Burning feet

[Nanny23]

I have red burning feet. My feet swelled from intense heat wave. When heat broke swelling went down. I have neuropathy in my legs but take no medicine for it. After swelling went down my feet became red and hurt like I burned them. I’m on vacation in Canada 🇨🇦. I’m from USA 🇺🇸. Trying to find a dr. Here today. Anyone out there have similar experience?

[Barnclown]

Hello nanny

There can be various reasons for burning feet, but mine have been diagnosed as due to a condition called erythromelalgia in combination the condition called raynauds. I have peripheral neuropathy in my legs & feet etc too, which began in childhood, and apparently this neuropathy is involved with my erythromelalgia & raynauds. So here is a bit of my story in case something in it is useful to you:

I live in the UK. my version of this burning always flares on a daily cycle all year round: usually at it’s worst by early afternoon and continuing extra bad through to evening and into the night. My feet, hands & face are worst affected. Although i get this burning every day to some degree, it’s even worse when aggravated by anything that warms me up, including hot weather, exercise & bedding.

I suffered with this burning for several years before erythromelalgia was finally diagnosed in my early 50s by a rheumatologist, several years after symptoms began to bother me. My GP had never heard of erythromelalgia, nor had i. Raynauds is much more common and well known by the medical profession

My simultaneous erythromelalgia & raynauds are secondary to my infant onset systemic lupus (i am also diagnosed with the usual secondary illnesses including sjogrens, small vessel vasculitis etc). I was also born with another connective tissue disorder: Hypermobile Ehlers Danlos Syndrome. I am 64 and have had raynauds since i was a little child, but my erythromelalgia came on in my 40s. My health profile is fairly typical of the way immune dysfunction & connective tissue disorders tend to overlap

Here is a link to the best official source of info i’ve found on erythromelalgia. This article has helped me lots to understand my diagnosis and how it relates to my other illnesses, also how to best manage my burning erythromelalgia symptoms:

rarediseases.org/rare-disea...

[Nanny23 in reply to Barnclown]

Barn Clown I cannot Thankyou enough. That explains everything. I was getting nervous I was getting a clot cause this never happened to me before. I have APS AND HYPITHYROIDISM PLUS BARRETTS ESOPHAGUS. I am on low dose aspirin for APS as I never had a clot. I did find from an MRI I HAD A SILENT STROKE. Don’t know when it was chronic and happened years ago. Need to see a neurologist. Thanks so much for all your help your a life saver.

[Barnclown in reply to Nanny23]

You poor thing...please see a dr as soon as poss...best to get professional diagnosis, right? It’ll be interesting to see what your medics say about erythromelalgia! Am v glad if something i offer up can be useful to you & your medics! Take care & good luck XO

[Nanny23 in reply to Barnclown]

I’m seeing my doctor August 20th. Problem is I’m on vacation in Canada 🇨🇦 at my cottage by the lake. I may have to go see a Canadian doctor or go to border and see a New York State doctor. The swelling started with heat in high 90’s for days. Now I’m getting burning feet and terrible nerve pain. I’m taking ibuprofen because that’s all I have. I soak in cold water and feels good. Elevating my feet helps the most. Any tips that give you some relief would be appreciated. Are you from the states or the UK? Thanks again for your help.

[Barnclown in reply to Nanny23]

I understand: you’re in a difficult situation! The little bit i know about APS is making me extra concerned about you & hoping you see a doctor asap. You are a vvvv experienced patient, though! And you clearly are v self aware + resourceful & proactive. You’re already doing everything i can think of, except i’ve been advised to avoid soaking in cold water (i think my link explains why erythromelalgia sufferers are advised not to do this...but you don’t yet know whether erythromelalgia is causing your burning). I was born in the US but i moved to the UK permanently at 21. Take care nanny...and, if you have a chance, please let us know how things go ...XO

[Nanny23 in reply to Barnclown]

Thanks again for your help. My sister has APS with high titers. She lost a leg from knee down in 2015. At the time she was undiagnosed with APS. The only reason I got the test for APS is because it’s hereditary. I was shocked it came positive. But my titers are very low so only need aspirin for now. It’s still scary cause you never know about blood clots. There is a clinic here in Canada 🇨🇦 I can go too. But they have socialized medicine here and I’m obviously not covered here. But my health plan at home said I am covered in an in Canada 🇨🇦. So I think I’ll go these week. Thanks again for all your help.

[Barnclown in reply to Nanny23]

Good thinking! You’re very welcome!