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'm another one saying Long Covid or ME/CFS. Doesn’t sound like your GP will be clued up or sympathetic. So you'll probably need to read up on "pacing".

What supplements are you taking? As you say you don’t have any deficiencies but take supplements anyway, could you be overdosing on something?

I was thinking ME/CFS until you mentioned the reversing thing. Of all the symptoms that would concern me most. I would want a neurology referral too.

I take an omega 3 supplement as I don’t eat much fish and a vitamin d supplement (this was advised by the GP even though my levels were ok as I haven’t been getting out much), if I feel like I’m getting a cold I add in a vitamin c and zinc supplement

It's important not to assume for sure.
You should try to rule out anything else going on.

Though the MEcfs people I chat to say neurologists are not helpful if it IS MEcfs as they have historically been on the 'it's all in your head' side of things.

1. Post-Viral Syndromes & ME/CFS
Since your symptoms (profound exhaustion, "heavy" cutlery, cognitive dysfunction) began 18-19 months ago following an infection, it strongly mirrors Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
• Post-Exertional Malaise (PEM): This is the hallmark of ME/CFS. If you feel significantly worse 24–48 hours after trying to do "normal" things, that is a physical biological response, not a psychological one.
• The "Heavy Cutlery": This is a classic description of "neuromuscular fatigue." It’s not that your muscles aren't there; it’s that the signal from the brain to the muscles is requiring an immense amount of energy you don't have.
2. The "Mind Reversal" & Brain Fog
What you’re describing as "mind reversal" is a specific and distressing form of Cognitive Dysfunction.
• Spatial Disorientation: Going to the wrong side of the door or trying to put the cup in the fridge is a failure of "proprioception" and spatial processing.
• Executive Function: Your brain is essentially "misfiring" or taking the path of least resistance because its processing speed is severely throttled. In chronic post-viral states, neuroinflammation can cause exactly these types of "glitches."
3. Sleep Architecture
You mentioned waking up constantly but falling back asleep quickly. Even if you "sleep," you may not be reaching Stage 3 (Deep) Sleep, which is where the brain clears out metabolic waste.
• Ask for: A referral to a Sleep Specialist for a formal sleep study (Polysomnography). This can rule out things like sleep apnea or "Upper Airway Resistance Syndrome," which can be triggered by sinus issues and cause total exhaustion regardless of how many hours you "sleep."
4. Potential Tests & Specialties
If your GP is leaning toward "psychological," it’s often because they have reached the limit of general practice tools. You may need more specialized investigation:
• Neurology: Yes, seeing a neurologist (especially one who specializes in neuro-immunology or autonomic dysfunction) is a valid move. They can check for things like Small Fiber Neuropathy or subtle neurological signals that standard blood tests miss.
• POTS/Dysautonomia: Often following an infection, the Autonomic Nervous System (which controls heart rate, blood pressure, and "automatic" functions) gets wonky.
• Self-test: Does your heart rate jump significantly (30+ bpm) when you move from lying down to standing?
• Advanced Viral/Immune Panels: While basic bloods are normal, you might ask for checks on EBV (Epstein-Barr) reactivation or Lyme Disease, as these can "hide" and cause long-term fatigue.
Suggested Strategy

1. The "Paper Trail": Keep a 3-day diary of your "mind reversal" incidents and your physical crashes. Show it to your GP as evidence of neurological symptoms, not just "feeling tired."
2. Challenge the "Psychological" Label: Gently say: "I understand stress can impact health, but my symptoms began abruptly after a physical infection and include specific spatial disorientation. I would like to rule out neurological or post-viral causes before we consider it psychological."
3. Private Neurology: If you have the means, a private consultation can often buy you the time that a 10-minute GP slot cannot provide. It allows for a deep dive into that "mind reversal" symptom, which is the most unique part of your presentation.

Thankyou so much this is so helpful

I'd also say ME/CFS. I've been "diagnosed" for over 20 years. It's a useless diagnosis as there is no treatment really but would explain your symptoms. Generally triggered by another infection/illness.

OP, that sounds awful. I’ve not heard of the reversing thing but why on earth is your GP trying to say it’s psychological? As for the poster who asked if you’re addicted to tests, my mind is blown. Of course you want to find out what is wrong with you and get some of your life back! I have long covid and (having not had to engage with healthcare much before that) have since been catapulted into the twilight zone of being desperate for help, whilst at the mercy of those making some fucking stupid statements and sometimes downright dangerous advice.

Yes! Mine showed up DECADES later. I had years of being told its all in my head. I don't know why they dont automatically test for this.
Top tip, DO NOT try to exercise your way through this it will make it worse. Your body is telling you it needs rest, give it what it is asking for.

I don't think anyone.has mentioned B12 and pernicious anaemia yet but that is also sometimes important- take a look at that Don't be fobbed off by blood tests that look ok as you can be very symptomatic with neurological involvement even if you have enough.b12 in your bloodstream - it matters how you metabolise it and the co-factors like ensuring you have enough iron and folinic acid.

CFS is most likely
The AI advice is very US centric. Good luck trying to see a neurologist who specialises in autonomic dysfunction on the NHS. Not sure that exists in the U.K. Some areas have a specific CFS service that is usually more OT/ physio led and would help with pacing advice etc.

Have you considered taking B12 sublingual and magnesium threonate?