Strange symptoms..Severe mouth, gums and palate pain on top of feeling so weak and flu like..very sc

Ears, nose and throat
21

Thx so much Christine..that makes sense on the clenching..so annoying..caught myself doing it right now..good grief..take care..

22

I hope it all goes ok for you as im not to sure about the procedures. Im really scared about the scope and im kind of dreading it abit like yourself im scared of the procedure and if they find something bad and im also scared theyre dont dind find whats causing it or cant cure me i think my anxiety is starting to kick in again i really just want all this to be over i dont know how much more i can take with feeling not to bad one day then getting really freaked out the next 🙁 not what i know of i dont clench my teeth ill keep you updated about my app i feel like asking for predizone all thanks very much for your reply it means alot 😊

23

Hi Lesaco,

What a terrible time you've been going through, I just really hope and pray this horrible time will pass soon, I know you must be so weary and exhausted. Please do remember with mono this lack of energy and all sorts of weird pains and symptoms can be normal, it's so depressing I know but I want you to know that there IS hope and it DOES get better given time and you will be able to be active again and do the things with your daughter and granddaughters again, you really will.

Thinking about you Lescao, just take each day as it comes right now, don't beat yourself up and remember it's okay to accept that today might not be a perfect day in how you're feeling but that you will come through this and see light at the end of the tunnel.

Craig

24

Good luck Poppy with your procedure, it's very understandable to be apprehensive about these things, hoping everything goes well. I do understand as was going to have a colonoscopy last year for my back issues but decided against it as was most likely not anything there causing my back issues. Been having some prostatitis issues too lately, been getting me down also, just praying God can save us from these hard times and give us new hope and strength and life again, thanks to His healing hands and goodness.

Take care and hang in there

Craig

25

I also forgot to mention my doctor has put me on lansoprazole for acid reflux? He asked if i had any chest pain or stomach pain which i havent really had before up untill the last two weeks sloght discomfort in the top of my stomach that comes and goes but because of all the diff GF symptoms didnt no if it was anything to do that with that or something different so confused trying to guess all the time 🙁 hoping thisisnt the start ofdomething i just put it down to my diet slightly changing because ive triedto eat a little healthier but i really dont know?

26

Thanks craig your support really means alot i dont no what id of done without all you people and this forum so hard to understand if you havent suffered from it really hope you get somewhere with your own health problems we have to keep pushing our doctors too as sometimes i think they are quick to dismiss and feel there is a always a timescale at your appointment i also wish i had seen the same one from the beginning so i dont have to explain a huge list of things each time within a couple of minutes.

27

Poppy, A big thank you and digital hugs to you and Craig! 😊 I will spend all day drinking gallons of nasty laxative stuff to prepare for tests tomorrow so you can probably guess which room i will be spending the day in..fun fun..Poppy, please try not to be anxious about the ENT visit..with all the other strange things ebv does to our bodies it could just be affecting your ear..hopefully the ENT will be a good one and try something to relieve your pain tho! And then again you could have a secondary bacterial infection which maybe an antibiotic could help..but please don't think the worse! If your nerves are bothering you that can very well be causing some of your stomach problems..believe me, i know..I hope you have a good day..take care of yourself..

28

Craig, thxu so much for your kind words of encouragement! Sure need to hear and believe that! I am sorry you are suffering with back pain and prostatitis..I hope you have had it checked by a dr and also your PSA checked..an enlarged prostate can cause bad back pain..(I have had a 2 family members who have suffered from enlarged p and after treatment felt much better..im sorry if i missed what you have done to investigate your back pain with drs..I'm new to this site..God bless and take care..😊Lecasco

29

Thanks for the kind words Poppy and Lesaco - just want us all to be well again and to get through this. Still believing that things are going to get better. Hang in there guys....the positive energy of this forum is going a long way to defeating any sickness.

Craig

30

Thanks Lesaco, yes I'm just finished a course of one month's antibiotics but hasn't seemed to help. Going back to the doctor to see if there is anything else they can do. It can be so disheartening I know when you feel like you're trying so hard and can't get there. Just need to trust God that He is for us in our trials and He is with us and will see us through safely and without harm smile

Craig

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Thank you please keep us updated how everything goes ok and hopefully its one step closer to recovery 🤞🏻 Thank you for your kind words too this forum really does help when your feeling down 😊

32

hi lecasco how did your procedure go?? 

33

Hi Poppy, it went fine..the prep was the worst part all day Monday, especially when i feel so crappy anyways...the dr found and removed a small polyp and tells me he is testing it for anything he can to see if he can find a relation to what causing me to be so ill..my fingers are crossed that it could be something minor and treatable! Each time I go to a dr & leave with no answers it gets me totally down in the dumps..i dont know if the drugs they gave me in procedure affecting me but i laying here in bed feeling worse than ever..how are you feeling? Are you up and around & able to accomplish things? When is your ENT appt? Appreciate you asking so much, meant alot to me..lecasco

34

Hi Lecasco. Glad you're done with your procedures. When are you going to find out the results? The waiting time is the worst time, I can relate, I get so nervous, cannot sleep well, have panic attacks until I find out the results. But I'm sure you're going to be ok, I don't know why the doctor said a small polyp could cause so many symptoms. Your symptoms are classic EBV symptoms, especially that you've been diagnosed with active EBV.

I also got my EBV results yesterday and they show a past infection which means nothing in this case as my doctor says 95% of population have the virus.

 

35

Hi Christine, the dr didnt think the small polyp was causing or resulted from any of my problems, i just hijacked him before the procedure (I had never met him before) and laid out all of my issues and begged him to test me for Anything he could of a biopsy of any tissue he took..he seemed compassionate and told me he would and it would take 5 to 7 days to get all results back..just me grasping at straws out of desparation..I don't think it means anything that you tested negative for ebv as that does not mean you are not suffering the effects of the past virus! I've read sooo much about this and many people test negative for current virus but still suffer from the effects..call it post viral syndrome..I imagine I would test negative for current virus now myself as this seems to be the story for many..the one part of this I have a hard time accepting in my case is this painful mouth crap as part of ebv! The pain and burning even on the inside of my lips and the teeth pain is so strange and almost unbearable at night..I have a positive blood ANA indicating an auto immune disorder and i am really wondering if there is any correlation from long term ebv sufferers and auto immune as i truly feel as if my immune system is attacking nearly every cell in my body! Also, i have 2 grandchildren who get colds frequently and i NEVER catch a cold or anything..I can't recall the last cold i had..idk? Im rambling again..I'm sorry, in one of my "deep dark down moods" again..how are you feeling? Are you able to function at some normal capacity as i am simply not and i am so p***** off about it! My last nerve is almost frazzled! Wishing you well dear! ☺

36

I'm sorry you're going through this, the anxiety and worry is also a result of uncertainty and maybe also part of the EBV? As for the mouth, do you have a burning mouth and throat? Couple of years ago I had a burning mouth and throat. My tongue and gums were burning and sore. I was in so much pain, I'd wake up during the night and cry. Nothing helped, doctors had no answers for me. I had also stomach cramps, abdominal strange pains and what not. Now when I look back it might have been an autoimmune thing as well. I have elevated blood markers for Sjogren's but no diagnosis. 

Do you suffer from acid reflux? I was given antacids at that time but no help. IN the end one doctor prescribed me Nistatin for swishing my mouth and it helped a little bit.

 

37

Hey Lesaco,

Oh I know the feeling of leaving doctor's feeling so deflated and hopeless, it's so awful and as the guys say the waiting around for results are things can be so agonising. Just remember don't give up, there is still hope and you will get better I truly believe that - same goes for you Poppy and Christne. And sometimes not giving up can just mean resting, with this your body just often needs extended rest and that's okay - don't beat yourself up but that's when your body heals best and it's important too - it's not anything like laziness or apathy like some ignorant folk might have you believe, your body is so physically drained when going through it that rest is so important during recovery.

Craig

38

Pleased youve got it out of the way hopefully they will get back to you soon like everyone else keeps saying the worst part is definitley waiting for results but really try and put it out of your head and focus on resting as anxiety/stress really will slow any recovery process!! (I should really try take my own advice) ive now seen the ent he said it does def sound like ive had GF but missed out catching it on my blood test due to all my symtoms everything seemed ok and he thinks im in the recovery process he said yo give it a couple of months and if anything gets worse/doesnt improve to go back and see them i feel like he listened unlike the doctors in my own surgery!!! He advised good diet, plenty of fluids and ride it out!  really hope you see some imrpovements very soon! 

39

Hi all,

I am checking in and I feel like I can relate to you all on such a wonderful level. Christine, I too was past infection and suffered from many of your symptoms (still do from some). Lesaco, you are correct with the post viral fatigue theory as that was the conclusion 3 different doctors came up with.. I was so desperate to find out what’s wrong so I can TREAT this thing and help myself. It is so hard to believe that a virus can make you feel so awful. 

I just want everyone to know that I’m at 5+ months but things have improved. I have crashes still but they are milder and shorter.. no where near the terrifying fatigue and pain and weakness I felt at the beginning, when I was sure I was dying. Your days will slowly start returning to normal. I am now back to work on my feet (work in a daycare) for 12 hours. Yesterday I went grocery shopping, did some major spring cleaning, walked my dog for 30 mins.... I just want to let you know how much things have changed since 5 months ago when pouring myself water would wipe me out and leave me gasping for air and back in bed.  Let’s all look forward to the summer... 3 more months .. we will see  improvements in our health by then I am certain. 

Hugs. This is a terrible thing to go through, I am so thankful for this forum and every compassionate person here. 

40

I have done an x-ray of teeth today. Turns out I might have a bone infection...I had bone infection 7 years ago in the same place. I hope it's not widespread as my symptoms have started last year i April-May and they started with a cold sore on my lip. At first I was suspecting something is wrong with jaw and gums. But my oral surgeon wasn't concerned. So now I'm here sad