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)

Have you tried Athele foot cream ?
if also say that my aunt has raynaulds and they weren’t just white they were purple and peeling. Not so bad in the summer. I wonder whether the summer weather would clear it up ?
if your white blood cells are up then it’s viral related. Which is a nightmare as it just did its course.
allergy take piriton. Anything worth a go. Keep a diary over a week or month if you do try anti fungal or anti histamine and see if record any improvement

Looks like my eczema tbh, I get it on my hands and feet and it sometimes leaks fluid

Another vote for trench foot.

(What an awful word!)

I can't diagnose but something that might help....I had persistent problems with my feet with sores, etc, not quite like yours but sores that the doctor couldn't diagnose. A random reading on t'internet recommended bamboo fibre socks. I'd had the problem for around 12 months, 1 week of bamboo fibre sock wearing I was cured ! Get at least 50% bamboo fibre but 70% or higher even better.

@FcukedUpFeet I also think it sounds like trench foot.

I had freezing cold, purple toes till I gave up gluten. It was being caused by gluten neuropathy…and my immune system was compromised because of it, causing poor healing …is that worth ruling out ?

I have chilblains and this doesn’t soind the same at all. Plus chilblains are really itchy.

Isn’t that chilblains? I have never heard of Covid toes before.

Look up Achenbach syndrome

Looks like chilblain lupus..bit more complex than chilblains
https://my.clevelandclinic.org/health/diseases/21980-chilblain-lupus

@FcFcukedUpFeet I put your post through A1. Thought it might help. This is what it came back with below

That sounds incredibly frustrating and painful. Based on what you’ve described—persistent sores on your toes, extreme cold, turning purple, and a low white blood cell count—there are a few possibilities that might explain what’s going on.

Possible Causes:

1. Chilblains (Pernio) – While the pharmacist suggested chilblains, standard treatments like Tiger Balm should have helped. If it’s ongoing for months, it may be a more chronic or severe case, possibly linked to an underlying condition.

1. Raynaud’s Phenomenon (Secondary Raynaud’s?) – Your doctor dismissed Raynaud’s because your fingers aren’t affected, but secondary Raynaud’s (linked to autoimmune conditions) can sometimes affect only the toes. It doesn’t always present with the classic white-blue-red color changes.

1. Vasculitis (Inflammation of Blood Vessels) – Conditions like small vessel vasculitis (such as cryoglobulinemia or lupus-related vasculitis) can cause sores, poor circulation, and discoloration. Given your low WBC count, an autoimmune process is something to consider.

1. Peripheral Arterial Disease (PAD) – Poor circulation, even with a normal foot pulse, could still be a factor. If small arteries are affected (microvascular disease), it might not be picked up by a simple pulse check.

1. Cold Agglutinin Disease (CAD) – This is a rare disorder where exposure to cold triggers blood cells to clump together, leading to pain, color changes, and sores. It’s more common in people with infections or autoimmune issues.

1. Chronic Infection (Low-Grade or Atypical) – Some infections (like Chilblain Lupus, fungal, or even slow-healing bacterial infections) could be causing repeated sores and low WBC count.

1. Autoimmune Conditions (Lupus, Scleroderma, Mixed Connective Tissue Disease) – Since your WBC count is low and your symptoms persist, a systemic autoimmune disease should be explored.

What to Push for Next:

Rheumatology Referral – If this is autoimmune (vasculitis, Raynaud’s, lupus), you need specialist input.

Capillaroscopy Test – A test to examine the small blood vessels at the nailbed, useful in Raynaud’s or autoimmune conditions.

ANA, Rheumatoid Factor, Complement Tests, Cryoglobulin Screen – Blood tests that check for autoimmune diseases.

Doppler Ultrasound of Toes & Feet – To assess blood flow and possible microvascular disease.

Skin Biopsy (if lesions persist) – Could rule out vasculitis or other causes.

Immediate Steps:

Keep Toes Warm But Dry – Avoid getting them wet and cold; heated socks might help.

Avoid Vasoconstrictors – No caffeine, smoking, or cold exposure.

Topical Steroids or Nifedipine (Calcium Channel Blockers) – Sometimes help Raynaud’s or chilblain-type issues.

Final Thoughts:

Since this started after a cold, wet exposure and has persisted, I’d lean toward chilblain vasculopathy, secondary Raynaud’s, or vasculitis. Given the low WBC count, autoimmune causes must be ruled out. Definitely push for a rheumatology consult and more specialized tests.

Has the doctor mentioned anything about autoimmune markers or suggested a specialist yet?

This is a post viral rash/reaction (not trench foot).

It's similar to hand foot and mouth, you may find your fingers go next.

My partner had it. It started on his feet exactly like yours, we thought it was chilblains too, then red raised bumps appeared on his hands which later turned to dark spots like you have on your toes. It's and it's only just clearing up now, and the feet started before Christmas and the hands in Jan.

I wonder about cryoglobulinaemia, acrocyanosis and cold agglutinations. Cryoglobulins precipitate in cold peripheries and can cause sores like this. Can you see the tests done on the NHS app? Anything with direct antiglobulin test or serum protein electrophoresis in there? Low white cell count unexciting and common (often seen after viral infections, which are associated with cold agglutination and cryoglobulins).

google 'covid toes'

Have the doctors checked for diabetes??

completely agree with this.

My husband has recently been diagnosed with an incredibly rare auto inflammatory vascular disease that started with “Covid toes” (which looked identical to your pictures) and ended with a whole range of unpleasant and life changing symptoms. Luckily the treatment he has been eventually started on is working well but it took a long time to get where he is now. I’d really urge you to push for investigations under rheumatology, haematology, dermatology and immunology if you can & hopefully you will have a swift journey to diagnosis and treatment. Have you noticed any other symptoms - fevers, rash, fatigue?

My feet and hands were like this but also much worse prior to me being diagnosed with Lupus & secondary raynauds phenomenon. Both my hands and feet are.like ice.

Thanks everyone. I’ve written a list of suggestions and I’m ready to contact the doctors first thing tomorrow morning

I’ve tried to read through everyone’s responses and to answer a few questions- I wasn’t wading through frozen lakes or anything similar. Just an easy hike in puddles and rain. Socks and shoes changed daily and always dry when I put them on. It was probably less than 10 miles a day so nothing strenuous or too damp. I’ve been checked and definitely no diabetes, I was pre diabetic about 8 years ago so get tested annually now and haven’t been anywhere near since the original test. No I’ve got no other symptoms at all, it’s literally just the pain in my toes and the cold too. I’ve not had Covid for around a year as far as I’m aware and no one near me is sick or showing signs of being ill. And thank you to the person who suggested bamboo socks. I actually got some packs for Christmas that I’ve been wearing and they’re definitely thicker than my usual primark/asda ones!

thanks for all the helpful suggestions, I’m going through them all and making a list

Trench foot my dh had it feet wet a lot due to being a builder. Saw a podiatrist soaked his feet in potassium permanganate? I think. Went in a few weeks

Looking at the pictures you posted these could be my feet - I have severe Raynaud's which causes more 'aggressive' chilblains that don't tend to heal until warmer weather hits, as my fingers and toes are in a constant state of numbness, so even the slightest change from ambient to hot or cold causes it to flare up.

GPs are generally quite naive to symptoms around Raynaud's but I was properly diagnosed by my gastroenterology surgeon whilst being treated privately for something totally unrelated last year. He even flagged that Raynaud's is rarely 'formally' diagnosed through GPs and the NHS, but it's actually important to be identified - especially when undergoing GA.

Hope you get a proper diagnosis OP, and in the meantime I recommend O'Keefe's Intensive overnight foot and/or hand cream - slather it on and pop a pair of socks on while you sleep - best thing I've used for the pain and swelling/itching.

Sounds like trench foot, or non freezing cold injury. Am an ex infantry soldier, and this is the reason the Army is so keen on making lazy soldiers change into dry socks. Really can be quite serious. Many people invalided out on these grounds.

Gout?

I had Covid 2 years ago and my toes swelled up and were painful, I rarely go to the doctor’s and just took some painkillers, after about a month I was fine. There were some weird reactions to Covid - and the vaccines..

It's not charcot. I see this most days at work.

Reads like you have complications from frostbite. I hope not. Get a podiatrist who has experience with frostbite.