Help! Diagnosed with Mono, Chronic pain in submandibular gland for 3 months

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Hey guys,

I've decided to jump on here and see if I can get some advice as I am feeling depressed from being so sick for so long (being in chronic pain)

About 4 months ago, I fell sick. I was fine one day and the next I was bed ridden for 3 days with a nasty fever and swollen glands. The doc diagnosed me with Playringitis.

I began to feel a little better but the swelling of my submandibular gland continued to get worse. Between working, Xmas and moving house I didn't have a chance to get to the doctor.

In January the pain started to become unbearable, now in my new house I decided to book in with a GP. I was getting to the point of not being able to complete normal tasks like working and most importantly sleeping. This led me to become completely frustrated and upset.

My GP decided to do a blood test and a Panoramic X ray on my teeth and Jaw. He decided to do this as I have a history with TMJ which has not been properly treated. I also had a fall in 2016 when I hit my head when I was out on a bar (I was pushed) and I felt that maybe that was contributing to the pain. I explained that my right submandibular gland is extremely swollen and was experiencing extreme pain.

My blood results came back and the doctor said my red and white blood cells were fine and that my bone structure and teeth didn't look abnormal to be causing so much pain. After 3 visits and 2 seperate scans my GPS conclusion was that my 'Anxiety was causing the pain and swelling. Now I hit the point where I felt defeated.

I booked with with my dentist who felt the swelling in my submandublar gland and referred me to an Oral specialist. With a 3 week wait and determined to get some answers and relief I decided to book in with a second GP after I had looked on Google and found many possibilities of what it could be causing the swelling and pain.

My symptoms at this stage were extreme fatigue, swelling in my submandibular gland, a constant fever, irritability, jaw ache, ear ache and swollen lympnodes. Along with a Chronic Pain. I asked my doctor to test me for Mono. He was quite shocked my prior GP only tested my red and white blood cells. He decided too test Iron, Blood cells, Thyroid, CMV and mono. Along with Urine.

Test results

Iron - Ok!

Blood cells - Ok!

Thyroid- Ok!

CMV - Negative

Mono - Positive for 2 Antibodys

VCA IGG and EBNA IGG - Positive

VCA IGM - Negative

Urine - mild proteinuria noted.

Wow finally an explanation. I got these results on the 7th of February and I decided to finally take a week off work to get some rest. My specialist appointment was on the 14 of February.

The specialist noticed the extreme swelling in my Submandibular gland/Lymonodes and the pain and referred me to have CT Sialogram to get checked for blocked ducts and stones.

Due to the radiologist not being able to contact my specalist, he was unsure what sialogram to complete so he decided to do a CT scan of the Jaw/Neck and if anything came up, he would complete a physical sialogram. The radiologist said the scan showed swelling but probably not due to a stone and not worth doing a physical sialogram.

Soo, at this stage I am waiting for a call from my specialist and my next appointment on the 7 of March. I know I have been diagnosed with Mono and that the healing process can take months, but the cause of the pain has always been directly under my Jaw in my submandibular gland and the pain has not at one stage improved and to this day I am still in chronic pain. I am ready to give up. I can't handle to pain anymore and I struggle to sleep, rest, work and be a normal person.

I suppose, I want to know other peoples stories, Is it the mono causing the swelling for this long? Or this there really something else going on? I am starting to feel crazy and depressed. I just want some relief. I have had constant pain relief to try and help but medication like Panadine forte which is what I am prescirbed is beginning to not give much relief. I am taking Viral force, Vitamin C, Vitamin B and Magnesium to help recover.

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10 Replies

  • Posted

    Hiiiiiiii

    I couldn’t of wrote your post better myself! You are practically me! 

    Soooo July-17 I was hugely exhausted and a lymph node came up in my neck, went to dr’s who said I was probably coming down with a cold. Well I didn’t .... I googled found mono could be the cause? Went back and demanded to be tested. Came back active!!!

    I’m still struggling now I’m in month 7, I noticed a HUGE change around month 6  in neck pain etc but still hurts before was maybe a 8/10 now more a 5.5/10 it’s pretty much constant, my jaw aches, neck aches, all up to my ear, still huge fatigue, pain at the back of neck and also random shooting pains in head, I’ve had ultrasounds lots of stuff done they say I’m still recovering and could take a year or so!! It’s horrinle and I hate living like this. I just hope it will pass! SOON! 

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    • Posted

      Thank you so much for replying!! As bad as it sounds it is nice to know somebody Is going through the same thing. I can't believe yoour in month 7 and still suffering, I feel like that is going to be me for sure. Are you just trying to recover naturally or are you still making appointments to try and get relief?? I am ijn month 4 .... My next step is my specialist appointment and have also just had a ho me doctor give me a referral for a physio who specialises in TMJ. The mono has taking my mind off my Jaw and now they are both kicking it. Jaw feels locked up. I sure as he'll hope you feel better girl!!!! I am so fed up it's not funny. Oh and the fatigue is high

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    • Posted

      Yeah exactly the same . I have another ultrasound in a month. But all bloods are ok Barr mono. I’ve got to see a muscular clinic they are wondering if I have CFS/M.E which also gives TJM symptoms, because I’ve had it longer than 6 months and aren’t recovering. It’s crap I hope it will go. I hope u feel better soon! Feel free to message me back anytime! There’s a really good group on here chilled infectious mononucleosis xxx
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    • Posted

      Hi Rosanna,

      I have read a few of your threads and we seem to have had a lot of the same symtoms (neck pain, muscle tension, itching skin, jaw pain etc). Many of my symptoms are slowly disappearing but my jaw and ear pain persists, this is my 7th month. Did you have ear pain as well or only jaw pain? Has it gotten any better for you? I am 27 and this is my second bout of mono, had it when I was 16 also but that was a breeze compared to this time around... Looking for some hope that this ear and jaw pain will go away eventually. 

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  • Posted

    I have these exact symptoms (and more) since 6 months back, just found out a couple of days ago that I have mono.  A lot of my flu like symptoms are improving but the jaw and ear pain + swollen lymph node behind my jaw persists. Has it gotten any better for you since you wrote your post?
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  • Posted

    Thanks for replying!

    No, not really, fatigue is definitely better but my gland is basically swollen 24/7 now on Lyrics 25Mg and Panadeine Forte but I am going through it quick. Some weeks sre better than others and I managing to get through work finally. One day at a time. I have a specialist appointment this Saturday with a new Physician. I will keep you updated if I get any answers. Feel free to reach out for support, I know how hard it can be, especially when people can't really see it or feel it. Xxx

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    • Posted

      Thank you of the update! Yes, the worst part is that people around you don't realize how bad you  feel since there aren't any obvious visual signs of the symptoms. I do feel however that the ear and jaw pain has eased up a bit this last week. It's still there but less intense so I am hoping it's a good sign! Fatigue is better for me aswell. Fingers crossed that you will get some answers, or at least that you will recover soon! 

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  • Posted

    LYRICA**
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  • Posted

    I have a lot of the same symptoms like neck pain, muscle tension and jaw pain etc.

    I also have a pain in my ear but my GP didnt find anything wrong recently when he looked at it.  I know its only been a week but it hasnt got any better sad.

    What was the cause for you?

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  • Posted

    Hey

    My specialist apointment didn't go very well, he put me on Mosbic tablets and they didn't go and then wanted to try Steroids. I wasn't really open to that as they don't really know what it is. I am learning to cope alot more but I am still in lots pain in my right submandibular gland along and below my jaw. I have finally found a great GP who listens and gives me the pain relief I need. I am still taking Lyrica 25mg, Escitalopram, Panadeine forte and sometimes either Valium or Melatonin for sleeping. I stopped seeing the specialist due to cost and no answers. At this stage my doctor and I are hoping my glandulsr fever hit so bad and because I worked through it my gland id going to take along time to recover. Hopefully some relief at the 12 month mark, I am at 10. However, i am going to ask for a biopsy and if all comes back clear visit a naturopath. Definitely doing better mentslly and fatigued but some days I just have to stay in bed. So no answer as of yet.

    How are you guys going???

    Xoxo

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