Seriously...why are my feet burning red and hurt??

[Macsimum_de]

Went to the rheumatologist this past week and was told that it’s not caused by my lupus or fibromyalgia but something else. She wasn’t quite sure so decided to put me back on prednisone along with my other meds I’m already on. I’m really depressed and frustrated at everything going on and now to find out that there could be something else wrong with me this just plain sucks. Sorry to vent. Thanks as I know there are worse things to have going on. Anyone have any ideas as to what this is? Please help! In this picture I have been off my feet for 5 hours.

[EOLHPC]

Hello macsimum: sorry you’re having this...there are various reasons this can affect us...in my case, this is due to a condition called Erythromelalgia (EM)

The painful burning redness can occur in its own right, but, in some of us, including me, Erythromelalgia occurs simultaneous with Raynauds (RP)..so 24/7 all year round, we are managing painful burning redness and painful freezing white/purpleness simultaneously...this is the stuff of nightmares. But, over the years, we can & do learn to manage and minimise these miserable signs & symptoms

Erythromelalgia is yet another “rare condition”...so it’s not surprising your consultant is perplexed...i consider myself lucky to have been diagnosed. but there is a great support group devoted to EM. And SRUK (scleroderma & raynauds uk) gives support too (there is a SRUK forum here on HealthUnlocked) - it has Erythromelalgia included in its associated conditions listing:

sruk.co.uk/scleroderma/eryt...

this link takes you to THE BEST info i’ve ever found on this condition, its diagnosis, treatment & self help techniques to cope with it, + differential diagnosis:

rarediseases.org/rare-disea...

On facebook you’ll find The Erythromelalgia Association (TEA) has a group page

Perhaps the cause of your symptoms is something else, but every day/night my feet (+ my hands, face, ears) are painful, burning and red for hours at a time very like those in your photo...as with lupus, each person has their own version of EM - it’s a very variable condition, but the feet are almost always badly affected.

for what it’s worth, i do find my daily combined therapy lupus meds help somewhat to damp down my constant EM/RP cycle...but self-help is key to making this combination bearable...i’m on daily hydroxy+myco+pred+amitrip+losaratan (along with meds from other clinics)

Hope you & your medics figure this out soon...living with this is v depressing & frustrating...am glad you posted and i hope something in my reply is some comfort/help + useful to your rheumatologist

🍀🍀🍀🍀 coco

[Macsimum_de in reply to EOLHPC]

Just when I think maybe this is all in my head and that I’m crazy, a bit of sunshine pokes through my every day fog. Not that I want anyone to go through any of this, but it makes me feel a little more at ease knowing I’m not the only one experiencing what I’m going through. This is why I love this place! Thank you so much for the info. I’m definitely going to bring this up when I see her next.

[EOLHPC in reply to Macsimum_de]

🌤🌈☀️😍😆 good luck...hope you’ll report back to us 🍀😘

[maybehope]

Mine are exactly the same!!!!!!!!! Good to know that I am not going around the twist! Started after my Lupus and Fibro so thought it was the medication. Also have Raynauds.

[EOLHPC in reply to maybehope]

You seem rational to me!

i remember how much these symptoms messed with my mind & feelings when they started up...which was quite a few years before my infant onset lupus diagnosis was recovered in my 50s. I’d say i first noticed this burning was more than “just normal raynauds burning” when i was starting early menopause right at the beginning of my 40s.

Whatever, please let us know what your medics say about you & Raynauds + Erythromelalgia....

[happytulip]

I have this, diagnosed thanks to a big prompt from Coco. I can't recommend sketchers memory foam trainer enough if you have feet like this. They are so comfortable and minimise further inflammation. I spent ages with ice blocks on my feet at home because of the burning and I couldnt walk anywhere until I got the trainers.

The burning is awful isnt it! Pregabalin has helped me a bit. Good luck!

[maybehope]

I have sketchers memory foam shoes too! Will bring this up at my next appointment. Thank you ladies!

[Lupiknits]

Thank you for mentioning this and for the replies. I was about to ask about burning feet, and was puzzled because I struggle with Raynaud's in my hands and nose. I did a search and came across your question. I'm ready to scream about my feet this evening!

My GP recently started me on amitryptiline 10 mg to top up the BuTrans patches, and am waiting to see if it helps. Makes me sleepy anyway!

[loopieloo]

Just seen this and I also thought EM. Both my boys have this and it can be very painful. They take gabapentin which helps a bit. Do not ice your feet or soak them for long in cool water as this causes nerve damage. A small fan clipped to the bar of the bed helps a lot too.