Anyone want to try and diagnose me since doctors can’t?

[FcukedUpFeet]

So I’ve seen several doctors and so far they don’t have a clue, so I thought I’d try and see if anyone on here is bored on a Saturday night and wants to give it a go?

in October last year I went on a hiking trip. Feet got cold and wet, no damage or blisters, just wet. A few days later I got sores on my toes, no where else, just the toes. After 6 weeks, I took some pictures and went to the pharmacist. Pharmacist said chilblains and sold me tiger balm. This didn’t work. Toes started getting very cold and going purple. Sores continued on toes. To be clear- not the feet. Literally just my freezing purple toes. By mid December I gave up on the tiger balm and tried to make a doctors appointment. Except it was too close to Christmas so the appointment wasn’t until the middle of January. By now the sores are either healing and pealing, or rubbing on my toes and bleeding. Doctor looked at my toes and said they’d never seen anything like it. I queried Raynauds syndrome but was told they didn’t think so. The doctor googled Raynauds while I was there and said because my toes aren’t going white, and fingers aren’t affected, it’s unlikely. They checked my pulse in my feet and it’s fine. So I was sent for blood tests.

Blood tests came back to say my white blood cell count is low, not dangerously low, but not where it should be. That’s all it found. So doctor said I don’t need another appointment yet, just another blood test. I had another test on Friday and I’m just waiting for the results. But the doctor clearly doesn’t know what it is. So wise mumsnetters. Any idea what the fuck is wrong with my feet? They’re so painful, shoes hurt and rub until my toes bleed. I’m living in multiple pairs of granny slipper socks and my toes are still so cold they’re purple!

I can add pictures if people want to see (they’re really gross so didn’t want to add at the beginning)

I take it they have ruled out diabetes?

Mite be worth seeing a podiatrists as they are probably more likely to be able to identify the problem.

Trench foot?

Maybe make an appointment with a foot specialist.

Any photo?

My suggestion is covid toes.

If it is chilblains, try dabbing on methylated spirits (the purple stuff), I seem to remember having that done as a kid.

Poor circulation is my best guess. The hiking could be coincidence.

Have you had your cholesterol levels checked recently?

I suggest this because my Dad's toes went exactly the same as you describe and he had furred up arteries.

So cold they're purple... so the blood isn't getting to your toes?
Is there any swelling etc?
Any other symptoms? Nausea, extreme thirst, palpitations etc?
Do the sores hurt and itch? What happens in the shower - worse no different?
What happens when you put your feet up such as in bed?
Is the pain waking you up at night?

Just came here to say this. Have a google . Are the photos like yours?

Chilblain lupus? It usually affects the fingers but toes are also possible. Bloodwork can be normal aside from slightly low WBCs. You need an ANA antibody panel to confirm

Go to the podiatrist - they'll know

Sorry I should have said, the blood tests checked my blood sugar and I’m fine, no diabetes. I’m a ‘normal’ bmi and exercise a couple of times a week by swimming. My blood pressure and cholesterol are fine. This has all come on since October, I had no issues with my feet before now.

my toes don’t itch but they’re uncomfortable and sore, especially when they bleed. The shower warms them up enough that the oriole goes, but the red sores stay. I’ll add some pictures. They’re gross, sorry!

Covid toes! Sore, itchy, really tender. Mine flare up when my feet get cold but last for ages, the only 'cure' is to never let my toes get cold.

Non freezing cold injury?

With ulcers etc i would push for a vascular referral ASAP.

Acrocyanosis

What blood tests have they done so far and what's been ruled out from those?

Feet right now just after a shower

Showing sores

This sounds awful OP! I love using Chat GPT when I need help like this so I fed your post into it and this is what potential diagnosis' it gave - I hope this helps!

Given what you've described, a few possibilities come to mind:

1. Chilblains (Pernio) Complicated by an Underlying Issue – While your pharmacist originally suspected chilblains, the fact that it's lasted so long and continues to worsen suggests there could be an underlying circulatory or autoimmune component. Chilblains typically heal within a few weeks once the trigger (cold exposure) is removed, so the persistence is concerning.

1. Raynaud’s Phenomenon (Secondary, Not Primary) – Your doctor dismissed Raynaud’s because your fingers aren’t affected, and your toes don’t turn white, but secondary Raynaud’s (associated with autoimmune diseases) can present differently. The persistent sores could be from prolonged vasospasms cutting off circulation, leading to tissue damage. This would also explain the extreme cold sensitivity.

1. Vasculitis (Small Vessel Disease) – This can cause painful, ulcerated sores on the extremities due to inflammation of small blood vessels. It’s sometimes linked to autoimmune disorders like lupus or rheumatoid arthritis, but not always. Your low white blood cell count could be a clue that something immune-related is going on.

1. Erythromelalgia (Rare, but Fits Some Symptoms) – This causes red, painful toes that can sometimes appear purple or blue. It’s triggered by temperature changes, and some people experience burning pain, but the symptoms vary. It can be linked to nerve issues or blood flow problems.

1. Cold-Induced Ischemia (Microvascular Issue) – Even if your pulse is fine in your feet, smaller blood vessels in your toes could still be struggling, leading to prolonged damage after the initial cold exposure. This could explain the ongoing sores.

What You Can Do:

Ask for a referral to a vascular specialist or a rheumatologist – Since your doctor seems unsure, seeing a specialist in blood vessel disorders or autoimmune diseases might help.

Check for autoimmune markers – If they haven’t already, tests like ANA (antinuclear antibody), ESR (inflammation), CRP (C-reactive protein), and more specific tests for conditions like lupus or scleroderma could be useful.

Try Nifedipine or Another Vasodilator – This is sometimes used for severe Raynaud’s or other circulation issues to improve blood flow.

Keep Warm, but Be Gentle – Since warming up your toes helps temporarily, try heated socks or warming foot baths (not too hot, to avoid damage).

Look Into Nerve Involvement – If the pain is intense, a neurologist might check for small fiber neuropathy.

Your case doesn’t sound like a simple case of chilblains, and the persistent sores are a red flag. Hopefully, your new blood test results give more clues. If your doctor still seems unsure, pushing for a specialist referral would be a good next step.

Looks like we're back to no photos allowed.

Sorry, the pictures are being reviewed so hopefully will show later

ive had Covid a couple of times but haven’t been ill recently, can it start randomly
months later?

the blood tests they did were broad tests for ‘everything’ they took a load of vials because the phlebotomist said they didn’t know what the doctor was looking for. I’m hoping to speak to someone on Monday to get the results from yesterdays tests

I get chilblains on my toes as my circulation is crap and it's like having a shard of glass in my shoe.

I use an IR thermometer to show my DH how freezing my toes get!

Do you wear those gloves socks so they toes are all separated to stop them rubbing against each other?

Wearing crocs might help as they're good insulators and don't crush your toes together.

No idea what it is though!

Common in army personel, especially people of African heritage who get cold but not frozen on exercise. Which fits how yours started

I've been experiencing something like this since about November last year. It started with a blue-ish patch that grew and then it started happening to other toes. They're sore and peeling. I haven't been to see a GP about it though, I assumed chilblains, perhaps I should bpook an appointment. Mine do go white in places though, briefly, usually when I'm in the shower. Are you sure they're not going white and you're missing it?

What about a fungal infection? Apparently some can be purple.

Are you sure it's not a form of gangrene? There are 3 types. It could be wet or gas gangrene?

So maybe a form of Gangrene?
Or Osteomyelitis of the toe?
or undiagnosed essential Thrombocythemia?