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?

lenny I had GF at 13, spent large parts of the next 30 years struggling with long bouts of fatigue and in my 40s was diagnosed with MS. Like you I worry my dc will get GF.

@OverTheRubicon

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.

Do you mind sharing what autoimmune condition you have? It's ok if you don't.

@PTW1234

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

I think this too. I have found it interesting how seriously long covid is being taken. Considering how sceptical medical establishment were//are of ME/CFS.

The GP I saw took bloods after I had a painful lump on my neck (for many weeks/several months) as a teenager. He said I had antibodies for GF so it couldn’t be that. Looking back now, nearly 20 years later, I think I probably still had some form of active GF or a recurrence of it and the on-off severe fatigue and generally feeling “out of sorts” most days until well into my 20s was in retrospect a form of post-viral syndrome. I can relate to all posters who talked about being energetic and sporty as a child.
I don’t know if my body just managed to get over it naturally after time but I noticed huge improvements in my physical health and well-being after giving up sugar and processed foods for a couple of years (I was VERY strict about this originally but have gradually eased up since), CBT, and going off hormonal contraception. It sounds awfully woo but I felt a need to give my body a reset about 10 years post-GF when I was still suffering and something did wonders. Wishing everyone all the best for their own recoveries, I know how shit it can feel.

@WorldsBestBoss prefer not to as it's rare enough to be really outing - but also do rest assured that if you had it, you'd absolutely know, it's not one of those immune conditions where people look back and realise that their mild backache and general fatigue had been xyz all along, more like vitiligo (it's not) where you can clearly tell something in your body isn't working the way it used to.

[quote OverTheRubicon]@WorldsBestBoss prefer not to as it's rare enough to be really outing - but also do rest assured that if you had it, you'd absolutely know, it's not one of those immune conditions where people look back and realise that their mild backache and general fatigue had been xyz all along, more like vitiligo (it's not) where you can clearly tell something in your body isn't working the way it used to.[/quote]
Ok, thanks! Yes that was what I was wondering - thanks for explaining and completely understand your need to keep it anonymous x

@icedancerlenny

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.

There is, and the best thing you can do for yourself is take high dose vitamin D spray (Amazon and Holland and Barrett sells it). It's a natural steroid and really helps, plus it's preventative protection against MS, which like you will find is linked to Glandular Fever.

@WowStarsWow

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!

It honestly changed my life so definitely give it a go. I used to get crashing fatigue in the day. Gave up sugar and refined carbs and I’m about 97% better now 👌 (lived with it for thirty odd years too).

@Sadsiblingatsea

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.

Mine resurfaces in bloods too periodically even though they say you can only catch it once 🙄

Pituitary gland information is fascinating. Off to google that.

Same, around the same age too. Asthma diagnosis and inhalers helped in the early days (about 6-12 months after) but I really thought I had ME in my early 20s and every few years I seem to have to go for blood tests with fatigue and it's Vit D or Iron or something. It never seems to end and GF was the start of it all. Before that I was fine.

God this is so interesting!! I had what I now know is post viral fatigue after glandular fever at 15, I'm now 34. I was floored by GF, literally came home one day and fell asleep on the sofa and was too ill and weak to move from there for about 2 months! My mum used to help me walk to the loo. I also had tonsillitis triggered by the GF which didn't respond to antibiotics, and so I had it for nearly a year before they were removed. I used to have a bed at school to sleep on when I finally returned to school months later - and would sometimes only manage a morning in lessons before sleeping all afternoon in the nurses office. I was very fit and sporty and have never been able to return to that level of fitness as I simply get too tired.

I would say it took me around 10 years to fully recover. I've always had to rest more than most people my age, and at times have had crippling fatigue after very normal activity. I also ALWAYS get ill on nights away or holidays as I think it's just too much for my body sometimes.

I too listen to people with long covid and see the similarities.

I wonder if long covid will be the catalyst for post viral syndrome finally getting the research it deserves.

I had GF at 17 (58 now) and it completely floored me for months. I had ENT problems constantly afterwards and finally had my tonsils removed at 25 (thanks to my lovely mum who paid for a private consultation for me - no GP would ever listen)
I think it’s affected me ever since; I’m very reactive to any illnesses; if I get cold or wet I’m guaranteed to be ill (chills, shivery, aching joints and muscles etc) and had the same awful reaction to both covid jabs.

If you don't mind me asking @natoth how did you get confirmation and treatment for the pituitary problem? I have a pituitary issue (and a tumor) and asked my endocrinologist several times if my problem/tumor/CFS could have stemmed from being very ill with glandular fever over 30 years ago. He basically said no chance, no connection at all. I KNOW I changed after that illness and I have suffered periodically since.

@FreeBritnee

I wonder if long covid will be the catalyst for post viral syndrome finally getting the research it deserves.

I really really hope so. Maybe we will finally be believed too.

Glandular fever can cause CFS.

Glandular fever can also return, it lies dormant in the body and a small percentage of people it starts up again.

yes, i had it and it triggered an auto immune condition later, similar to @OverTheRubicon. Although it is awful reading how many other people have suffered the same, it does make me feel a bit less weird!

Yes there's a lot of 'you can never have x twice' statements that basically mean it is extremely rare to have it twice.

I had measles as a baby, then as a toddler and then once again despite immunisation later on. No it wasn't German measles (I had that too) and I can remember having lots of blood tests as a small child (I remember sitting on my dad's lap while they took the blood) because it was 'unusual'.

I had GF at 14/15 (confirmation came through on my 15th birthday) and my life went way off track afterwards with exhaustion and lack of ability to do or enjoy the things I'd done before (sports, etc). Then it showed up on a blood test later on in life and I said yes I had it as a teenager and the doctor was like oh that can't be right then.

I think medically speaking the term 'never' can be used to denote extremely rarely. I've gone on to have thyroid issues (maybe unconnected) and a so far undiagnosed but presumed autoimmune condition.

Unfortunately my parents didn't believe in illness if there was no vomiting or bleeding involved and even then were reluctant to let you stay home from school so for me the glandular fever was probably at least in part more detrimental because I was forced to carry on. Eventually though I took to just taking myself home from school after lunch (having been marked in on the register) and going to bed to sleep. The rest of my teens were an uphill battle against exhaustion.

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.

@TheHoneyBadger, it seems that, at least anecdotally, thyroid issues are common in people who have had GF. Mine is secondary hypothyroidism caused by a sluggish pituitary, which is where the GF comes in. Unfortunately, because of inadequate NHS testing, it took forty years to get a diagnosis, but that,ent has been life changing.

I've been through a lot of health/life stuff that can be connected to pituatory gland issues. Any time I see any of them mentioned by people I recommend agnus castus because it was pretty life changing for me (at least in terms of menstrual issues) in my late 20's and 30's as it works directly on the gland which regulates hormones.

I got Guillain Barre (which is absolutely horrific) after having EBV, they are linked.

I have never fully recovered. It was 5 years ago.
I honestly find life a struggle now.

But I have never been allowed to fully rest by my STBXH

I have several auto immune issues and they all come with a side order of fatigue. Apart from taking basic vitamin supplements , COD liver oil, it c and d , plus the ones to support bone loss there’s only one thing which reliably gives me a boost and that is freshly pressed vegetable juice.
The irony is that when I’m having a flare, the last thing I feel like doing is standing over the juicer shoving in carrots, celery, cucumber and ginger root, and then cleaning said juicer. But after three days it kicks in and I feel brighter with less brain fog.
The juicer is a beast, Green star, but I’ve had mine twenty years and it’s still going strong.
That’s my penny’s worth.

Is your life straightforward and enjoyable or do you have underlying stress over someone or something. I got fatigue when helping my elderly mother in her last year and when overwhelmed with work ( I wasn't cut out for and should have known better) and a home restoration project.