Burning hands and feet

[Dash01]

Hey me again, hope you’re not sick of me already.

Past two days now have been awful my whole body is on fire but my hands and feet are the worse, sometimes there really red and I’m using flannels cold bowel of water etc to cool them down.

I just wondered if anyone could relate as when there not red and on fire I think my partner thinks I’m making it up lol 😂

[Patdoyle]

yes I get the burning hands and feet. Not so much recently but when I was first diagnosed 10 years or so ago. It’s horrible and very hard to understand. The neurologist I saw didn’t give me any answers either. He thought it was neuropathy. I still get it sometimes if I have a hot drink or alcohol.

[Iamthemedicalmystery]

I can totally relate to this although it's my feet and just past my ankles that go strawberry red with agonising burning. I have to stand in a bowl of iced water as its the only thing that seems to take the heat out. Doesn't make any difference if standing, sitting or laying down.

The burning started many years ago but has steadily got more intense as has the redness and heat. Dr says its diabetic neuropathy however I'm seeing him this week as I really don't believe it.

[Dash01 in reply to Iamthemedicalmystery]

hmm I will maybe have to go back to the doctors if it doesn’t calm down.

I hope your okay!!!!

[honeybug]

hi Dash01 🌿🌸🦋

There is a condition known as Erythromelalgia ( burning hands and feet) the rarest form Inherited Erythromelalgia (IEM) genetic burning hands and feet

These conditions can be diagnosed by star Neurologist thru DNA.

First one triggers: illness stress weather comorbidities pushing yourself to carry on.

Second one triggers: salt both products/meds as well as salt/sodium intake plus all the triggers of #1

Proper rest pacing yourself good sleep good diet are key.

I have the rarest form. was diagnosed in 2014 after 62 years of endless searching for answers via double DNA testing. You are NOT crazy attention seeking or lying.

I’m across the pond and there is an organization comprised of fellow sufferers who publish when able newsletters about the condition and alumni.

It is called TEA the Erythromelalgia Association.

burning feet.org

erythromelalgia.org

The Erythromelalgia Association

200 Old Castle Lane

Wallingford PA 19086 U.S.A.

I am willing to answer questions. It may take time to reply as I currently am preparing a memorial service for my late beloved brother.

Best wishes

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

[Welshcatlady]

Don't worry about putting too many posts on here. It sometimes helps just to write how you feel and then get answers from someone who feels the pain you do. I used to get burning feeling and itchiness pretty much all over, but not so much now. I tried all sorts of things including cold wet flannels and Dermol cream on prescription to use as a soap substitute. Luckily it seems to have gone away (how long for, I wonder?). Hope you manage to find some relief soon.

[Dash01 in reply to Welshcatlady]

hey so this has been now third day.

I woke up in the middle of the night and it’s just not calmed down any.

My eyes, feet, hands and face are on fire, sore and I feel really dry skin(don’t suffer normally).

My knees and elbows are on fire but from the inside as my hands face eyes and fee are bright red dry; sore 🙃

Thanks for saying I can post whenever, it really has helped having people answer who care & understand xx

[Welshcatlady]

Sorry to hear that you have been suffering for days, it's awful not getting any relief. I'm sure there were other things that I tried when I was getting the itchiness and burning but sorry my memory is playing games with me this morning 🤔 and I can't recall them. I'm sure when I'm doing something else later, they will come to me and then I'll let you know. 😁

[CheetieCat]

Hi, you could try capsaicin cream or anything menthol like Vicks or foot cream for your burning. Luke warm showers and loose natural fibre clothing can help. It's awful, I know, sometimes I'm outside in the middle of the night barefoot on the cooling cement slabs, it's so good but only for a minute or two! 🥺🫤Ps Aveeno has a cooling moisturiser lotion. On my to buy list. Might be worth trying

[Iamthemedicalmystery]

Following on from my reply earlier, this was 3am this morning. They kind of burn, feel tight and so sore.

Red,burning feet and lower legs

[Dash01 in reply to Iamthemedicalmystery]

awww mate I’m so sorry!!!! Hope it’s cooled down for you!!!