Anyone Experiencing Tingling/desensitized sensations?

yea....ok thank u;

its one of the worst symptoms, in the top 5 as there are so many bizarre/painful things ive experienced with this virus

ok, thank u

mine is mainly upper body/started in arms and in spots in lower body-the desensitized feeling is really all over head to toe

ive been getting burning too which i had in the beginning

its been causing great anxiety making me feel so strange and more sick.....nausea is creeping in which i havnt had since the very first few wks-

eye headaches/strange headache is back to

feeling as if im sliding further backwards

just trying to rest more.....

hope youre doing good/hangin' in there

thank u Craig

i appreciate your insight

its been a brutal week since this started

ive never really had this symptom so it has created great anxiety for me

which doesnt help

this desensitized feeling is so strange/tingling mainly upper body face/a little on lower

and feeling my pain dulled is very strange as ive been in pain so long

it just seems off

pretty mych from head to toe this feeling....of desntitization

i feel sick too, really just different from before

things keep changing weekly it seems

eye/headache is back nausea too/ which was an early symptom-

burning muscles which i had in the way beginning

is this thing started all over again-:-(

i feel like im going backwards lately....

im losing my appetite again too

trying to eat well though keeping up on good nutrition

its emotionally draining to live day to day wondering how or what you'll feel-

thank u for your encouragement

i need it

this forum is the only thing that really calms me down knowing folks are or have experienced the same things as I, because this virus mimics a lot of diseases that are scary!

i did go to a nuerologist

he tested me

nothing too concerning but suggests brain scan to make sure if im really concerned~

he wants to play it safe

i dont really feel up for more imaging-

he also says B12 depletion can cause these issues too

i got bloodwork going too

ugh

back to the hunt^*

more dr's more tests with this symptom

i have hit the panic button so many times-

i feel like im in an Epstein-Barr prisoner of war camp and im being tortured daily and have PTSD from these last 6 mos......

tough

anywho-......

i hope you are well and are having a good/healthy week!

i thank u again ,I am faithful but wish GOD could speed up nature.....I pray all day everyday.......

this has been a such a test for me in all ways.....

Hi Starr,

I don't know if I can be much of a help since I still don't have a diagnosis and I still don't know what my body is fighting, but I have All these symptoms and many more. Reading posts here has helped me much more than doctors have the past 12 months...

I have seen so many doctors and spent so much time and money and no one ever suggested to be tested for ebv or any kind of herpes virus like shingles etc... The thing is I was healthy and happy before this and overnight I woke up thinking I was dying or poisoned! You can read my post, before x-mas, titled "been suffering since March, is it too late for a diagnosis" to see how it all started for me 12 months ago and I haven't stopped researching this .... Hopefully, next week I will be tested for ebv and I will have some answers.

I just wanted to share that the only thing that was found while I was tested was a very low b12 count, which all doctors agreed was not normal for my age , I'm 45, and that it had to be treated. Since September I am on a b12 injection treatment that has almost given me my life back, I almost feel like myself again. My treatment ends next month so I am just praying that my body absorbs it. Unfortunately I am still left with a very strange internal vibrating, pulsing, earthquake feeling inside me, especially at night but its not as intense and strong as it used to be, like its fading away or losing its batteries!!! I also get a shooting pain every now and then, here and there, or a muscle twitch, but way less than before, like a sensation or two a week!

Generally, the "feeling sick" sensation and physical anxiety is almost gone.... I kind of feel like I am reborn and am starting to remember how it feels to be normal again...

So, some kind of bug was/is depleting my b12 so now I just have to find out its name.

Hope this helps since I read that you are being tested for b12!

U are not alone!

Hi Starr,

It's distressing and upsetting when you get new symptoms which cause you to worry and just feel very unwell and unsettled, I just hope so much that things stabilise and that this weekend and upcoming week can be better than this week. This virus can often have different phases where maybe one week or month certain symptoms or things may be bothering you and that phase can burn out and pass and it might be something else another time, so frustrating I know.

Just want to reassure you that in no way are you back to the start of this thing again - there were times I felt like that when it felt like I had gone back the way and almost like back to the starting point - but believe me Starr your body is already six months down the road to getting this thing under control, even if at times it feels like it's going backwards, and it will get it fully under control with some more time. Every day is another day away from the day of infection and towards recovery, even though sometimes I know it doesn't feel that way, but that is the truth!

The strange zig-zag nature of this thing means that there are times it can feel like you are going back the way after a period of stability or progress - don't panic Starr because that is very normal during recovery from this thing, and it will settle and move in the right direction again. Sometimes a big step forward can happen in a short space of time after months of feeling like no or little progress is being made - often it goes this way with this so don't panic, progress and recovery will come!

Craig

I am actually currently in therapy with a diagnosis of PTSD from my bout with mono. Took 6 months to get diagnosed and I lost my mind thinking I had a deadly illness.

you said it!

its mind boggling Craig

this zig zag up down

you have no way of knowing what its next move is

i cannot keep up

it plays with your mind this process

you truly know exactly the way this virus operates!

i mean i thought i was on track

then whack backslide

that vaccine started it

i swear ill never let that go-:-)

i feel as if im on a roller coaster in a funny house at an amusement park the twists the turns things jumping out at you

this virus is so abusive

and a horrible room mate that i feel i have put up with far too long~

i hope you find yourself well....

praying for you and your health/healing

a tip:

have you tried fresh pressed ginger juice?

it burns going down but if you add apple/beet its good-

ginger root is easy to come by,

i find it dulls pain/it cleanses your adrenal system too....many benefits-it may help your back?......

i have a Breville juicer it works great not too expensive~$120+.00 range......

although lately

this "virus" for some reason im having dimmed desenitized pain/sensations

tingle?

id rather feel things honestly

i like to know whats happening with this virus .....

Hi Vicky,

Goodness what an awful year you have been through by the sounds of it. I am hoping so much that the EBV test can give some helpful answers, hope, encouragement and reassurance. I can only imagine how hard it must be to be so unwell and not know for sure what exactly is causing it, it must be so frightening and worrying. It certainly could be mono or a mono type virus if the symptoms are very similar to those that many of the people on the site here describe, just hoping you can get some kind of answers / help from the doctors which puts your mind at rest and enables you to move forward in good health.

I am pleased to hear that the B12 treatment has been helping, and it is only understandable to be apprehensive if that is due to stop soon. Is that only a treatment they can give for a short period of time? I'm not sure how that all works, I just hope things can be well beyond that anyway and that the injections have helped restore the right balance with everything.

I just want to reassure you that if it is mono or something similar then it will get better and it is normal that it can take this length of time - for me the first year was so horrible and hard and one of the very worst experiences of my life, but Year 2 was one of recovery, hope and healing and was SO much easier than the first year and I felt God has set me free and liberated me from that horrible virus, it was only down to God all the glory to Him for getting me through that I know that it was Him only for sure.

Taking vitamins and herbs helped me a great deal during recovery Vicky, a good strong multi-vitamin per day (I take Immunace Extra here in the UK), a B100 complex vitamin (GREAT for nervous system and energy levels, and perhaps that can help keep the B12 in check beyond the injections), higher doses of Vitamin C (1000mg-3000mg per day) and immune boosting herbs like siberian ginseng, echinacea, oregano. Definitely though for these symptoms of the nervous system the B100 and / or Co-enzyme Q10 can be great Vicky, and I've also found the herbs cayenne pepper, chamomile and peppermint very good for soothing the body and settling things down too. But of course I'm no expert on these things this is all just from my own experience / research - always important to check for any interactions with any other conditions / medications before starting any supplements / herbs.

Hang in there Vicky - very much just want to encourage you that there is hope. I believe that this year is going to be one of breakthrough and recovery for you, and remember God is the great healer - you WILL get through this I truly believe that. Thinking of you.

Craig

Jenna I'm hoping so much you are coping okay at the moment, I can only imagine how you have been feeling with everything you've been hit with lately - please hang in there and just hoping and praying for recovery and better times ahead for you.

Craig

Thanks for the tip / advice about the ginger juicing Starr - I take some ginger tablets but haven't tried the juicing. I have a friend who is big on the juicing too so it is something I definitely should think about. Thanks for your advice!

Oh I know the zig-zag nature puts you on an emotional rollercoaster, it's so hard when you can be feeling more settled and optimistic only to feel like you've been hit hard again and it brings you so low. I guess trying not to work this horrible virus out and just living day to day and trusting God is the best and only way, trying to show patience and endurance which is much easier said than done I know. But your health and body resilience and stability will come back with time Starr, truly I believe that it will...

Craig

thank u Craig

ive been really sick

i have not been doing great

that tingling is off on still but seems dying down

that skin desensitized feeling all over is still going and my pain that usually is bad is still dimmed

muscle weakness is pretty intense

my body is really tired

i feel really sick like in the beginning....

so strange

its confusing

youre welcome-

im glad you take ginger caps!

fresh pressed i think is good too...

hopefully you are feeling better-!

im praying to get through this phase

still strange how this virus kicks out new symptoms -its like i have to readjust from getting hit by a big boulder!

i know GOD hears me, i just pray for this to burn out soon......

wow

Vicky

im so sorry for your long journey

thank u for your info

your story is like mine

so are your symptoms-

i could guess that you have EPV!

i got so sick overnight!---

bam!

my immunologist says only two things operate that way,"viruses and allergic reactions"

that was Aug14/18- still running 6mos+

i too have been to dr's/specialists you name it-

i got a diagnosis four months in -

my infectious disease Dr tested me for Epstein-Barr and my numbers were high-

i asked him after seeing him twice-what virus attacks your spine?

he said Epstein Barr!

i insisted he test me

and sure enough

it all seemed to fit/make sense after that

he only suggested Flamciclovar/anti-viral

i took 500/mg/twice/day-

it did help

but not totally-

now after taking them for three months

im weaning off

they are putting toxins in my system and id rather just deal with this naturally

at the end of the day

a diagnosis was a great piece of mind

but i feel like there isnt much dr's can do-

we have to just wait and rest......

ive heard that EPV depletes your B-12

so again seems to fit

so glad youre doing well after the shots-

i started on B12 myself

i feel very beat up and im not sure what to do anymore

im losing hope-this thing beats you to a bloody pulp again and again

its overwhelming the dr's/bloodwork/er

this journey needs to end-:-)!

praying is helpful....

i wish you well in your journey and glad to hear youre better!!

ive been to six drs and my mom wants me to go to more ...she doesnt understand that there is nothing they can do .

all i can say is hold on tight as its a mental and physical roller coaster that is not pleasant.

take all the supplements ( not sure if they help) get rest and just sit and wait it out.

i thought id be better by now 11 months but not happening for me yet . had an ok period where i was able to manage things better but then relapsed after doing too much on one good day .

wishing us all a quick recovery and yes praying helps! ive done a lot of it !

Thank you Starr for the best wishes for me too, I really appreciate you keeping me in your thoughts and prayers. One thing I would appreciate prayers for greatly is a cyst I have in my stomach that I have to get monitored, due to have a follow-up scan in a few months and just hoping and praying I don't need any surgery as it would be a difficult and major procedure - if you could pray for that for me it would mean so much to me.

I just hope and pray for a much better week ahead for you Starr, the Lord knows what you've been going through and how you've been suffering. I wish there was an easy answer to it all, why something goes on for so long and makes you feel so unwell. But I really do believe that you are going to get fully well again Starr, I have strong faith in that and believe that God is working on things behind the scenes for you right now and has blessings and healing ahead in the coming period.

Hang in there Starr and remember God is with us, on our side and firmly holding us even when we are feeling shaky and down ourselves, something to draw comfort and strength from.

Craig

Hey Lori,

It's so frustrating when you see so many doctors and I know myself how it can grind you down and make you feel weary when you are trying to see them for help and it doesn't seem to do much good.

Remember God knows more than all the doctors, often He uses doctors to help us which is great but when we are finding it hard to get the help we need, remember Jesus is the great physician. He knows EVERYTHING that's been going on Lori and how you've been feeling, and He cares for you and I truly believe He wants you well and is working towards getting you through this and back to good health again.

Just hoping and praying for a better week ahead as I know you've had such an awful few weeks....just take it slowly and look after yourself, that joy and peace is going to return in your life Lori I have real faith in that thanks to Jesus...

Craig

Hi Starr,

Thank you, I wish you well in your journey too.

Yes ! Its exactly like you said it... BAM , I was healthy the one day and overnight BAM!

Hang in there, if my case is indeed ebv , I can say that it does get better. The first 6 months were by far the worst for me, if it wasnt for my 9 year old child to take care of I would be on a couch all day and do nothing. I only had really bad days and worse ones.

Then after starting my b12 injections I noticed that day to day I started to slowly feel better and better...Im still not myself but I admit that I feel that the bad days are over.

I never had anxiety before this but this demon came with anxiety and I noticed that anxiety made my symptoms worse. A book helped me deal with the fear and anxiety that came with these awful symptoms and that seemed to help too...it dialed them down a bit.

Anyway, hopefully this week I will know if this was ebv...

Hang in there, pray and things will get better.

Hi Craig,

Once again, thank you so much for your kind words and support. From my heart, I wish you all the best and may your wealth be your health. I remember before Christmas you said you were dealing with some health issues yourself ... so I hope things are better for you too.

Regarding the B12 treatment, yes, the treatment is usually a six month one. I started with weekly shots and now I am having my last monthly ones, so fingers crossed. For sure they were energy boosters, they gave me my lost wings back.

Hopefully this week I will see a new doctor and I may have some answers... I have seen so many and it seems I am the only patient they have seen with these symptoms in my country... its so frustrating.

Oh, chamomile is indeed a very relaxing herb, it helps you sleep too. Its very popular here and most people have it as their every day tea...

Thank you once again for your encouraging words.

Vicky

Hi Vicky,

Thanks so much for your kind and supportive words, I really appreciate it. Have been dealing with back pain and a few other things the last 18 months or so, still just taking things daily but God has been helping me things been more settled this last few months and grateful for that. It's all just small steps and taking things slowly and just hoping things can move in the right direction over time with everything - thanks for asking and for your concern, means a lot.

Good luck with seeing the new doctor this week Vicky, hope that it can be a doctor who is helpful and compassionate and offers some good advice and reassurance, rather than one who is impersonal and not much help at all, which there seems to be all too many of unfortunately. It seems to be hard to find doctors too that fully appreciate or understand how intense or long-lasting mono can be, I think too many just go by their text books which tell them it's a nasty virus but things should be okay within 6-8 weeks, when the reality is a good bit longer for many people unfortunately.

Glad to hear that the B12 injections have been making a real difference. It's understandable that you would be anxious about stopping these if they have really helped - remember it may be that your body has healed a lot during that time too and that you will still feel well and strong once finished the injections, I very much hope that is the case. Of course continuing with B100 complex tablets can hopefully help 'top things up' so to speak and keep things at a balance level, but of course best to follow the doc's advice on this.

Yes I've found chamomile very helpful for sure! Very relaxing! I know sometimes it can be hard to find the right balance taking things like that when feeling fatigued though as you don't want to make yourself even more tired.

Let us know how you get on with seeing the new doctor Vicky and very much wishing you good health, peace and many blessings going forward after the tough time of this virus - hang in there, you are making progress and better times are ahead!

Craig