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AIBU to worry this exhaustion and confusion need neurological investigation?

38 replies

justTotalexhaustion · 10/04/2026 14:51

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?

OP posts:
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CheeseAndTomatoSandwichWithMayo · 11/04/2026 01:15

justTotalexhaustion · 10/04/2026 19:53

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

Have you considered taking B12 sublingual and magnesium threonate?

Shrinkhole · 10/04/2026 23:58

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.

Catkinsblossom · 10/04/2026 23:06

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.

BiteSizeByzantine · 10/04/2026 23:02

justTotalexhaustion · 10/04/2026 16:07

Would it show up 19 months post infection?

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.

Rosebytheocean · 10/04/2026 21:19

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.

Reinventedblanket · 10/04/2026 21:05

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.

justTotalexhaustion · 10/04/2026 21:04

thefloorislavayes · 10/04/2026 20:48

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

OP posts:
thefloorislavayes · 10/04/2026 20:48

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.
MewithME · 10/04/2026 20:43

Croakymccroakyvoice · 10/04/2026 19:23

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.

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.

justTotalexhaustion · 10/04/2026 19:53

PotatoFan · 10/04/2026 19:09

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 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

OP posts:
Croakymccroakyvoice · 10/04/2026 19:23

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.

PotatoFan · 10/04/2026 19:09

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

AudiobookListener · 10/04/2026 19:05

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".

Choconuttolata · 10/04/2026 19:01

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/

Lab Tests Online UK | Epstein-Barr Virus Antibodies

An Epstein–Barr virus (EBV) antibodies test measures EBV antibodies in a blood sample to determine whether the immune system has responded to infection…

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

justTotalexhaustion · 10/04/2026 18:43

corblimeygvnr · 10/04/2026 15:46

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

Were they ok?

OP posts:
justTotalexhaustion · 10/04/2026 16:07

Choconuttolata · 10/04/2026 15:36

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

Would it show up 19 months post infection?

OP posts:
Noshadelamp · 10/04/2026 15:50

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.

cotswoldsgal1234 · 10/04/2026 15:50

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.

corblimeygvnr · 10/04/2026 15:46

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

Pinkflamingo10 · 10/04/2026 15:43

I agree I would seek the opinion of a neurologist too

Choconuttolata · 10/04/2026 15:42

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

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

Choconuttolata · 10/04/2026 15:36

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

nhs.uk

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)

Read about myalgic encephalomyelitis (chronic fatigue syndrome or ME/CFS). It’s a long-term condition with a wide range of symptoms including extreme tiredness.

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

MyVividFox · 10/04/2026 15:32

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

Goldfsh · 10/04/2026 15:24

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.

justTotalexhaustion · 10/04/2026 15:20

Goldfsh · 10/04/2026 15:10

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

OP posts: