OK guys, weird question time: For the past 9-12 months I have experienced ‘hot hands’ on and off, does anyone else get this? My hands turn bright red (see picture) and get super hot, it feels like sunburn or like a heat pack. It doesn’t hurt exactly, but the heat is uncomfortable and sometimes intense (makes me wanna run them under cold water). It also happens to my feet and knees. It lasts for hours and then goes away.
There is nothing in particular that seems to trigger it, and it happens just about every day. It seems to happen more frequently after eating (but can happen hours after food), in the evening (but can happen any time of day), and after walking (but often happens seated too). I have lupus and APS and have recently been diagnosed with vasculitis. Any ideas? Thanks community!
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my hands and feet burn too but they don't go red. usually starts about 7pm and lasts until 3 am. keeps me awake which is how I know what time it stops. I don't get it in the summer but as it's starting to get chilly here in scotland it's begining to start.
PNRpro-was just going to suggest the same! I actually have both erythromalagia and reynaud. Not lovely to see, but what s relief to learn about. Best health to all.
Maybe erythromelagia? My hands got like that all the time when initially diagnosed. I am SLE and aPL positive but not APS, no thrombosis history. I have attached pictures. Sometimes my legs would turn this color too. Since treatment, hasn’t happened in a long time.
Thanks Jmiller, someone else on this forum suggested erythromelagia, so I clearly need to look into it! What’s aPL and MCAS, by the way? And what treatment did you have? I have just started Plaquenil, but it’s only been 1 week so too early to tell yet.
aPL is antiphospholipid. MCAS is mast cell activation syndrome.
Plaquenil worked well for me. Simmered down a lot of my symptoms. Took about 6+ to see an effect. I’m also on intravenous immunoglobulin for nerve issues. For MCAS, I found antihistamines really helped with flushing. I take allegra twice a day. I take aspirin for aPL. This has helped dissipate my livedo reticularis.
I’m on a lot of things. Don’t know if it’s a combo or one drug that helped. But I feel for you. It just comes out of nowhere. I remember it always happened late at night.
Thanks Jmiller623, it’s hard to tell with the drugs sometimes, but it’s good to know Plaquenil helped you. I’m only one week in on Plaquenil, so we’ll see if it helps.
Yes I get it too n I think it's erythromelalgia, especially in my feet n lower limbs. My GP prescribes Amytriptilline which has helped..I'm on 20mgs at night. Although it's a well known antidepressant it also helps in lower doses with nerve pain. Originally I started on 10mgs n have increased it recently following a rheumy appt..he said I can increase it to 50mgs at night if needs be but it does have side effects..one of them being dry mouth and as I have Sjogrens too I've decided to keep it at 20mgs for now.
I also sleep with my feet uncovered at night..I stick them out from under the duvet!!
There's no such thing as weird questions here Musical coz this whole autoimmune stuff is totally weird anyway. 🌈😽😽Xx
Thanks Krazykat! It does seem weird when these symptoms completely stump my doctors, but you’re right, on this forum there’s no such thing as weird! I’m also on the Endep for nerve pain (not in my limbs), which has been successful (hallelujah), and it gave me the dry mouth too. Hopefully I’ll be coming off that soon, as it has essentially ‘cured’ the nerve pain I was having before. But this hot-handed thing is completely different. Got an appt with my rheumy in 2 months to follow-up the effectiveness of the Plaquenil.
A lot of doctors are unable to join dots - they see patients as individuals in the wrong way and don't hear bells ringing! There are a lot of patients here talking about the weird things that they develop and we do think - I know I've heard something like that before. I have a memory like an elephant and what I don't know off the top of my head I know how to look up. I have learned an awful lot from Coco, Wendy, HT and others here and it helps on my home forum when people have funny symptoms - and I like to help out here when I can as a thank you
Have you thought it could be Neuropathy- nerve pain?I had this a lot on my feet, to the point I slept with my feet out of the covers, even in the middle of winter!
I was eventually diagnosed with Small Fibre Neuropathy and given Amitriptyline, which didn’t help. Then I was put on Gabapentin, which again didn’t help. I was finally prescribed Duloxetine which thank goodness worked. Since then I get the odd heat & redness, usually at night, but nothing to what it was.
Thanks Bakbre, glad you have finally found some relief! I was recently tested from head to toe by a neurologist, including nerve conductivity, and everything is normal. And I have been on Endep for over 12 months for unrelated nerve pain, which has thankfully helped the nerve pain, but the hot hands persist—if anything, they’re getting worse. The burning sensation is stronger, it’s happening more frequently, and it’s spreading from my hands up my arms now. But the burning is not a burning pain (not like bursitis or anything), it’s more like severe sunburn, like a stinging and skin tightness. It’s weird!
Hi, whilst it does sound like Erythromyalgia, I’d like to ask about your medication. I too have lupus and since starting my medication I’ve experienced the same thing - nothing painful - more annoying - having to run my hands under cold water or touching cold things in bed as it wakes me up. I hope whatever is causing this soon clears up for you. Thank you for sharing your experience as I’ve gained a lot of knowledge myself from this forum, it’s really helped me a lot x
Hi SamRigs, thank you for your reply. This forum has helped me a lot too—and I’m only a newbie! Up till now I haven’t been on lupus meds, only endep for unrelated nerve pain (not suitable for public discussion!) but I’ve read some anti-depressants like endep can contribute to erythromylalgia, so who knows. Ery is certainly looking like a contender—I had one doctor suggest CRPS, but Ery seems much closer to my symptomology, as pain is not the pain feature, it is more the extreme heat produced by my hands when they flare. It’s like sitting in front of a fire. I started Plaquenil 1 week ago, but as it can take 6-8 weeks for effectiveness, I’m still waiting and seeing on that one.
Well I hope you get to the bottom of it. I keep mentioning mine to my consultants but nothing really gets done about them. My GP wants me to take anti depressant drugs to help with my excessive sweating so maybe these will help the heat in my fingers and hands too. Nice to chat with you anyway. All the best x
Hi I get it on the palms of my hands and soles of my feet. It is intense burning that exacerbates the tingling in my fingers and toes. There is no pattern. I get it during, before and after food, when I am sitting or more active, summer and winter. My hands go bright red and when I touch my husband he jumps as they are so hot. It generally eases in a few hours. I have told my Rheumy and GP many times but they have no idea ( or no interest). It sounds trivial to them I guess but it is uncomfortable. I hope you get some answers xx
Thank you CecilyParsley, that sounds very similar to mine in terms of having no specific trigger. It can literally happen anytime, but I must day, I notice it most in the evenings after dinner and it lasts for hours, sometimes I go to bed with the heat still radiating. And similar to you, my doctors have no idea! My guess is they are more interested in things that cause pain, or things that interrupt functioning. Hot hands don’t really fall into that category. ☺️
I have got the tingly fingers back today! It was very cold on the school run so the reynauds started mildly again and then as it relieved itself I've been tingly since this morning! I often get bouts of it so I'm feeling pretty uncomfortable in both hands today!
Hi TeaandToast94, sorry to hear that. Does it hurt? My hands were initially thought to be chillblains but one doctor suggested reynauds. I know it’s not reynauds coz I have no problems at all with circulation, and my fingers have never gone white or blue! Hope you get some relief soon.
Wow lanflashdavies, that must be uncomfortable. I sometimes get it in the feet too, and sometimes on my knees, but it happens most often on my hands—at least, that is where I notice it. Have they checked you for fluid retention or kidney issues? I understand the swelling is pretty common with erythromelalgia, but I don’t seem to get that.
Yes, been checked for everything under the sun. I’ve had more investigations than Columbo. Originally started with swelling but now it’s just pulsing that feels like swelling. The burning I sometimes get in my right thigh too.
I am now on 400mg hydroxy, which seems to have put a stop to the hot hands and feet (or whatever it was), as well as reducing a bunch of other rashes. Makes life far more comfortable! NB. It took several months for the benefits of hydroxy to manifest, and we did have to tweak the dosage. Hope this helps.
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