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?

Me too OP!

I would definitely mention to your GP about this. I have ME/CFS and this sounds a lot like me. There are coping strategies that you can use and ways to try and improve. But you do need to speak to the GP to rule out anything else.

Me too. I have shorter periods where I may feel energised for a few days even, but I could happily have a nap or lay down rest every day, and still sleep easily from 9pm that same night.

I didn't know I had glandular fever, until the post viral fatigue hit however long later and they tested for it, which is apparently fairly common. The PVFS was about 6 years ago now.

I was/am the same, I was diagnosed with CFS/ME.

I have gradually gotten better but probably have an episode once every couple of months where I can not get out of bed (more frequent pre pandemic, wfh and have a much slower paced life now)

There isn’t really many treatments, I was offered and went to group CBT sessions for about 6 months, it could be worth mentioning it to your GP, I haven’t seen mine about my condition in the last 25 years - I found the cbt useful in learning how to live with it long term though

Me too. I was never really ill as a child. Didn't catch colds etc, never had chicken pox as a child despite my mums best efforts. Had GF when I was 12/13 and have been pretty much constantly ill, exhausted, generally groggy ever since. I swear something happened to me.

I am slightly hopefully that the funding for long covid treatment will finally give ME suffers some better care too!

Same. Giving up sugar and eating low carb helped with the fatigue massively.

I wonder this about myself too, except that I can’t sleep in the day or I feel worse (groggy and disoriented). I had GF about 5 years ago and it’s only recently dawned on me that I’ve not been the same since. I’m currently pregnant and the fatigue is debilitating, even though I’m in the second trimester. Like you say, I have the energy for work and not a lot else. My immune system is also horrific - again not helped by being pregnant - and all of this combines to just make everything feel like it’s more difficult than it would be for a normal person (or the “old” me before GF).

Sorry, I don’t have anything to contribute really but thanks for posting this as it’s got me thinking again. I hope the GP can help you

X post @FreeBritnee, that’s interesting, thanks. I gave up sugar for a month earlier this year and usually eat fairly low carb, I definitely need to try it for longer. Unfortunately being pregnant all my body wants is carbs!

Thanks for all of your really helpful responses thus far, including to know I'm not the only one.

As @MummytoCSJH says, I swear glandular fever "did something to me"

Yep I'm in the club too. Had HF 23 years ago and I've just been diagnosed with ME. I was v sporty as a child before GF but now the fatigue is so crippling I can never exercise consistently enough to get fit. I think it changed my personality too. Im very negative and bitter about how my life has turned out. Wish there was a treatment/ more answers as I can just feel my life slipping away from me ....

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.

Have you had your vitamin d levels checked? I’m not suggesting that your fatigue would be down to that entirely but in the UK most ppl are deficient. You actually need quite high levels of supplementation to get back to normal levels.

My GP thought I might have glandular fever and did a Vit d test almost as an aside and it came back chronically low.

Mine was 23 years ago too @withinacceptabletolerances

I was a healthy, sporty child, I did everything - swimming, hockey, cross country, then one summer I could barely get off the sofa. The GP told me I was depressed until another tested me for GF. I don't think I have been quite the same since. I get very overwhelmed by too much going on and very overtired (since age 19).

I take vitamin D Deux but yes, my levels were also low. It's a good thing to check. Or just take it anyway.

Me too. I was never 'well' again. Always knackered, in pain, eventually diagnosed with fibromyalgia some years later. I definitely have a before gf and after gf me.

My sister had Glandular Fever as a teen. Developed into Epstein Barr and now POTS. Took her years to get a diagnosis.

She controls hers with diet and exercise. It’s extremely hard work.

My glandular fever popped up every few years. I doubt a GP would help at all but I saw a healer and did various alternative treatments which finally knocked it on the head.

I had it when I was 16, when I am run down at all since I still get waves of it

@Sadsiblingatsea that's interesting, what did you do?

Me too, including getting the swollen glands whenever I’m run down.

Another one checking in. I had it when I was 5 (nearly went into kidney failure) then again when I was 18.

I’m just tired all the time. I’ll be honest, I had the shock of my life when I had two uncomplicated pregnancies.

OP I was the same. I had glandular fever when I was 19 and was utterly exhausted for the next 30 years. I recently found out I have severe sleep apnea and being treated for it has changed my life. I've also just discovered that glandular fever is likely what triggered the sleep apea. So I recommend asking for a sleep study to be done.

My dh got it in his 30s. It affected him for several years - couldn’t drink beer, tiredness, He still has lucozade in the car in case his sugar levels dip. He is better now, but is prone to be more run down than and tired than he should be.

Have you been tested for coeliac? Sometimes feeling crap is the only symptom. I have felt like a bouncy castle with the generator switched off for a few years now and was diagnosed in January after my hair started falling out again.