04-21-2012, 08:24 PM
So i have been concerned about my little feet. they are ALWAYS cold and my toes turn purple at times, sometimes even my whole foot. Most of the time i cannot feel my little toe. i try to get the blood flowing by rubbing it under my heating blanket, but its always like that. my grandmother had lupus and had many complications and other ailments including poor circulation. toward the end of her life, her feet were just like mine and she actually had her little toe amputated. my circulation is poor in my legs and feet and i am not sure if this has to do with the lupus...but sometimes my legs and feet hurt to the touch after standing for a while and are only relieved when i rub them out and get the blood flowing....not to mention the joint pain.... any thoughts? im afraid
04-21-2012, 08:39 PM
i too have cold limbs.
my feet get so cold it hurts.
i know my circulation or lack of it is my problem.
there are new drugs that can help with this.
i suggest that you speak to your doctor.
there are blood thinning medications.
and calcium blocking medications, both of these may help.
it could also be for another reason.....
that is why it is worth talking to your doctor.
04-21-2012, 08:45 PM
Google Raynaud's Syndrome. It seems to be a "best friend" of Lupus, Sjogren's and other AI diseases and likes to come along for the ride.
Many of us here have it. My toes turn purple, too. I wear socks all of the time, and I have some nice fuzzy ones for bedtime.
My feet are almost always numb, too. I do find that I feel much better for a while after I get a massage and my masseuse gets the blood flowing in my legs and feet.
You mentioned that you are a model and have to wear heels a lot. That is definitely bad for your feet! Try to step out of them as much as you can! Perhaps you can carry some warm socks with you and slip them on whenever you are not "on stage".
04-22-2012, 09:46 AM
I also have Raynaud's - actually, that started a long time before everything else. My mom has it in her fingers, but I get it more in my toes.
I don't know if that's what you have, but if it is, some of the following info might help....
My toes are ALWAYS cold - the only time they are ever warm is when I first wake up in the morning and they have been under a down comforter all night, but the second I pull them out from under the covers, they start their downward spiral, LOL - even in the summer!!!!
Definitely talk to your doctor, because things can be done to help. Before I was diagnosed and got some help with it, I'd have toes ulcerate and have to walk around for about 2 months every winter with open sores on a couple toes. And the rest would be so sore I couldn't stand to be barefoot in bed - the pressure of the sheets was painful - I had to wear soft sock all the time, and even putting those on was torture. They pass through stages - they'll turn white and bright pink and blue and purple - they'll pass through tingling and numbness and then into pain....and of course everybody's different. I used to call them my "patriotic toes" because they turned red, white, and blue... :-P
Once I got a diagnosis, things got better. I am on daily aspirin for an autoimmune blood clotting issue (APS), and that might be helping - but for sure, it helps to make some lifestyle changes.
- I make sure my feet are always dry, even if I have to change socks several times a day.
- I never wear cotton socks, because they retain moisture and moist socks wick heat away from your feet.
- I DO wear lots of "SmartWool" socks (or rip-off brands), even in the summer. They make nice thick wooly ones for the winter, and thinner ones for summer.
- I never wear socks that are too tight, or shoes that squeeze my toes. In fact, I buy most shoes a half-size large so I can wear thick socks and still not have my toes squeezed. Some brands have a nice big toe-box (Keens are great). Pressure on your toes impedes circulation.
- I wear lots of clog-type shoes so I can take them off frequently during the day, wiggle my toes, and let my feet get some air on them so they stay dry.
- For flare-ups, my doc gave me some nitroglycerine cream, which seems to help a lot if I catch things early.
- No hot baths (I don't always follow that rule....)
- No caffiene (I DEFINITELY don't follow THAT rule.... :-P)
The last two winters have been MUCH better since making those adjustments.
I hope that helps....and I'm sorry you're experiencing this - but you are far from alone in it!!!!!