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)

Thanks everyone. I’ll try and find a podiatrist on Monday. I’ll avoid peeing on myself until it’s a last resort I think? I hope!

My trusty friend Mr Chat says:

1. Chronic Chilblains (Pernio) – Cold exposure can cause ongoing inflammation, especially if circulation is poor.
2. Atypical Raynaud’s – Raynaud’s can sometimes affect only the toes, even without the classic white-blue-red color change.
3. Vasculitis – Inflammation of small blood vessels could cause sores, pain, and discoloration.
4. Cryoglobulinemia – A rare condition where abnormal proteins thicken in the blood when cold, leading to circulation issues.
5. Buerger’s Disease – A rare vascular disease that restricts blood flow, more common in smokers but can occur in non-smokers.
6. Circulation or Nerve Issues – Could be related to diabetes, vitamin B12 deficiency, thyroid disorders, or autoimmune disease.

What I Plan to Ask My Doctor For Next
• Autoimmune tests (ANA, ENA, rheumatoid factor)
• Cryoglobulin test (for cold-related blood thickening)
• Circulation tests (Doppler ultrasound, capillaroscopy)
• Vitamin B12, iron, and thyroid checks

Managing Symptoms Right Now
• Keeping toes warm (heated socks, warm soaks).
• Using antiseptic creams to protect sores.
• Wearing soft shoes to prevent rubbing.
• Avoiding smoking & caffeine, which can worsen circulation.

I used to get dreadful chilblains in my last house which had no heating in the kitchen. There is nothing that works to get rid of them. Just don’t expose your toes to extremes of temperature. So if they are cold don’t heat them up, just wrap them up warm. Mine went after I made sure I always wore thick socks and slippers in the winter (and then moved to a house with heating).

I have these but not to this scale, and it’s chilblains (or so I have been told)

I have raynauds and mine look like yours.

I’d ask for a referral to a vascular specialist. My mum has vascular issues and her toes go so dark purple sometimes they’re almost black, and with similar ulceration. It’s caused by limited blood flow and can sometimes be brought on by the cold.

I have lichen planus which flares up and can look a bit similar I have lesions which steroid cream helps . Agree with seeing podiatrist and getting a proper diagnosis first though.

Could it be lyme disease since its been since a hike?

NFCI doesn't exclusively happen in military settings. Military clinicians are just more aware of it as the diagnosis has huge implications for service personnel for their career/litigation risk for the MoD.

Wet, cold feet/socks will do it.
If not NFCI, looks like chronic chilblains requiring further investigation.

Trench foot

Tbh I'd go to the people for that area. Make an appointment with a podiatrists or look for a foot clinic. I don't see the point in GPs where there are people out there who specialise in this stuff.

If I had to choose, I’d say chilblains, had them and very similar to your photo.
Don’t think it’s Covid toes, had that four years ago and very bruised, big black bruises.
Hope you get it sorted soon OP.

Looks like chilblains to me. I get them. The cure is to NEVER let your toes get cold. I use the stick-on toe warmers on really cold days. I also find that if I wear the same shoes more than 2 days in a row it irritates them. So I have completely cured my toes of this problem but always keeping the toes warm and alternating different shoes everyday. I do also sometimes get reynauds but oddly only in my fingers, not toes. But does imply a circulation issue

I had raynauds of the nipple when I was pregnant in 2015 (ended in stillbirth at 27 weeks who was autopsyed as Downs Syndrome (RIP my beautiful boy) it was excruciating and only one specialist actually acknowledged it as its unusual in that area but i think it was hormonal related because as soon as i'd given birth it stopped. The specialist put me on nifedipine and it helped so much..looks like raynauds to me, are you menopausal (the hormonal theory)? Xx

I had that once. On my second and third toes. They looked exactly like yours. I didnt seek medical advice because i was young and always busy! It just went on its own eventually. It's never happened again. That was about 18 years ago.

turns Out you can be allergic to cold. Allergic to the actual cold! My sister was diagnosed with this and had to carry an epi pen. She had some weird rashes in the lead up to diagnosis; one Dr said it was foot and mouth.
Maybe worth a google.

I have had exactly this over last 6 months! Mine are much better now but I'll try and find old photos to show you. It's chilblains. Took a few appointments to confirm and a case of ruling out other things. I kept treating it as athletes foot and wondering why the creams weren't working. Only thing that finally helped was keeping my feet as toasty warm as possible at all times. Including socks in bed. Sores have nearly all gone. Still a couple left on one foot which have resulted in a painful swollen toe but so much better than it was. And that will hopefully improve as the weather gets warmer.

I have something very similar to this. After 4years of tests and investigations, a dermatologist has diagnosed me with Subacute Cutaneous Lupus. There are many, many reasons for chilblains, but this is the cause of mine.
It started as chilblains on one toe on one foot, then changed to several toes on the other foot. They reached that diagnosis after I saw a rheumatologist who ruled out vasculitis, then had bloods taken to check for autoimmune antibodies which showed one was very positive. A vascular doctor ruled out any blood clotting issues, then a dermatologist biopsied it and said all signs point to SCLE or something very similar.
Ask your GP to check autoimmune bloods and to refer to rheumatology or a dermatologist If it doesn't get better in time. I hope this helps a bit and in the meantime, keep those tootsies warm 😊

my mum has exact;y the same thing. The doctors first said covid toes, then just the other day after going back a second time they said it was chillblains. She was given antibiotics and a steroid cream which seems to have helped slightly. She’s having bloods doe aswell to rule out others.

It's chilblains. I have them now which is unusual as haven't suffered from them for years. I blame my wellies! Mine too rub and my toes go like ice. It will clear up eventually.

If you don’t have diabetes this is NFCI - the modern name for trench foot. It’s more common in army recruits of Afro Caribbean army recruits. It comes from feet being cold and wet for a prolonged period of time (not frozen so different from frostbite). The pain is excruciating. Buying a foot bath spa thing worked to ease my pain and taking pregabalin too. It gets better in summer but recurs every winter for me. Keeping feet dry and warm is crucial.

My feet do this , I took photos a while ago but deleted them as they were awful, wish I'd kept them now. They cleared up in their own I do get one really painful toe that turns purple and is only relieved if I rub it for quite a while. I also get peely patches . I do suffer from Reynauds so put it down to that.

This happened to me last year and my feet looked way worse than yours, I am early 40’s. It was terribly painful. In my case I was wearing sneakers and it was quite a cold day. I developed chillbains and they didn’t heal for ever! This year as soon as it got cold, I stopped using sneakers and only used my ugg boots. Also kept socks on while at home and we got our heating systems at home serviced which has made our whole house much much warmer. No chillbains this year!! Also I noticed in one of the pics the spots on your feet, that could be covid toes, my son had that and they got frightened and tested him for vasculitis but luckily he tested negative and they said it was covid toes.

Tbh they look a bit like my toes when they are bad with chilblains. The skin crusting etc is just from getting stretched as they swell. They can take ages to go once they set in - any change in temp from hot to cold, or rubbing them sets them back miles. I keep socks on 24 hours - in bed etc. I double sock when going out and never wear tights as I find it cuts the circulation. I try my absolute damnedest not to rub them, taking care when drying to use the lighted of pats. I use witch hazel / calamine products and an anti chilblain / frostbite cream - again as soft as poss, no pressure on the skin. I lather cream on then stick socks on to keep it on. It sounds gross but when it's really bad, I put off showing or bathing for a couple of days and just do a 'sink wash' with no feet as really ANY temperature change from the water makes them unbearable and sets them back.

This year I got them on my hands for the first time - I think from my car steering wheel. Absolute fuckers. I have just this last week turned the corner on it, largely from staying indoors and not going out all week so no outside exposure.

Yes, I was thinking of the Tommies in WW1, so many of them had "trench foot" and lice crawling on their bodies. Sorry if this is TMI.