Until recently, I thought "glandular fever" might be some kind of flu. Unfortunately for me, I've now experienced it firsthand.
What is Glandular Fever?
Most people today have heard of glandular fever or mono (infectious mononucleosis). The disease is caused by the Epstein-Barr Virus and is common amongst 15-25 year olds; however, the vast majority of people have it before they are 5 without showing any symptoms or being diagnosed. Often people have known a friend at school catch it and miss a term or skip a year of university. Others might find themselves one day diagnosed with something they had never really heard of, which is what happened to me.
I am an otherwise-active 27-year-old male—so slightly older than the norm—and until a few months ago, I thought "glandular fever" might be a bad form of the flu. Having now experienced it firsthand, I understand it to be a highly contagious disease with very unpredictable symptoms. While some people do recover very well, life can be pretty frustrating for those whose symptoms continue on for months or even years. Especially since these are often the more active, competitive and high achieving types.
This article will:
- Explain what glandular fever is - countering some common misconceptions of the disease
- Outline my own story of diagnosis and recovery in the hope that it will help those of you feeling uncertain about the disease, and;
- Offer some pointers for enduring the recovery
Typical symtoms and prognosis
According to Medilexicon's medical dictionary, Glandular Fever, also known as infectious mononucleosis, is "an acute febrile illness caused by the Epstein-Barr virus, a member of the Herpesviridae family." The Epstein-Barr virus is generally spread through saliva, and it is notoriously contagious in the time before symptoms begin to show. When symptoms do appear, they usually include:
- a high temperature (fever)
- sore throat
- swollen nodes
- fatigue (extreme tiredness)
The symptoms should usually pass within six weeks without treatment and a complete recovery is normal. However, there is no cure or treatment available to speed up the process. In addition, fatigue can sometimes persist for much much longer.
Due to swelling, patients will also be advised to avoid contact sports or over exertion for some weeks after recovery to avoid risking a ruptured spleen as this would require emergency surgery.
Glandular fever is not as clear cut and easy to define as we'd like to think. In reality:
- Glandular fever is often difficult to diagnose conclusively. There is an often false-positive 'screen' for the virus, but a conclusive test involves detecting the presence of the anti-bodies by carrying out a blood test. In my case the hospital waiting over 2 weeks for these results.
- Some people catch the disease but show no symptoms.
- Symptoms can vary enormously - sometimes matching those of much more serious conditions.
- While a full recovery can be expected, this can sometimes take anything from a couple of weeks to over a year.
- It is rare to have glandular fever more than once; when exposed to the virus, the immune system fabricates antibodies which usually provide lifelong immunity.
- The virus in those who have developed immunity has been known to occasionally reactivate. This may make the person infectious but without symptoms.
Doctor's at a large UK hospital told me that I had had one of the worst cases of glandular fever they had seen because of the issues with diagnosis, which had a team of 14 doctors questioning what I had.
I had first caught an unrelated atypical pneumonia and was assured that a course of antibiotics would set me right. However, three weeks later my condition had significantly worsened and I returned to hospital with extreme fatigue. Climbing out of bed and walking 5 metres would leave me shaking violently and looking to collapse; even sitting on a chair or listening to conversation was tiring. I had a persistent headache, was nauseous and had begun throwing up. While in Accident and Emergency (ER) the doctors identified a temperature >38 degrees, significant dehydration, and readmitted me immediately.
I didn't have any obvious swelling in my lymph nodes in my neck and, having no tonsils, I had no tonsillitis.
I was given a chest x-ray, a chest CT scan with contrast, a brain MRI scan, a liver and spleen ultrasound, and some intravenous fluid. These tests showed my blood tests to be off and spleen and liver enlarged. My body seemed to be fighting another form of infection, but it was not clear what it was. My extreme fatigue could have been caused by anything—including a large number of conditions like leptospirosis, brucella and life threatening lymphoma.
In my case, because a diagnosis was not immediately obvious, a radioactive PET scan with radioactive FDG-glucose was carried out as a diagnostic guidance tool. A lymph node biopsy was also carried out to fully rule out lymphoma. Both tests commonly used to identify cancer.
I was assured that unexplained symptoms like mine are most commonly something that the body clears up on its own. I was discharged to await the results and two weeks later discovered that tests to identify glandular fever returned positive.
My fatigue and general symptoms continued for months, but I did fully recover and I want to share my story in the hope that it encourages others to overcome!
Different people really do recover from glandular fever in very different ways.
- Some report feeling completely better after only a few weeks.
- Some experience the first 80% of their recovery very quickly, and only gradually get back to complete strength thereafter.
- Others barely recover at all for what could be many months, before suddenly improving quite dramatically
- The majority experience the ebbs and flows and ups and downs of a more gradual recovery. It could be described like a gradually rising stock chart
In my case, I was discharged feeling awful, but rapidly improved over the following 2-3 days. It felt like I might be back to work within 2-3 weeks. However, the disease then knocked me out to basically the same as I'd left the hospital. The same pattern continued for over 6 months. I gradually felt a bit better at each best point, and a little less worse at each low, but the trajectory was in no way constant or consistent.
My GP advised lots of rest and box sets and 4 months on I was still not fit to return to work. Progress seemed quick at the start but rapidly slowed down to a standstill. I learnt to listen to my body and wait for it to be ready. Over the next few months I finally felt up to doing a day of work a week, and gradually increased this to 2 days. Finally, after about 8 months I felt better. Fortunately many people recover more quickly than this, but for those of us who don't, or take even longer, it is hard to know how to handle the constant uncertainty.
Everyone has different experience and could bring their own advice to the table, but my advice is:
Don't push through
If you need to stop and rest, do so. It is so frustrating to be an active person who has to stop halfway through or flake on plans, but you need to. It was so tempting to use yesterday as the benchmark of how much I should be able to do and try to do a little bit more each day. That's a good principle, but glandular fever recovery doesn't improve in a consistent way. Sometimes the day you push even just a little too far can leave you bed bound again for 5. If walking becomes too tiring then stop and sleep it off. Schedule in regular duvet days. Listen to your body and look forward to the time when you'll have recovered completely; don't try to force it to get there sooner than it can.
Don't stay still
As hard as it is, and as quickly as friends seem to move on while you're staying still, do try and stay active and sociable when you can be. Some people spend all their time in bed while they're recovering, but staying in bed isn't always what you need. For weeks at the start I felt like I wasn't recharging while I slept—I needed to sleep until I did. But I then found that there were some days where I could spend 4 or 5 hours with others so long as I stopped when things got too much. It was right to do that.
Glandular fever hits the emotions as much as the body; dealing with the loneliness of months in bed on your own can be difficult, especially if you're extroverted like me.
Eat well and rest well. It goes without saying that good food and good rest help. Make sure you give the body all that it needs. Vitamin B supplements sometimes help.
Stimulate your mind
While it's hard to stay active physically, it's really important that you stay positive emotionally. I think that the doctors initially tried to do this by telling me that I would be better in a fortnight every time I went to see them. The reality is that I'd have found it much more helpful if I'd known I was going to have 6 months off. Even when ill, there's an awful lot that you can do in that time. I learnt how to web develop, and read books I'd been wanting to read for a long time.
Embrace the rest; when else will you have a forced holiday in which only your mind is active and you can't busy yourself by going somewhere else?
Spend some time thinking about the business you hoped you might start, learning the skill or instrument you always wanted, or planning the holidays you'll do when you're better—there's never enough time for that when things are going well. Anticipate the long haul and make the most of it.
As someone who was five years in to a career, glandular fever also gave me a chance to question what I was doing with my life. This can either be really heavy or really uplifting. It is worth thinking about what life is for and why are you here, but in a constructive and calm way.
- When you're feeling a bit better, have coffees with people in areas or businesses you want to learn about; this only takes an hour or two of your time and helps you to stay connected to the world
- Enroll on an alpha course by visiting http://alpha.org/ - it's a 10-week course where you can informally discuss the meaning of life over dinner. You can go when you can, and you'll inevitably form a group of friends who've helped you process the time you're going through.
- Questioning your priorities in inevitable in a time like this, but try to avoid only getting in to a heavy spiral of depressing thoughts - ask yourself what question needs to be answered and send of an email to someone (even a stranger) to find out the answer.
My church and my faith also helped me perservere
The reality is that some friends only wait for so long; if you're out of work for most of year, then many colleagues may have changed jobs in a fast moving environment like mine. However, it's a good time to spot good friends who are in it for the long haul and to invest in them; cherish those who show an interest. I was so fortunate to have a wonderful girl and a supportive church who wanted to help. Where people can help, let them - invite them in to your vulnerability and frustration, as you will otherwise shut them out and grow ever more distant.
For me, I found a lot of support in my church and in my religion. I know not everyone believes in Jesus, but for me, relying on my faith during this difficult was really important. I found comfort in the knowledge that Jesus loves me (John 3:16) completely unconditionally, and that he invites me to cast all my anxiety on him because he cares for his flock. While I was ill and unable to do very much, it was so helpful to be able to find freedom and peace in my faith. I was comforted by him saying "come to me, all you who are weary and burdened, and I will give you rest." (Matt 11:28).
Esptein-Barr Virus, glandular fever, mono—whatever you want to call it—is not an easy disease to cope with. It can be much worse than the flu, unless you're lucky and had it as a child without symptoms or catch it and don't react to it.
No one knows why some react worse than others, but ultimately all we can do is rest, wait and hope for the future. While I was ill the days blurred together and drifted by; it felt like no time before I was finally back to full strength and I wish that I'd heeded some the advice I've now learnt while I was waiting and hoping to finally get better.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Trey Lyon on October 02, 2017:
Wow, thank you for posting this. I'm a 28 year old male and my life has been completely changed by this virus. About 9 months ago I got insanely sick with nearly identical symptoms as yours while I was on a backpacking trip in New Zealand. came bac- improved. Went on another smaller trip in July and relapsed. Now My energy level is seldom over 75% 9 months after the original occurrence. It's comforting to hear that there are others out there who have had long-term lingering fatugue such as what I'm experiencing. I used to mountain bike, crossfit, and run every day. Now I can barely muster the energy to take my dogs for a walk. Family planning with my wife has come to a halt. I can't imagine trying to parent while in this foggy fatigued state. Thanks again for posting. I hope life returns to normal in the next few months.
Kim on May 25, 2017:
Thanks everyone for the info. I'm now over 12 months with iron deficiency and 4 positive IgM tests indicating that EBV is still currently active. It has been extremely frustrating and I've shed lots of tears. I've had an iron infusion, seen a naturopath, acupunturist, and kinesiologist, just to try to get some balance in my body through herbs and vitamins. I was very active - competing in triathlons and training most days, finishing a PhD, working, and looking after a zoo at home. Now I struggle to do basic house chores. If I push too hard, I end up in bed for about 4 days and feel worse than the previous worst day. I haven't trained in 6 months and spend most days sleeping in front of the TV. I've had anxiety and depression, severe headaches almost to the point of being migraines, night sweats, extremely enlarged lymph nodes in my neck, armpits and groin, extreme fatigue, and joint aches. My doctor has now prescribed antivirals so hoping this may provide some relief. Wishing everyone a speedy recovery.
G on March 07, 2017:
Thank you so much, I really needed to hear this. I was feeling fatigued for s few months. I went to the doctors and blood tests showed that I have had glandular fever and Ross river virus. I guess I didn't really show any severe symptoms, I just assumed that I was tired because I was studying a lot last year.
It is now 4 months later and I have days when I have energy and days when I have none. My energy levels vary so much even within the day. I have just started my final year of school and I am struggling to allow myself a day off (out of stubbornness).
I think I needed some reinforcement that it actually is ok to rest and to give myself a break which is what everyone has been telling me this year.
Jesse on January 15, 2017:
Hey Simeo - thanks for posting this. How are you doing now?
Katya on January 04, 2017:
Thank you so much for sharing
Going through the same thing and it sure does give you hope ! I appreciate this so much it is not easy
Felice on December 15, 2016:
Thank you so much for this article and all the people who posted. I've got glandular fever 5 months ago, it's been a rocky road. I know I pushed myself too far at the beginning and thus got other infections on top: bladder infection which only went away after 3-4 weeks and 3 different antibiotics, swollen spleen twice, throwing up one day no idea why, hospital visit for extreme abdominal pain. I got the message so I rested, I rested so much I thought I was getting better, bit of yoga here, 10 mins walk there. Then I got over confident and did two very stupid things, first - I'm naturally a night owl but since getting ill, I find myself being awake all night and sleeping all day. I wanted to change that pattern and getting up earlier didn't work so I decided to stay up instead. And because I felt so confident I also for the first time went out on a date. Totally knocked me out, including muscle pains, shaking esp hands and legs, extreme headaches, slept for almost a week. Then still in line with my overconfidence I decided to stay up again because that list time didn't work. Worst mistake ever. I forbid myself to sleep and rest in an attempt to align my sleeping pattern to what people think is normal. Now I have anxiety and depression because I have trouble sleeping, and losing hope, shaking a lot. I know that eventually I will recover but there is the voice in my head that's freaking out "what if I never recover?". I'm naturally a person who pushes herself. I've never been capable of pushing myself as much as others because of anxiety issues when I'm sleep deprived but I always try to do as much as I can. I've travelled the world, lived in 4 different countries and just got accepted into drama school which obv I had to postpone. The funny thing is, until about a week ago I loved this break from all the craziness, chill watch tv, read books, think big etc but it's starting to get lonely. I live in London at the moment and my mum in Berlin, supposed to fly over for Xmas but I'm not well enough so I'll be spending Xmas here alone. I also started getting nauseous. Sometimes I don't know if it's hunger or not. I'm vegan anyway but have been starting to eat whole foods since I got ill. The last few weeks I tried to treat myself for something processed or take away but anything apart from whole foods makes me majorly ill and gives me stomach cramps for days. I'm just as bad now today after exhausting myself so majorly as I was when I got ill except now I also have anxiety and can't relax and sleep which makes things worse if course. I'm hoping just rest and time will make it better but also considering speaking to my doctor about it. I hate speaking to docs about those issues, in my experience most don't help.
It's nice hearing from others who are going thru the same thing. :) It gives me hope!
IndianGuy on September 12, 2016:
Its now been over two months when i first fell ill. My first episode was low grade viral for 2-3 days after which i went back to the gym to lift. post that i fell sick again - low grade viral. doctor suspected typhoid as i had stomach cramps and went on to antibiotics. felt good after the 5 days course but then again fell sick with a sore throat and cold. took about 10 days to recover from that and went back to the gym thinking the ordeal is now finally over but after 3 workout sessions, have had some body ache and fatigue. the doctor said maybe stomach worms and gave me a deworming tab..stomach feels better post that, but overall i still feel fatigued.
i can feel my strength gone. any sort of physical or mental exertion leaves me feeling feverish (internal) doesn't show it on the thermometer. One day, i was feeling extremely feverish. i went to the loo, took a d**p and started feeling better.
I feel chills in my feet and feel dryness scratchiness in amy throat every 2-3 days.
Any idea what this can be?
duncan on January 29, 2016:
Thanks so much for this article. Very insightful, practical and uplifting in regards to what can be done with the recovery time for Glandular fever.
I was recently diagnosed and spent a frustrating first week wondering why everything in my body ached and a resulting two weeks in bed with tonsils the size of golf balls, questioning why the penicillin wasn't working.
I am now in my initial stages of recovery and what you said in regards to using the time constructively and trusting your body are are both very important. Yesterday I felt surprisingly well in comparison to the hell of last week, I ended up watching a film quite late on in the day.. my eyelids were unnaturally heavy half way through the film but decided to push on. Today I woke up and my symptoms have worsened. Your body tells you what you need and from my limited experience it's very important to trust it.
I am unsure whether I will be in this for the long haul or be relatively quick to recover however one thing is clear in my mind. Glandular fever gives you a chance to take stock of your life, quit any addictions and plan for the future as it (strangely) gives you the gift of time.
You will spend a lot of time by yourself. All those nagging things that you've wanted to research, watch or create are now (symptoms permitting) a possibility. I have long wanted to start my own product design company and now, in the last few days of being essentially bed ridden, I have managed to get some pretty interesting ideas and initial steps on paper. I have also researched travelling ideas and calculated a savings plan for this.
It also gives you a chance to plan a healthier, more sustainable way of living and working.
My diagnosis did not come as much of a surprise. I knew I was over exerting myself in nearly every aspect of my life... I was cycling twenty miles to work most days, eating a regimented (but not varied) diet, filling almost all 'out of work time' with either freelance work/ band practise/ learning to drive or partying (on weekends). I knew that living in such a way would either 'make or break me'.. I was hoping it would turn me into some kind of Elon Musk type legend (still hoping) but it turns out, this time, it broke me. Diet has become crucial - you really do need to take care of your body, vitamin C, D and B and healthy natural food stuffs are something that in the Western world we are lucky enough to have access to - over the period of my illness (1 month, 1 week) I have been eating a far more balanced diet. The great thing about doing this is it not only helps for relieve symptoms but you feel better in regards to mood and mental agility (if you previously were not giving your body what it needs).
I was a smoker.. I have now not smoked for a month and don't intend on starting again once I have recovered. Haven't had a week off drinking since I was 17.. the doctor told my my liver was swollen after the blood test (as is quite common in Gladular fever). I now haven't drunk for 3/4 weeks.. Probably won't quit drinking but does give you the chance to evaluate how much you drink and shows you, when you're feeling up to it, that you can still have enjoyable evenings out with your friends at the weekend (even at pubs/ clubs) without the need for alcohol.
I am aware I have given an improbably positive account of Glandular fever and this probably reflects my relatively mild symptoms, however, I truly do believe that in the modern world it is often difficult to sit back and take stock of the whirlwind that is going on around you. Although being ill is never nice, at least with this illness, some of the time can be spent to better yourself and solidify a positive course of action for your life once recovered.
I hope this has been helpful and wish you all a swift and hopefully beneficial route to recovery,
Adam on December 16, 2014:
Great to read an article from someone who has suffered the way I am now. I first became ill in early September after a routine colonoscopy/gastrocopy. Foods weren't agreeing with me, I was increasingly agitated and became tired very easily. I'm an active 29yr old, no previous med.conditions to bring this on. I'm now 15 weeks into this, and its the biggest fight I've ever had to battle. For people reading this, you DO improve slowly. Initially I started with a fever and extreme lethargy and fatigue. All I did was slept..for 5 weeks. Diagnosis took a while, before my gp decided to check for glandular fever. It came back that I'd suffered an acute infection some 6 weeks prior. Symptoms then got worse and two trips to the ER was what followed. Heart pulpatations, numbness, fatigue, loss of appetite and nausea were the order of the day. Some symptoms will leave, and then occasionally reappear. That's what I'm finding now. My biggest issue right now is chronic headaches, difficulty concentrating and fatigue. Which I'm told can be the final stages. I'm really conciour of how I fuel my body now. No junk food, caffeine, alcohol and cut back on sugar. The biggest breakthrough was seeing a naturopath last week. As a close friend had great success with seeing one. I'm currently on a vitamin b complex tablet twice a day, taking a buffeted vitamin c powder. Just mix with water as well as a Chinese herbal tablet called Astralagus8. A combination that studies have shown to reduce the longevity of symptoms, improving and boosting your immune system. I've never been the type of person to be open to vitamins or supplements, but doing this combined with a good diet..can't hurt. Good luck to those fighting the virus as I am.
DanielNHart on October 29, 2014:
I was recently diagnosed with EBV virus last month after suffering with fatigue gradually getting worse since May. After many test coming back as normal it is good to finally find a cause for my extreme fatigue.
I own a landscape company, 53 years old, married 30 years with 4 kids. Avid biker training for Seattle to Portland bike ride every year. I am used to working hard and playing hard.
Now, I can not work at all and brain fog making normally easy things a challenge. I am eating only whole foods, no sugar, no caffeine and a lot of supplements my naturopath doctor is prescribing for my immune system.
Thank you so much for writing, it was very encouraging to read. I am told at least a 6 month recovery, but I am strong, hopefully this will help me recover faster. It is hard not to push my limits but good for me to learn how to rest.
g.a on September 27, 2014:
Thanks for the quick reply, im glad you mentioned the tingling haha i thought i was going mad. How did you initiate returning to work ?Im on my 7th month and its been a real horrible ride ! If you exercise at all hwo long did it take you to return to be active ? Thanks
Simeo (author) from London on September 27, 2014:
Yes! Tingling that started in my ankles and wrists and I'd notice most clearly when I woke up, but still would be there if I stopped during the day. On bad days I'd wake up feeling tingling above my knees and elbows. They were signs that I just needed to cancel anything I was doing and rest for 2 - 3 days. Sleep trouble was less obvious, I've always been able to find peace and get to sleep, but I did find myself not wanting to sleep until the early hours of the morning...
g.a on September 27, 2014:
Did you suffer from aching limbs and sleep trouble at all throughout your recovery ?
Simeo (author) from London on August 21, 2014:
I'm glad you found my post helpful - and so sorry to hear you've come down with it again! You can't rush it; I tried to go back to work 3 times during the last 4 months before I actually managed to, and even then it took me about 8 weeks of gradually rebuilding up. Every few months I'd climb up another level, but I never knew how far away I was from being back to strength. It's incredibly frustrating but ultimately, with a foggy brain and a tired body there isn't much you can do but rest, get your mind in order, and pray for peace (as is your want). As difficult as it is, it's a real opportunity to self-improve - whether it be life disciplines that you've always wished you had (as in my case) or reading up on stuff (not that I had the mental capacity to for a good number of weeks) or just exploring the questions of life you never have time to normally.
s.a. on August 05, 2014:
I had mono as a kid and now have ebv as a 70 yr old. Thank you Simeo sharing your your journey. It helps as a reminder that I will eventually recover.
Shane on April 12, 2014:
Thank you so much for this, you just stopped me killing myself . I just don't feel right since the it started but it's only been 2 and a half months god bless you