Burning feet as well as cold? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Burning feet as well as cold?

Gillmarg profile image
11 Replies

Does anyone diagnosed with Raynaud's also suffer from burning feet? This is my worst symptom - it stops me going anywhere hot, or even warm, if affects sleep, it prevents a day out walking in a city, or other exertion. But my fingers and toes also go very cold with the typical white, blue, red symptoms in cold environments

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Gillmarg profile image
Gillmarg
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11 Replies
Fluffy2 profile image
Fluffy2

Hello there

my top tips for stopping burning feet is moisturising them regularly . I can go from a discomfort level of about 7 out of 10 down to a 2 out of 10 just by applying moisturiser overnight. In a recent gathering of people with Reynauds and scleroderma we discovered that most of us have sore feet so it seems part of the territory.

The other thing I'm thing doing is also making sure that the soles of my shoes are as soft as possible by putting insoles in them or buying shoes with this in mind. Someone recently recommended Rieker shoes to me.

As this is seriously bothering you, and if the simple remedy doesn't help then ask to be referred to a podiatrist to see if they can help you.

I hope it helps. X

Gillmarg profile image
Gillmarg in reply to Fluffy2

Thanks for the reply. I do all those things but still get the bright red burning, swollen feet. See a podiatrist regularly and my GP. Currently take amitriptyline which doesn't stop it but it's worse when I don't take it! It's the only medication I've tried which doesn't give me bad side effects. I guess I just have to accept that I have these chronic symptoms and pace myself to live life around them . It helps to know I'm not the only one as sometimes I think I'm going mad - loss of sleep doesn't help!

in reply to Gillmarg

Hi there, yes I'm the same unfortunately, all your symtons, side effects, restrictions with walking, lack of sleep for the pain, hands and feet, not nice at all.

Iv just accepted it to be honest. Xxx

Fluffy2 profile image
Fluffy2 in reply to Gillmarg

Keep going hunni..I've had my symptoms for months rather than years but acceptance seems to be part of the territory.

I swim and do hydro type exercises for my cardiovascular exercise and strength and my body feels better than it did after that.

Take care.

bearman profile image
bearman in reply to Fluffy2

If you are looking for soft comfortable shoes try All Birds. They are New Zealand but you can get them mail order from a place in London. They are not cheap but have been worth every penny. They are also warm. The insoles are removable if you need orthotics. Among other things I have bunions and although they have never been painful they always looked red and fiery. Since wearing All Birds they have returned to a normal colour. Their only disadvantage is they are not waterproof because the uppers are made from New Zealand merino. They are probably shower proof. You can wash them in the washing machine.

Fluffy2 profile image
Fluffy2 in reply to bearman

Many thanks that's very helpful. I will take a look.

Bronagh2015 profile image
Bronagh2015

Hi Gillmarg, I have burning feet and burning palms of my hands. It isn't present all the time but when it strikes its agony. Then other times they're blue and white and numb, not pleasant either 😟

Barnclown profile image
Barnclown

V much feeling for you. It’s a nightmare having burning & freezing at the same time. My hands & feet are worst affected by this 24/7 all year round. In my case this is due to simultaneous raynauds & erythromelalgia. Here is a link to erythromelalgia info on the SRUK website:

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

Hope you figure out your version of this ASAP...took me & my medics a while. My primary conditions are v early onset lupus + hypermobile ehlers danlos + immunodeficiency disease.

Take care 🍀🍀🍀🍀

Brendab7869 profile image
Brendab7869

Yes always burning feels like I’m walking on blisters on the bottom of my big toes

UCTD profile image
UCTD

Yes I have burning hands and feet, worse at night and itchy legs from the knees down.Drives me crazy and keeps me awake. My Rheumatologist feels this is Erythromelalgia, and started me on Duloxetine along with Gabapentin, which has helped a little. I try to keep my skin moisturized and drink plenty of water.I bought a moisturizer for my skin which helps ,called Suu Balm which was recommended by the writer Emma Hannigan.

I have Raynauds, recently was admitted for Iloprost infusion, which has made some improvement.

Good luck, it’s really not pleasant

marie5454 profile image
marie5454

I have the same thing but it's the tops of my feet which hurt the most! Take amitriptyline too which helps me nod off at night, have raynauds, itchy legs and the worst cramps I've ever experienced, it's a mixed bag of tricks at the moment, hope you find some relief soon what works for you x

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