Please help Burning in feet, face, ears, and hands.

[Someoneiam]

I get this horrible painful burning sensation in feet, face, ears, and hands. (Not all at the same time) it can get so painful in my feet that it can be hard to sleep or walk. I have seen a GP who said it will be fine and to just monitor it. Can anyone give me advice on possible explanation or what to do. Thank you. ❤️

[Hidden]

Hi there, I have similar and my GP said it was Neurolgy I only had it on one side of my face and started medication which as been helpful.

[Someoneiam in reply to Hidden]

Thank you. I will look into neurology. X

[Hidden in reply to Someoneiam]

I meant Neuralgia and I take Tegretol 100mg which as made a difference.

[Outsidergal96 in reply to Hidden]

Can I ask what medication you take that helps please

[Hidden in reply to Outsidergal96]

I take Tegretol 100mg but it makes me more tired.

[Hidden in reply to Outsidergal96]

There is another name for Tegretol if it's available in the USA.

[Barnclown]

Some of us have this due to Erythromelalgia:

emedicine.medscape.com/arti...

Erythromelalgia can be secondary to Lupus, Scleroderma & other autoimmune conditions. And Erythromelalgia is often simultaneous with small fibre neuropathy, and even raynauds

Here’s the link to the best support organisation’s website:

erythromelalgia.org

This org has a community forum here on the Healthunlocked platform:

healthunlocked.com/erythrom...

Take care ❤️🍀

[Someoneiam in reply to Barnclown]

Thank you. This looks very similar to what I get. I called my doctor who said its to rare but I don't see how that matters. This is very helpful thank you. ❤️

[Barnclown in reply to Someoneiam]

You’re welcome. It’s 10 years since my simultaneous EM/RP was diagnosed by a clever lupus-expert rheumy. My SLN & RP were childhood onset, but my EM started in my 40s - am now 67. All are secondary to infant onset Lupus. Secondary EM is usually relatively less severe than primary EM. But either is very tough. My feeling is that EM is considered rare because the majority of medics have never heard of it, so diagnosis just doesn’t happen much. Also there are other issues that can triggered burning in the extremities. Wishing you lots of luck getting through the diagnostic & treatment process ❤️🍀

[Someoneiam in reply to Barnclown]

Thank you. Very Helpfull. Will look into both types. ❤️

[Barnclown in reply to Someoneiam]

I keep thinking of stuff I’ve not mentioned eg in my case, both EM & SFN give terrible burning...but my SFN burning is constant 24/7/12 even when my burning bits (feet/hands/face) look pale...whereas my EM burning always goes along with redness & swelling. But, if you go to EM & SFN forums, you’ll find some variation between lots of cases ❣️

[Someoneiam in reply to Barnclown]

How long do you think a diagnosis is round about to take? And do I need to see a specialist, if so who? Thank you. X

[Barnclown in reply to Someoneiam]

I think the best thing is to ask on the HealthUnlocked Erythromelalgia forum...there are lots of very experienced folk there who are much better able to advise you:

healthunlocked.com/erythrom...

[Someoneiam in reply to Barnclown]

Thank you.

[Barnclown in reply to Someoneiam]

❤️🍀

[Outsidergal96 in reply to Barnclown]

Yes this is helpful I have small fiber neuropathy I was recently diagnosed but my neurologist doesn’t seem to know how to help I get the red burning skin face ears feet thighs I also sweat so profusely even in winter it’s unbearable should I also see a rhumetologist ?

[Barnclown in reply to Outsidergal96]

Rheumatology is a good place to start, but I think you’ll do best to ask the folk on the healthunlocked erythromelalgia forum: healthunlocked.com/erythrom...

[Batty1]

I have this on the tops of my feet and hands but it really bothersome on tops of my feet.

I looked at the website I don’t have redness on my skin it just burns when touched or rubbed.

[sparkle557]

Most likely nerve issues. My mum has burning sensation in her head and frequent migraines. She’s on Amitriptyline now which helps ease it

[Someoneiam in reply to sparkle557]

Yes. I get frequent headaches too, i will look into it. Thank you.