Glandular fever, CFS, and vaccines

in addition, it's really reassuring just to have people post about their own situations. it scares me how people often mention that they've had their condition for years. i'm coming up to 7 months now and that is much longer than i imagined and i am fatigued more now than during the glandular fever. i get lots of pressure pain in my face and cheeks and temples, is this normal? the shakes come and go, as do the aches, and erratic sleeping too.

mentally it's very difficult, i'm supposed to have an active job and when you don't look ill there is frustration amongst colleagues. my family and friends sympathise but struggle to empathise. i try not to complain but then they don't think i'm suffering, but if i mention how i'm feeling i can sense frustration setting in.

i am waiting on a referral to some sort of clinic at the hospital that should help with fatigue, and properly diagnose what seems pretty clearly post-viral.

it's nice to know that there's people out there who're dealing with this too. i used to be so active, it's so sad. i was aiming for my first marathon and on schedule for under 3hrs, it really has destroyed me in my prime. i guess that i have to believe that i WILL get better. i hope so.

Hi Ali, Charles Shepherd, MD, writes:

"There is widespread agreement that a variety of infections are capable of precipitating chronic fatigue syndrome (CFS) in susceptible individuals. In 1988, Lloyd et al reported that several of their patients had linked the onset of CFS to receiving a vaccination in the absence of any coincidental infection. Since then, other anecdotal reports have also linked vaccinations to the onset of CFS."

And: "This data (although unpublished) suggests that tetanus, typhoid, influenza, and hepatitis B are the most commonly implicated vaccines in cases of CFS. I have reports of very few cases involving hepatitis A (using immunoglobulin), polio, or rubella vaccine, or those predominantly given during childhood–with the possible exception of Bacillus Calmette–Guerin vaccine (three cases)."

I personally think CFS patients should receive compensation for their vaccine-induced condition.

Alial - my son also works very hard and loves what he does very much. This fatigue means that, like you, he has had to cut down a bit which is frustrating for him.He doesn’t get joint pains which CFS seems to be characterised by. He gets headaches and when he feels particularly fatigued (there are degrees of it) his neck glands come up. At the moment he is just resting and not drinking alcohol and this seems to help. I mentioned before that he first had it around 18 months ago. Then he returned to normal and it came back last month after a very active period. I don’t believe it was preceded by any vaccines. I will ask him.What sort of clinic are you being referred to. I am interested so I can tell him to ask his GP to refer him on to somewhere else. I thought a clinic which looks into the glandular system (endoctrinal, lymph etc) might be helpful but I don’t really know. Hope you feel OK today.\

When he was tested for glandular fever the results were negative - ie he didn’t have it but I’ve heard this doesn’t always show up (Epstein Barr virus its called) but I don’t know why this is.

Hi Sue. I'm in New Zealand, so not sure exactly what clinic but my GP referred me at the end of last year, then by the time the clinic rung in maybe mid-Feb i was managing and feeling okay so I told them not to worry. Obviously, since this vaccine and relapse, i've asked and he's re-referred me.

Your son sounds like he has very similar symptoms. My muscle aches aren't so bad, i wonder maybe because of pre-illness fitness levels being quite high. I too avoid drinking as even half a beer makes me much worse. And yep, I'm onto light duties at work and more-or-less managing full days, but find myself very disheartened with each relapse.

Alial - Yes it sounds very similar. One thing I’ve suggested is that he gets checked for any allergies. Here in England there are really good places to go for this kind of testing. He didn’t have any vaccines by the way. Its good to be in touch with you and others who have similar symptoms so will keep you updated on any developements.

In 1999 I had a hep B vaccination, was told I had no immunity. 5 days later I was hit with what was later diagnosed as glandular fever.

The bulk of the symptoms went on for 3 months but I had a deep muscle fatigue that went on for about 2 years.

I had a mercury filling removed a year ago and I relapsed and now have tremors, fatigue and headaches, recently onset of arthritis.

Unsure of connections but I have my suspicions