Glandular fever flare up after getting better (5 months after diagnosis)
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Hi everyone,
Just wondering if anyone else has had a similar experience to me. I've read lots of other stories from people with glandular fever who've been sick for months, but my case is a little different, as I actually made a normal recovery (or so I thought).
I was diagnosed with Glandular fever in late July 2020. I was quite lucky with the timing as I had just entered a period of time off of work. I was able to put all my focus on resting and getting better. The first couple of weeks were the absolute worst with fevers, sore throat, nausea, fatigue, anxiety and liver issues. But I started to get better, and by the 6-8 week mark I was feeling completely normal again. My blood tests reflected that as well, for the most part. There has been 1 marker that has never quite got back into the normal range, but my GP didn't seem worried by this.
For all of October and November I felt fine, but for some reason at the start of December I started having issues again. I suppose an important thing to note, is that I did go back into full-time work at the start of November, so I'm not sure if that was a catalyst for my symptoms returning. It started with some on and off nausea/lightheadedness and then by the week of Christmas I had also developed achy glands, fatigue, headaches and anxiety.
My GP has run pretty much every test out there to make sure these symptoms weren't caused by a different illness, but they've all come back normal. I am convinced that this a glandular fever flare up. I did a bit of research on how to interpret my EBV test, and I think it's definitely possible that my body is still trying to beat this virus. I had an initial test in July that showed: VCA IgG: Positive, VCA IgM: Positive, EBNA: Negative. I had another one a few weeks ago and that showed both VCA IgG and IGM are still positive. The only change is EBNA was now 'equivocal'. From my understanding if my body had completely gotten over the virus VCA IgM should be negative and EBNA should be positive.
I guess I'm just looking for some reassurance that what I'm going through right now will eventually get better. It's been absolutely crushing to think that I had made a normal recovery, and now I feel back to square 1 again. I'm also worried about things like post viral syndrome/Chronic fatigue. I'm still trying to work at the moment, but am having to take sick days regularly. Should I take another full break off work?
Any responses much appreciated 😃
0 likes, 6 replies
emma198181 Sim54425
Posted
Hi there,
I got sick with glandular in August 2019, and I still experience setbacks like what you're describing. They usually come when I push myself physically or mentally - exercising more, or taking on new stress. They're never as bad as the initial infection (when I was convinced i was going to die), but they're still upsetting. My bloodwork never shows activated EBV either, but I've had these physical issues ever since the virus and I know it's the root cause.
You're doing well for 6/7 months in. It will get easier as the months go by, I promise. Try to rest as much as you can when it flares up.
It's a sh!tty virus that is so destructive 😦
Sim54425 emma198181
Posted
Thanks so much for your reply @emma198181 😃
It can feel a bit lonely and hopeless at times with this virus, so it really helps to hear encouragement from people like yourself.
Do you have periods of feeling pretty much back to normal in between your setbacks?
I've noticed a slight bit of improvement during the daytime since I last posted so I guess that's progress. The most annoying thing that I'm dealing with at the moment is I keep waking up around 4am no matter how hard I try to sleep in. I found a few other threads where people have said they experienced a similar issue. Hopefully that will pass over time.
It truly is a nasty virus! Wish I got it as a young kid (I'm in my 20s).. they say it doesn't affect them as bad.
emma198181 Sim54425
Posted
I definitely have normal periods in between. and the flare ups are getting much more mild. I think part of the problem is that the textbook answer from doctors (certainly the doctor that diagnosed me) is 'a couple of weeks and you'll be fine.' But i'm yet to hear about an experience from anyone on this forum that resembles that timeframe. From what i've read (and I trawled the posts when I was diagnosed, to save my own sanity), most adult sufferers struggle for months, if not years.
Strangely enough, my case is a reactivation - I had GF when I was a teenager, but at that point all that happened was I'd get home from
school and sleep for a couple hours. Nothing
like this nightmare.
Sim54425 emma198181
Posted
So glad to hear that your flare ups aren't as bad, and that you are able to have periods of feeling normal 😃
That is so true about doctors responses! My GP isn't even convinced that my current symptoms are caused by GF, despite my EBV test results...
I find it super frustrating and upsetting. I know that the symptoms I'm feeling right now are a milder version of what happened to me in July/August.
I was able to speak to a different doctor when my regular one was away and he said that he agreed with me and that I was either still dealing with GF or having a post viral response. So that was reassuring, but also kind of confusing.
What are the symptoms that you still deal with in your flare ups? The main ones for me right now are: brain fog/feeling out of it, fatigue, headaches, neck ache, mild nausea, anxiety and mouth ulcers.
emma198181 Sim54425
Posted
At the start of last year (6 months in) I was still dealing with brain fog, arthritis, tinnitus, dizziness, sinus pressure, the weird inner hum/buzz/nerve tingling, muscle twitches, and fatigue, along with the odd random symptom that would appear for a day or two, freak me out, the leave again.
A year later, I get very occasional dizziness and muscle twitches, still a fair bit of sinus pressure, and the weird hum/buzz when I wake up some mornings. But it's not debilitating anymore (thank goodness).
The road to recovery is long, but you'll get there. EBV is diabolical.
Sim54425 emma198181
Posted
That's a relief to hear that for yourself the symptoms are not debilitating anymore.
I've found over the last 3 weeks that I have started to make some good progress in my recovery. But unfortunately just a few days ago I sort of went downhill a bit again. I think I may have just tried to do too much last week. I increased my work hours and had a few social events. Ended up getting bad nausea again, the dizziness got worse and head/neck ache as well.
EBV is so brutal, but I'm trying to remain positive as much as I can. Worrying and getting upset just makes it all worse.