Can anyone relate?

hi laura sorry to hear that bless you its horrible, ive basically thought ive been dying for 3-4 years. im not 100% now tbh. I still get some stomach issues although im on sertraline so could be that. Basically i think the anxiety and stress it causes keeps it all going. How long have you had it?

thanks Chris yeah its the worst! i have had this monster for a year next month. you ate definitely right about the stress it fuels it! it does make you feel like your dying i thought that too. im just cutting down on my Sertraline at the mo im trying to go without meds and just take supplements.

poor you having it that long!

ive not told anyone either as i didn't want to worry anyone plus i'm not sure they would believe me. Its been horrible tbh but what can you do. im guessing it was stress/trauma that originally activated it. Its like it gives you all that horrible stuff but actually doesn't make you typically ill if you know what i mean like laid up in bed or hospital. ive only just started on sertraline as i was getting really down it seemed for no reason ive not suffered from depression till this. another weird symptom maybe. im finding its helping i hope you can get off it ok im sure you will.

yes this virus messes with your head, its weird how your symptoms vary from day to day. like i will get a stabbing pain in my foot for a day and then it dissapears completely later on that day. it does get you down, i have never got depressed but this has messed up my mental health.

yes a trauma, stress or bereavement can really bring this out. mine came two months after a awful labour of my daughter following no sleep for a month.

you should talk to people though, my partners been great he listens all day every day haha. i think its hard for people to understand because even having it myself im bloody confused!

it just feels nice now just to talk to you about it really so thankyou very much. Did you ever feel like you couldnt get enough air in sometimes when you breathe? i had spiromitry test and it was fine. mental! yeh your right about the pains i get random stinging knee pain for a few mins every few days. i hope all went well in the end with your daughter

thanks Chris my daughters fine. yes i got the breathlessness and still do. even walking up the stairs. i saw your message to Jay about MND and cancer and i have had all those fears too. i was undiagnosed for two months and had such bad twitching and the doctors disnt have a clue and because my bloods were fine i automatically thought its definately a very serious neuro condition. im still waiting to see neurology but its take the nhs a year to refer me, so the mind wonders to dark places. i blame them for my slow recovery because they have palmed me off with no support and no knowledge of why the strange symptoms arr happening. have you seen neurology?

whatever you do avoid alcohol!

no i havent seen them. i mentioned to the docs when it first started and they thought anxiety and sent me for cbt. Since then weve had covid and you know what its been like so ive just battled through. I dont seem to have the weakness feeling anymore just the twitching so i think if it was MND id know about it by now and so would you! its crap because i love a drink and im self employed it chills me out.

its weird i found the twitching caused my anxiety and not the other way round. but i was told the same thing. yeah i think we would know about it by now your right.

i miss the drinking too but have learnt its not worth it, i have had one drunk night in a year and i really suffered for it haha

hi jay do you think so? im thinking i may have had the original thing in 2019 and then covid maybe aggrivated it in 2021. i honestly cant understand how it does so much tbh. i really thought i had MND to cancer and everything else in between but 3 years later im here and like i say not poorly as such just have these niggles! thanks for reaching out it seems only us get it! im not taking supplements and tbh i dont look after myself as well as i should really. i skip meals and drink etc 😔

Yes i like to think of it like this.. "A virus can do whatever it wants" no symptom is off limits with this beast. I also feared having cancer etc... I looked deeply into this thing and learned a lot. Thats how i simply know by reading your story its definilty ebv wreaking havoc. I would start by losing the drinks and cleaning up your diet. Also taking supplements and herbs to help boost the immune system. Once you have ebv it never truly goes away sadly but it can be put back into dormancy again.

How long did it initially take you to get better or see improvements when first diagnosed in 2019?

cheers for reply jay. i dont feel like ive ever got better truly tbh but looking back the weak legs and breathlessness or feeling of not getting enough air probably lasted about 6 months

the weak feeling in hands and arms over a year

ive only had gland pain after covid weirdly not before.

anxiety never went away and got depression

still get pins and needles now and again along with knee pain that lasts a few seconds.

still have muscle twitching which im actually used to now!

i dont feel tired like i used to. i work 40 hours a week in a manual job.

still get weak hands upon waking but last ten mins if that

congestion still here

sometimes i get excess saliva

hope this helps mate

So sorry Chris! It sounds like ebv has been thriving in you for a while. This virus is brutal! Look into supplements they will help a lot!

thanks jay its ok though i suppose its not that bad now i think the majority of it is anxiety that makes things worse. its the anxiety and stress that you suffer if you have health anxiety that no matter what you always think the worst ie cancer etc. i think that is something we all have in common and the virus feeds off the stress and its a cycle of doom. One thing i have noticed and i dont know if others have this but i sometimes feel strange like panic feeling and tight chested after eating certain things or at certain times not always but it seems to agrivate something for an hour or so. so random and vague and wide ranging thats really the worst thing about it isnt it. How are you getting on now?

sorry to hear you have had all the things jay. yourself and laura are the only people ive ever talked to about this

Yes ive experienced the chest tightness as well. Whats happening is the virus is inflaming your vagus nerve which cause the chest to feel like it tightening at times. I used to fear cancer but thats something that would should on blood tests and ive had plenty so i dont even let that get me startled anymore. I know its this virus and it could do many unusual things to the human body. I'm having more normal moments but far from feeling like my usual self but in still early on. I'm sorry you have been alone in this and had no one to speak to about it. You have us so dont feel like you have to keep everything hidden as talking helps.

thanks that's really nice. You seem to have done your homework on this fair play

I have its crazy what i've learned. I like to know the whys and hows of things lol. I've always been that way.