9 months and feeling better, light at the end of the tunnel
Posted , 3 users are following.
I wanted to come back here and post a positive update for anyone needing abit of hope, I found posts like this extremely helpful when I was at my worst. Glandular fever is no doubt the worst illness I’ve ever had, and a lot of doctors don’t understand how bad it can be!
Recap: I became unwell in October 2020 with swollen tonsils, unbearable sore throat, a high temperature and generally feeling very unwell, which got mis-diagnosed as tonsillitis for 3 months until I had a blood test which confirmed was glandular fever all along.
In the last few months I have seen several improvements. I no longer have a sore throat, and my tonsils no longer bother me (they used to ache so bad!!) although they’re still a little swollen ENT doctors have assured me they will go down over time.
Going back a fare few months ago (probably around 5 or so months ago) I was having what I call “flare ups” they used to last around 2 weeks of feeling rough, bunged up, sore throat, malaise etc, and they would come every 3-4 weeks. This became less and less over time, and currently these flare ups are no where near as bad as they were! They now last a couple of days, the symptoms really are no where near as bad as they once were, just a slight dizziness and ‘off’ feeling, with a slight hint of cold symptoms (no sore throat though thank goodness!!) I have noticed since having glandular fever my voice has changed and it kind of sounds like I have a sore throat without actually having one! Weird.
I’m finally seeing the light at the end of the tunnel and feeling a whole lot better than I was 9 months ago! This forum has really helped my health anxiety, I’ve never experienced health anxiety in my life but this completely spiked it and I was always thinking the worse and I know so many others do too! It doesn’t help that all the nhs websites etc say you’ll recover within 4-6 weeks and when it’s much longer it makes you feel like something else must be wrong when that’s simply not the case, it affects everyone differently, and I’ve realised that now after months of worrying.
Side note: I had a blood test done back in April which came back that I was vitamin B12 deficient, I’ve heard others on here and friends say when recovering from Glandular fever their B12 was also stripped, if you’re feeling extra unwell it’s worth asking your doctor to do a blood test! Been on tablets for 3 months to get my levels back up, and went for a blood test today to see if it’s worked (fingers crossed!)
(My main symptom of this was extremely sore patches on the corners of my mouth and skin around my mouth that looked like a rash, that persisted for 5 months until I finally spoke to a doctor about it)
Overal feeling a lot better, and a lot more positive about feeling 100% myself soon!
Edit - Ive just realised its 10 months
1 like, 3 replies
NickO101 sophie10008
Edited
Hey sophielou_
Glad to hear you are recovering, I don't think doctors truly understand the severity that Glandular Fever/EBV can have on some people as most either recover quickly or never really show symptoms. Have you considered getting vitamin B12 shots, I'm getting my first of 3 tomorrow.
I think everyone who's struggled with something like this long term is bound to have anxiety over it. Especially because there is no concrete answer to when you'll recover and many symptoms can mimic awful diseases.
I'm around 6 months in with EBV/CMV and like you I have days where I'm totally malaise'd out. I also have very stiff and achey joints which I never had prior to feeling sick but slowly I'm getting better.
Here's to us and others on this forum being 100% soon because this sucks.
sophie10008 NickO101
Posted
Hi Nick,
I totally agree with you! It seems as though there’s just not enough research about it and how bad the symptoms can get as every doctor I have spoken seems to think it is more like a flu, from my experience it is absolutely not.
I’m so glad to hear you’re getting better. Some days are worse than others. A couple of months ago I was having more bad days than good, whereas now I can definitely say there are far more good days, hopefully for you too!
Do you get your B12 shots from your GP surgery? Definitely something I’d be interested in as taking tablets everyday for the last 3 months has been a pain. I had my blood test results today, and my B12 has gone up and I’m now in a healthy range. Would really consider getting the shots to help with fatigue, that is a symptom I’ve been left with since glandular fever.
I also have achy joints and stiffness, especially in my neck and back. It seems to be a common symptom which I’ve read most people experience towards the end of their illness, hopefully we’re now through the worst of it and will soon be 100% recovered.
Sim54425 sophie10008
Posted
Thanks so much for writing this update! It really helps to hear positive stories of people getting better 😃
I'm at month 7 of my post viral symptoms and starting to see some improvements too. I originally contracted glandular fever almost a year ago, but made a full recovery after 6 weeks. I was completely back to normal for 3 months and then I started to have GF symptoms again and my EBV test came back positive for active infection.
In the first few months of this year I had very specific intense symptoms, whereas now it just feels like an overall 'stunted' feeling with some aches here and there. My vision still gets blurry at times and occasionally i see floaters, but I have moments where I almost feel normal and I am starting to see a light at the end of the tunnel too. I think it still might take a while before I'm completely 100%, but I'm hopeful.