Posted 8/5/2018 11:43 PM (GMT -7)
Hi, I became infected with CMV and Epstein Barr simultaneously last June 2017. I feel like my life has come to a stop. I had a couple of months where I started to feel a bit better but nowhere near my former self. Just before I became ill I was an avid hiker and could easily hike 12 miles of hilly trail. I was loving life and planning to hike the 6pack of peaks here in California. Now I am exhausted and am in almost constant joint pain and muscle weakness. I have to use a mobility scooter if there is extended walking on outings with my 4 sons. I only have a limited amount of energy and if I overdo it I will be bed ridden for days following. I have a significant amount of stress in my life as I am raising 4 boys, 3 of whom have an autism diagnosis. Before testing positive for CMV and EBV, the doctors were testing me for Lupus and Cancer. I have constant high WBC counts, joint and muscle pain, alopecia areata, several types of eczema, chronic sinusitis, asthma, reactive airway disease, extremely sensitive to sunlight and heat, extreme fatigue, migraine headaches and headaches at the base of my skull that cause terrible pain when I move my head. My muscles feel like I did an extreme workout and ache constantly during a flare like I'm in now. My joints hurt so bad! I have arthritis in my left ankle due to reconstructive surgery when I was 15. But now all my joints feel like that, but I tested negative for rheumatoid arthritis. I tested negative for the Lupus antibodies as well and no cancer thankfully. Stress definitely makes my symptoms flare, I recently broke out in tiny microblisters all over my lips and the tissue around my mouth just past the lips. You can't tell they're blisters unless you look very closely. My lips and surrounding flesh look red and irritated. The tiny blisters eventually weep and my lips peel. I used to get the same thing on my hands when I was pregnant with my 3rd child. It is really itchy and painful and kind of feels like the tissue is sunburned. My hair is falling out again and I really feel like a shadow of my former self. I also have the red malar rash that accompanies Lupus, but don't test positive for Lupus. My chest is also very red. I'm afraid that I will never get better or find out what this is or how to treat it. My kids need me to be well.