Raynauds and hot feet and hands

[marie5454]

Hi, have rsynauds and last few weeks have boiling hot burning itchy feet and hands, have to cool them down which brings on a raynauds attack, can't win. Due to see rheumy in August but what is this?

[bengali]

It sounds almost like Erythromelalgia. I have both Reynaud's and Erythromelalgia, and often swing back and forth like you have said. There is a reasonable amount of material online about the erythromelalgia (em) as well as others here and on other forums too, that have it, some, like myself and it sounds you may, too, have both.

It's a wicked cycle. Lyrica has helped some with the pain for me, but is making me put on a bit of weight. Felodipine has helped a bit with the Reynaud's, and the chilblains that were starting to go with it, but made the Em a bit worse.

Good luck finding something that works/helps a bit at least for you - it truly is trial and error, especially when you have both. (Reynaud's; socks, warmth, gloves,as you'd know well, but with the EM I've not been able to wear anything more than thin socks in the morning only on really cold mornings (we get down to minus 6 sometimes), but other than that only thongs/flip-flops. No shoes, at all, no thick strapped sandals, no socks for more than a few minutes even if really cold in the afternoon/evening, leaves me hot, burning, swollen and itchy - and it bloody hurts. Often even the thin strap of my things is enough to cause issues, especially in warmer months or as the day wears on. Drives me crazy, I hate it, nothing but thongs doesn't help the already achy knees, ankles, feet (recently been diagnosed with SLE), but I have no choice.

[marie5454 in reply to bengali]

Thanks for your reply. Aw, sounds like you're having it rough. I know what you mean though about the heat and cold combination, it's terrible especially when I'm at work or out walking the dog. It seems to start taking over your life and getting the balance right is difficult. Haven't been diagnosed with em yet but will see what rheumy says when I go in August, hope to get a bit of relief then! In the meantime I'll read up on it like you said. Thanks again

[bengali in reply to marie5454]

Started last augustish for me, so almost exactly a year now. First it was very rarely, feet only, then more frequently. Then hands, too. Recently I've been having facial flares, too (the ears suck, big time!!) and up my legs a bit.

But there are others that haven't had the lyrica or anything work at all, have it so much worse again, for me the lyrica makes the difference between coping and not I think, can absolutely tell if I ever miss one, even though not a huge dose. Others have found magnesium, or aspirin, or etc, help - but yes (!!) Ask your rhuemy before you start trying things.

All the best!

[marie5454 in reply to bengali]

Yes, I feel that it's travelling up my legs a bit, I think my feet and hands have been hot for a while but not paid them much attention until the pain kicked in a few weeks ago! Feel like both are permanently in a bucket of hot water. It's a weird thing to have both em and raynauds, winter should be interesting! Take care

[james87]

I suffer with Raynauds and often have burning sensations in my hands.

[marie5454 in reply to james87]

it's a weird thing isn't it? Striking a balance consumes a lot of time these days, winter will be challenging I think. It's quite mild at the moment. I feel so hot sometimes with the burning sensations the if I cool too much my fingers go white and numb. Due to see rheumatologist again soon so hope to at least get some answers and some relief too, can't wear thin socks in winter but struggling with the thermal ones. Have to keep warm but cool too😐 I'm sure we'll get there in the end!

[james87 in reply to marie5454]

Fingers crossed 🤞 I love the cold in the winter and burning in the summer #suchfun

[marie5454 in reply to james87]

I've been reading so much about everything lately that I feel I could pass medical exams any day now!!!😊 There seems to be underlying vascular conditions related to these problems, particularly tge microvascular structures. There's so much to absorb, the erythromelalgia site is interesting to read and this seems to be caused by the same processes as raynauds, then you could throw in a bit of scleroderma! I don't mind a couple of weeks illness every so often but chronic conditions become very frustrating. Sometimes, even though I don't want to be labelled, I need something more tangible to know properly what I'm dealing with, the rheumy clinic doesn't seem to be committing itself yet to a definite diagnosis, apart from raynauds but I'm a bit worried about what exactly they're waiting to happen before they do, am I to expect loads more manifestations? Back to the drawing board I think! Take care