I was dx "fibro" 7 years ago based on a collection of symptoms that couldn't be explained by other issues due to negative autoimmune panels, though as time has passed my symptoms do not appear to be fibro. Ex- I do not have the tender points, depression, IBS, malaise, etc. I DO have several neurological issues and joint problems, facial nerve pain, plus HSV (chronic cold sores).
I am currently a diagnostic patient at Mayo- undergoing testing for MS and confirming my trigeminal neuralgia, plus a consult for rheumy in March. In addition to this I consulted with an infection control doc who rx'd daily valtrex for my cold sores.
One thing that is lingering is the fact that my CRP and sed rate have been consistently high during these last seven years and within last two years my beta globulins have been high and creatinine low. I have been tested for multiple myeloma and tested negative two years ago. My ANA, SS, scleroderma, and RH factor are all negative. This is quite perplexing. I am apparently in a chronic state of unspecified inflammation. According to all mainline teaching hospitals and diagnostic centers- in fibro only these lab values do not go into abnormal ranges.
So, do any of you have consistently high lab values in either of these categories as related to ONLY fibro? Or have you had high levels at one point then later developed abnormal levels in specific panels for lupus, sojgrens, scleroderma, rheumatoid arthritis, etc?
Hi. I'm only a patient, but my understanding is that Fibromyalgia doesn't cause ESR and CRP to elevate; and that it isn't even considered an "inflammatory condition" in the usual medical sense of that phrase... which matches what you've been told by your professionals.
I've read that ESR and CRP can elevate in RA, lupus, inflammatory bowel diseases (like ulcerative colitis and Crohn's), cardiovascular conditions, and cancers---also due to infections. Not sure about VIRUSES, though (you should ask). I think HSV can take up residence in two places: the trigeminal ganglion, near the ear; or the sacral ganglion, near the base of the spine. And that it can cause skin infection only; OR that it can cause disseminated problems (brain, liver, lungs, kidneys, etc.), WITH OR WITHOUT skin issues. As I said, whether HSV can elevate CRP and ESR, you should ask your doctors. (You could also ask on the herpes board, to see what others have been told.)
In answer to your question, over many years my CRP and ESR elevated now & again. I was eventually diagnosed with systemic lupus, milder side. But I had other symptoms & labs that fit lupus, incl. a lupus-specific photosensitive rash. I also had many GI tests (ugh!) that ruled out inflammatory bowel diseases.
I'm glad you're being evaluated at Mayo. I've seen people literally felled by trigeminal neuralgia, writhing on the floor, so I hope its underlying cause is identified & addressed quickly, like right now. I hope others add thoughts & suggestions. Let us know how you're doing. Wishing you better days ahead, sympathetically, Vee
Your symptoms and labs sound a lot like mine. I've been through the ringer of tests by every kind of specialist. They know something is wrong, but they don't know for sure what it is. Due to my elevated crp and sed rates, Cleveland Clinic diagnosed me with Seronegative Spondyloarthropathy --- which is an area of autoimmune illnesses that are seronegative--- in other words - negative ANA and RA. The meds they put me on include prednisone and salfasalazine --- but after 2 months, I am still not feeling well. The rhumatologists literally do not know what to do with me. Please keep updating this thread, as I am very curious what Mayo says. In fact, a doc yesterday thought I might do well at Mayo - but cleveland clinic has a higher rated Rhumatology dept. However, if you do get some answers, I may just be willing to go to Mayo as well!