation: Does it spread down your leg or up into your neck?

Try phrasing it like this:

“Most mornings, I wake up with deep, aching pain in both buttocks that
sometimes shoots into my lower back. If I stand too long, my hips and lower
spine feel heavy and stiff.”

That description tells your doctor a lot more than “My back hurts sometimes.”

Question 2: What Does the Pain Feel Likeand How Intense Is It?

The “quality” of pain and its intensity can point toward inflammation and help
your provider track whether treatment is working.

Use Specific Words to Describe the Sensation

Think about the texture and character of your pain. Is it:

• Aching or throbbing?
• Sharp, stabbing, or shooting?
• Burning or hot?
• Dull, heavy, or pressure-like?
• Cramping, pulling, or tight?

With AS, many people notice a deep, aching stiffness in the back and hips,
sometimes mixed with sharp twinges when they twist, bend, or sit too long.

Example:

“My baseline pain is a deep, dull ache with heavy stiffness across my lower
back. When I bend to pick something up, I sometimes get a sharp, stabbing
pain on one side.”

Rate Your Pain on a 0–10 Scale

The classic 0–10 pain scale is still usefulif you use it consistently. Here’s
one way to think about it:

• 0: No pain at all.
• 1–3: Mild painyou notice it, but you can still do most things.
• 4–6: Moderate painactivities are harder, you slow down or
  take breaks.
• 7–8: Severe painhard to focus on anything else, sleep and
  work are affected.
• 9–10: Extreme painemergency-room level, or close.

With AS, it also helps to rate:

• Your average daily pain over the last week or month.
• Your worst pain during a flare.
• Your pain after treatment (for example, after a medication change).

You might say:

“On most days, my back pain is about a 4 out of 10. During a flare, it shoots
up to an 8, especially at night. Since starting my current medication, my
worst pain has gone from a 9 to about a 6, but mornings are still tough.”

That level of detail helps your doctor see trends and adjust your treatment plan,
rather than just hearing “Yeah, it still hurts.”

Question 3: When Does It Show Up, and How Long Does It Last?

Timing is a big clue that your pain is inflammatory (like AS) rather than purely
mechanical (like a pulled muscle).

Common AS patterns include:

• Pain that lasts longer than three months.
• Stiffness that’s worse first thing in the morning.
• Pain that wakes you during the second half of the night.
• Symptoms that improve, not worsen, with gentle movement.
• Flares that come and go, on top of a constant background ache.

When you answer this question, think about:

• Onset: When did this pain first start? Months? Years?
• Daily timing: Is it worst in the morning, late at night, or after
  you’ve been still?
• Flares: Do you have episodes when your pain suddenly increases
  for days or weeks?
• Duration: When a flare comes, how long does it last?

Example:

“This back pain started about four years ago. Now, most mornings I wake up
with severe stiffness that takes about an hour of moving around to loosen.
If I sit more than 30 minutes, I stiffen up again. About once every two
months, I have a flare that lasts a week, where the pain is much more intense
and wakes me up around 3 a.m.”

If you can, track these patterns in a journal or app. Even a simple note like
“flare started Tuesday, worse at night, eased after a week” is incredibly useful.

Question 4: What Makes It Better or Worseand How Does It Affect Your Life?

This question covers two things: triggers and impact.

Identify What Helps or Hurts

For many people with AS:

• Resting too long, sitting at a desk, or long car rides can make pain worse.
• Gentle movement, stretching, walking, or physical therapy often help.
• Heat (like a warm shower or heating pad) can ease stiffness.
• Some medications, like NSAIDs or biologics, improve pain noticeably.

Pay attention to:

• Positions that make pain worse (slouching, lying flat, bending).
• Activities that ease symptoms (swimming, yoga, walking, stretching).
• How long relief lasts after you move, stretch, or take medication.

Example:

“If I sit for more than 20 minutes, my lower back locks up. A short walk or
stretching for five minutes helps. A hot shower in the morning reduces my
stiffness by at least half. My NSAID takes the edge off within an hour, but I
still struggle to bend or twist.”

Describe How Pain Interferes with Daily Life

Doctors also need to know how your AS pain affects your function and quality
of lifenot just how much it hurts.

Think about:

• Sleep: Does pain wake you? Are you exhausted the next day?
• Work or school: Do you need breaks, modified duties, or sick days?
• Home life: Is it hard to cook, clean, carry laundry, or care for kids?
• Movement: Can you bend to tie your shoes, turn your neck to drive, or
  stand in line?
• Mood: Does chronic pain cause anxiety, irritability, or low mood?

Example:

“Three nights a week, my back pain wakes me up around 4 a.m. I’m so stiff in
the morning that I need 45 minutes before I can comfortably get dressed. At
work, I struggle to sit through meetings without standing up, and I’ve stopped
driving long distances because turning my neck is difficult.”

These details tell your provider that your pain isn’t just a numberit’s changing
how you live. That matters when they’re deciding whether to adjust medication,
add physical therapy, or try another approach.

Putting It All Together: A Simple Template

Before your next appointment, try filling in a short “AS pain snapshot” like this:

• Where: Describe the exact spots where you feel pain or stiffness.
• What and how intense: Use descriptive words and a 0–10 rating
  for both average and worst pain.
• When: Note when pain is worst (time of day, flares, how long
  symptoms have been going on).
• What affects it and impact: List what makes pain better or
  worse and how it interferes with daily life.

You can even write it out as a short paragraph and hand it to your doctor or
read it from your phone. It might feel a little formal, but it can completely
change the tone and productivity of your visit.

Extra Tips for Describing AS Pain Clearly

• Use averages, not just extremes: Mention both your typical days
  and your worst flares.
• Be honest: Don’t downplay your pain because you’re worried about
  “complaining.” Your provider needs accurate information.
• Track over time: A simple weekly note like “pain 5/10 most days,
  flare to 8/10 this weekend” can show trends.
• Include other symptoms: Mention fatigue, eye pain, chest tightness,
  or gut issues if you have themthey can be related to AS.

Real-World Experiences: How These 4 Questions Play Out in Everyday Life

Sometimes the easiest way to figure out how to describe your own pain is to see
how other people talk about theirs. The following examples are fictional, but
they’re based on common experiences people with AS often report. Use them as
inspirationnot as a script you have to copy word for word.

Case 1: “The Slow-Motion Morning”

Jordan is in their mid-30s and has had unexplained back pain for years. Mornings
are the worst. When answering the four questions, their description looks like this:

“Most of my pain is in my lower back and both buttocks. It feels like a heavy,
deep ache with a lot of stiffness. On a typical day, it’s around a 5 out of 10,
but in the first hour after I wake up, it can hit an 8. It’s been going on for
about five years, but the last year has been much worse.

Mornings are the hardestI move in slow motion, and it takes at least 45
minutes before I feel like my back ‘unlocks.’ If I sit for a long time, like during
long meetings, I seize up again. Walking, stretching, or taking a warm shower
usually helps. It’s affecting work because I can’t sit through a full meeting
without pain, and I’ve started avoiding social events where I know I’ll be sitting
for hours.”

That level of detail gives their provider a strong sense that this is inflammatory
back pain and not just “I slept funny.” It also highlights why treatment needs to
focus on both controlling inflammation and protecting quality of life.

Case 2: “The Night-Time Wake-Up Call”

Alex has been diagnosed with AS but isn’t sure their current treatment is doing
enough. They use the four questions to organize what’s been happening:

“My pain is mainly in my lower back and up into my mid-spine. It’s a tight,
burning ache most of the time. On average it’s a 4 or 5, but two or three nights
a week I wake up around 3 a.m. with an 8 out of 10 pain that makes it hard to
find a comfortable position.

I’ve noticed it gets worse if I spend the day sitting at my desk without breaks.
Light exercise, like walking or swimming, helps a lot. Heat packs take the edge
off, but the relief doesn’t last more than an hour. My medication helped at
first, but over the last six months, the night-time pain has come back. I’m
exhausted during the day and sometimes have trouble focusing at work.”

Now the doctor can see that the flare pattern has changed over time, suggesting
it may be appropriate to adjust medication, tweak physical therapy, or look for
other contributing factors like posture or sleep setup.

Case 3: “The ‘I Thought It Was Just Bad Posture’ Story”

Taylor is in their late 20s and assumed their back pain was due to long hours
at a computer. When a provider finally asks detailed questions, Taylor describes:

“My pain is mostly across my lower back and one side of my buttock, but it
sometimes switches sides. The pain is a dull, nagging ache with stiffness that
feels like my spine is made of concrete. It started about three years ago.

It’s actually worse when I rest. If I lie on the couch too long or try to sleep in,
it’s miserable. When I get movingespecially walking or gentle stretchingthe
pain improves. On a typical day it’s around a 3 or 4, but during busy weeks when
I don’t exercise, it jumps to a 7. I’ve stopped going on long car trips because I
get too stiff and sore.”

That description makes it clearer that this isn’t classic “desk job back pain.”
The patternworse with rest, better with movement, long-standing symptoms,
buttock involvementfits inflammatory back pain, prompting further testing for
AS or related conditions.

Your own version will look different, but the structure is the same: clear
descriptions of where it hurts, what it feels like, how strong it is, when it
happens, what changes it, and how it affects your life.

The Bottom Line: You’re Not ComplainingYou’re Communicating

Describing pain when you live with ankylosing spondylitis can feel exhausting.
You might worry you sound repetitive or dramatic. In reality, detailed pain
descriptions are one of the most powerful tools you have. They help your
healthcare team:

• Recognize patterns that fit AS and related conditions.
• Measure how well treatments are working.
• Decide when it’s time to adjust medications or add therapies.
• Understand how pain is affecting your real lifenot just your X-rays.

The four questionswhere, what/how intense, when, and what affects itturn
your pain story into something structured and usable. You don’t have to be
poetic or perfect; you just have to be honest and specific.

And one more reminder: nothing in this article replaces medical advice. If your
pain is changing, worsening, or interfering with your life, talk to a healthcare
professional. Bring your answers to these questions with you. You’re not just
describing painyou’re advocating for your future mobility, comfort, and
quality of life.