Raynauds overheat

Anyone else with raynauds experience burning skin and overheating not just in summertime?

[Shann07]

Yes!! On my fingers & toes. Mine was horrendous it only started around december, ive always had raynauds but never burning & redness. It was so severe on my toes i was in hospital & had IV treatment for raynauds, lots of lupus pts get this, but this was my first time. Rheummy said severe burning was severe raynauds! I couldnt walk. I thought raynauds was always just a case of cold hands etc was i wrong, it was basically frost bite! I also started treatment for this which i take daily & thankfully the pain & burning has stopped but it took 4-5 wks. Hopefully your case is milder than mine!

[chrisj in reply to Shann07]

Gosh that sounds serious, thank goodness you got help quite quickly. I recall the burning when I was little but its not so bad these days, my hands get icy cold and white

[PMRpro]

It's something called a reactive hyperaemia and is quite common in Raynauds!

In Raynauds the blood vessels constrict so the blood flow is reduced - cold white/blue hands or feet is the result. If it goes on for long the tissues around them become ischaemic (fancy word for a restriction in blood supply to tissues, causing a shortage of the oxygen and glucose needed for cellular metabolism to keep the tissue alive). Then suddenly the blood vessels dilate and far more blood rushes through. This continues for a short time until all the substances that have been produced and led to the vasodilation have been washed away and then the blood flow returns to normal - and during that time the area feels very hot and even very painful until the blood vessels go back to normal.

It's probably more likely to happen in the winter - though it used to happen to me walking down the supermarket chiller aisle! I don't have lupus but a vasculitis and for the last 3 or 4 winters I've had hot feet (in particular, though all of me was overwarm) but this year I'm back to being cold! Not really sure which is worse to be honest!

[Barnclown]

is there any chance you have simultaneous raynauds & erythromelalgia (the burning condition)? I've been managing this since the early 2000s...my raynauds began in childhood, but the simultaneous erythromelalgia became persistent during perimenopause. The 2 conditions happen together all year round through the seasons

Here is a good link:

raynauds.org.uk/scleroderma...

Forgive me if you've gone into this before

🍀 coco

PS, 2 other very helpful links:

facebook.com/erythromelalgia

erythromelalgia.org

[Zara-LouiseD in reply to Barnclown]

Thank you for this! I have Raynauds but if I go on holiday my feet burn so much that I spend hours with my feet in the pool as I can't bear it! It only helps while they are in the water and a short while after. I've never heard of this condition before, but it would explain a lot as my ears and my face sometimes burn for no reason too x

[Barnclown in reply to Zara-LouiseD]

Do ask your dr's about this. The advice is to avoid soaking your feet in water....there are v good reasons explained in those links...+ info re lifestyle management & meds. Good luck🍀

[Zara-LouiseD]

I've been getting that with my hands all week - they feel like they're on fire and I look down and they are bright red! This is happening without them being exposed to cold first? I feel like my thermostat is broken just now 😔

[Barnclown in reply to Zara-LouiseD]

Good description...I like the broken thermostat idea! 👏👏👏 In my experience this is typical of my simultaneous raynauds & erythromelalgia. Unfortunately, doctors are only beginning to understand erythromelalgia, so getting diagnosis & treatment isn't straightforward. To make the situation even more tricky, there do seem to be other causes of this sort of burning thing.😤

[chrisj]

Not so much burning in toes and fingers, its more icy white fingers with me from raynauds, been a problem since I was a child. I get a burning in my legs at night sometimes but have no idea why....

I wear socks contantly for cold feet to protect them, in bed and out. The problems mainly with my hands

[Hidden]

I have this too although I'm seronegative so officially don't have Lupus - just inflammatory arthritis, hypothyroidism and small fiber neuropathy. Mine is much worse in winter months but mainly affects my toes - although if I'm unwell or flaring I get attacks of Raynauds in my hands too. I wear gloves right up until summer. Then at night it often switches to burning and for me this is very severe - sometimes it becomes a throbbing pain in my ankles and knees while my feet and hands burn. It almost paralyses me sometimes in a way I can only describe as something like having chilli or even acid injected into my legs and arms and even my gums and nose now. It's not Erythromelagia because it doesn't go red in my extremities. I know because I had reddening and swelling with Nifedipine which I had to stop. No answers I'm afraid but I sometimes use a pump spray bottle with cool water and take paracetamol to maximum dose. I believe Aspirin is sometimes helpful for people with EM as it thins the blood but I can't take antiinflammatories and you should ask your rheumatologist about this before trying any over the counter medications.

[BARTLETT27]

i have it most of the time, usually say its the same as the thermostat in a car that has stopped working . you start warming up and it doesn't cut out, it starts to feel like your blood is boiling with ur body.

[tterrantroy]

Hi there. I also have Raynauds and am positive for Sjogrens Syndrome and suffer from dry eyes and mouth. I also experience really hot feet, in fact I am sitting typing this message and my feet are burning to the point I want to stick them in water! Funny thing is they actually don't feel hot to touch, they feel normal.

I also would like to know how many people start off with Raynauds only to develop more auto immune problems over time? As I mentioned I have Sjogrens but I am concerned that more auto immune issues will develop over time.

Thx