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?

I’ve found my people.

I got diagnosed with GF when I was around 17(?) when I went to the doctors with horrendous tonsillitis. I thought I was just ran down with 6th form and that’s why I was tired all the time beforehand.

Then it hit me, I spent four months in bed with 6 weeks of that having to sit down between my bed and the en-suite for a rest before using the loo.

I somehow passed my A-levels but shouldn’t of gone to uni. For three years I was wiped out. Having to sit on the stairs to rest going between my room and the kitchen when I had the worst flare ups.

Now I’ve learned how to listen to my body I don’t reach rock bottom (apart when I had covid I thought I was just having another flare up).

I’ve been to countless doctors but after seeing ‘probably mental health as family history for mental health’ when the doctor left the room was it. Another mentioned ‘it could be ME’ and that was that.

I also back PP of nutrition, a friend of mine got GF in 6th form and her parents got her a nutritionist and it was a game changer. But it’s also the worst thing when you’re exhausted and the idea of making home made soup sounds like a marathon.

More research I think is needed.

Yep I had it when I was 19. I was told by a doctor that not only can it knock you for life, CFS can suddenly pop up as a result of it, many years later.

@TheHoneyBadger

On the psychological side I used to feel this awful guilt and shame when I exhausted and run down but technically 'shouldn't be' iyswim - like everyone else is coping why can't I, am I just lazy, weak etc. I can remember being shouted at through thick fog to get up and go to school when it felt like a ton of bricks where pressing me into my bed and I couldn't even raise my head. I hope nowadays that more advice is given on the importance of rest nowadays when people contract GF.

I tend to be as respectful as I can be (whilst fulfilling responsibilities that can't be avoided) of my energy levels and health nowadays. I know taking steps before I reach the stuck to the bed stage can make all the difference and I know real friends etc will understand if I say do you know what I can't - this week I HAVE to rest.

My 20's were such a rollercoaster between being my capable and 'on it' self and a slug who couldn't move.

That’s so similar to me. I still hold shame for being told I was lazy.

I had glandular fever in 6th form and I really think it changed me too. And I did appallingly in my a levels too! I blame that on the GF 😄

'They' are looking into the correlation between GF and Multiple Sclerosis.

A significantly high number of people who have MS also had GF previously.

Apparently 100% of people with MS had glandular fever but not 100% of people with glandular fever get MS.

Hence why you should take high dose vitamin D!

(Helps prevent MS)

@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?

OP not sure if this will help or not but sounds like an auto immune reaction, and when I traced back my celiac I'm pretty sure it might've started around the time I had glandular fever. There's quite a few auto immune conditions out there, just in case yours might be food related might be worth checking for celiac disease?

I think GF is fairly common is it not though?
I know of a fair few people who have had it and had no adverse reactions. I wonder if the issue is not resting when you have it. I didn't know that I had it - can only remember having a sudden searing headache one evening which my parents called the doctor for. He said it was fine so from the next day onwards I just carried on life as normal. Chances are I possibly did have other symptoms but my parents would dismiss things like that as me "putting it on". But then a few weeks later the debilitating fatigue started to hit. I'd think I was better after a few weeks, go back to school and then it would start all over again. Went on for months.

I have had it for 20 years, and when I consulted an endocrinologist he said it was very likely due to Glandular Fever from years ago. He suggested rest and sunshine and to nap lying flat, twice a day. I was disappointed there was no magic fix, but I think the lifestyle advice was sound.

I had a really bad cfs crash last year, almost the worst I've ever been. It coincided with the first lockdown. I had bought a pulse oximeter in case of illness, and was really shocked at my high heartrate. Research online led me to a lot of advice about pacing to keep heartrate under a certain level, so the lying flat did help. But it's so boring, lying there waiting for the body to build up a tiny reserve of energy, like I'm a dodgy battery which takes ages to charge!

I say almost the worst I've ever been, the previous time I ended up in hospital on a drip. I also have IBS and the worse the fatigue, the worse my gut behaves. I suppose it's the stress hormones running riot. I also get the glands up, and, oddly, sore eyes and irritated bladder.

BTW I developed numerous allergies around the time I started getting fatigue, so have a very plain diet (no gluten or dairy)

Anyway massive sympathy to all!

Btw I am retired so can rest these days, so really I am so much better off than many!

Me too! Had it when I was 18. Hospitalised with it due to severe jaundice as it badly affected my liver. For 18 months afterwards I was exhausted. Had been a sporty teen, playing at county level in tennis. Post GF/EBV I gained weight and I’m exhausted. I can nap for hours, and have very little energy. It all changed due to GF.
I’m glad I am not alone, but I really wish none of us still had this.

I am sure mime was partly from not resting because the first GP who saw me told I was depressed, and to do things to pick myself up, so I got a very physical waitressing job (I was between school and Uni). I felt so dire all the time and just kept going.

it felt like a ton of bricks where pressing me into my bed and I couldn't even raise my head.

I so remember feeling like this, lying on my sofa. And the shame of thinking people thought I was just lazy.

This is really striking a chord with me! I had really bad glandular fever when I was 20 and spent two months basically in bed at uni. The doctors said I had extremely high levels in my bloodstream. Since then I often struggle with fatigue and when stressed always get swollen glands and just feel rubbish. I had a particularly bad spell in sept last year just after a period of very high stress. I ended up in hospital with suspected sepsis but it wasn't that and after a few days they just discharged me as 'probably viral'

I've sometimes wondered if I had fibromyalgia but I don't have the joint pain. This is making so much sense though! Does anyone have any books or good resources I can research more

Will start on the high dose vit d ASAP

Me to I was 16 and felt like I slept for the next 2 years! I definitely get more tired than the average person and at least twice a weeks go to bed really early and sleep for 12 - 13 hours. I take vit d and iron everyday and feel this has helped, I don't need naps anymore but I definitely was never the same after gf and that was 25 years ago

Oh my !

Yes to everything you've all said.

I'm another 30 year GF lifer. About 1991. In a school year of 180 days, I made 78 of them. It controlled my life as a teen and at Uni and my early career.

Interestingly, I have had Covid (not test diagnosed as last year) and it bought my GF post viral right back to life. It has now settled down a bit more. I'm wary though. It wasn't Covid post viral - the symptoms are exactly what I'm used to from GF. Throat, armpit and groin glands swell. Sore throat. Heavy aching and foggy mind. Exhaustion.

GF at 14.
Tonsillectomy at 23 finally helped with the ability to get on with things.

I've learnt:
2 litres of good quality water a day keeps mine at bay. Filtered at least. It's all I drink pretty much.

Co-Enzyme Q10 supplement really helps.

Off to read about pituitary glands - I've hit early menopause now and my poor body has suffered all sorts of random weirdness of late!

Just wondering how everyone felt after their vaccine? I haven't been vaccinated because I'm nervous that my gf will kick off again.. or how people who got covid were effected?

@Blissbiz

Just wondering how everyone felt after their vaccine? I haven't been vaccinated because I'm nervous that my gf will kick off again.. or how people who got covid were effected?

Completely fine. If you have any autoimmune issues you'll likely be more at risk from covid than average, so it's doubly worth getting it done.

@Blissbiz

Just wondering how everyone felt after their vaccine? I haven't been vaccinated because I'm nervous that my gf will kick off again.. or how people who got covid were effected?

Felt crap for about 3 days with the first one and one day with the second. AZ.

Oops. Posted on the wrong thread.

I am the same. GF at 20, didn't know it was GF. Spent six months just being really unwell, sleeping whenever I wasn't at Uni lectures and catching every virus going. Finally GP did bloods and said GF, but no advice about management of symptoms. Kept crashing and burning through Uni with relapse after relapse.

Finally years later researching fatigue I read about CFS/ME and began to understand. It got better with time, tai chi, yoga and meditation helped. I was still struggling with fatigue, but managing to work and rest more on my days off to function.

Then I caught Covid and now have long Covid. Back into post viral fatigue GF type symptoms with added extras.

Covid vaccine exacerbated some of my long Covid symptoms at for a few weeks, but they have settled back down.