Painful sore feeling feet at night advice

[Toldyouifeltill]

Hi. I've had Lupus 14 yrs, secondary vasculitis 10 yrs, and now borderline type 2 diabetes. I'm currently struggling with burning sore feeling feet at night, even bed sheets hurt. Any recommendations of anything to help. I haven't slept properly in weeks. Many thanks in advance x

[EOLHPC]

Hello toldyoiifeltill. Am v much relating to your post. My feet & hands (& face + ears) burn unbearable in a 24/7 all year round cycle which is at its most severe late afternoon through to morning... have learned to sleep with very light bedding so can stick feet, hands, head out. This summer i got a tower oscillating fan which stands at the foot of my bed and helps a lot.

There are various reasons for these symptoms, but my version of this has been diagnosed as simultaneous raynauds & erythromelalgia secondary to SLE + my other typical secondaries (sjogrens, small vessel vasculitis etc)

There are several of us here living with erythromelalgia (EM) and there are even more on the HealthUnlocked SRUK forum (scleroderma & raynauds UK).

Here is a link to the EM info on the SRUK website. EM is very hard to diagnose and considered quite rare...but my feeling is the so-called rarity is just cause it’s so little understood. My lupus expert rheumy says EM is raynauds gone bonkers...makes sense to me! For sure the combo of raynauds freezing alongside EM burning is dreadfully miserable

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

Hope something in there is useful

❤️🍀❤️🍀 Coco

[Toldyouifeltill in reply to EOLHPC]

Thanks. That is useful and something to discuss with rheumy. I covered my feet in Calamine lotion tonight and although it didnt entirely stop it, it did seem to calm it and allow me to go to sleep. Needed to put more on about 3am but better than awake all night. X

[EOLHPC in reply to Toldyouifeltill]

You’re very welcome. This is the way to survive: simple self help! Good luck & take care XOXO

[Lisalou19]

My feet suffer terribly with a burning sensation. It is so uncomfortable.

I’m starting to think it’s maybe nerve related.

Anyhow a little trick of mine , is I put vic on my feet. This then sends a more cooling tingling sensation which is more comfortable than burning

X

[Spotty-ewe in reply to Lisalou19]

Hi Toldyouifeltill,

I have suffered terribly with burning feet in bed and found wrapping a freezer block in a towel and resting my feet really helped. It allowed me to get to sleep. I told my rheumatologist about it but she didn’t know why I got it. So good to hear I’m not alone. Anyway, I hope this helps you.

[Toldyouifeltill in reply to Lisalou19]

Great, I will definitely give it a go !

[Lupiknits]

Thanks for asking about this. My raynauds has been joined by erythromelagia. I cope with light bed coverings so I can stick my feet out, and a small fan. I’m assuming that when the colder weather arrives I’ll be back in bed socks, but will have to see.

[Toldyouifeltill]

Just an update. It was recommended to me to not wear socks in the day - ok in the summer - I tried and remarkably its a lot better. However, my GP thinks I might have Diabetes as that apparently causes sore burning feet where sheets even hurt. I have had 2 non fasting blood tests, one came back 6.9 - GP says diabetes type 2.........second comes back at 7.0 and different Gp in practice says all normal, off you go ?! Now I dont want diabetes on top of everything else but its a bit worrying when the Gp's dont agree ?!

[Lisalou19 in reply to Toldyouifeltill]

I recently had a neurologist appointment. I’ve had the glucose test but he seemed to think it was caused by small fibre neuropathy. (Burning feet)

[Toldyouifeltill]

Ok. So diabetes has been confirmed. Yay 🙄 Been cutting sugar and carbs right down and seems a lot better. Sle lupus, raynauds, vasculitis, and now diabetes ! Pfffft !