Desperate

Do you remember how long this extreme phase went on? I really just dont see any improvement at all in 9 weeks, like zilch improvement!!

im 3 years in and still have bad stuff

The first one was 11 months, the second one from May to October 1st. It started again in March and is only now getting a little better, the last two were after covid.

did the symptoms remain exactly the same throughout that time? same intensity same symptoms??

ive had it 3 times over 4 years, but never had a symptom so distressing, like being tortured! the first two times I was pregnant both times and it was horrible, but was a linear recovery both times getting consistently better and better as time went on. it took about 3-4 months for recovery both times. This time I'm nearly at 3 months and it's still as bad as week 2, totally unflinching or just when I have a less intense day and think just maybe it's peaked, the next day is utterly brutal.

Hi Martine,

A little more intense after covid, the first 3-4 months are the worst, I feel better in the evenings and sometimes I have a good day and then if I do a little more its back to square one, probably when you were pregnant your immune system was lower, The symptoms are the immune system fighting the virus off, many days I wish it would be less intense.

Hi Martine,

How are you doing?

Hi Mono,

still utterly horrible, but I haven't been suicidal for 3 weeks, so I guess that is progress, although sometimes it's hard to see. I honestly didn't think I'd make it! the intense buzzing/vibrations in my brain and body are still there and the intensity dials up and down. sometimes it's so bad that I'm just climbing the walls and cannot even concentrate on tv or conversation. It's been 3 months now and it's been nothing short of a near death experience!! My baby is in full-time childcare as I cannot care for her and I've had to move out of the family home and in with my mum. My symptoms are just so many and new ones come up almost daily, whilst others come and go repeatedly.

*Continual sore throat all the way down to my thyroid area

*Proctitis

*Painful angry red vulva

*Dry mouth

*Low platelets causing bleeding under skin

*Horrific pain in my neck and head which is like intense burning

*General muscle pains that come and go all over

*Drenching night sweats

*insomnia

*fevers

*Psychological issues (detached from reality, confusion, memory issues, panic)

*White patches on tongue

*The buzzing/vibrations in body and brain

*Feeling like I've been poisoned

I feel like I don't know who I am any more, I'm absolutely terrified and heartbroken for the life I had 3 months ago, like it's gone and I'm going to miss out on seeing my baby turn into a little girl. I feel like this can't be normal and I'll never recover!!!

Any advice/reassurance would be most welcome!

Hi Martine,

You are really going through it, I have the anxiety, palpatations, tremor in my left hand, weakness and exhaustion. We will recover its just such a long road to recovery. I had this before in 2016 and I recovered so I know that it happens. This started for me after a bout of covid in Jan-February of this year.

when you recovered the first time, did all the symptoms just go at once? How long did it take for a breakthrough and was it gradual or did it just happen? I've had these symptoms for so long without movement and it's hard to even imagine that they will ever go or subside! did you feel that it was permanent when you had it first time? I feel like my life is over and ill be sick forever!!

Hi Martine,

Symptoms seemed to get better gradually and then went away one day. I am struggling now with mono after covid. They say to evaluate recovery on a month to month basis. You will recover it just takes a very long time.

Hi Mono,

What were your symptoms? did they change throughout or remain the same? did new ones pop up and go throughout? I'm finding that I have some that are ever there and never budge and others that come and go and new ones that pop up that last a week and then go again. were you really unwell with it everyday all day or were there breaks? I'm sorry for all of the questions, it's just I'm having such a terrible time that I'm trying to gauge what others have gone through and whether it's like me if that makes sense? I don't feel fatigue and I struggle to sleep and definitely cannot sleep in the day, the illness and vibration in my body doesn't let me. I just can't find anything on this forum that matches how I'm feeling! I've never experienced anything like it. I honestly feel like I have brain damage that will never heal. I feel like I'm living in a nightmare. were you as unwell as this in the first few months? it's like groundhog day with no way out, like I'm trapped in my own body!! some days are so bad I really don't want to go on.

Hi Martine,

Blood pressure up, weakness, fatigue, tremor in my left hand and arm, anxiety, lack of appetite, feeling of malaise. I have an occasional good day, but very few and far between. I fall asleep but wake about five hours later and cant get back to sleep.

Yes, I feel trapped in my own body too. I know this will go by eventually, it just gets very discouraging. I am trying to evaluate on a month to month basis.

Does it definitely go? I am so terrified this is permanent, im just not getting any better at 3.5 months!! every day the same, just horrific suffering with no end in sight! I feel like ive no control of my own body anymore and I don't know who I am. I'm so lost!! Will this definitely get better??

Hi Martine,

Yes, it will get better, It is a very long process and 3.5 months would be very early to see progress, it will happen though, On the worst days know that your immune system is fighting for you and that contributes to all the feeling that come with it.

What has your doctor said? mine says rest and fluids plus time.

Did you have covid? Mine came back after covid

He said its all post viral and its my immune system causing the symptoms. He also said time and possibly lots of it! I guess it's just that my main symptom is so extreme that living with it is just pure hell and total endurance. it isn't there all the time, don't get me wrong, I'm never symptom free, but the extreme symptom, which is the feeling like I'm being electrocuted comes and goes. sometimes it lasts for a couple of hours, sometimes twelve hours. sometimes it's utterly unbearable and I mean unbearable can't sit still pacing around the garden crying at 4am and sometimes it's bearable enough to concentrate on tv. it's so unpredictable, but one thing is for sure, that it always comes back! it's like being tortured honestly and in my good moments I think yep, I can do this, but after 12 hrs of torture, I feel utterly traumatised and think I can't go on. I honestly can't see how this is normal, or that there is any light at the end of this tunnel it's just so extreme, not like any kind of normal illness!! it feels like my life is ruined!! I'm constantly begging my family for reassurance that it will get better and I'm just utterly petrified that I'm stuck like this forever!!

No, it was after a horrible withdrawal from opiate painkillers. I came off them cold turkey after a year at high doses because I all of a sudden became allergic to them! so went through a really bad time recovering from that for 8 weeks and immediately got it again. This time they actually tested and picked up the acute infection rather than just a recent infection like before. I recognised the feeling of the initial illness immediately, so went to the doctors to get a test. They confirmed active infection, but two weeks later it all changed. I can't explain it, it was like the initial illness went and something else came in, it started with extreme anxiety and an inability to sleep for 2 straight days and then I just got sicker and sicker and this vibration in my brain started and then this feeling of being electrocuted and like my whole nervous system with on fire and like my brain went all weird and like i was having an out of body experience and like brain damage. it's been utterly horrific ever since.

Hi Martine,

I also go through hours of this feeling. I feel better in the evening. You will recover, our bodies are just going through the process, I have a friend who is just starting to turn the corner after six months. We will get there.

Mono re activates after stress so it makes sense, I think it has something to do with inflamed nervous system.