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

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

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.

 

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! ?

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.

 

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

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! 

I have the same mouth issues. My mouth and lips have hurt the whole time i have been sick with mono. In the beginning it was unbearable almost. Several doctor visits and nothing they could do. They say it is part of the virus and it must run it’s course. It really is annoying. 

Thank you for the reply! The mouth pain is very distressing..I just need to accept the fact its part of it..tried everything I can think of to help it without any lasting results..wishing you well..take care

Hey Brent - how are you doing now? I hope things are a bit more settled for you. I know you've been through such a hard time. Thinking of you man.

Craig

Thank you for everything and your support. It’s been hard for the past year or so. This site has been a blessing. I believe I turned into a cfs case. I am very sensitive to light and my vision is not good. My sleep hasn’t improved much either. I have had to work much of this illness. To anyone reading this, learn from my mistakes. Listen to Craig and everyone else on here. Rest, reduce stress and try to accept where you are at the moment. I didn’t do these things very well and I am paying for it. Craig thanks for everything. God bless you.

God bless you too Brent, thanks for the kind word.

Please don't be so hard on yourself - you haven't done anything wrong by trying to get on with life when this virus hit, everyone does it!! I know I did for sure, but then it brings you to a point often where you just need to stop and take a complete step back for a while. This doesn't mean you won't recover Brent - even though it's going on and on and I do still believe you are going to get better, truly I do - hang in there. You're surviving and that's all you can do at times with this - it's gonna get better it really is I trust God with your healing Brent.

Craig

Thank you for your encouragement. You have helped a lot of people. God is going to bless you mightily for your time and effort. 

Brent, i hate to hear you going thru this! And if your still working some you are a very strong person! Give yourself credit for that! I seriously have been pretty much immobile the 1st 5 months and just now trying force myself to get out house to see grandbabies and sit and play small games with them..yesterday took a short walk and I'm wiped out today..i can feel it in my eyes (so blurry) and skin even hurts today..idk? I laid and rested and trying to eat healthy (when i eat, no appetite at all) and trying take vitamins especially D3..and so far the rest has not produced any positive improvements so i wouldn't condemn yourself for pushing thru! Have you been diagnosed with CFS? On any meds or treatments? I trying steroids for a short right now..after I took my 2nd dose yesterday I seemed to feel a bit of energy but today is a down day again..who knows what's right here?! Guessing & waiting game..wishing you well Brent! Take care! Lecasco

I don’t manage to answer you all individually as my brain is fogyy and I am really weak now.

There was time I’d go out for a walk or even for a run with my kid. I’d run, I’d climb and jump. I had enough energy to do household chores too. 

I don’t recognize myself, here I am lying in my bed tired because I don’t get enough sleep, I sleep but I see lots of dreams, I think it’s called REM. Some days I even don’t have energy to smile. I’m worried more about my family. I am not able to take care of them at all. 

Sorry I needed to vent

Vent away Christine! Im with You! I wish i cud find a magic cure for all of us! I took a big spoonful of Manuka honey last night at bedtime and i slept better than normal but then again I think it is possibly the reason I feel like death today cause of "viral shedding"..think one is supposed to take little bits of it and work up to higher amounts to tolerate..or thats what I'm reading..🤔..also been reading about black seed oil some swear by..along with thyroid supplements with iodine, selenium, l tyrosine, zinc and others..I found one on Amazon but know cannot introduce more than one at a time slowly to see reactions..oh yes! Specifically for EBV is supposedly monolaurin..sorry you're having such hard time! I know its hard for our families too..maybe we climb out of this in near future! ?

My story started December 2016. I got really bad sick. Several months before that I went through a divorce and got spotted tick disease. Tick disease and stress from my divorce had my doctor thinking that was what was giving me flu like symptoms. I didn’t find out I had mono until end of December. He told me to take a couple weeks off and rest and I would be fine. Long story short it didn’t happen that way. I have taken several weeks off at a time over the past year and half. I have been on antidepressants and experienced every mono symptom under the sun. I have seen several different doctors and they all say it takes time and could be 2 or more years. My doctor said he could have signed me out of work for a year and it would not have helped. He finally said you have cfs and you need to accept it. I am a single parent with a son and bills to pay, so I have been forced to work. My shifts are 12 hours. I try to rest when I can but it’s hard. I just keep going hoping for the best. I am starting to get very tired though. I keep trying to hang on but it is getting harder and harder.

Me being 49 doesn’t help much either.

Me 52! Yikes! I still have to hope something left in there to fight! ☺

That's so much! Hope you have some support from family or friends around you..sure it's a very trying time! I pray this is not a chronic thing for you! (All)..take care & wishing you well!

Thank you Brent, it's so encouraging when someone says something like that. For you to take the time to do that when feeling so rough yourself says so much about you, and I fully believe God is going to bless you too - He works in often mysterious ways, and it's only afterwards we can look back and see how He pieced the jigsaw together for our good - so if it's not great just now just remember God is the master at turning seemingly hopeless situations into good and blessings - hard to comprehend in that difficult moments I know, hanging onto that hope and belief today.

Craig

Agreeing with Lesaco, Christine - there is never any need to apologise for letting off steam here, everyone knows the frustrations from their own experiences of the virus, and we're all standing together for recovery - this is going to be the end result for you Christine, full health and happiness again.

Craig