Scleroderma & Raynaud's UK (SRUK)
7,141 members3,399 posts

Anyone with hot, not cold, hands and feet?

I have only recently been diagnosed with MCTD and Scleroderma but my hands and feet are always hot and I mean really hot - so hot I have to soak them in cold water from time to time. I have never had Raynaud's, well one finger a couple of times so that hardly counts. Is this so usual?

8 Replies
oldestnewest

I have not heard of anyone having hot hands, but this by no means means that it is usual or not. Scleroderma is so different for each person that there really is no usual, just that some things are more common then others. Have you discussed it with your Rheumatologist? Perhaps they can give you some suggestions to help cool them down, or maybe others know of some creams you could use that cools the skin? Sorry I am not more help. Hope you can get some relief.

Reply

Hello, sorry about the hot hands! I know what that's like, I think. Everday in a sort of cycle of raynauds and erythromelalgia (burning) my feet and my hands flare up really hot at the same time, turning bright red and feeling like they are on fire. The best help/advice/tips I've had with managing this burning has come from the erythromelalgia organisation website. Maybe you know the site already. Anyway, those cool strips for migraines from chemists can be helpful to some of us...

Take care

Reply

Hello! I just wanna tell you my personal experience which I think it may help you. Well, at least, I hope so!. I´ve been diagnosed with a syndrom called Erythromelalgia, also known as Mitchell's disease. It´s a rare disorder characterized by burning pain and warmth and redness of the extremities. I also have Raynaud´s syndrom which it seemed to be related. Well, I wish you the best and be strong, it´s an everyday struggle. Take care :)

Reply

It sounds like Erythromelalgia. It usually shows up in the evenings so is difficult to get a diagnosis. Take photo's of the parts that are burning & show them to your GP. Then you should get referred to a Dermatologist at a local hospital for more in depth tests. Good Luck!

Reply

Thanks to those who replied to my hot hands and feet question- am I to understand then that it is not part of Scleroderma but something else? This is all getting very confusing.

Reply

I don't have Scleroderma so can't say if people with that also suffer with Erythromelalgia although I've been lead to believe a lot of Lupus sufferers also have EM & RP. Go to see your GP about your burning hands & feet because the sooner it's treated with meds the better (they try1 at a time until they find one that works) & hopefully it won't have gotten so bad you're in pain 90% of the time from it.

Reply

Are the hot hands and feet a recent development?

Did you ask your Dr. who made the diagnosis of MCTD and Scleroderma whether or not hot hands and feet are a symptom of these two conditons?

A common inconvenience associated with "hot hands and feet" is that they happen during the night, waking the sufferer up. Does this happen to you?

Reply

Hi Johnny Storm, Yes I have hot hands and feet most of the time but it is worse in the evening and at night. My joints, particularly in my hands and feet are very stiff in the morning and evening too. That is probably why I was diagnosed with RA to start with. I now also have pins and needles too. Inconvenience is an understatement- they are terribly painfully inflamed. Ax

Reply

You may also like...