AIBU to worry this exhaustion and confusion need neurological investigation?

[justTotalexhaustion]

I’ve had so many tests and nothing has shown up but something is wrong. I’ve had my blood checked for multiple things including anaemia, thyroid issues , coeliac screen and other things every thing was normal.
I’ve had my hormone levels checked many many times as I thought perhaps it was perimenopause related but everything is showing good/normal and cycles still every 28 days.
I don’t have any deficiencies but take supplements for health anyway. I have a very healthy diet and BMI etc. I always exercised till this happened to me and now I can’t at all. It’s been 18 months of total exhaustion. Constant waking at night and I go back to sleep quickly but I just keep waking?? Wake up exhausted in the morning and can’t get up, struggle to force myself to eat as the cutlery is too heavy. Had to give up work a year ago as can’t think properly anymore.

One odd symptom that I’ve had is mind reversal - this whole time I will go to do something back to front eg open the cupboard the opposite side to the bin cupboard to throw something away. I’ll go to switch a light on but on the other side of the door to where it actually is, I’ll try to open a door with a handle that’s actually on the other side. If I make a drink I’ll pick up the cup to put back in the fridge not the milk. I’ll go to use the hot tap and use the cold and vice versa it’s like everything has got reversed in my brain ?

The only thing that I can pinpoint happening 19 months ago before this started was I had a very bad throat and sinus infection and it made me very tired and I never felt I fully recovered from that but it was treated with amoxicillin and wasn’t horrendously bad just very bad.

The gp is now saying we need to go down the psychological route but this isn’t in my mind it feels like illness not stress? Are there any possible things they’ve missed it tests I should ask for ? Should I save to see a neurologist privately ? AIBU to worry so much?

I was about to say was you ill just before then I read you where I've been the same since getting covid I never fully recovered

Why do you think something is wrong?

Did you even skim her post?

For all the reasons put in my post. I feel unwell, I feel exhausted and can’t function and have the confusion that I detailed.

It just felt like any other bad episode of tonsillitis/ sinusitis but every other time I’ve been ill with similar I’ve had a few days feeling bad and gradually got my energy back and that didn’t happen it just got worse and worse.

Are you addicted to getting 'tests'. You mention health anxiety so it sounds like this is the problem.

I don't think you need a neurologist it sounds like brain fog you would be better seeing a dr who specialises in me/cfs, post viral fatigue,. Maybe a rheumatologist

It doesn't matter how mild it is it can happen from any illness

Where has she mentioned health anxiety

Firstly, I would change GP.

Secondly, I would read up on long covid and MEcfs.

Unfortunately, services for this are hit and miss, but MEcfs is usually triggered by a virus. It was covid that triggered mine.

Google clinics in your area and try and get a referral if possible.

No, I just want to feel better. I was never really unwell of the prior to this and have always been healthy and enjoyed a healthy active lifestyle. I feel more frustrated at my health than anxious about it. I want to just feel better magically or find the cause for this to fix it.

Thanks I will have a read up on that.

It sounds like long covid, perfectly described.

You haven't mentioned your age. The long covid groups all seem to be women of menopausal age (+/-5 years of 50!) - how old are you?

Many people suspect that covid interacts with female hormones and may trigger something relating to menopause or a hormonal imbalance.

There is no test for it. It's just a matter of living as best you can within your symptoms. People do get better. I really improve around the 4-year mark and I'm probably now 80% back to where I was before it happened.

It's quite shocking though if it happens to you.

I’m 45 this is why I suspected hormonal issues at one point but Ive repeated those bloods so many times and they aren’t showing anything abnormal. I half hoped it was that and then maybe HRT would have been an option

The need for HRT isn't indicated by hormonal tests.

Have a look at the NICE guidance for HRT. They no longer advise blood tests, but prescription based on symptoms.

I think it's definitely worth a try.

Long Covid?
I actually never fully recovered from it. The NHS long COVID clinic kept saying 'pace yourself'. Doctors don't know how to deal with that.
I missed perimenopause because of long covid, had awful two years with my GPs.
Now I am better on HRT but not from long covid

Have you had bloods to check for Epstein barr virus antibodies? I developed ME/CFS following glandular fever which presents similarly. It can be triggered by an infection, viral, bacterial or fungal.

It is not a psychological condition, it is a complex neuro-immune condition. As you have had symptoms for more than 3 months you can request a referral to your nearest specialist ME/CFS service. They normally request a standard panel of bloods is completed by your GP prior to referral, if you search online you should be able to find out the referral criteria and blood tests required. Although if you had all the tests done already in the last six months as part of the investigations already done by the GP they may just accept the referral.

I recovered over a decade ago from ME/CFS, but then developed Long Covid following a Covid infection which also has similar symptoms. I had significant cognitive impairment related to this which has improved over time. I used brain injury recovery advice and advice for managing brain fog to help my recovery. You can get lightweight easy use adapted cutlery that might help, I have to use lighter cutlery as my grip and wrist strength is weaker especially when I am more fatigued.

I would recommend that you speak to a different GP as dealing with the 'it's all in your head mindset' is very tiring especially when you struggle cognitively to put things into words. Write down your symptoms as a bullet point list to take in with you, use the list to read from. Write down what you want - blood tests and referral to ME/CFS service and repeat it back to them several times if you feel they are not listening. Spell it out for them, say 'I would like you to refer me to the local ME/CFS service, they need these blood tests completing first so please can you give me a blood test form for these'.

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

https://www.meresearch.org.uk/factsheet-the-immune-system-and-me-cfs/

https://www.nice.org.uk/guidance/ng206

Brain fog info

https://www.vjneurology.com/video/fzond8maqno-underlying-mechanisms-of-brain-fog/

https://www.headway.org.uk/media/12001/redeveloping-skills-after-brain-injury-publication.pdf

Fatigue/pacing info

https://www.uhdb.nhs.uk/fatigue-education-course/

https://youtube.com/playlist?list=PL4Txk_yQKExDrsreeuCIVcu5cAv3-kVii&si=I10Rjfg1F0QR6mON

https://longcovid.physio/post-exertional-symptom-exacerbation

In addition to what I said above if you are 45 you do not need blood tests before HRT is prescribed. I didn't need them at that age and HRT has helped with the vasomotor symptoms such as hot flushes, night sweats and waking lots at night.

https://thebms.org.uk/wp-content/uploads/2026/02/16-NEW-BMS-Menopause-Guidance-Top-Ten-Tips-FEB2026-B.pdf

I agree I would seek the opinion of a neurologist too

The reverse thing sounds familiar to my experience with a family member. I would be pressing for a neurology appointment.

This sounds like post covid syndrome, or something very similar. Could you be experiencing absence seizures? Could you be suffering from Lymes Disease?
Strep B can be nasty and I am wondering if you had that and now your immune system is attacking itself.

I had long covid after the first wave infection with frightening neurological/ cognitive symptoms.

A few things that helped me taking supplements known as the "long covid stack", can't remember if that includes ubiquinol but that really helped as well (a better form or CoQ10), lymphatic drainage and time.

But having said that, I've also had chronic migraine (daily, with and without headache) that went undiagnosed for over 6 months until I paid for a private neurologist consultant.

So I think it's worth seeing a neurologist if you can afford it, and look into long covid and other post viral conditions.

Would it show up 19 months post infection?

Were they ok?

It would show if you had it previously not an new active infection/reactivation unless they take the right tests. Which doesn't maybe mean much as most of the population have had an infection at one time or another. You can get online postal tests.

Reactivation: VCA-IgG (+), EA-IgG (+), EBNA-IgG (+/-).
Past Infection: VCA-IgG (+), EBNA-IgG (+), EA-IgG (-).
Acute Infection: VCA-IgM (+), VCA-IgG (+), EA-IgG (+/-), EBNA-IgG (-)

https://labtestsonline.org.uk/tests/epstein-barr-virus-antibodies

https://www.meresearch.org.uk/me-cfs-and-epstein-barr-virus-ebv-some-facts/