Hello everyone, I've been reading this forum on and off for months but decided to join to get some advice. Seeing people deal with nearly the exact same thing I am is reassuring but I am still so, so worried.
Last September 2017 I came down with an awful virus...HUGE lymph nodes in neck, armpit and collarbone, 104 degree fever, nightsweats and exhaustion. This lasted for 10 long days before the lymph nodes began to go down. During this time, I got a monospot test that was negative.
As the fever was coming down, I woke up one day with extreme sensitivity to light and an odd headache right behind my sinuses. I felt foggy and out of place, but decided it was just the course of this bug and stayed in bed.
A few days after the light sensitivity began to subside, I began feeling very scary neurological symptoms. I started to get fleeting bone pain in my legs that would only last for a few minutes and when the pain left, the muscle would be left extremely weak. I found myself unable to walk very far, unable to walk down stairs without my legs shaking terribly and feeling like pins and needles, as if they would give out. I started to experience brain fog, extreme anxiety, more sensitivity to light and sound and still swollen lymph nodes, along with more night sweats and terrible interrupted sleep (at its worse, I was falling asleep for 15 minutes at a time. It then settled at 2-hour intervals). I also developed severe back pain and serious digestive problems, but my main problem was the weakness in my legs.
I went to so many doctors and got many blood tests...I eventually was diagnosed with EBV/Mono through the antibody blood test (my IGG was pretty high, and my IGM was positive but just barely positive). They also found that my blood ferritin (iron) was extremely low. I was told that the virus had to run it's course.
It completely uprooted my life. I had to quit my job and move back in with my parents, as I could no longer walk anywhere with my shaky legs or take care of myself. I was previously a very active person, loved going to the gym. I wound up seeing a neurologist and a rheumatologist, who both think that I experienced a form of viral meningitis based off some of my first symptoms. But because I didn't go to the ER that day, we'll never know for sure.
Since I've been here, I must say that I've improved a lot. The night sweats have stopped around 5 months in, my energy is pretty good (no desire to nap at all during the day/very alert), my sleep has slightly improved and the brain fog has lifted. I haven't been doing much during the day, just resting and occasional 10 to 15 min walks with my mom.
However, now 9 months in, I am still struggling with some symptoms. My muscles are a tiny bit better but still pretty weak and easily fatigued. I still occasionally get the "bone pain", which always leaves them weak and spastic, and I often have a resurgence of these symptoms when I get my period. I've been eating SO clean with many antiviral foods.
I am SO, SO TERRIFIED that my symptoms will not go away completely I am so afraid that I have developed CFS/ME and will have to live like this for the rest of my life, it is my absolute worst fear. Two doctors have told me that it is absolutely not CFS but i can't help worrying that it is...although I don't feel tired anymore, this weakness makes me feel like my old body was stolen from me and I have this broken one now. I know EBV can cause anxiety and it is very new to me, but I can't help but panic sometimes. The stories on here give me hope that this is normal and that I will recover, but I'm hoping that others can relate to my symptoms and tell me if this really matches with what EBV can do.
Thank you so much for reading.