COLD feet: I have lupus and was wondering if my... - LUPUS UK

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COLD feet

11 Replies

I have lupus and was wondering if my problem is lupus related. I keep forgetting to mention this to my rheumie. My problem is that my feet become extremely cold on days when it's below 70 degrees. Not all the time. Just out of the blue like right now. It feels like I have ice water running through my feet, especially my toes. I've put on 5 pairs of socks and covered my feet with 2 blankets, but it doesn't warm them up. This will last for hours and if it happens at night it will even prevent me from falling asleep. It's so uncomfortable. I feel like I'm outside and barefoot on a cold winters day. The only way to warm them up is to use a heating pad or stepping into warm water. Does anybody else have this problem and is it lupus related? Time to go get my heating pad. I need to buy some heated socks......

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11 Replies
chrisj profile image
chrisj

Hi Molly - I suffered from very cold hands and feet, in winter they would turn white, then red and purple and become quite painful. When I was diagnosed with SLE over 6 years ago the doc told me I had Reynauds which was why my fingers and toes went numb. Since I've been on hydroxychloroquine/plaquenil the white numbness has stopped and I'm on a tablet to boost my circulation....Mention it to your doctor. I still have cold feet and wear socks in bed, even in summer but that awful numbing has pretty much stopped...its much much better

nanny4 profile image
nanny4 in reply to chrisj

Hi there,I get really cold painful feet now i get blue,white,red hands,my lower legs often feel like ice , i was diagnosed with raynaulds a few years ago,it was so bad that I had ultrasound scans of the arteries in both my legs, the results were fine,didn't stop my problem ,but it gave me piece of mind that it. was nothing serious,I have to wrap up my feet and legs when I am not mobile trouble is I have s hot flush when I wrap up,ha ha,can't win.Hope you get it sorted out.Sandy

in reply to nanny4

I know what you mean Sandy. I usually have a minimum of 2 pairs of socks on every day. Sometimes up to 5 because my slippers won't fit if I try to wear more than that at home. Eventually I start feeling hot and sweaty and that's when I remember to take off some of my pairs of socks because they are making the rest of me hot. Can't win!

Thanks for your reply Chris. I have read up on Reynauds and about the discoloration of fingers and toes. I don't have that symptom, though. I have checked for this when my feet get that block of ice feeling. I do notice a slight paleness/grayish to my toenails. When I finally do get my feet warmed up again the paleness goes away and my toes become a healthy color again. I started on hydroxychloroquine 3 weeks ago and I know it takes a few months to build up in your system. Hopefully it will help with this problem in the future. I will try to remember to mention it to my rheumie at my next appointment which is in a couple of months. I'm glad plaquenil is helping you with your Reynauds. As far as socks go, I too wear them to bed. I also keep extra pairs at work for when my feet turn to ice. Very uncomfortable. Thanks Chris and keep well.

luupysue profile image
luupysue

I have always suffered cold hands and feet and was also told it was Reynauds and have been given some pink tablets (forgotten name) which helped but I think I am getting used with them again. Guessing a lot of us have same problems with hands and feet. Hope you get yours sorted soon x

in reply to luupysue

Thanks Sue. Not sure what my rheumie is gonna tell me, but am looking forward to finally finding out once and for all if this is Reynauds.

Caroine profile image
Caroine

Hi mollydoll, I suffer from the same especially with my feet but I have never complained of it.I think I would mention it this time to my rheumatologist.It is really uncomfortable even with socks on you are still very cold.Good you mentioned this.

Caroline

in reply to Caroine

Caroline, I guess we have the same problem going on. Socks don't do a thing for me either. We both need to mention this to our rheumies. I was reading about Reynauds and that's what it sounds like it is. Take care and keep those feet warm.

Stace1 profile image
Stace1

I'm still waiting to hear how bad my lupus is, I mean if it sle or dle but I get the cold feet does anyone else get pins and needles feeling when there feet are cold?

Barnclown profile image
Barnclown

Yes. I get coldness due to raynauds in feet & hands + numbness/pins'n'needles + nerve jolts in toes + in hands & feet + erythromelalgia. before this healthunlocked lupusuk forum started I was on the healthunlocked raynauds & scleroderma forum for months learning a lot about how to cope with all this. I'd recommend that forum to you all! A grrrreat bunch of people, really helpful. Anyway, like so many of my probs, I've been told this is a multidiscipline problem: podiatrist, rheumy, vasculitis consultant, orthopaedic surgeon...oh my gosh. But good, dry socks help me a lot: I change mine 2x a day, and last year online I discovered falke socks: this grrrreat make comes in a lot of diff mixes and weights and don't irritate my sensitive feet...good luck & take care

Barnclown profile image
Barnclown

PS also, it was on the Raynauds & Scleroderma association main website that i learned about raynauds and erythromelalgia sometimes being secondary to primary conditions, e.g. lupus. that explained a lot to me, anyway. seems to be the case with so many other probs we get e.g.vasculitis, GI probs, etc etc

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