hot hands and feet

[pattyk]

i am wondering if someone can help w/ my problem. for the last maybe 5 yrs ,my hands and feet wiil swell, turn red and be firey hot, in a matter of minutes. this can happen if a room becomes stuffy, or if i take a walk outside, or sometimes in the middle of the night !! i have to run a tub of cold water or wet a cloth and this will eventually help. i have always been a healthy person , have very good eating habits and have worked out consistently for many years. i'm not overweight, nor do i smoke.

now, conversely, my hands and feet can become blocks of ice in the winter time. i have had one hand be icy cold and one hand red and hot, at the same time. it's not only weird, but it hurts a lot, especially the heat. i've been told that the cold is raynaud's but the test came back negative . i've seen the word 'erythromalalgia" ?? is this me? what can be done? thanks

[Hidden]

I was going to suggest Erythromalagia too, which as i understand you can have both. You may benefit from the bio feedback therapy, as it may be that your peripheral nervous system is very overactive. This involves treatment with hot and cold water, so you'l have to look it up - maybe worth a try though!

[pattyk]

thanks i'll check into that!

[Barnclown]

yes: sounds like me: simultanteous raynauds & erythromelalgia. this apparently is relatively rare. and the combo can be very frustrating and uncomfortable (even down right agonising) treatment is kind of a hit & miss situation: there are not firm/tried& true treatments, it's down to trial & error. but there are certain things you can try and can

avoid doing: i urge you to read the erythromelalgia section on the Raynauds & scleroderma society website, and also to seek out the website of the Erythromelalgia organisation (TEA) website, or email them at: [e-mail]

they are a really legit organisation in the usa, with a strong medical advisory council involved in some of the best research int3ernationally on EM (erythrolmelalgia). their archives & newsletters hold lots of really good advice and info generally

personally, my simultaneous RP/EM is secondary to systemic lupus. i have been on hydroxychloroquine (plaquenli) for 2 years+ which has slightly taken some of the edge off my EM but hardly helped my RP. lately, i was put on amitriptyline 20mg for pelvic girdle/gyn issues, and my rheumy was glad cause she thought this could also help my EM. but i can't say it has. basically, i lifestyle manage my RP/EM, trying to avoid extremes of hot & cold, taking great care with my feet & hands wear. using arnica gel on my feet each morning. changing footwear 1/2 way through the day etc.

i vvvvvery much feel for you & wish you the best of luck with this

[pattyk]

thank you Barnclown! i will ck out those websites. it's comforting to know that i'm not in this alone.

[AHM42]

Yes you can have both Raynaud's and erythromelalgia and strangely the treatments are very similar. For example some people have benefitted from iloprost infusions. Another tried and tested medication given in a low dose is praxilene. Alternatively if the pain gets really bad doctors may prescribe gabapentin or pregabalin. Talk to your rheumatologist about the alternatives.