Desperate
Posted , 8 users are following.
Hi all, I'm desperately needing help and after scouring the Internet can find no explanation for my horrific symptom.
I was first diagnosed with ebv/glandular fever 4 years ago and although I was unwell initially, I recovered into a semi normal state over a period of weeks, quite honestly never really the same though, I'd get annoying symptoms that would come and go, but for the most part felt pretty well and was able to work as normal etc.. until a year later and I got pregnant, I got extremely sick but recovered in 4 months. it was all pretty horrible, extreme fatigue and feeling like I had a hangover everyday for 4 months, then it went. I was left with chronic low level fatigue and never fully recovered to pre ebv levels, but for the most part again life was normal.
fast forward to 2 months ago, I get all of the same symptoms again after a traumatic event and think ok, here we go again. the first two weeks of illness felt like before, sore throat and terrible flu-like symptoms like when you are first coming down with it, then something changed. I felt a strange kind of anxiety feeling one day and then couldn't concentrate on anything, then I couldn't sleep, like my nervous system was revved up, like having speed!! this went on for 4 days without any sleep, I was climbing the walls. then extreme night sweats. Over the weeks it has changed and now for around 8-12 hours of every day or so, I feel like I'm being strapped to an electric chair and current passed through every part of my brain and body. it is utterly unbearable!!! when I'm in one of these episodes I feel like I'm never going to get better and I'm climbing the walls suicidal. it's total unrelenting torture. I get breaks, but during the breaks I get loads of other symptoms, mental weirdness, detached from reality and freaking out, night sweats, insomnia, racing heart, violent shaking from the inside out, sore throat, dry mouth, weird white patches on tongue, pain in neck, zero appetite, lost 2 stone in weight, dry cough that makes me gag constantly. I'm an absolute mess, I'm in total survival mode. I have a 15 month old who I cannot care for at all, she's in full time childcare and my partner does absolutely everything else while I just shake in a dark room. it's so extreme. Has anyone out there had symptoms as extreme as this?? ive dealt with this virus for 4 years and never has it done this to me before. I should add that i tested positive for active infection 9 weeks ago. Please help, I don't want to leave my daughter without a mum!!!
0 likes, 44 replies
Mono_too martine25248
Posted
Also have them check your thyroid levels as hyperthyroid can cause these symptoms and it is vulnerable to the virus.
EBVfighter martine25248
Edited
I completely understand everything you wrote and feel every once of your pain and frustration as I'm going through it also! The internal tremors/vibrations/quivering/buzzing/pins and needles has me feeling I can't push on any further. I finally get to see a Neurologist next week praying for something, anything at this point. Have you seen a Neurology specialist? What about Infectious Disease specialist? Your primary care doctor can get you referred. Have you given any thought to enrolling into clinical trials. That's the path I want to take. There's way too many of us suffering with little support from doctors and no treatments.
Be well, get well, keep on-keeping on!
martine25248 EBVfighter
Posted
Ive struggled so much with how to describe the sensation, its unlike anything else! is it like pins and needles in your whole nervous system? it's like the worst pins and needles in the whole core of me! it gets so strong that I can't concentrate on anything! I've paced around the house all night like a caged animal it gets so bad! i do get breaks for a few hours through the night to sleep, and sometimes get breaks from it in the day, but its absolutely impossible to sleep through it. What other symptoms do you get?? I've now been referred to a neurologist, hopefully he can shed some light. I'm absolutely terrified that it's permanent and never going to get better. I'm 4 months in, how far in are you??
EBVfighter martine25248
Edited
I feel your pain, truly. When I first noticed these internal vibrations, I had no clue how to describe it, I just searched online for "internal buzzing feeling" and found others that said the same. After I learned how to describe it, I went to my doctor about it. She ignored me. After the 4th opinion attempt, finally found a doctor that listened to me about the vibrations/tremors and that's when EBV was discovered in my blood work.
My journey goes back to July of 2021, where it all began. So I'm on 13 months now. The better news I can share that may shed hope is I first felt these internal vibrations back in January of 2022 and thank God, they only lasted 2 months. There was a time when I believed just as you, that it was permanent and I'd never get relief. To my surprise the internal vibrations lasted 2 months. However, another set of symptoms began. I did write my own blog, so feel free to visit my page and read what I've written. I have all my symptoms listed along with my journey and some tips and tricks. The bad news is that the internal vibrations are back again which started up again July of 2022, still have a horrible time with them as of today. My infectious disease doctor send in a referral to Neurology, and I finally have my appointment next week!
I do question whether EBV is causing havoc on our adrenal glands which could perhaps cause us to feel these internal vibrations in my opinion. From the countless blogs I've read, people who are going to Neurology for this very reason are showing up with a clean bill of health. I'm not super enthusiastic that Neurology will give me an answer, but atleast it would rule other health issues out.
I'm incredibly grateful to have found this forum. It's truly given me back hope when all my hope was gone. So hang in there and believe this too shall pass.
Feel free to read my blog and see if that helps in any way.
Keep on-keeping on!
Until next time!
saba2012 martine25248
Edited
martine25248 i fully understand where you coming from with your symptoms, my symptoms hit me overnight, my whole life changed, i had to be hospitalized in mental health hospital three times and they could not help me, the anxiety was the worst, i could not sit still was pacing through the house, my legs were completely restless, also the detachment from reality, crazy thoughts, suicidal, and all the symptoms you are listing, i really thought i was going crazy, insomnia came overnight, i have appetite now, but at first i could not eat, lost 17 pounds, the burning sensation all over your body, then burning sensation on your head, bad headache, neck pain, my skin on my face feels like sandpaper and i never had any issues with skin problems, and on top of it, complete exhaustion, tired, and i was a very active person before, please don't feel alone, i had an mri of my head done and an eeg, my neurologist requested it, i've told him all my symptoms, also started having tremors in my hands, so all the mri and eeg came back with no issues, so was glad to hear this, just this ebv takes toll on your whole body, your nervous system, gastro system, pretty much everything, from one day to another my whole life changed, here for you if you need to share, hang in there, i started all these symptoms beginning of april, so before i've told everyone, for me is inch by inch into getting better, now is day by day, i have good days and bad days, so you are not alone in this
martine25248 saba2012
Posted
wow Saba, our stories are so similar in how extreme our symptoms have been. I was also almost hospitalised on a psych ward two weeks ago because I took an overdose, I just couldn't do it anymore, it was just too bad! The psychiatrist that came to see me agreed that I could stay at home and a mental health nurse would visit me daily. I was a completely normal person before this, never had a mental health issue, my life changed overnight!! My skin on my face is also like sandpaper, so very very dry! what other symptoms do you have? I have so many still! I feel like a ghost of my former self, and I have a baby who I can't care for anymore, which is utterly devastating! I'm also having ok days, but never symptom free. I have also been ill since April. I saw on another Thread that you now can't sleep in the day at all? neither can I unless I'm heavily medicated, I used to always nap in the day, now it's impossible, no matter how tired I am, my body won't sleep! I've never had trouble with sleep, now I dread it, it's horrible! I only get a few horrible hours of sleep a night, it feels like my skin is crawling and burning and the vibrating in my nervous system just wakes me all night. The only thing that helps me sleep is high doses of gabapentin. I feel trapped in this sick body on a journey I can't get out of, my mind and soul is broken. I cry everyday and grieve for the life I had 5 months ago! I fear I will never recover!
EBVfighter martine25248
Edited
It saddens me to hear others crying everyday. I wish we all could get our lives back, each and every one of us. I think if we shifts our thoughts to what we can control, it's a start. We do have control over our diet, nutrition, and rest. What are you doing with your diet these days?
One thing that has really helped me is reading recovery stories and hearing how others did infact get their lives back. It's a good reminder for me each and every single struggle that this too shall pass. In the mean time, keep your mind busy as you can. Do you like to read? Enjoy calming music? There's a slew of calming videos on YouTube that I play nightly as I'm trying to fall asleep.
I continue to pray for all of us, and wishing you well. Better days will come.
martine25248 EBVfighter
Edited
Hi EBVfighter, thank you for your kind words. In answer to your questions, I have tried changing my diet entirely and did this for about 3 months. I cut out all wheat, dairy and refined sugar, as well as Soya and Maize products. I was basically eating fruits, vegetables and lean white non-processed meat. I was also drinking fresh celery juice daily as well as juicing other fruits and vegetables. I also did not consume any alcohol or caffeine or other major toxins. Sadly although I stuck to this regime rigorously, as well as a plethora of recommended supplements, I saw no improvement in this time. I have since resumed my normal eating regime and have seen no decline in my condition as a result. Diet of course is incredibly important to overall health, but I had a pretty healthy lifestyle beforehand- never smoked, very occasional drinker, don't take any recreational drugs, drink very little caffeine and eat little processed food etc.. I do eat sugar and dairy and gluten etc.. normally and cutting it out hasn't aided my recovery any, I wish I could say it had, it would be any easy fix if it had! sadly none of the supplements have helped any either and I've kept up with them the entire way through, but they haven't done any harm either. I have struggled with most activities that require even the remotest concentration and am only now beginning to be able to watch TV a little. I spent 4 months starring at a spot on the ceiling trying to focus on simply getting through the torture in my body!! A lot of that time was spent crying out begging for help with my family taking it in turns to hold my hand and coach me through it. It has been a horror show!
EBVfighter martine25248
Edited
I feel your pain. There's 3 months that I did absolutely nothing, just layed there and cried. Thought I was literally wasting away.
Did you see a functional medicine doctor that prescribed supplements? What supplements did you try? I hear a lot of good things about monolaurin, so I've been asking around about others experience with it.
Be well, one day at a time.
martine25248 EBVfighter
Edited
I have a friend who is a functional medicine practitioner who recommended all the usual vitamins, plus magnesium and monolauren. She also recommended the diet change and juicing. Sadly nothing seemed to help on that front. Maybe it really is just time....hard time!! How long before you felt semi-ok??
EBVfighter martine25248
Edited
I'd have to say the absolute worst time for me so a full 3 months in the beginning. After those awful 3 months I was left with a Rollercoaster of symptoms that will come and go. The intensity of the symptoms has let up some.
Honestly those 3 months are quite hazy to me as I literally thought I was on my death bed.
I finally see Neurology tomorrow. I kept a journal of my symptoms to bring with to the appt. I hope it helps get some answers.
Trying to stay strong one day at a time.
I wish you well.
martine25248 EBVfighter
Edited
Gotcha, thank you again EBVfighter, makes sense, the first 4 months for me were like this, I really thought i wasn't going to make it, I'm absolutely traumatised! Things have improved slightly over the last 3 weeks, but I'm always afraid I'll slip backwards to that terrible time, because I still have utterly horrific days, just not every day like before. I also have a neurology appointment next week, do let us know what they have to say won't you? I'll do the same, it will be interesting to hear what different doctors have to say (if anything useful at all!)
EBVfighter martine25248
Posted
martine25248,
Unfortunetly my neurology appointment did not turn out at all how I would have hoped. I have a full post on how it went as a new discussion for all to see.
I would absolutely love to hear how your appointment goes. Praying it goes better than mine did!
Be well.
saba2012 martine25248
Edited
i don't know where my message went, today is a bad day for me with ebv, i don't know if i ate something or whatever, my blood pressure is high, this buzzing in my head like you describing, everything changed overnight, i only go places where i really have to go, like grocery shopping, anxiety is sky high as it is again today, this ebv is horrible, my life also changed from one day to another, i was always tolerating heat, now i can't even be in the sun, please share you struggles here any time, i know is hard
martine25248 saba2012
Posted
How are you today Saba? I'm having an OK day today, but had an awful day yesterday too! I'm also having trouble with heat sensitivity, my body burns at night and it feels like my skin is burning if the sun gets on it. Are you seeing any improvement at all? I think I am, but I'm so scared to say that because every time I feel like might be going forward, I always fall backwards again!
Mono_too martine25248
Edited
This is the beginning of recovery, the roller coaster of good days mixed with a few off days, then it will get better from here, just rest through the bad days and know recovery is coming. Heat sensitivity is very common.
martine25248 Mono_too
Edited
Mono_too, I am starting to see slight improvement, but still having some terrible days and when I have them it's devastating and I feel back to square one! but I am having more and more ok days, never symptom free, but bearable! I don't want to say it too early, but perhaps the tide has begun to turn! I still feel like I have a long road ahead. How long did it take for you once you started to recover??
saba2012 martine25248
Edited
martine i hope you doing okay, yes just reading the post from mono and this is so crazy when she is describing the rollercoaster of symptoms, i never had headache before in my life, with this ebv these strange headaches are really awful and the burning sensation on either top of your head or the side of your head, today is very hot outside where i live, so as long as i'm staying indoors i'm fine but when i have to go outside it feels like my skin is really burning, so glad we are sharing our "symptoms" and others advise who went through ebv and giving us who are still struggling positive outlook
Mono_too martine25248
Edited
Hi Martine,
I would say the on and off days last a couple of months, I would get occasional down days if you over do it or have a virus. I have learned to think when I have the bad days that its my immune system working on clearing the virus, so just take those days to rest and know better days are coming. You are going into the recovery phase, bearable is a good way to describe the first part of this. Be encouraged by this.
martine25248 Mono_too
Edited
Mono_too, you were right!! im finally on the road to recovery!! still feel exhausted after too much activity and cant do a normal day yet and i still have a horrible sore throat and feel achy and just generally yuk, but thats it! the vibrating has stopped along with most of the other really bad symptoms, i can sleep again without too much trouble and my emotions are gradually coming back and the brain fog and horrible mental weirdness has lifted. I feel like me again! still a way off fully recovered, but I'm through the other side. Five and a half months of total utter hell that I will never forget and probably never fully get over as long as I live, but I'm finally getting my life back! Thank you for all of your words of wisdom and encouragement throughout this terrible ordeal! Martine.
Mono_too martine25248
Edited
Hi Martine,
I am feeling much better too. I am glad that I had it before, I kept telling myself it would go by, unfortunately with mono it seems time is the only cure. I am so happy you have turned the corner. All the best to you.