Weird symptoms with my EBV, anyone else have them as well?

Posted , 3 users are following.

I was diagnosised with EBV back in August of this year, and I am still showing s/s and just wondering if anyone has experienced some of the same symptoms as me, I am starting to become worried I may have some other type of auto-immune disorder.

Ever since being diagnosed I have had problems with tacycardia, mainly upon standing or when i over exert myself, I have all over muscle weakness/shakiness, frequent urination, heat intolerance and troubles getting a good nights sleep, I feel like my brain just never shuts down!

My symptoms have improved but im still not 100% and that concerns me. I have been to a handful of Dr appts with my PCP, ive been to a cardiologist and most recently ive been seeing an endocrinologist due to having abnormal lab values for my thyroid. So far though everything has been coming back okay, which im grateful for, but I still worry that maybe i should request an MRI of my brain/spine to check for lesions.

Ive been following this group for a while now and its given me hope throughout this terrible journey, so im hoping someone can relate to my symptoms.

Thank You!

0 likes, 3 replies

3 Replies

  • Edited

    Hi Red,

    I have had all the symptoms you describe. I was diagnosed four years ago and it has been a long road, you will recover however. I think the first year is the worst and the gradual recovery follows.

    • Posted

      @Mono_too thanks for your reply. makes me hopeful that one day i will recover.

  • Edited

    hi Red it seems we are in the same boat. all of the symptoms you have i also have plus a boat load more. i had an MRI on my neck and back as the pain was excruciating and terrifying. it came back normal, no nerve damage and beginning sings or arthritis but that's nothing scary. I've been to about 10 different doctors and spent thousands of dollars trying to figure it out... i new what i had.. but they needed to test test test... because doctors understand very little about this it is very hard to get answers. thank god for one very special young E.R doctor. She informed me what i was experiencing was post viral fatigue... feels more like post viral death but cool.. anyway 3 doctors agreed it was ebv.... went back to my g.p after all the investigations with specialist only to have my g.p doctor refuse to acknowledge it and told me its all in my head!!! (even though you can still see my tonsils are swollen and my glands are inflamed 4 months later!!) if i fully recover im going to become a nurse. but anyway.. that E.R doctor was a heaven send because she put me on amitriptyline for my neck and body pain.. my neck pain was so bad i was quite suicidal. one week after taking it my pain is barely noticeable and i can actually think clearly and actually function. i can not imagine staying in that pain for a minute longer let alone a year as some have done on this forum. but even though the pain is dulled, i can still tell im battling ebv. my joints and muscles hurt so much after doing a few simple tasks. i get extremely tired and exhausted. i quit my job as i was in excruciating pain trying to work only 3hrs a day.. those 3 hours plus other daily tasks were killing me. I'm resting now and feeling much better for it but i know i have a long scary road ahead... keep in touch if you like i think we could be a great support to each other. kind regards Ren

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