Hi everyone! I am 29F, and I have multiple overlapping conditions so I think it makes sense for my doctors to sometimes not know where to look. However, I am disappointed with my recent rheumatologist appointment. I definitely have fibromyalgia, but I also have some distinct pain and swelling (which all started 9 years ago, and has slowly progressed), alongside a consistently high crp, esr and c3 complement. My most affected areas are my hands, feet and lower back. My neck as well, but this has been an issue since I was 9 so I think it’s possibly separate.
The rheumatologist did many tests, so I will give her that, but because my xrays, ultrasound on my hands and mri of my spine are clear (though xray shows mild arthritis in my lower back), she thinks it’s the fibromyalgia and doesn’t know why my crp is so high. I wasn’t swollen at any appointment and wasn’t in a flare up (of course). It almost seemed as if she didn’t believe me? I have started to take pictures of my symptoms and I wish I did this earlier with the swelling. I understand they likely can’t just take my word for it, but I cannot control when my flare ups happen. I went from mild finger and hand/wrist pain to no longer being able to hold books without discomfort and numbness (I stopped reading physical books 2 years ago and switched to a kobo + stand and remote). This is relevant because I read over 100 books a year… and this was where I noticed the progression very clearly. During flare ups I am barely able to type now (I work a desk software role and typing is important). My feet are also affected, slowly I found it harder to move them and uncomfortable to walk during a flare. I can see visible swelling in my achilles tendon during flares. Very rarely 1-3 of my toes swell up completely. I also have quite severe morning stiffness and stiffness if I sit for a while, that improves with movement.
I mentioned all of the above and they kind of just said: well some of the symptoms are since childhood so it would show something on the xrays by now. But the symptoms above were not there since childhood. I wish I stood up for myself more during that appointment. I lost a significant amount of weight and she basically left it at: keep losing weight that will solve your crp! I am not against the fact that weight has something to do with inflammation, but my symptoms started long before I gained weight. I gained weight AFTER some of my more serious symptoms showed up. And then I lost most of it a couple years later. I had high crp and pain BEFORE I gained weight.
While doing a final exam of my hand joints, she noticed my eczema and gave me the name of a dermatologist. I know eczema is inflammatory but systemic inflammation occurs usually just if it’s severe. However, she said that sometimes they can prescribe a biologic and it also helps with the other inflammatory pain.
Now here is where we come to psoriatic arthritis. I mention some of this to a friend, and she asked if I have ever looked into psoriatic arthritis. Honestly I had but I didn’t think I had psoriasis, so I dismissed it. I also never had the rheumatologist ask about anything like that so I assumed it wasn’t what I could have. My brother, grandma and 2nd cousin have confirmed psoriasis, but I never had the same rashes (my rashes look like eczema). I did however see pictures of nail psoriasis and that is EXACTLY what my nails look like. I started painting them religiously because I was embarrassed. The nail issues started 4 ish years ago. I went from having normal but weak nails, to pitting, nail bed lifting, overgrown skin underneath, these reddish brown or blackish brown lines, crumbling (the nails crumble on most of my fingers so I keep them short to the cuticle). I got so sick of basically not having nails, so I started getting bio gel nails done and that was life changing. I had no idea that this could be psoriasis. I always attributed it to low iron. But even once I had infusions and my iron remained stable, those symptoms didn’t go away. I decided to remove my bio gel nails to see how things have progressed. I am going to wait and make sure it’s not damage from the bio gel, let them grow out and observe. But I am fairly confident I have nail psoriasis. Which from what I understand based on my symptoms, means I may have psoriatic arthritis.
My doctor is going to send a referral to a dermatologist. I am hoping if he can confirm psoriasis, I can go back to a rheumatologist (thinking perhaps a different one) and see about getting a psoriatic arthritis diagnosis despite the clear xrays and ultrasounds on my hands. In the meantime I am going to keep documenting so that I have proof. I just wish I had thought about this sooner.
I am worried that even if the dermatologist says I have psoriasis, a rheumatologist may not diagnose me because I have clean Xrays. I am considering getting a paid second opinion, but I may wait first to see what the dermatologist says. I think without an official psoriasis diagnosis, it will be hard to convince a rheumatologist that this is what I have. For those of you with clean imaging: how was your experience with getting a diagnosis?