u/FragrantSteak8488

Saw a rheumatologist for the first time today she stated that since I haven’t had a good response to Meloxicam that I don’t have AS or axspA (she said people with axspA and AS show significant improvement with NSAIDS). While walking around I feel almost no pain. I wake up every night at 3 am with pain and have to flip over to go back to sleep. I have stiffness for around 2 hours every morning. Went to the ER 10 days ago they gave me prednisone and my symptoms were 75 percent gone but came back after I finished the 7 days of it. I’m just getting worse my chest tightness and neck tightness is horrific. She said it would also have to show up on an MRI for them to diagnose Nr-axspA. I left the appointment crying because I can’t do normal daily tasks, I can’t sit up long enough to do my homework so I now have to drop out of school, I’m in so much pain, my pain is taking everything away from me I don’t know what to do.

Some background- I’m 28 years old, had dactylitis September 2025

Couldn’t sit down starting fall 2025 and still can’t. Pain went from SI joints and all the way up to cervical spine.

Imaging- xray lumbar mild osteoarthritis in SI joints

Lumbar MRI- L5-S1 facet arthropathy

Pelvis MRI-Small focal marrow edema laterally at the femoral head and neck junction of the left hip

Chest, and neck X-rays are fine.

Crp and ESR Normal

Complement C4-high

DS DNA-High

Negative for HLAB27 gene

Saw a rheumatologist for the first time today she stated that since I haven’t had a good response to Meloxicam that I don’t have AS or axspA (she said people with axspA and AS show significant improvement with NSAIDS). While walking around I feel almost no pain. I wake up every night at 3 am with pain and have to flip over to go back to sleep. I have stiffness for around 2 hours every morning. Went to the ER 10 days ago they gave me prednisone and my symptoms were 75 percent gone but came back after I finished the 7 days of it. I’m just getting worse my chest tightness and neck tightness is horrific. She said it would also have to show up on an MRI for them to diagnose Nr-axspA. I left the appointment crying because I can’t do normal daily tasks, I can’t sit up long enough to do my homework so I now have to drop out of school, I’m in so much pain, my pain is taking everything away from me I don’t know what to do.

Some background- I’m 28 years old, had dactylitis September 2025

Couldn’t sit down starting fall 2025 and still can’t. Pain went from SI joints and all the way up to cervical spine.

Imaging- xray lumbar mild osteoarthritis in SI joints

Lumbar MRI- L5-S1 facet arthropathy

Pelvis MRI-Small focal marrow edema laterally at the femoral head and neck junction of the left hip

Chest, and neck X-rays are fine.

Crp and ESR Normal

Complement C4-high

DS DNA-High

Negative for HLAB27 gene

Saw a rheumatologist for the first time today she stated that since I haven’t had a good response to Meloxicam that I don’t have AS or axspA (she said people with axspA and AS show significant improvement with NSAIDS). While walking around I feel almost no pain. I wake up every night at 3 am with pain and have to flip over to go back to sleep. I have stiffness for around 2 hours every morning. Went to the ER 10 days ago they gave me prednisone and my symptoms were 75 percent gone but came back after I finished the 7 days of it. I’m just getting worse my chest tightness and neck tightness is horrific. She said it would also have to show up on an MRI for them to diagnose Nr-axspA. I left the appointment crying because I can’t do normal daily tasks, I can’t sit up long enough to do my homework so I now have to drop out of school, I’m in so much pain, my pain is taking everything away from me I don’t know what to do.

Some background- I’m 28 years old, had dactylitis September 2025

Couldn’t sit down starting fall 2025 and still can’t. Pain went from SI joints and all the way up to cervical spine.

Imaging- xray lumbar mild osteoarthritis in SI joints

Lumbar MRI- L5-S1 facet arthropathy

Pelvis MRI-Small focal marrow edema laterally at the femoral head and neck junction of the left hip

Chest, and neck X-rays are fine.

Crp and ESR Normal

Complement C4-high

DS DNA-High

Negative for HLAB27 gene

5’ 6” 170lbs, current meds Tylenol, Meloxicam.

History / Symptoms:

2021: Started with sciatica

Since October 2025: Progressive worsening back pain, now unable to sit for long without significant pain

January 2026: Woke up with sudden severe back pain that has persisted and is now debilitating

Pain switches sides

Stiffness wakes me up daily around 3–5 a.m.

Can only tolerate ~1–2 hours of walking per day (movement helps somewhat, but too much worsens pain)

For ~2 years: chest cracking sensation (feels like it gets stuck at times) with occasional difficulty breathing

Beginning of April: PCP stopped meloxicam for 2 weeks because she didn’t think it helped, my pain went all the way into my cervical spine, neck is so tight and painful up by where my skull connects to my spine. I am back on meloxicam it helps some but pain is still bad in my neck. Making my front neck muscles tight/slight choking feeling.

Workup so far:

Lumbar X-ray: Moderate SI joint arthritis

Lumbar MRI: Moderate L5-S1 facet arthropathy

Labs: CRP negative, HLA-B27 negative

4/12 started having cervical spine pain

4/13 Had SI joint steroid injection, pain was gone for about 12 hours but came back.

Had Lupus panel done: Complement C4 was 41 reference range 10-40 mg/dL

Anti DS DNA EIA: 10.0
Normal value:<10 IU/mL

Negative for everything else on panel

Cervical spine and chest X-ray are clear

Awaiting Pelvic MRI results

Current plan:

Started PT

Seeing rheumatologist 5/18

Questions/comments:

Pain management mentioned ankylosing spondylitis
at my first appointment but then my second appointment completely dismissed that he said that and had told me that the pain could just be in my head. I am at a loss of what to do. My PCP says everything seems normal but I have never felt worse. I am getting very depressed, I can’t work or do my school work, I’ve been in so much pain since January 20th 2026.

Are there other conditions that should be considered given my age and imaging findings?

I have never been this miserable in my life, any insight is greatly appreciated.

Update- I also want to add in September of 2025 I had a severely swollen thumb joint just came out of nowhere , thought it was infected, went to the military hospital and they said it was just infected did an I&D and it was just alot of blood. Wasn’t given antibiotics just healed a month later on its own.

5’ 6” 170lbs, current meds Tylenol, Meloxicam.

History / Symptoms:

2021: Started with sciatica

Since October 2025: Progressive worsening back pain, now unable to sit for long without significant pain

January 2026: Woke up with sudden severe back pain that has persisted and is now debilitating

Pain switches sides

Stiffness wakes me up daily around 3–5 a.m.

Can only tolerate ~1–2 hours of walking per day (movement helps somewhat, but too much worsens pain)

For ~2 years: chest cracking sensation (feels like it gets stuck at times) with occasional difficulty breathing

Beginning of April: PCP stopped meloxicam for 2 weeks because she didn’t think it helped, my pain went all the way into my cervical spine, neck is so tight and painful up by where my skull connects to my spine. I am back on meloxicam it helps some but pain is still bad in my neck. Making my front neck muscles tight/slight choking feeling.

Workup so far:

Lumbar X-ray: Moderate SI joint arthritis

Lumbar MRI: Moderate L5-S1 facet arthropathy

Labs: CRP negative, HLA-B27 negative

4/12 started having cervical spine pain

4/13 Had SI joint steroid injection, pain was gone for about 12 hours but came back.

Had Lupus panel done: Complement C4 was 41 reference range 10-40 mg/dL

Anti DS DNA EIA: 10.0
Normal value:<10 IU/mL

Negative for everything else on panel

Cervical spine and chest X-ray are clear

Awaiting Pelvic MRI results

Current plan:

Started PT

Seeing rheumatologist 5/18

Questions/comments:

Pain management mentioned ankylosing spondylitis
at my first appointment but then my second appointment completely dismissed that he said that and had told me that the pain could just be in my head. I am at a loss of what to do. My PCP says everything seems normal but I have never felt worse. I am getting very depressed, I can’t work or do my school work, I’ve been in so much pain since January 20th 2026.

Are there other conditions that should be considered given my age and imaging findings?

I have never been this miserable in my life, any insight is greatly appreciated.