Raynaud's dilemma - too cold, then too hot?

I've been having problems with my Raynaud's flaring up lately, and I'm experiencing weird new symptoms. I mostly have trouble with my feet, not my fingers (yet), and my toes have been turning that icy blue color quite a bit. But I've had something that seems to be the OPPOSITE of Raynaud's happening too!

My feet will turn bright bright red, and my toes swell up like little red balloons. And my toes and the soles of my feet become extremely painful. It's hard to walk and almost impossible to wear shoes. If I have blankets on at night I have to kick them off because my feet feel so hot!

Apparently there is a condition called erythromelalgia that goes along with Raynaud's syndrome in some people, but it's the opposite of Raynaud's, you get a surge of blood to the feet and it causes the symptoms I described (red balloon toes, etc). I emailed my rheumy and he agreed that it sounds like erythromelalgia.

Does anyone else have this happen to them??

How do you deal with your feet being too cold and then too hot in the space of a few minutes?

Thanks, suetoo! I just recently bought an oral B12 supplement so I will try that....I see my rheumy on Tuesday and will discuss it more with him.

Photographing your feet with your cell phone is a great idea too! I've emailed him pics of my malar rashes before. Photographic evidence is important because so often when I visit him, I DON'T have a malar rash or whatever right at that moment and then he just looks at me and says "I don't see it."

Glad to hear that your feet are feeling better with the B12!
((((((((((hugs)))))))))))
JoAnn

Oftentimes if I'm outside in the cold and then come into a warm room, this happens to me. It usually covers a larger part of my body. Then it causes me to break out in a terrible case of hives.

What you are describing, though, sounds a lot like hyperamia. That's just the term for blood coming to the surface of the skin, I think. 

I've been having a bad case of numb toes all day. First I thought they were just cold. Then I discovered that they're numb and that's what is causing my pain.

123abc said...
So JoAnn - has the B12 helped you? I have had this problem to the extremes - freezing or boiling hot feet forever! Doctors haven't been helpful - I would love to hear more on alternative treatments.

Hi 123abc,

Sorry to say that the B12 has NOT been helpful, nor has anything else really. The condition just seems to get better and worse on its own, just like Raynaud's does. Well, that's not really accurate either....the erythromelalgia for me is triggered by certain things. I mean, I do have some degree of erythromelalgia all the time now, but I can make it worse by (a) exposing my feet to heat and/or pressure, like a hot shower or putting heavy warm blankets over my feet, or (b) drinking alcohol, like having a glass of wine with dinner, which I probably shouldn't be doing in any case.

Most doctors have not heard of erythromelalgia...it's a neurovascular condition and is somewhat rare. It seems to accompany Raynaud's syndrome, lupus, or Lyme disease in some individuals. You can Google it for more info.

Good luck!
JoAnn

I have Raynaud's, and I live in Alaska, so basically am always cold! Haha. I don't have what you describe to the degree you have it, but I do know that when my hands and feet warm up from being outside they turn red and painful, and when I get in the shower I have to start out cooler than I'd like and ramp up the heat because otherwise my toes and feet turn red, swell, and hurt. I've never heard of the condition before, interesting.

Kathryn

I have the same problem---toes black and purple when cold, swollen bright red and hot to touch in warm weather. My toes hurt to touch, also, as if they are always sore. I have been diagnosed with Raynaud's. When I told my doctor that heat bothers me as much as cold he said that has nothing to do with Raynaud's and ignored me. Sigh.... it is not only painful, it is embarrassing!!! To make things worse, I now have Morton's Neuroma really bad in one foot and starting in the other. (a cluster on the nerve that controls the 4th-5th toes) and the doctor doesn't want to operate on it because of my Raynaud's. I feel like I can't even walk at times.

I don't know if this is related, but I have pain in my legs when walking up stairs. I have to stop and rest every few steps. It doesn't happen when I go down stairs. Anyone have this additional problem?

Thank you!

Have any of you ever tried the hand and feet warmers? You stick them on the bottom of your socks. I took my dog out for a walk and stuck them on. I'd been out for a bit and they began to start warming. As I continued, I could tell they were making my feet (especially toe area) HOT. I got to a bench, sat down and pealed them off. The ft stayed hot for quite a long time before they cooled down. I'll not be able to try that route again. The temperature was in the low 40's and we both needed to get out.
I tried electric socks for the first time, a wk.. or so later. Had them on the lowest temperature. It was the same thing with them. Even on low, it brought the ft. temperature up way too hot. If I try it again, I may try to turn them off fairly quickly. I really hoped to find a solution to walking outside in the winter.
This winter I have had the issue of ft. turning HOT, red and puffy in the shower also. Same in the bed at nite. I sometimes wake up and they're so hot and burning, unlike when I got into bed.