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
craig77198 Guest
Posted
This article and the letters of reply are like air to drowning man. I contracted glandular fever 10 years ago.
At the time a friend explained the potential of recurring bouts of the debilitating symptoms and that in all probability these would possibly occur for the rest of my life.
?I have lived in denial of this fact, until reading your experience toda, neglected to work on an appropriate response as a result have paid dearly for my negligence.
?I am most grateful for this most enlightening article and look foward to implimenting your advise and finding relief from this malee.
craig07920 craig77198
Posted
Hi Craig,
So sorry to hear you've had such a terrible time with glandular fever, it's so frustrating how doctors and other people underestimate the devastating impact it can have on your life physically, mentally and emotionally.
I do still believe there is hope and recovery for you, the virus EBV takes a different course for everyone and even though you've had such a terrible time for such a long time, I sitll believe you will recover and get back to a settled and normal way of life again. Definitely would recommend taking some good vitamins, including a strong multi-vitamin, high doses of Vitamin C (up to 3000mg per day), B complex and co-enzyme Q10 for energy, and immune boosting herbs such as siberian ginseng or echinicea. Flaxseed oil or turmeric also very good for clearing inflammation.
Hang in there and remember there is hope!
Craig
rachael59356 Guest
Posted
Hi there!
I know this is an old thread, but finding this thread provides so much comfort knowing I'm not the only one suffering from the effects of glandular fever!
I was diagnosed with glandular fever just over a year ago. I have not felt well ever since. I am constantly exhausted, am getting recurrent tonsilitis and have an extremely weak immune system. In addition to this, I was diagnosed with depression and anxiety in the summer. The combination of the fatigue, past issues and the lack of support/ understanding of those around me have all contributed to prolonged feelings of hopelessness and depression.
I am a third year biology student and am trying to write my dissertation. I was bed ridden for the 2 weeks leading up to the submission deadline with tonsilitis, fevers and extreme fatigue. The slight virus or cold and my glands become inflammed, i develop tonsilitis and am completely wiped out. I have just received my letter from the doctors surgery to support my extension request... I had to pay 30 quid for it and all it says is I came in with a 'sore throat' for 3 days... When infact I was prescribed antibiotics for tonsilitis! Growing increasingly fed up with it all.
Sorry to moan, I just wanted to tell my story and see if anyone else has experienced this? And those that originally posted, are you finding the symptoms have eased in any way? It would just be nice to talk to someone who understands how dibilitating Epstein-Barr virus is! Best wishes to everyone - we are in this together!
craig07920 rachael59356
Posted
Hi Rachael,
So sorry to hear about this terrible time with glandular fever you have been going through, I really do empathise having been through a similarly tough time with it around 10 years ago.
From the perspective of it being a while ago since I was affected, I want to offer some hope and encouragement that you will most definitely get better and make a full recovery Rachael. When it's been going on for over a year it feels never ending and it's so traumatic and I think only those who have went through it understand how really debilitating and life changing it is, but let me reassure you that this second year will be nowhere near as bad as the first year for you, once you have weathered that first year then the only way is to recovery!
The stress of the dissertation and trying to work through when feeling that way really makes it all harder, just be careful because trying to force through can delay recovery and you do need to give yourself plenty of rest and recovery too at this time.
I experienced many of the symptoms you mentioned, thought I was never going to get better and also felt depressed and anxious and worried what the future held, the mental side is as hard if not harder to deal with than the physical side. But God will give new strength and recovery for you Rachael, I really truly believe you will get better and it's not going to be much longer for you, just hang in there and remember you can come on here and talk about things any time you want!!
Thinking about you and remember there is hope and your body resilience will and does come back even though it doesn't feel like it when going through it.
Take care
Craig
craig07920 rachael59356
Posted
Hi Rachael,
I just wrote a message but for some reason it requires moderating, I hope that it comes through because it was writing to offer lots of hope and encouragement that you will most definitely recover. I went through a similar experience and thought I would never get better but thanks to God's grace was able to recover.
The same will be true for you without any doubt I really truly believe you will make a full recovery. Once you have weathered the first year that is BY FAR the worst and you won't have to deal with symptoms as harsh moving forward - it can still take time for recovery so don't panic if it doesn't come right away, but remember it definitely will come and you will get better!!
Thinking of you and come on here anytime to chat if you're feeling worried - keep us posted as to how you are doing.
Craig
emma22888 rachael59356
Posted
Hi Rachel,
My name is Emma and I've been living with mono then the EBV since last May. I'm English but live in America. Here the dr's don't understand either. The first bout lasted on and off for 5 months my husband had to take time off work to look after the children. It was terrible I also had deep depression and anxiety and my meds were upped to the max I was also prescribed Modafinil to help keep me awake it has helped a lot. In January I also got a reoccurring bout with bronchitis, sinusitis and felt wiped out. The Dr didn't recognize that it was part of EBV very frustrating. Luckily my real wipe out was 4 days over a weekend where I couldn't leave the bed even to eat. More antibiotics were prescribed for my already weakened system but it did the trick and now 2 months later I'm feeling normal again. It is frustrating as I don't know if it will strike again. Maybe you could ask for Modafinil to help with your studies. Know you're not alone with the lack of medical understanding and know you know your body best. Unfortunately antibiotics can rid the infection if not the tiredness. Keep in touch. Emma
craig07920 emma22888
Posted
Hi Emma,
Thanks for your kind and supportive words, it's such a good forum here and everyone is always trying to do their bit to help others and that's so important.
Just want you to know that I believe you will get better too Emma and just hang in there, it's an awful experience going through EBV / glandular fever, but there is an end to it and I do believe fully in your recovery, God helped me recover when I was ill and there is always hope even though it often doesn't feel that way when going through it.
For me I started to see a turning point at around 10 months or so, I know it's different for everyone and recovery takes time, but don't panic if it doesn't come right away and just take it one day at a time and remember you will get better!
Take care
Craig
andy38910 Guest
Posted
Hi there.I read this thread over a year ago.After having only what I can describe as unbelievable complications after having a terrible sore throat for six weeks it was accompanied by weird feeling of fatigue that has stayed with me for 16 Months now.i can only describe it as if I was took over by something alien.ive also had joint problems that came on instantly with the fatigue. in both upper forearm/elbow I have very bad pain also in a couple of fingers.
So here I am after seeing consultants for joint pain.doctors not being able to help with yet again for the third time a terrible sore throat and feeling that this will never go.i feel so down with it and feel there's no where to turn to as everyone has heard it any way if any one feels like they have just completed a marathon even when You haven't done anything that is the kind of feeling I have.so I plod on with this and try and except what has happened to me and live life as best I can.
Andy
maggie54554 Guest
Posted
I am totally amazed at what Glandular fever does to the body, & nothing surprises me with it anymore, I first got it in september 2011 coming up to my 46th birthday, i started with feeling tired and sleeping very heavy, then a strange round raised rash appeared on the back of my neck , by December i had the feeling that i had small bits if crushed peanuts on the inside of my throat, that would come and go for months, By January i was not feeling at all well, then as the next few months followed, i was eating my dinner one evening, and my stomach was swelling up so much it was pushing what felt like into my chest, that same week, i had such bad heart palpitions that i ended up at the doctor who sent me for an ECG..by that afternoon the doctor called to say there was a problem with the ECG and they sent an ambulance, and off to hospital i went , wired up to heart monitors for more than 7 sevens hours, i also had allergic reactions to medications, which set my head on fire, taking meds of any kind was a big fat no no...then out of the blue while eating potatoe , i had an allergic reaction to that, and my mouth went so dry, i had to go to the hospital for an Allergy medication which i was able to take..with out another reaction happening, my doctor then sent me to have allergy testing done, and i had become allergic to tomatoes/hazelnut/carrots...( i was re-tested once the Glandular fever had gone, and i am no longer allergic to these foods ) I had an Echo done on my stomach, and where it was so swollen, they were not even able to see my spleen, i got a fugus , in both of my Big toenails , and the nails fell off, i had never had that in my life before, then i had a fungus appear on my neck....the tiredness was a really killer and i felt that i was dying inside, i was so unhappy, it took me more than an hour to get myself out of bed in the mornings, to wash and get dressed, by the time i had done that i was exhausted....thankfully after about one year i did recover, but still had some odd things going on for at another few months.....Never in my life did i think i would ever get it again...But last year again around the september time 2016...due to a massive amount of stress, that i had being going through , i ended up with Glandual fever once again...now that shocked me Big time !!!! i was taking my Mulit-Vitamins for many weeks, just like i do every year..and then i noticed my head and face were burning and i got bad heart papitations, and it was a serious allergic reaction and i had to go to the hospital, at the same time i had new glasses that i was not even able to wear as my body clearly did not like they were made of !!! 8 weeks ago i decided to take vitamin D tablets..Big mistake..took them for 25 days, with no burning head etc and then i had the massive bang in my chest...hospital yet again..it was an Allergic reaction to the Vitamin D Tablets..and i also had high blood pressure and a high temperture ...i can say that i have been feeling much better this time round, less tired, but when i sleep at night, i can sleep straight through and up to ten hours sleep no problem..i am also suffering with Vaginal yeast infections, i suppose due to my immune system being weaker, yesterday i also notice that i have Fungus growing in just one of my toenails...i have no idea what else this nasty virus has in store..but i do know that it is very important to eat really well, and if you can take a good quality vitamin then do it, eat fruit and Veg , get fresh air and sunshine, i am now in my 8th month of having GF for a second time, i hate it, but i know that in time it will go, i have learnt to de-stress, relax and go with the flow.....having a positive attitude and i know from my own Experience that is not easy but it truly helps....GF Can and will affect you from head to toe..and it will create an endless list of odd health issues....
craig07920 maggie54554
Posted
HI Maggie / Andy,
Thanks for sharing your stories, so sorry to hear you've both had such a tough time. Just want to offer some hope and let you know despite the awful times you have been through I still believe there is hope and that you will feel better - hang in there and thinking of you.
Craig
jeff93529 Guest
Posted
I contracted glandular fever when I was in my 20's
Posted 3 minutes ago
I am about to turn 60 and concur that over the years the rate of recurrence has diminished but alas still manages to knock me down every so often (I currently have fatigue for the first time in a few years) in the early days I went to several doctors looking for an answer - they would generally give me a standard blood test, get me back and look at me as though I was some sort of hypocondriac and tell me there was nothing wrong with me (very frustrating). During one bout of 'the tireds' I noted that taking iron tablets along with vitamin E gave me a miraculous boost of energy for a short while but when I tried the combination again during a subsequent bout it made no difference (one of the many mysteries). My question to you is - Has there been any correlation made between the bouts of fatigue & gluten? I did a minimum gluten diet several years ago (for quite a few months) and it didn't seem to be making much difference so I stopped. It wasn't until I got this latest bout of fatigue that I realised I had shaken 'the tireds' for several years and wondered whether the low gluten diet was to thank for the break?
GAilanne9 Guest
Posted
I see some posts are quite old and it really helps to see others with the same condition. Someone said people start thinking you are a hypocondriac so I try and get on with it but so true. I tried to explain how dreadful I feel but unless you have experienced it - no-one understands. I contracted chronic glandular fever in 2009 after being diagnosed with burnout from work. So yes - it is often linked to a stressful situation and thereafter a stressful situation will trigger an outbreak. Every time I have to change my doctor I have to try and explain that I am not depressed but I am anxious. The anti-depressants make me feel worse than a GF outbreak. I do have to take a mild anti-anxiety and mild sleeping pill at night - that has certainly reduced the recurrences. In terms of vitamins - be careful not to overdo it. Eat healthy food and i did find that Co-enzymeQ10 helped. Dont take more than one multi-vitamin a day if you feel you need it as too many can result in kidney problems.
The first outbreak was so chronic and I couldnt take time off work so it took longer to heal and probably did more damage. I find I can't eat during an outbreak and the first time around my basic diet was juiced fruit and vegetables, raw nuts, lots of water an no alcohol. Try not to take anti-biotics unless there is no choice but to treat a symptom. Everybody has good points and whatever works for you! Seeing and endocronologist is definitely a must. Otherwise rest and take painkillers, disprin or whatever to treat the symptons until it goes away. Staying positive is important but extremely difficult. I have a terrible recurrence at the moment and battling to keep my chin up but know this will pass.
I live in South Africa and I am thinking of starting a support group as talking to someone else with the same problem really helps.
craig07920 GAilanne9
Posted
Hi Gail Anne,
Just want to message to say thanks for taking the time to share your story with us. It's an awful virus it really is and just so sorry to hear it has affected your life in such a way. I had glandular fever about 10 years ago and it took me a loong time to get over, God helped so much and just grateful He has given me better health these days.
Sounds like you are doing all the right things with vitamins, etc. B vitamins are good for energy as well as co-enzyme Q10. Definitely keep taking your multi-vitamin and also immune boosting herbs like siberian ginseng, oregano and echinicea certainly worth trying. A good pro-biotic can really help too. Omega fish oil and turmeric can be really good as well for inflammation and calming things in your body down in that respect.
I still believe that even though it's been such a long time that there is hope Gail and that you will get better. I feel convinced of that, and that God wants me to let you know that today He is with you and will help you.
It's a good forum here, there are lots of threads with some good people giving words of hope and encouragement. Just hoping you can have a settled period at the moment and to let you know I'm thinking about you and believing in your recovery still, without any doubt whatsoever I believe that.
Take care and message any time
Craig
Melissab1985 craig07920
Posted
I just read that you first contracted mono/gf about 10 years ago. That sounds so much like me also. I first got it when I was 23, and it lasted about 2 years. After I've never felt the same. Then I got pregnant at 30 years old, amd right after I had my c section, 3 weeks later, I have mono/gf again for the second time. My symptoms seem to be a bit different than what I read tho. Mine are alot of neurological things, like the virus messed with my nervous system or something. Like muscle spasms and twitching very often. Sharp pains all through my body frequently, like I've said before, a very out of it, almost high feeling, amd dizzyness often. Cold feet all the time, my toes turn purple alot lol. Tingling sensations sometimes, amd that weird intense muscle tightening feeling I mentioned before in random places now and then. I alot developed major stomach issues, gerd, chronic constipation, I get lots of heart palpitations when these stomach issues are at their worst. I get frequent bladder infections now too. I also get a very strange feeling of what I can only explain as vibration feelings in my veins, and sometimes a feeling of being in a boat. I feel like I'm moving or swaying when I'm ot. Or if I'm standing feels as though the floor is moving under me when I'm standing still.. I don't know it's all very weird stuff you wouldn't think would have anything to do with mono, but I've en getting it since I was diagnosed again almost 2 years ago, in 4 months it will be 2 years. But I have an appt coming up with a neurologist on the 16th and maybe he can help find what's causing all this or possibly relieve some of it. Because I work full time and have 3 kids and I'm supporting my husband that's out of work too and it's very hard to go to work everyday when most days you have all of this going on. So anyway like I was saying next year will be 10 years since I first was diagnosed with mono/gf and have never been the same since. The off and on struggle with it can be awful and miserable. But just try to stay as positive as possible a.d be as healthy as possible and just hope and know one day that all your efforts will work. Whether it takes 6 months or 6 years. And remember that with or without mono symptoms, life still has to go on amd try and fight it as best you can. That's all we can do. I pray for all of you and hope one day we can all be symptom free of tgis horrible virus. Good luck to all
GAilanne9 craig07920
Posted
craig07920 GAilanne9
Posted
Hey Gail,
Good luck with seeing your new doctor, really hope that he can help. It's so hard to find a good doctor that is understanding and takes time to explore the things you are feeling and reassure.
I do still believe that recovery is happening for you Gail, and that the manifestations will come in your life - I know it might not feel like it now but this can't and won't last forever. Just hoping that you can get a settled period and start to build things up from there - don't panic Gail there is still hope I do believe God will heal and there is healthy and happy times for you to look forward to again, without any doubt I believe that.
Craig
GAilanne9 craig07920
Posted
Hi Craig - didn't go well with Doctor. Very dismissive and just kept saying there are no scientific facts to support anything I say in terms of symptoms, possible cures etc. Just go to bed and deal with symptoms until it passes. I asked if there was any new information out and the only thing they have been able to prove based on scientific fact is that Glandular cannot lead to ME Flu. Other than that no-one seems to be interested in researching this condition. So to all of you just stay strong and when it hits - take to bed and take what you need to stay comfortable.
craig07920 GAilanne9
Posted
Hi Gail,
So sorry to hear about that experience with the doctor you went through. I have had many of the same experiences with doctors over many years for many things, so don't be discouraged and when they are unhelpful and unsupportive like this, disregard them because the important thing is to remember that you will get better, without any doubt I really do believe that Gail recovery is going to happen and is happening right now.
Just hoping and praying for good times ahead Gail, remember God is with you and Jesus heals, He is stronger and more powerful than any doctor who tries to put you down or chooses not to help - don't worry and hang in there, just hoping for a better day today and period ahead Gail, thinking about you and message any time.
Take care
Craig
GAilanne9 craig07920
Posted
craig07920 GAilanne9
Posted
Just take one day at a time Gail is the only thing to do with the horrible effects of the virus, I only come on because I know what it's like and know how much suffering and anguish it caused in my life but want to offer some hope and reassurance that there can be and will be recovery, there is light at the end of the tunnel - because I know it's so hard (virtually impossible) to see it when in the midst of it all.
God bless you too Gail, hang in there better times on the way for you without any doubt I believe.
Craig
catalinaboromiz Melissab1985
Posted
I have exactly the same symptoms after Mononucleosis and it's FIBROMYALGIA. The muscle aches,fatigue,head aches,twitches and the gut problems...all of them are related to fibromyalgia and it's triggered by EBV. I'm so sure about it..and doctors have never diagnosed me because my lab tests are perfect...never diagnosed me until 2 weeks ago..but I knew is fibromyalgia before they said so. There is no hope for me anymore...until they find the cure for this monster.
Good luck!
craig07920 catalinaboromiz
Posted
Hi Catalina,
There is still hope for you, it must be so hard for you just so sorry to hear what you are going through - there's always hope because of God so just hang in there - just so sorry to hear about this terrible experience.
Also want to reassure others than those kind of symptoms, fatigue, headaches, twitches, gut problems, etc, while going through glandular fever can all be normal part of the virus unfortunatley and it doesn't necessarily or in most cases mean any other condition - just don't want people worrying unnecessarily when already struggling with glandular fever.
Craig