ex glandular fever sufferers

[tiredsville]

I had glandular fever well over a year ago, and feel yet again I'm still getting mild bouts of it swollen glands, fatigue, body aching slight temperature.

Ex sufferers, does it ever flipping leave your system? I'm going insane

I'm the same. I had it last February ( 2008 ), wasn't diagnosed until the April, and haven't been the same since.

If I'm really healthy and look after myself then I generally feel okay. As long as I haven't got any kind of virus, like a cold, I'm eating really well ( non processed, no sugar, tonnes of fruit and salad ), don't over do it, get enough sleep, then I feel normal again. If any of those things slip, then the symptoms come back and I feel crap again. I had a bad cold a couple of weeks ago, and can't shake it off. Colds totally not me back, and take weeks to recover from.

I've found a largely raw, sugar free diet to be really beneficial, but it so hard to live that lifestyle full time.

• knock, not not -

It does go, honestly!
Bear in mind that 50% of the population have had it by their mid-adulthood, so it does pass.
FOr me I'd say I was unwell for aobut a year and run doen for one more. Otoh, DH was ill fro 3 mths and 100% after a year. My DB had it for a month and then 3-4 mths of run downness. It varies a lot. Your immune system has been battered so you are prone to other vague viruses.
You will feel better soon, honest.
I totally get your frustration.

A normal healthy diet will help, but time is indeed the great healer in this case.

Hth.

celery, I also had symptoms in Feb 08 and was diagnosed in April 08.
Did your glands ever go down? Will try to eat a bit more sensibly, the whole experience has been a nightmare tbh.

I also still need an obscene amount of sleep, it's embarrasing.

I had it in 2006. I was writing my dissertation at the time and was hospitalised for the unbelievable swelling in my tonsils. It has taken a long time to get over. I have had a pregnancy between then and now and I still get run down very easily. I think getting my tonsils out a year later did help though, so if tonsil infections are something you suffer a lot with it's worth begging asking them to do a tonsillectomy.

I didn't actually get the sore throat from glandular fever, mainly swollen glands, puffy eyes, crushing fatigue.

this probably isn't going to cheer you up but I had it at about 9 (am 26 now) and it took me a few years to get over it, but then I had it for about 2 years. Then it flared up badly again a couple of years later (was quite bad in my teens) and again lasted a long time.

If I get the slightest infection/virus/illness now my glands immediately swell up even if I don't feel too bad in general (and tiredness/very sore throat/whole body aching). Also my immune system is pretty crappy.

But I am better when I eat properly. I'd recommend a supplement like floradix (it's the only one I've found that really helps), gentle exercise.

Mostly I have other issues (am overweight smoker etc) that make it worse, but I'm finding it alot better now I am making effort to lose weight and as a consequence eat a lot better and exercise more.

Yes been taking supplements and regular excercise. Possibly I over did it on the excercise front and that is why I've relapsed yet again.
I think friends and family are sick of me whinging on now, I'm sick of hearing myself whinge.

don't push yourself too hard - recognise your limits. Gentle exercise - walking, swimming, yoga type stuff.

What a coincidence!

I thought I had the flu in february, and felt SO ill for weeks and weeks. When I was finally diagnosed, it was such a relief, but of course I was still feeling totally crap. I did a lot of research online and stumbled across the story of some one who had cured their long term post viral fatigue with diet. I also researched what supplements are beneficial in treating glandular fever and post viral syndrome. For about three months I ate a largely raw diet ( I couldn't go 100% raw, but some people do ) and cut out all processed sugar. I also spent a fortune on vitamins and supplements and took those religiously. I've never been one for faddy or extreme diets before, but I felt SO ill for such a long time, I was willing to try anything. All I can say is, it worked. I'm not sure how much the supplements helped, I stopped taking those after three months because they were so expensive. The diet definately helped a lot though, I know this, because whenever I start eating crap again, I feel totally crap again. In particular for me, I think sugar is the trigger. If I eat a lot of sugary food, the symptoms flare up straight away. But the raw stuff definately just makes you feel great generally. I Juiced a lot, just because it's the quickest and easiest way to get as many nutrients into your body as possible. Anyway, by the July, I was feeling almost back to normal again, and have generally been okay since then, or atleast I would do if I could stick to this bloody diet, or never contract a cold again!! One day I hope I'm going to realise that living this lifestyle is worth it, because no cake or chocolate or fast food is really worth feeling so rubbish over.

Anyhow, that's my experience. I have a feeling I'm going to battling post viral stuff now for a very long time, or possibly for the rest of my life.

If you google raw food, post viral syndrome and similar words and phrases, there is a vast amount of information out there on the web. It worked me for me.

IT does get depressing and it is hard when you can't do as much as everyone else.

I found that depression went alongside it - and it is important that if that is affecting you as well that you are getting help for that alongside.

I would say it took me over 5 years to get over it and even 10 plus years later I still suffer with throat symptoms if run down. Took about 8 years to not get sore renal glands and swollen armpits whenever I was over tired.

I also have psychological problem with lack of sleep in that I panic about not getting enough sometimes and cannot bear that sleepy feeling you get when in a stuffy old meeting or something - reminds me of trying to do lectures when I was really ill and actually would doze off at every single one!

My ds2 had glandular fever- hes never recovered and has just been doagnosed with cfs/m.e,hes only 13.

This is my worry too, when does it lapse from long term glandular fever to CFS ME?

I know the raw diet is the way to go as it makes complete utter sense. Slight problem is I'm size 8, which is fine but my concern is eating a raw diet may make me look super scrawny. But that is just vanity speaking, I think I could sacrafice looking scrawny for feeling human healthy again.

Well ds2 had long term symptoms for over 5 years before this diagnosis was reached - hes now on 50% attendance.

It was when he always felt ill he never feels great even on 'good days' and his extreme exhaustion leading to collapse -they rule everything out before they diagnose cfs so they tested him for everything firsat such as leukamia and diabetes etc etc.

The sad thing is ds cant really remember feeling 'normal' because hes had this since he was at least 8 .

I had it at uni (am 37 now) and yes it takes a couple of years to get over but you do get over it I promise. I also suffered repeat bouts of tonsilitis after too. And it is exhausting, I remember my niece was a toddler and I tried to babysit her one night and I just couldn't, she just exhausted me. My dad had to come take over.

I love it when people can see that the raw diet makes sense because most people I speak to about it can't seem to see that. The thing is, I probably was like that before, until desperation drove me to try it, and I saw for myself that it worked. I've found that even eating about 50% raw is hugely beneficial, ie something like a smoothie for breakfast, a juice with green stuff in and salad with everthing else throughout the day. As long as I cut out processed food and sugar, I seem to be able to get away with dairy and meat and small quantities of rice, pasta etc along side the raw stuff, so that might be worth considering?

I've found that depression is actually a physical symptom for me. Hard to explain, but I can actively feel myself getting depressed whenever I have a flare up through getting a cold.

Tragic when someone so young has this diagnoses nickschick.
Six months after the initial positive result fof GF, I had blood tests to eliminate other nasty illnesses, everything negative.
Doc suggested taking AD's, she said it would make me sleep better. I told her the problem was trying to stay awake. Grr.

mother in law done the raw diet in conjuction with conventional medicine when she was diagnosed with lung cancer. 10 years later she is in fab shape.

I had it in 1989. Even today, if I get very very tired, my glands go straight away and if I ignore that sign to rest, I get hit with a horrid gland like thing.

I had GF when I was 18/19 and it was horrendous, but I did get back to "normal" (no swollen glands, antibiotics, debilitating tiredness etc) within 2 months of diagnosis by using loads of alternative therapies (cranio sacral osteopathy, acupuncture, supplements and chinese herbs)

However I would say that even now 18 years later my immune system and general constitution has been forever changed by the GF. I went on to suffer quite bad IBS in my 20's which still occurs when I am run down. If I do get tonsillitis now it is severe and my glands still swell at the slightest provocation I now know myself well enough to spot the signs and try and do something about it or get help (back off to the acupuncture/osteopath etc) Diet def makes a difference - but I love my food and find it hard to cut things out I like- well sugar mainly! Yoga also helps me for sure. Another vote for Florodix too ( even though it is very bleurghhhh!)

imo conventional docs are cr*p with GF (and IBS) and only seem able to hand out anibiotics - which for me would make things even worse.

My best advice would be take care of yourself and if you can try some alternative medicine/therapies + diet and yoga.

I'm off to google the raw food links!

I've just ordered some coriolus which is apparently anti-viral.
Friend of friend said an alternative doctor up Harley St recommended this supplement for EBV (GF)
Feeling seriously fluey today, no sore throat just the aching glands and sweating.
Bollocks oh dear.

Anyone with a child with CFS/ME/GF please,please look at the AYME website. I don't kow how to do a link, sorry. The prognosis for children is very good with activity and sleep management.

NHS is the place to go for support, although not every Trust has a service set up for CFS. Please use AYME as a resource, they are very respected and will provide you with evidence based advice.

If you live anywhere near the Bath area, there is a world renowned paediatric CFS consultant doctor/researcher who is leading in this feild. Her team are NHS based. Specialist Occupational therapists within a CFS service may be available in your area.

I had it 10 years ago. I wasn't properly recovered until about 4 years ago I'd say as it morphed into a post-viral syndrome which stayed with me for years. The relapses became less frequent and less severe with time though.

Like most others on this thread, I still have to be careful not to overdo things. Stress at work gives me warning signs, ditto getting over tired. And I only need to look at a cold virus (so to speak) for my glands to come right back up. Some days it does get me and I can barely function at all, but that's pretty rare now.

So all I can say is that your symptoms will lessen in time and probably more or less disappear, but it's always there in the background so you need to take care of yourself.