Don't think I've ever been the same since having glandular fever, 30 years ago!

[largeprintagathachristie]

I had glandular fever when I was 20. That's now 30 years ago.
But it's still a 'before and after' in terms of how I feel, and it's dawning on me, very late, whether I might have come away from it with Epstein Barr or some kind of chronic fatigue. And whether there's anything I can or should be doing now?

When I had glandular fever at 20 I don't think I rested properly or for long enough or was told much at all in terms of health care.

Today was a typical day for me, including feeling completely exhausted after a very normal four-hour outing. Aching all over, absolutely craving sleep (after a full night's sleep last night).
Had a 2.5-hour "nap" this afternoon. Sometimes I can sleep for four hours during weekend days and whenever I can

The glands in my neck come up a lot and sort of pump whenever I'm even slightly under the weather and usually a migraine isn't far away.

In case anyone suggests HRT, yes, I think that might help me generally and I've started six weeks ago, but what I describe above is decades old and I could have written this exact post in my mid-twenties or thirties. It's definitely limited my life and I've also felt a bit embarrassed, if you know what I mean. I'm not lazy; the fatigue is just overwhelming. I hold down a job but there's not much left over.

Is there any point in mentioning this to a GP at this stage?

@dalrympy

Glandular Fever can be horrific. Some one I used to know well ended up in a wheelchair from it at age 18.

This was around 30 years ago. I think there was something very bad going around in that strain as another friend says she never really recovered either though obviously not as bad as the other girl.

That’s interesting. My dh had it about thirty years ago, 1990 or 1991.

And me. Had it early teens, since then need much more rest and sleep. Really struggle to cope physically and mentally on little sleep. If I get overly tired my glands tend to come up and I feel ill. I think I’m more prone to illness/milder illnesses seem to knock me out.

Same here. I had it in teens and very much a before and after self. It wasn't till I saw an American GP at uni to get anti depressants that I had a full history done and he suggested that it was the glandular fever that had set everything off and it wasn't unusual at all because of adrenal strain, inflammation etc.

Not read the thread yet but just popping on to say that I am the same. I actually didn't know I had glandular fever until I started suffering with long term fatigue, unable to go to school as I was felling asleep at my desk. Ended up that my parents paid privately to have a full MOT done as GP and hospital couldn't get to the bottom of it. Blood test picked up that I had had it.

If I ever get run down I will get a recurrence of the symptoms- sore throat and EXTREME fatigue. In the same way that other people's cold sore viruses flare up when run down.

I actually had no idea this was even a thing and didn't put 2+2 together until I read a thread on here a couple of years ago about someone with similar.

Off to RTFT now!

This is interesting. I had GF in my 40s. I did recover fully, but I've found my glands come up at every tiny thing. Being overtired is enough to trigger it.

It’s scary how many people suffer long term and how little is known about it!

Has anyone found anything that helps at all? I've tried so many things over the years but nothing seems to give me any more stamina. I also have endometriosis and a problem with my back and just feel so overwhelmed by it all

It's also made a lot of sense to me in terms of the amount of time I've had to take off work for illness. Sometimes I would wake up in the morning and just think "I literally cannot get out of bed" and other times I would have a cold and need to be off. It baffles me when I see on here people saying "It's just a cold! Of course you can go to work/school!", because for me, getting a cold absolutely floors me, especially the first couple of days.

I've been tested for many things - vitamin D, coeliac, inflammatory disorders, rheumatoid factor and many other things but it always comes back fine. I can only assume it's the Epstein Barr.

Boost hell, I could have written this. Had it at 15, 26 years ago!

Me too! I had it when I was 14, and was hospitalized for a week. That was nearly 30 years ago. I only need a hint of infection and my glands blow up. After the first Covid jab, one of my arm pits was like a balloon!

A doctor did once tell me that I had ‘recurring glandular fever’ when I was in my twenties.

I had it when I was 18 (am 49 now). I am fine, but for about a decade after I had it, every little cold etc wiped me out, brought my glands up and gave me a throat infection.

Only thing that helped me was completely cutting out sugar. Probably due to alleviating inflammation. Similarly steroids for an asthma attack made me feel better for a week or so.

I have found it 10 x worse since having children. I had a very long labour with three nights of no sleep with my first and I think that triggered something off - either reigniting the EBV or something else. Never been the same since and I think the stress of children just exacerbates it.

Another checking in. Had GF in my late teens, just over 30 years ago.

Health has definitely been affected since. I have to pace myself and have a tendency to crash health-wise if I’ve overdone it (yes to glands flaring up, my early warning system). Interestingly I improved during/after my pregnancies.

Really interesting to read others experiences.

I had it 33 years ago. I feel ok now. But it lasted decades. I reckon it got better when I started taking prescription vit D in france which is much much higher dose than UK.

My dad had GF. He was ill for years - exhausted, much like MS - until a GP sent him to an endocrinologist and they diagnosed a problem with his pituitary which was probably related. He was put on steroids and it changed his life. It was easily resolved and repeatedly missed. Mentioning just in case it helps anyone.

@newnamesameold

Boost hell, I could have written this. Had it at 15, 26 years ago!

Me too! I had it very severely age 14 (now 48). I was very tired and had memory issues for a year or so before getting much better but I did a sport to County level before that and was tipped for National but I never got back to where I had previously been. I never seem to have much energy and can easily sleep 12 hours or more, I always just thought I was a bit lazy

Sorry meant much like ME. Or chronic fatigue. Not MS.

I got severe post viral syndrome after gf in my teens, never felt very believed. Generally recovered but never to the same levels of energy, stopped doing sports that I'd previously done to a very high level, but sort of fine and always felt a bit silly if I tried to say anything as people are so sceptical about fatigue. Then in my 30s developed an autoimmune condition that is rare but unlike post viral syndrome or others, is easily tested and confirmed via lab results. They said they couldn't work out why, these things happen etc, but turns out that a majority of the patient group have had confirmed glandular fever in the past, with far higher rates than in the general population. They're doing a study to look into it. If it does turn out it was gf I'll be really sad, but also a bit vindicated that it really did have a huge effect on me physically.

Makes me wonder how many of these 'protect the vulnerable and let the rest of us live our lives' younger people are going to feel if they end up with complications from covid.

Thanks for that @upthefrogs . I had GF when I was 16/17 and was off school from August to February. I had it again when I was 25 and that time , despite all clinical features of GF according to my notes, I was sent to a psychiatrist, who attempted to persuade me that the fatigue etc was all in my head.

In my fifties, it was finally discovered that the Epstein Barr virus had damaged my pituitary gland. Hormone replacement sorted that out and I now feel like a new woman. At 65, I finally have a tolerance for alcohol, which I never had before, and more energy than my DH.

Yes he feels like a new person - struggled through work and life for years when it could have been easily resolved which is rubbish but at least addressed now.

Interesting. I had GF at 18; absolutely knocked out for weeks. Over the 40 years since then I've had one or two days a year when I've have an 'echo' - sleeping for 20+ hours and then a couple of days hangover.

Same here. Over 30 years ago I had that wretched illness and was finally diagnosed with ME/CFS about 15 years ago.

There’s a link between Epstein Barr and MS. I had glandular fever at 21, diagnosed with CFS then MS. If ever my daughter contracts glandular fever I will be chaining her to her bed to rest! It’s a horrible illness.

Same! Had it as a teen 25 years ago and I would say it took me 10 years to noticeably recover. But shortly after that I had kids so I just assumed that tiredness and muscle weakness was to do with that (or laziness) but beginning to think otherwise reading this thread.
I was listening to a colleague who has long Covid and I tried to say that I felt similar after glandular fever and she kind of dismissed that it would have such a long term impact.