u/HeatherGosling

Hi, I’m hoping to hear from people who’ve been through something similar because I feel like I’m losing my mind on the diagnostic hamster wheel.

I’m 36F and have been dealing with what really feels like a systemic inflammatory arthritis, but I’m currently undiagnosed and my rheumatologist has been very dismissive.

I won’t dump everything, but here are the highlights:
- Elevated inflammatory markers (CRP 33.5, ESR 45)
- Inflammatory back pain since ~20 (morning stiffness, night pain, better with movement, worse with rest)
- Progression over time from low back → mid back/ribs (I have very restricted chest expansion) → neck/jaw/face
- History of enthesitis (Achilles, knees)
- Strong response to NSAIDs (huge improvement in stiffness and pain after starting mounjaro)
- I have generalized swelling in my hands and feet as well but my rheum says it doesn’t look like dactylitis (haven’t been able to wear my wedding rings in years)

Extra Articular Features:
- Nail changes (ridging, peeling, a deep groove down one nail to the cuticle)
- Scalp flaking and inflammation
- Facial flushing/rash (very persistent for 3 years now)
- My right eye flares as well, inflammation and redness
- Family history of ulcerative colitis, sjogrens, hashimotos, lupus, and I’m pretty certain my dad had an inflammatory arthritis that went undiagnosed (both hips and knees replaced before 50 and thickened toenails)
- Recurring vaginal fissure
- Scaly looking area behind my ears

One thing that really stood out to me:
After my dad’s celebration of life, I had what I can only describe as a full-body flare.
My torso broke out in a rash that lasted ~3 months
At the same time, my face and scalp flared with scalp flaking which had never happened to me before

Everything together keeps pointing me toward something in the spondyloarthritis/psoriatic spectrum, but I feel like I’m not being taken seriously because nothing is “classic enough” yet. My scalp is currently flaking as well and very irritated.

What I’m really hoping to understand from others:
What do your flares actually feel like?

If you have scalp involvement… what happens for you?
I feel like I keep getting dismissed because it’s not classic or severe enough but do any of you have more mild psoriatic flares?

How did you finally get diagnosed?
Imaging? A specific doctor? Just time and progression? Did anyone else have a “slow upward progression”? (Achilles, low back → ribs → neck/jaw/face)

I feel like I have enough pieces that this should make sense, but I keep hitting a wall with doctors.
Even just hearing “this sounds like my experience” would honestly help right now.

Thanks for reading!

*Reposting without photo*

I’m in a situation right now where it feels like my entire case hinges on one upcoming MRI, and I’m struggling with how to approach it.

I’ve been dealing with back pain since I was in my 20’s. In 2021 everything ramped up and it took over my entire life. Chronic muscle tension and pain, brain fog, rashes, recurring redness in my eye, hair shedding, high inflammatory markers, extreme fatigue, shortness of breath. More recently, I revisited my history and realized that the pattern fits really well with an inflammatory arthritis in the Spondyloarthritis family. My chest expansion test also measured at 2.3 cm.

My rheumatologist doesn’t believe that anything is wrong with me, she actively belittles me during appointments. But I pushed pretty hard and finally got an MRI… and it came back basically “clear” noting some mild degenerative disc disease and straightening of the cervical and thoracic spine.

And now I feel like everyone is going to give up on me.

What’s messing with me is that I started Mounjaro out of desperation for some relief in January and my inflammatory markers dropped. And the MRI ended up being about 48 hours after my dose (got in on a cancellation), so basically when it’s at its peak. I can’t stop thinking about whether that affected what showed (or didn’t).

I do have a lumbar and SI joint MRI booked for August, but right now it just feels like I’m waiting for another test that could come back “normal” and close the door on everything. It’s worth noting that I am HLA-B27 negative.

I don’t even know what the right move is here.

Do I just stay on the medication and hope something shows up on the next MRI or should I do a washout?

Do I push for another opinion now? I asked my GP for a referral to the Toronto Western Spondylitis Clinic because I’m very uncomfortable with my current rheumatologist and they said they wanted to see what the MRI said first. I understand it can be highly dependent on who reads it?

Has anyone had a “clear” MRI but still ended up getting answers later?

I’m just feeling really low and defeated. Any encouragement is appreciated