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Glandular Fever 8 months in and need hope.

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sophie10008
sophie10008

Hi, I am 25 year old female, and have always been healthy and luckily never suffered any health problems - that was until I caught this evil illness.(Sorry long post of my experience so far and other health problems I think have happened due to GF)

Back in October 2020 I had what I thought was an ear infection, when speaking to my doctor (over the phone because of covid) she asked if my tonsils were big and they were! They were huge! She said I had tonsillitis (which I was shocked about as I’ve never experienced tonsillitis, not even as a child) and to phone back if I see any white spots as I’ll need antibiotics. The next day I woke up with the worst symptoms I’ve experienced, severe sore throat, ear ache, high temperature, sickness, diarrhoea, loss of appetite and my tonsils were throbbing. I couldn’t even get out of bed as I was so weak, it felt like a sickness bug! I had white spots on my tonsils develop over the next few days so was put on antibiotics to clear up the infection, after 2 weeks I finally saw improvements and started to feel slightly better, that was until a few weeks later when I had a ‘flare up’ and all my symptoms came back again but just not as intense as the first time, I called my doctor and they said it was tonsillitis again and to rest and it will pass.

I had lots of ‘flare ups’ right up until Christmas, and at this point I was doing my own research as I felt like the doctors kept fobbing me off and not particularly listening or understanding my concerns. Glandular fever came up and all of the symptoms matched! Around November-December time I also developed a pain in my left lower rib cage which I now believe to have been my spleen enlarged due to glandular fever.

In December I wrote a list of how I was feeling and all my symptoms, and phoned the doctor and read out every single symptom to her - she said I bet you’ve got glandular fever! If it flares up again after Christmas you’ll need to come back for a blood test to confirm.

I felt incredibly unwell over Christmas and new year, and then January came and I perked up abit and thought i was finally coming to the end of it so didn’t book in for the blood test.

February came around.. the worst month so far. I started to feel a ‘fullness’ in my mouth and back of my throat, along with all the usual symptoms - A sore throat, feeling generally unwell, slightly nauseous and a new symptom - dizziness!

I was dizzy most days, and also having heart palpitations and struggling to breath (due to the size of my tonsils) I went to A&E as I was extremely worried and they confirmed from an ECG my heart rate was too fast but couldn’t find a reason why. When I was sent home I got straight on the phone to the doctors and booked a blood test for glandular fever (regular blood test don’t pick up the EBV so you have to be tested specifically for it)

I finally got my diagnosis on the last week of February having been unwell since October! Positive for glandular fever. My doctor sent me a link to the NHS website which said you’ll recover in 4-6 weeks! What a joke that is?! (This caused me a lot of worry and stress as it had already been many months!)

I noticed these cracks in the corners of my mouth in December which spread into a rash type, around my lips, my doctor said it was Angular Chelitis and prescribed me a cream but it didn’t go, last month I spoke to them again and my doctor said I could have a vitamin deficiency and can do a blood test if I wanted? (She wasnt overly fussed about me doing one) I pushed for the blood test and I’m glad I did! (Dr also said shes glad I did)! My test results showed I am now B12 deficient and I am on tablets to get my levels back up! (Having undiagnosed b12 deficiency can cause health problems if left untreated so push for that blood test!!) I do believe GF played a part in this! I’ve never had problems with vitamin levels before and haven’t changed my diet recently.

I’m now 8 months in, and feeling better than I was at first, but still incredibly unwell. I have lots of new symptoms like jaw pain on the right side, extreme fatigue, right side neck pressure, and pressure in my right ear which I’m not sure is linked but it can get very painful. I’ve also been told by a consultant that my tonsils are still very swollen and one is bigger than the other.

When I wake up In the morning my mouth and throat feels disgusting! Sooo dry and just not nice - even after downing water it’s still like it. The constant feeling of fullness in my throat and the bad taste I have in my mouth doesn’t go! I’ve had voice changes, my voice has been deeper and croakier than normal now for 6 weeks. I constantly feel bunged up and my throat feels really clogged! And my tonsils still being swollen after 8 months?! Is this normal? I can’t wait to feel better again! As you can tell it’s been a zig-zag recovery until this point! 1 step forward 2 steps back constantly.

I guess I just want/need some reassurance that things will get better and i will be back to good health very soon.

A few questions to anyone that’s come out the other side of this illness..

Did you have an extremely dry mouth and throat? And did it pass along with a bad taste in your mouth?

How long were your tonsils swollen for? Is it normal to have swollen tonsils for over 8 months?

Did you suffer any other health problems which you think were triggered by GF?

Thankyou to anyone who can help me!

List of my glandular fever symptoms.

•Sore Throat

•Ear Aches

•Swollen tonsils (8 months+)

•Dry Mouth

•Oral Thrush / White Tongue

•B12 Deficiency

•Nauseous

•Dizziness

•Eye Sight Weakend

•Painful Right Jaw

•Pressure in Neck and Right ear

•Extreme Fatigue

•Feeling of Fullness in throat

•Bad taste in mouth

•Extreme Health Anxiety

•Throat feels clogged and stuffy

•Croaky Voice

1 like, 2 replies

2 Replies

  • Britabroad
    Britabroad sophie10008

    Edited

    Hi Sophie,

    Your journey sounds very similar to mine. In November 2020 one of my glands was solid, it's still there now (was given all clear after an ultrasound). I didn't suffer from any of the common symptoms at the time of infection but did start to feel dizzy/lightheaded around January 2021. I went to my doctor, first time got antibiotics and nasal sprays. The second time he ran a complete blood work and I tested positive for EBV antibodies. Since then I've had the following symptoms:

    Dizziness / Lightheadedness (Symptom has since passed)

    Spaced out feeling

    Ear Pressure - Both Ears (Symptom has all but passed)

    Blurred eyesight on things up close

    Left arm, throbs/ pulsates / feels weak /trembles / buzzes (this one is hard to explain)

    The worst for me is the spaced out feeling.

    The good news is the symptoms are subsiding one at a time. The turning point for me was when I accepted them. It wasn't easy because at various time over the last 5 months I've convinced myself that I've had MS, Parkinson's, Brain Tumors etc. Anxiety levels have gone through the roof at times and I've never had any problems there before. Reading a lot of the other posts there seems to be a common theme here.

    Hope some of this helps. I noticed nobody else had replied to you so that also gives me comfort that people are stepping away from this forum as and when they recover.

  • NickO101
    NickO101 sophie10008

    Edited

    Hey Sophie,

    Looking at your symptoms it seems to mirror many people's experience with Mono on this forum so I wouldn't worry too much especially if you tested positive for Mono when you first presented. I look at some of the older threads on this forum to see how my symptoms match up to others and find that most if not all have recovered.

    As for my own symptoms, I'm 30 (relatively young) was super fit and recently single and kissing a fair share of girls before this knocked me back. I'm 4 months in and have experienced the following but my blood tests could only show past or recent exposure to EBV/CMV as opposed to just Mono.

    This stuff can be really scary especially when it's been going on for so long but if your blood work is normal and your doctors aren't concerned try not to stress too much. It seems like many MDs are quick to dismiss prolonged symptoms or post viral fatigue as psychologically induced which I don't think is correct.

    I know a few people in my life who struggled with GF or post viral fatigue/chronic fatigue for a long time but have gotten through it and are living healthy happy lives.

    I'll be going to see a Naturopath and having Acupuncture in the coming weeks, so far I've had around 5-6 blood tests, 5 or so doctors visits (including a hormonal specialist) and nothing has come back out of the ordinary aside from the past/recent exposure.

    My symptoms so far that match up with yours:

    •Sore Throat

    •Nauseous

    •Dizziness

    •Eye Sight Weakend (especially at night)

    •Fatigue (especially after any form of exercise)

    •Feeling of Fullness in throat

    •Extreme Health Anxiety

    •Throat feels clogged and stuffy

    Further symptoms:

    •Occasional Joint & Muscle Pain

    •Occasional burning pain under armpits

    •Legs occasionally seize up like I'm super dehydrated if I have been sitting down to long (fine otherwise)

    •Brain Fog

    Hang in there we will all get through this.

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