I’m new here, and just switched Rheumatologists last week. I switched because I clearly do not just have Fibromyalgia. It started with fatigue and aches/pain….yes, but now? No way.
In the last year I developed POTS (Postural Orthostatic Tachycardia Syndrome), and it was confirmed a couple months ago with a Tilt-table. (I have type 2, Hyper POTS) Cardiologist said this is what you have, nothing we can do.
I disagreed, and did my own research while I wait for the only specialist in my area (3 hours away, with 8 month wait-list!). It’s highly linked to autoimmune.
I thought Sjogrens, with my recent eye problems (inflammation, dry dry dry eyes, and recurrent infections), and constant dry mouth.
My new Rheumy wanted to be thorough (CRP was usually always high, but previous Rheumy shrugged it off as nothing, tested RF (negative), ANA (negative) and called it a day, Fibro) and tested ANA (Waiting still on that, but probably negative again), RF again (Negative), CRP (I’m not in a flare right now, for once, it’s in normal range!)
I was getting pretty disheartened again until I looked at my CCP test, POSITIVE it says! Not expected… I have joint swelling (even when not in a flare like now, my knuckles are puffy, Rheumy pointed it out, got xrays soon too), but I still thought it was Sjogrens (it probably still is, need a biopsy!)
BUT CCP is low positive, 20.8 U, (reference is <3 U, but online it says 20-39 is low positive)…. Is it early RA? Is it a fluke? How accurate is this test?
I see him again in 3 weeks, and I’m scared that with low CRP and ESR rate right now (I told him, the past month and a half, I’m in what I call a cooling off period, less symptoms).
Symptoms for me are: Muscle aches and pain everywhere, nerve pain in my legs only (I think SFN!), POTS symptoms, Raynaud’s (newish, I showed pics to the Rheumy and that’s what he said), Joint swelling (started 5 months ago, very recent), joint pain (goes back longer, about a year), I get tingling and numbness occasionally in my arms mostly, dry eyes, dry mouth, constipation (life-long, slow gut), eye infections (bacterial, not viral), eye inflammation (whites of the eyes get red, painful, blurry vision and light sensitive), dry cough (no infection, my throat looks dry and irritated) comes and goes, Mouth sores (cankers, from dry mouth….I think), dry sinuses (also inflamed), low-grade fever (but again, no infection!)
Does CCP mean much, could it still be something else? Or RA + something else? 🙁 I just want to know! I’m tired and sick (literally and figuratively) of fighting, I just want to KNOW.