Recovery from CMV - what to expect?

August 20, 2018 9:21 PM

After six weeks of misery I've finally gotten a 100% diagnosis for an active case of CMV (Human Cytomegalovirus) Looking for stories/data points of those who have been through this! Specifically - how to avoid developing CFS or any other chronic condition post-recovery.

Looking for anecdotal evidence, YANMD etc etc...

The doctor says the likely culprit would have been from changing nappies (have a 2yr old and 5yr old, both in day care), but it took six weeks and two rounds of blood tests to get a proper diagnosis.

Apparently most people have the virus, but it stays dormant, but I developed some sort of very severe Mono-like symptoms that knocked me out for nearly a month. They ruled out EBV as well as anything else nefarious, including doing a brain CT scan (I was getting strange ocular disturbances, like Aura), and then finally got a confirmed CMV diagnosis six weeks after the initial onset of symptoms.

Doctor says it can be up to three months to recover and warned to take it easy until I'm 100 percent. This is very hard for me to do as I'm a very active person, and rely on exercise specifically for maintaining mental health.

For anyone else who has had this -

-How long did it take for you to get back to normal/recover?

-How did you know when you were better? At this stage the symptoms are really subtle, but still there. (weird vibrating body/muscles, joint pain, vision disturbances, anxiety)

-Finally, did you suffer any relapses or have any words of caution to avoid them? I found that in the months leading up to my big crash that I would get these very strange flu-like symptoms for 24 hours on the weekend following my normal 5 day exercise regimen (m-f) - I'm not sure how/if this is related to the CMV, but after hearing stories about people starting activity too early from Mono/EBV and developing CFS or other chronic conditions, I'm a bit anxious about restarting sport/exercise too early!

Thank you!

posted by LongDrive to Health & Fitness (5 answers total)

Best answer: When I was 19, I got hit with CMV mono so hard that I had to get HIV tested monthly for six months because my doctor was convinced I must have been immunocompromised to have been affected as much as I was. I also had to get liver function tested monthly during that time. My case was really severe, to the point where I had to withdraw from college, and it took the better part of a year for the fatigue to really go away. My immune system never fully recovered, so a two day cold for my family is a five day cold for me. While much of my experience won't relate to you, I don't know how common relapses are, but it's been 20 years and I do feel it if I push myself too hard. I've had one major relapse that lasted about two weeks, and countless days in bed.

You're the first person I've encountered that has also been through this, so I hope you get more answers, especially since my experience was so extreme.
posted by Ruki at 10:13 PM on August 20, 2018

Best answer: I had it in my early 20's. It was pretty rotten. I had liver inflammation as well so if they haven't checked your liver enzymes, watch for abdominal pain/digestive issues - had to not drink for a while, not that I had any desire to do so...or to do much of anything else. I did not have relapses, but if I'm going to be honest, my energy levels weren't back to normal for about four months. I had to quit my job but because they were being schmucks and requiring me to go host public events an hour and a half's drive away. I did one and cried in the McDonald's drive through waiting for a shake so I could get my energy up enough to drive home. My resistance to infection is just fine now, but I do have some autoimmune issues, can't say whether that's in any way related - just that I'm not normal in that regard.

Please be careful with yourself.
posted by wellred at 5:04 AM on August 21, 2018

Oh and that was 20 years ago but if you have questions you can memail me and I'll do my best to remember!
posted by wellred at 5:07 AM on August 21, 2018

Best answer: I had a nasty case of CMV about 20 years ago. My doctor initially told me, "Two months flat on your back - no getting up except to go to the bathroom." I was a single mother at the time and that was simply not possible, so her second option was two weeks flat on my back, then 2-3 hours of work for the next 4-6 months unless I tired before 2 hours, then my boss had to agree to let me go home and rest. It was brutal, but I honestly didn't have the energy to do anything else. I followed her directions, and thankfully I had a lot of sick leave saved up. I used every bit of it.

It took a full six months to begin to feel like I had any energy at all, then a good year until I felt somewhat back to normal. Twenty years later, the only lingering symptom I have is deep bone pain in my legs when I get too tired. I've learned to quit what I'm doing and rest when that happens, then lighten up my schedule for the next few days.

My advice is to follow your doctor's directions to the tee. It will not be easy, but it's your best bet to avoid long-term effects. I'm sorry you're going through this! The only other person I've ever known who had CMV was the person I caught it from at work.
posted by summerstorm at 8:58 AM on August 21, 2018

That’s so interesting that all of us that responded all had it at roughly the same time.
posted by Ruki at 10:15 AM on August 24, 2018