The Morning Stiffness I Thought Was Normal
Every morning at 28 years old, I woke up feeling like I was 80. My lower back was so stiff I could barely roll out of bed. Getting dressed took twice as long as it should. By the time I made it to the shower, I'd been awake for 30 minutes and was already exhausted.
"You're stressed," my primary care doctor told me during my annual checkup. "Try yoga. Maybe see a chiropractor."
I tried yoga. I saw three different chiropractors. I bought an expensive ergonomic chair for work. I got massages. Nothing helped.
The pain continued for three years before someone finally said the words that changed everything: "I think you should see a rheumatologist."
The Symptoms I Thought Were Separate Issues
Looking back now, the signs were everywhere. But when you're living with symptoms that develop slowly over years, you don't always connect the dots.
Here's what I was experiencing:
Morning stiffness: My back was rigid and painful for at least an hour after waking up. Sometimes two hours. But it improved with movement and felt better by afternoon.
Night pain: I'd wake up at 3 or 4 AM with deep aching in my lower back and hips. Rolling over in bed hurt. I went through so many mattresses, convinced I just needed the "right" one.
Hip pain: My right hip started hurting when I sat too long or climbed stairs. I assumed I'd pulled something at the gym.
Heel pain: The bottoms of my feet hurt, especially first thing in the morning. I bought new shoes. Lots of new shoes.
Fatigue: I was exhausted all the time. But I was working long hours and stressed, so I wrote it off.
Eye inflammation: Twice in two years, I developed painful red eyes that were sensitive to light. My ophthalmologist treated the inflammation but didn't ask about other symptoms.
I thought these were all separate, unrelated problems. My doctors seemed to think so too.
The Doctor Who Finally Listened
After three years of being told my pain was "just stress" or "normal for your age" (at 28!), I saw a new physician assistant at my clinic. She asked more questions than anyone had before.
"Does your back pain improve with movement?"
Yes.
"Is it worse in the morning and at night?"
Yes.
"Do you have any family history of autoimmune conditions?"
Actually, yes—my aunt has rheumatoid arthritis.
She didn't dismiss me. She didn't tell me to do more yoga. She said, "I'm going to refer you to a rheumatologist. Your symptoms fit a pattern I want them to evaluate."
That appointment changed my life.
The Diagnosis Journey
The rheumatologist, Dr. Martinez, spent an hour with me on that first visit. She asked about every symptom, going back years. She pressed on specific points of my spine and hips, noting where I winced. Then she ordered tests.
The blood work:
- HLA-B27 gene test: Positive (found in about 80-90% of people with ankylosing spondylitis)
- Elevated C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR): Both markers of inflammation
- Complete blood count: Showed mild anemia, common with chronic inflammation
The imaging:
- X-rays of my spine and pelvis: Showed early changes in my sacroiliac joints
- MRI of my spine: Revealed inflammation that X-rays couldn't yet detect
Two weeks later, Dr. Martinez called with the diagnosis: Ankylosing Spondylitis (AS), a chronic inflammatory disease that primarily affects the spine and sacroiliac joints.
"I'm sorry it took this long to get diagnosed," she said. "But I'm glad we caught it relatively early. We can start treatment and prevent further damage."
I cried. Not because I was upset about the diagnosis—because finally, after three years, someone believed me. My pain had a name. It wasn't just stress. It wasn't normal. It was real.
What I Wish I'd Known About Ankylosing Spondylitis
AS is a type of inflammatory arthritis that causes vertebrae to fuse together over time if left untreated. It's more common than most people realize, affecting about 1 in 200 adults in the U.S.
Key facts about AS:
It starts young: Most people develop symptoms in their late teens to early 30s. Yet the average time from symptom onset to diagnosis is 7-10 years.
It's more common in men, but women get it too: The male-to-female ratio is about 2:1 or 3:1, but women are often diagnosed later because their symptoms can be more subtle.
It's genetic but not inherited: Having the HLA-B27 gene increases risk, but not everyone with the gene develops AS. And not everyone with AS has the gene.
It's progressive: Without treatment, inflammation can lead to new bone formation, causing vertebrae to fuse. This is why early diagnosis matters.
It's more than back pain: AS can affect eyes (uveitis), heart, lungs, and bowel. It's a systemic disease, not just a back problem.
The Red Flags Doctors Should Ask About (But Often Don't)
Dr. Martinez explained that there are specific characteristics that differentiate inflammatory back pain (like AS) from mechanical back pain:
Inflammatory Back Pain (AS-type):
- Starts before age 45
- Gradual onset (not from injury)
- Improves with movement and exercise
- Worsens with rest
- Causes significant morning stiffness (lasts >30 minutes)
- Improves throughout the day
- Night pain that wakes you up
- Alternating buttock pain
Mechanical Back Pain:
- Can start at any age
- Often from injury or overuse
- Worsens with movement
- Improves with rest
- Minimal morning stiffness
- Gets worse as the day goes on
- Doesn't typically wake you at night
"If your doctors haven't asked these specific questions, the diagnosis might be missed," Dr. Martinez told me.
Treatment That Actually Works
Once diagnosed, I started on a biologic medication called a TNF inhibitor. These drugs target the specific inflammatory pathway that drives AS.
My treatment plan includes:
Medication:
- TNF inhibitor injection (every two weeks)
- NSAIDs as needed for breakthrough pain
- Vitamin D supplement (many people with AS are deficient)
Physical therapy:
- Specific exercises to maintain spinal flexibility
- Posture training
- Breathing exercises (AS can affect chest expansion)
Lifestyle changes:
- Regular exercise (swimming is perfect for AS)
- Morning stretching routine (non-negotiable)
- Anti-inflammatory diet (more fish, vegetables, less processed food)
- Smoking cessation (smoking accelerates AS progression)
The results?
Within six weeks of starting the biologic, my morning stiffness decreased from 2 hours to about 15 minutes. The night pain stopped. My fatigue improved dramatically. I could bend over to tie my shoes without pain for the first time in years.
It's not a cure—AS is chronic and lifelong. But with treatment, I can live a normal, active life.
What I'd Tell Someone Who Thinks They Might Have AS
1. Trust your gut
If your back pain doesn't fit the typical pattern, if it's worse at night and in the morning, if it's been going on for months or years—push for answers. Don't accept "it's just stress" as a diagnosis.
2. See a rheumatologist
Even if your primary care doctor doesn't think it's necessary, you can self-refer to a rheumatologist in many cases. These specialists are trained to recognize inflammatory arthritis.
3. Track your symptoms
Keep a diary of:
- When pain is worst (time of day)
- What makes it better/worse
- Duration of morning stiffness
- Any other symptoms (eye problems, heel pain, gut issues)
- Family history of autoimmune diseases
This information helps doctors see patterns.
4. Ask about specific tests
Request:
- HLA-B27 genetic test
- Inflammatory markers (CRP and ESR)
- MRI of sacroiliac joints (more sensitive than X-rays for early disease)
5. Don't let "normal" X-rays dismiss you
Early AS might not show up on X-rays. MRI can detect inflammation before structural damage occurs. If your X-rays are normal but symptoms persist, ask for an MRI.
6. Bring support to appointments
I started bringing my partner to doctor appointments. Having another person hear the conversation and advocate for you makes a difference, especially when you're exhausted and in pain.
Life After Diagnosis
Getting diagnosed with a chronic illness is complicated. There's relief (finally, an answer!) mixed with grief (this is forever?) and fear (what does this mean for my future?).
Here's what I've learned in the two years since my diagnosis:
This doesn't define me: I have AS. It's part of my life. But it's not who I am.
I'm my own best advocate: Doctors are human and fallible. If something doesn't feel right, I speak up now.
Community matters: Connecting with others who have AS through support groups (online and in-person) has been incredibly valuable.
My body gave me warning signs: I just didn't know how to read them. Now I pay attention.
Early treatment makes a huge difference: The sooner AS is treated, the better the long-term outcomes. Every year without proper treatment allows more inflammation and potential damage.
The Statistics That Matter
- Average diagnostic delay: 7-10 years from symptom onset
- People affected in U.S.: About 1 in 200 adults (roughly 1.6 million)
- Typical age of onset: Late teens to early 30s
- Success rate of biologics: 60-70% of patients respond well
These numbers are improving as awareness grows. But too many people still suffer for years before getting diagnosed.
Your Action Plan If You Suspect AS
This week:
- Track your symptoms daily (morning stiffness duration, pain patterns)
- Research rheumatologists in your area
- Make a list of all symptoms, even ones that seem unrelated
- Note family history of autoimmune conditions
This month:
- Request referral to rheumatologist or self-refer
- Ask for HLA-B27 test and inflammatory markers
- Take photos of visible symptoms (swelling, redness)
- Join an AS support group or online community
Don't wait three years like I did.
Back pain that's worse at night and in the morning, that improves with movement, that's been going on for months—that's not normal. That's not just stress. That's not something you have to live with.
If your gut tells you something is wrong, trust it. Keep pushing for answers. Find a doctor who will listen. You deserve a diagnosis. You deserve treatment. You deserve to wake up in the morning without feeling like you're 80 years old.
Your pain is real. Make them take it seriously.
