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.
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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).