Please help - symptoms and no answers

[MixedUp7]

Hi all, looking for some advice/ideas as we’re completely stuck.

My mum (late 50s) has been unwell since early Jan. It started with sudden severe pain (burning, stabbing, described as feeling like sunburn) on one side of her torso (band-like, wrapping round to her thigh and breast). GP initially thought internal shingles, but no rash ever appeared.

Since then it’s been a mix of:

• Severe shifting nerve-type pain (torso → breast → now mainly left side breast - had breast examinations and no concerns)
• Numbness in toes (now mostly gone)
• Brief vision issue (now diagnosed as a floater)

She’s had:

• Multiple GP reviews
• Blood tests (lots – all normal)
• X-ray (clear)
• stomach ultrasound (clear)
• CT brain scan (clear)
• MRI brain & spine (clear)
• 5-day hospital stay with “everything they could think of” tested

Doctors have ruled out anything serious like MS, tumours etc but have basically said they don’t know what it is.

She’s now on gabapentin (2 weeks so far, no improvement yet). The pain is still ongoing and really affecting her quality of life. She’s already tried amitrypline and pregablin.

Has anyone experienced anything similar or have any ideas what this could be? We feel a bit lost as everything serious has been ruled out but there’s still clearly something going on.

Posted in AIBU as we are desperate!

Bump

I don’t know sorry but I hope it gets sorted soon. ❤️ Didn’t want to read and run.

From Chatgpt

My mum (late 50s) has been unwell since early Jan. It started with sudden severe pain (burning, stabbing, described as feeling like sunburn) on one side of her torso (band-like, wrapping round to her thigh and breast). GP initially thought internal shingles, but no rash ever appeared. Since then it’s been a mix of: Severe shifting nerve-type pain (torso → breast → now mainly left side breast - had breast examinations and no concerns) Numbness in toes (now mostly gone) Brief vision issue (now diagnosed as a floater) She’s had: Multiple GP reviews Blood tests (lots – all normal) X-ray (clear) stomach ultrasound (clear) CT brain scan (clear) MRI brain & spine (clear) 5-day hospital stay with “everything they could think of” tested Doctors have ruled out anything serious like MS, tumours etc but have basically said they don’t know what it is. She’s now on gabapentin (2 weeks so far, no improvement yet). The pain is still ongoing and really affecting her quality of life. She’s already tried amitrypline and pregablin.

That sounds really distressing for your mum (and for you watching it happen), especially after so many tests coming back “normal” but the pain still being very real.
I’ll walk through the most likely explanations based on what you’ve described, and then what you can realistically do next.
🧠 What this pattern strongly suggests
The key features here are:
Burning, stabbing, “sunburn-like” pain
One-sided, band-like distribution around torso/breast
Sensory changes (numbness, hypersensitivity)
Normal scans (MRI, CT, etc.)
That combination is very typical of nerve-related pain (neuropathic pain), rather than something structural like a tumour.
⚡ 1. “Zoster sine herpete” (shingles without rash)
This is still one of the most plausible explanations.
Caused by the same virus as Shingles
Normally gives a rash, but in some people it never appears
Produces:
Burning / stabbing pain
Band-like pattern (follows a nerve/dermatome)
Extreme skin sensitivity
This can evolve into:
➤ Postherpetic neuralgia
Persistent nerve pain after the initial episode
Can last months (sometimes longer)
Often doesn’t respond quickly to medication
👉 The fact that it started suddenly in January and has lingered fits this very closely, even without a rash.
🔌 2. Thoracic radiculopathy (nerve root irritation)
Another strong possibility:
Irritation of a nerve coming out of the spine (thoracic level)
Causes:
Band-like pain wrapping around chest/torso
Can move or “shift” slightly
Can affect breast area
Even with a clear MRI, this can still happen if:
The irritation was temporary
Or too subtle to show clearly
🧩 3. Small fibre neuropathy (less obvious but possible)
This affects tiny nerve fibres responsible for pain and temperature.
Often missed on standard tests
Causes:
Burning pain
Hypersensitivity (like sunburn feeling)
Sometimes odd symptoms elsewhere (toes, etc.)
Usually diagnosed with specialist tests (not routine hospital ones).

I'm assuming she's been seen by a neurologist?

I'm just reading all the tests they've done that you listed. Have they done a lumbar puncture yet? It might be worth asking about getting one. It can diagnose conditions that affect brain/ nerves/ spinal cord/ inflammatory conditions etc.

you can have shingles symptoms without the rash

I’m assuming they are exploring complex regional pain syndrome. Treatment typically does involve gabapentin and similar (I took both amitriptyline and gabapentin concurrently for nerve pain, not CRPS). But they also involve more than just pharmaceuticals and there are some more experimental treatments as well.

It’s really not okay to copy and paste the OP’s post into ChatGPT like that. I’d also assume that , seeing as she’s posted on MN, she wants to talk to other humans.

I suffered with Shingles in 2019 and have had post herpetic neuralgia ever since...this is lasting nerve pain following shingles. It is possible to have shingles with no rash at all and if your mum wasn't given antivirals quickly and at her age the likelihood of her getting post herpetic neuralgia are much higher.

Unfortunately shingles is very misunderstood, under diagnosed and under researched.

Everything you describe sounds exactly like shingles and post herpetic neuralgia, I'm sorry to say. Your mum would benefit from seeing a neurologist and a pain specialist but there really is no answer to this awful long-term problem. I even suffer with recurring bouts of shingles and only usually get one spot.

There are a couple of Facebook groups for Post herpetic neuralgia which are really helpful as well as shingles ones.

Please feel free to message me if you need to ask anything and good luck xx

It's an anonymous post on a public forum and she is talking to other humans. Chatgpt can offer useful suggestions with regards to symptoms.

Thank you for your replies.

she is on a waiting list to see a neurologist at the moment.

Most doctors she’s seen have said it’s unlikely to be shingles without a rash, especially as the pain has moved from one side to the other, which they say isn’t typical. However, she is convinced this is what it is from reading the symptoms over the last few months.

are there any more effective treatments than amytripyline/pregablin/gabapentin does anyone know? She is just living on painkillers alongside the nerve meds at the moment.

ChatGPT cannot offer useful advice, and it’s madness to ask it for medical information. As you might be aware, it makes things up, as do other AI models. Look up AI hallucinations. Actually, ask Chat GPT if it sometimes makes things up. It will tell you that it does

Rubbish. I'm a retired RN. What its written is perfectly reasonable. Many people have successfully diagnosed themselves using AI.

Did you use AI when you were in practice?

No, I didn't need to.

Using AI to investigate a possible diagnosis is not the same as asking for suggestions on how to treat yourself. Presumably the op can read the suggestions, use her communication abilities and enquire about the possibilities with the doctors.

Sounds like post herpatic neuralgia.

I find it hard to believe that a former nurse really does thinks AI is a legitimate means of helping to diagnose illness. I think if I asked a doctor they would disagree. I can only assume that are unaware of its limitations.

Anyway, I’m not sure you are engaging in good faith, and this is doing nothing to help the OP, so I will leave you to it.

I'm sorry to tell you that doctors do already use it. Many doctors are poor diagnosticians as well, so I'll take my chances thanks.

Not the same but I get episodes of intense neurological burning and itching in the right arm. It’s incredibly unpleasant and the only thing that remotely helps is cold. Using a spray or gel available at chemists gives better relief than anything else and might be worth a try for partial relief until it settles. It didn’t start until I was in my mid fifties.

best wishes to your poor mum.

Some Drs believe shingles can't move sides but it can...as I said it as a misunderstood disease with little to no research as it is seen as an old person's disease...I was 41 when I got it!

Pain killers is pretty much the only solution if it is Post herpetic neuralgia. I was luckily able to be diagnosed by a neurologist through my private health insurance...would you be able to afford a one off private consultation with a neurologist?

Some people find Botox injections help... specifically administered by a neurologist, but obviously you need to see one and be diagnosed first

Thank you - that’s interesting because we have read about it moving sides but local GP and consultants seemed convinced. A doctor in the hospital said she would go away and read and did in fact come back and say she would be happy to diagnose it as shingles without a rash as she had read it can move sides.

were you able to be diagnosed in one appointment with a neurologist? We could afford a private consultation but unsure what this would entail and whether it would be worth it.

is there a neurologist you would recommend? We’re based in the north west of England.

I know she's had blood tests but have they checked her vitamin B12 and folate levels; these are not normal included in standard blood tests

Shingles

I had episodes of something that sounds very similar after getting chicken pox in my mid-30s and subsequent attacks of shingles. The GP's diagnosis was post-herpetic neuralgia.

It stopped happening after around 10-12 years.