Hi Nannen - your post really resonated with me! I was dxd with EBV and CMV 11 years ago - and while some periods have been better than others, I too, have never been the same since. I'm quite a bit older than you are - and I'm sorry you're dealing with this at such a young age! I am currently dealing with some auto-immune issues as well - really, I'm just stil in diagnosis limbo. As my signature indicates - I've also been dx'd with fibro and chronic fatigue. Everything changed after a terrible "virus" that left me with fever and bedridden for months as well....had to quit my job. I was finally tested for both CMV and EBV after an infectious disease doc advised it (my pcp dragged her feet for 6wks) - which were both positive.
All the symptoms you mention I have either dealt with - or mostly, am still dealing with. I have had some remission periods when the symptoms were minor - but I'm currently am in a flare that I can't seem to get out of (a year). I also have a positive and relatively high ANA, with elev. CRP. I've been seeing a rheumatologist for a year and a half. She initially said undifferentiated connective tissue disease, and it seems she is waiting for further proof of specific disease, since she keeps testing. She also confirmed fibro (3rd doc to do so) and the chronic fatigue.
I'm very curious if you had a nasty and prolonged fever with your onset, along with extreme fatigue, joint pain, elevated liver enzymes and a terrible headache that involved your eyes - hurting to move them? I also had a rash, loss of appetite with weight loss. Ring any bells? I'm wondering now if that might have been the onset of lupus, rather than EBV/CMV. What have you discovered?
I'm so glad you're going to Mayo - please let me know what you find out. I've pondered doing the same thing many times. At any rate, I certainly sympathize with the difficulties you are facing in terms of trying to live a normal life. The heart rate and anxiety issues are particularly tough. Hang in there. I hope if there are more of us who are dealing with these same issues they will post.
Wow. Sorry for my delayed responses.
Zoda- I have heard of recurring EBV. I don't have any good information for you besides what I've already mentioned, but hopefully someone who can help will see your post. I wish you the best. Good luck!
lucysgd- Wow. It seems like you have a lot more going on than I do. I'm sorry to hear you've been dealing with this for so long. I know how disheartening and tiresome it becomes.
I don't know much about any of the connective tissue diseases, so I can't provide any info there. Fibro and CFS have been loosely thrown around as diagnoses for the past three years also, and fibro is what Mayo ultimately diagnosed me with. They definitively ruled out Lupus and RA (at least for now), and now I am currently in the process of ruling out MS and other neurological issues(in my hometown).
Hi Nannen, Thanks for your response. I'm glad Lupus and RA have been ruled out for you! Was that because your bloodwork was negative - or a combination of lab and clinicals? I've just had another round of blood tests with my rheumie - finding out the results next week. Don't know what they will reveal - but my symptoms have been ramping up over the last year. I've dealt with fibro long enough to strongly believe that there is something else going on.
I'm sure there are more tests in my future - and I will definitely be considering Mayo or Cleveland Clinic if there aren't some answers very soon. My 29 year old cousin was just dx'd w/ MS. I hope your upcoming tests are all negative - best of luck with that!
Thanks again for your post - I hope you feel lots better very soon!
Hi Nannen - glad to hear your tests were negative! I just got my bloodwork back, and while the ANA is still high - sed rate is normal, and I don't test positive for any of the specific AI markers (Sjogren's, Lupus, RA, etc.) despite my symptoms. My rheumie says it's definitely AI "something", indicated by the ANA - but without the lab test to confirm, she can't make a decisive diagnosis. She has referred me to Cleveland Clinic and I'm supposed to start Plaquenil. My potassium is high and now I'm wondering if that isn't the beginning of some organ (kidney) involvement. Apparently I have some issues w/ my hematocrit and RBC's as well. Yikes. I'm hoping we'll get it figured out soon -
As to the flourescent lighting - yes indeed - I have a problem with it. I also have trouble with sun sensitivity. When you are walking for 10-15 min, is it in the sun? I've had fibro longer than I've had the positive ANA - and I always had some trouble with flourescent lighting - dizziness, visual disturbance and headache. It didn't happen with every exposure, so I think the reactions had a lot to do with other triggers/stresses going on simultaneously. A flourescent fixture with a balast going out (flickering) made me feel like I would go into a seizure, and I'd flee ASAP. I don't really have the dizziness after exercising. But then, I'm not exercising much these days
I have learned on the lupus board that many folks that are sun sensitive also have the same problem with flourescent lighting. If you look on some of the Lupus sites (lupus.org) I think you will find reference to it. But many fibro folks experience this as well. I'm assuming it's a CNS manifestation in either case.
Take care, Nannen - and stay warm!
Post Edited By Moderator (Recoveryme2day) : 2/28/2013 1:37:02 AM (GMT-7)