Red toes

New to this. As I wrote before
Had this problem for 3 yrs
Started of as pain under small toe
Moved to both feet
Doc thought it was a neuroma
3 yr down the line , my feet get cold , then
All of a sudden my toes go red and stingy
They cool down after 10 min
Get red toes if my feet heat up also
Ie going for walks, keeping my boots on too long also
Apart from that, I’m in good health
It’s more of a annoyance but I hate the cold feet
Too many socks on, my toes heat up and sting
No socks , my feet get frozen , then my toes go red
Thank god I’ve got a sense of humour
Anyone else got the same problem
I’m 56, and love my concerts but sometimes I have to take
My socks off lol. . Must be someone out there like me lol

Hello Greykillieboy, I'm sorry to hear of your plight, Is your doctor still of the opinion that you have a neuroma? Has the condition been further investigated? Have you had a referral to either a vascular consultant or to a dermatologist?

Best wishes, Katriona

Neuroma was ruled out , had a ultrasound did on both feet
Seen a dermatologist , thought it might be em
Saw a vascular consultant last week
Had my circulation checked . It was fine
Consultant thinks it might be em
To go back and see him in 3 month
On armtriplyne no help
Waiting to go diff med
Still thinking positive

My foot doc thought I had a neuroma too. Tried cortisone shots and orthopedic inserts, nothing worked. 6 months after starting this treatment, I could hardly walk due to pain, was icing my feet in the afternoons just to get through a day of work. Had to sleep with the covers off my feet, did not know then this was EM.

Whatever you do, DO NOT have neuroma surgery. I did and will regret it for the rest of my life. Had a terrible recovery: slow healing, sciatica, depression, insomnia, fatigue, palpitations, pins and needles in feet and hands, hair loss, EM symptoms, anhidrosis, + more. Took 3 months and many tests to figure out the cause - severe B12 deficiency. B12 is necessary for nerve health, creating new blood cells, and cell reproduction. I was unknowingly deficient for years, which I believe caused my original foot nerve problems.

Are you taking a PPI or H2 blocker? Long term use of these as well as other meds can cause B12 deficiency, as can pernicious anemia (which is what I have). Many doctors are not aware of this danger, and these drugs are now readily available over the counter.

I recommend you get your B12 checked, particularly if you are taking any of those medications or have symptoms mentioned above. If below 450 pg/mL get treatment (usually injections of high loading doses of B12). The US and UK use 200 for the minimum which is far too low, neurological symptoms can appear below 450.

Living in the UK, how does anyone over-rule the NHS recommendations? I am, amongst other things, deficient in vitamin D, yet my upgrade is only to 2 x 20,000 unit capsules of Colecalciferol to be taken once a month?

High gracious geek girl
I too had cortisone jags , no effect
Tried insoles, that when my toes started turning red
Had to wear , wide fitting shoes
Pain not as bad as it was , it’s now the temps of
My feet. Shoes, what a joke, tried tons of them
Blood work done, all normal except for one thing
Thing is, I used to walk for miles . Not now
Remember , there always someone worse than yourself

Do you get red toes too

Katriona said:

Living in the UK, how does anyone over-rule the NHS recommendations? I am, amongst other things, deficient in vitamin D, yet my upgrade is only to 2 x 20,000 unit capsules of Colecalciferol to be taken once a month?

Hello Greykillieboy

I have exactly what you have and in my hands too. I wear sandals for as long as possible and warm boots in the cold weather. I go to bed under three duvets as I am so cold then halfway through the night throw the lot off. I get up and wait for the bed to cool down and then go back hopefully for some sleep. I feel better when the temperature is even; the same night and day like here in South African summer. Chilled supermarkets start me off. I have been like this since 1998 and. was diagnosed with EM by Prof Carol Black at the Royal Free in London. I was offered drugs and invasive treatments but I turned them down as I am better without drugs. I put up with it. I try to keep calm. Yoga helps. When I have an attack I do my deep breathing. I am a shallow breather normally and I think this does not help circulation. Deep breathing really does bring some relief. with best wishes, Lyn, Cape Town

Thanks for your reply
Right now it’s the coldness of my feet, then bang my toes go red
Was up in Glasgow two weeks ago and had to take 2 pair of shoes.
A pair of boots to heat my feet up, then sandals to put on,
When my toes went burning red and stingy .
Have noticed, if I’m in a hot room, my hands and face go red
And my chest and upper arms go blotchy , for a bit .
This getting old ain’t funny .
Bought my selve a exercise bike. After 39 min on it
Toes are bright red.
Hope someone else can relate to this

I only use a sm fan From Brookstone. Then a sm spray bottle keep in Freg at all times. Then water filled to top with ICE to sip on. Only flip flops with gel!! The I can work out. Just don’t get warm. Slow it down by spraying your feet fanning your body & sipping on ice cold water to keep temp down. A lot of work to work out!!! The only way I can wk-out. Oh yes one more thing. Gym needs to be cool under 67 degrees.