Living with Recurring Glandular Fever Many people who c...
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Living with Recurring Glandular Fever
Many people who catch glandular fever (Epstein-Barr virus) recover completely, but for a significant minority, like me, the virus hides from the immune system. I believe that this ability was discovered in the late 1960s. I heard of it in a BBC science programme in the early 70s, and immediately recognised my situation.
I caught glandular fever (without complications) in spring 1967 when I was a youth. Those who are affected by recurring symptoms, will recognise my case, where the symptoms receded imperceptibly slowly. It took about 9 months from being infected before I felt more or less normal again - for a while.
I pass on my experience of coping with this condition. There is bad news and good news.
The bad news is that the symptoms recur throughout life - that is for those who have difficulty clearing the original infection. A cure might emerge, but I am assuming that this will not happen. The good news is that, in time, the symptoms become gradually less of a problem.
The bad news is that one needs to adapt one's lifestyle in order to deal with this. The good news is that one can live a normal life. There are many with other lifelong conditions, who are far worse off.
Any virus illness (cold, 'flu) will trigger the symptoms. Something as common as catching a cold runs as follows. One feels unwell (exhausted), with no symptoms. About 2 days later, the cold symptoms start, accompanied with swelling of the glands in the throat and/or cheeks. The swelling is not very noticeable to others. One has a slightly raised temperature, and feels quite ill. After 4 to 10 days, the cold symptoms and swelling subside, but the feeling of exhaustion remains. This can last 4 to 6 weeks, or 6 months after a bout of 'flu.
How can you cope? There are a number of measures.
1) Smoking exacerbates the symptoms. If you are a smoker, you will be one of those who find stopping smoking relatively easy. You will soon learn to avoid smoke-filled places.
2) Should the symptoms start, treat as for a cold, or 'flu. You will feel exhausted, and a good thing to do is to get a lot of sleep.
3) It is worth getting a 'flu vaccination, if you can.
4) Exercise - you won't feel like exercise, and it is wise to rest while the cold symptoms are there. Once they are gone, and the feeling of exhaustion remains, that is the time to resume vigorous exercise. I think it might be the raised body temperature which helps to fight off the symptoms. In the case where you go to the gym, you will have to force yourself against the feeling of exhaustion for the first time, and even the second time, but by the third time, you realise that you are much fitter. The exhaustion will go. Regular exercise helps ward off the problems, and the fitter you are, the better you will manage.
5) Avoid catching colds. You will find that you have become especially susceptible to colds. There are many things involved here, from a good, varied diet, a daily multivitamin/mineral tablet (don't overdose), cough sweets in the bus/train etc.
The best advice, and perhaps the most difficult and lifestyle threatening, is to follow what (great) grandmother told you, "Wrap up warm!" Think how she would say, "Put on your sweater/scarf/hat/woolly socks before you go out!" You think. "It is not cold outside". You know it isn't "Cool", and you don't want your friends to laugh at you.
If the summer weather is really hot, you can get away with fashionable wear. Otherwise, the bad news is that keeping warm maybe "uncool" but if you ignore this, you will suffer. Ideally, you should keep on the verge of perspiring, and if the surrounding air is fresh and cool, that is the ideal. Avoid stuffy environments. Avoid becoming too hot, sweaty and wet, and then getting chilled. However, if you can arrange to change into dry clothes and not become chilled (as when you go to the gym), all well and good!
I found these lifestyle adaptations very unwelcome. You will have to find your own way to cope. Thinking of these matters will help, and you can lead a normal life, with bouts of extreme exhaustion from time to time. Take comfort in that these will become less severe, and maybe less frequent as the years pass. Otherwise, you are quite normal. You can achieve what you are capable of intellectually, and physically. Face up to the occasional difficulties, and be determined to succeed with your life. Epstein-Barr will not prevent you.
[i:b1201028bc]This message was automatically imported from the original Patient Experience[/i:b1201028bc]
4 likes, 190 replies
Melissab1985 Guest
Posted
Had anyone ever developed gerd from mono (gf)?
I'm a 31 year old female, and I first got mono when I was 23, it took about 1.5- 2 years to feel good again. But still not 100% back to my normal self before it hit and never got 100% again. I was well enough though. I did developed POTS from it, and an irregular heart beat, which also makes my heart pound hard all the time, and still does to this day. I've also developed 2 leaky heart valves right after which I don't know was from the mono or just coincidence. There is one other symptom I developed from it the last time that I also have never got rid of, which is in lack of better words a constant "high" feeling in my head. It's everyday all day still to this day. Which I've learned to live with.
Anyway. 1 year and 4 months ago I was diagnosed with mono again through a positive mono spot, because I was getting swollen glands, a mild sore throat (which I still have today) and a swollen feeling in my throat (which I also still have today).
I would actually have never thought of mono as I've had it before and also thought you could only get it once, but when my gp referred me to an ent, he insisted I get a mono test. Glad I did because that's what it was.. so.. I thought to myself, i feel pretty darn good considering what I felt like the laSt tonn I had it and his long it took to go away
Melissab1985
Posted
Sorry accidentally hit send didn't mean to wasn't done haha. Anyway
I thought I felt pretty good considering how bad I felt the last time and how long it took to go away. Well I definitely spoke too soon because just a week after I thought that to myself all the symptoms came back to me and hit me harder than I had it the last time and was literally bedridden for 6 months. And within that time I developed GERD which is pretty severe right now and I also feel like I get some of the mono symptoms off and on again still even over a year later of being diagnosed with it for a second time. Oh and also one really weird symptom that I get with it is this very strange muscle tightening pressure feeling in my neck and face and sometimes has tingling Sensations along with it and I've been getting that off and on for the past year also.
But I was just curious if anyone ever had developed really bad gerd from mono and if they did did they resolve it and how did they do it and also did anyone get the weird head feelings like they're high all the time and that weird throat and face feeling with theirs?
craig07920 Melissab1985
Posted
Hi Melissa,
So sorry to hear you haven been feeling so unwell and suffering also. I empathise as had a tough time with glandular fever in the past too. I'm afraid I don't know enough about the other conditions really to comment on them, all I can share is that asking God to help me was a big factor in my recovery I believe and that I do firmly believe that you, Ben and everyone else reading this and on the forum here WILL make a full recovery and feel well again.
Hang in there, and wishing a Merry Christmas to you and more healthy, happy and peaceful times on the horizon - I fully believe that will be the case for anyone reading this struggling with glandular fever / mono today. Thinking of you, remember plenty of rest and take care of yourself, give yourself time to recover and some good multi-vitamins and immune boosting herbs.
Take care
Craig
P.S. Your body has amazing powers of recovery and eventually outlasts this terrible virus and gets it under control
vicki37695 Melissab1985
Posted
craig07920 vicki37695
Posted
Hey Vicki,
So sorry to hear you're suffering from that, one thing that has helped me has been effervescent (or dissolvable) Vitamin C, because you can gargle that in your mouth and throat for a couple of minutes and my theory is that might work better at getting to those areas better (well I'm not a doctor and have no medical knowledge but it seems to make some kind of sense I hope!).
Hang in there and everyone reading this today remember you WILL recover from glandular fever / mono (even if you're in that phase that most seem to go thorugh thinking that you will never recover), and there IS hope and a full recovery for you, even if it takes a bit of time still. Take it from someone here who thought he would never get better (asking God definitely helped me get through and He healed
)
emma22888 Melissab1985
Posted
Hi Melissa,
Crap I was a healthy and fit person before mono. I also thought my mono was getting better apart from bronchitis and a sinus infection and a crazy racing heart sometimes I'm trying to sleep and it ramps up to 90 my anxiety starts, leaving me exhausted when I finally get to sleep. I'm battling with insurance to get an EKG I have 2 little children and some days I feel like I'm having a heart attack. I sympathize but I'm also glad I'm not the only one. Dr's look at me like I'm insane when I tell them some symptoms.
Thanks for sharing Emma
craig07920 emma22888
Posted
Hi Emma,
Really hoping things get better soon for you, sorry to hear you're trying to cope with so many things as once, all that stress just make it into this vicious circle and makes the mono hit harder unfortunately.
But eventually your body does get to grips with it so there is still hope there, I know that doesn't help much when going through the horrible time but want you to know that there is light at the end of the tunnel, and even if that takes a bit of time it will come and you will feel better I truly believe.
Craig
vicki37695 craig07920
Posted
Thanks Craig trying the dissolvable ones too ,some days are good but some are just so exhausting and can't move.Thanks always for your encouragement it means a lot .😋😋😋
craig07920 vicki37695
Posted
Craig
GAilanne9 Melissab1985
Posted
All of these Melissa. I didn't realise that you have glands running up the back of your neck. that is the worst pain for me. Feel I can't hold my head up.
Melissab1985 GAilanne9
Posted
Yes, with all of this I also realized that you have glands in the back of you neck/head. I got two swollen glands STILL in the vary base of my head on the right side that from time to time hurt very bad sending sharp pains up into my head. Just last night while trying to go to bed, I had that weird intense muscle/tendon tightening feeling in both my knees. Was very intense for about 2 hors then finally slowly started going away, and again those lumps in the back of my upper neck hurt and was getting sharp pains everywhere in my head. I also was getting sharp shooting pains in my rib area in my chest, my legs, my feet my hands.. everywhere... and felt a little nauseous and flu like. I've noticed over the past 4-5 months that it's always much worse right before and during my period. Maybe fluctuations of the hormones have something to do with how much worse the symptoms get?? I'm not sure. But I had hormone testing done a couple months ago to see if they were out of balance. And they said they were fine. I've pretty much had literally every test including blood tests that you can have and they've found nothing out of the ordinary. And in September it'll be 2 years now I have felt like this. So whatever it is obviously isn't going to kill me, but sure does make you feel miserable alot.
GAilanne9 Melissab1985
Posted
That's what I have to keep telling my mom - its not going to kill me but please just bear with me while I feel like I'm dying!! My new husband just had his first experience of this with me - at the moment he just looks a bit confused. Anyway first good day today after 6 days - just waiting for blood results to confirm virus.
Dal_g Guest
Posted
Hi I come down with glandular fever may 2016 I was bed ridden for 3 weeks and a bit rough for another 2 weeks but since then I have the odd day when I feel extra tired.
but Every night I sweat so much through the night like some one has sprayed my whole body with a hose. I'm starting to get annoyed with this. I am under a lot of stress as my son is ill.
Is this part of glandular fever ???!
Thanks
craig07920 Dal_g
Posted
Hi Dal,
Sorry to hear you've had a tough time with glandular fever, I think it's a possibiity the sweats could still be related to that even after that time, I know it does all kind of strange things to your body and the comination of glandular fever and the stress could certainly trigger such things. Certainly worth seeing your doctor about that though always the best idea in such instances.
Hope that these symptoms stop soon Dal and thinking about you
Craig
Dal_g craig07920
Posted
Thanks Craig. I'm hoping it is just a combination of glandula fever, stress and dehydration , as I have read that night sweats are a sign of lymphoma 😖
craig07920 Dal_g
Posted
It's so easy to let your mind worry I understand Dal, I do think night sweats definitely can be a symptom of glandular fever though, but of course always wise to see the doc - just hoping and believing you will feel better soon, I do believe that for you (even if it doesn't seem that way now) and that you will make a recovery and get a healthy and happy life back again.
Take care and thinking of you
Craig