Adding Raynaud's to the list: a real lupus phenomenon

I recently added another notch to the lupus bedpost. After almost 11 years with lupus, I’ve developed a new symptom.  My fingers now turn white and go numb in the cold. That’s right – I have myself a bonafide case of Raynaud’s phenomenon.

And I have to say – it can be painful! It’s a pretty common accompaniment to lupus – and up until October, I’ve always answered in the negative to my doctor’s question, “Do your fingers turn colors in the cold?” But that is the case, no longer. My fingers now turn ever-so white when I’m cold, going numb within seconds, with the burning and tingling following once the blood returns to my fingers 10 or 15 minutes later. Gloves help – but I find that exercising my hands and fingers helps the most.

So what is Raynaud’s? It’s an issue with circulation – and many times, a baby aspirin can alleviate the issue. But, just like many lupus patients, I’m already on a baby aspirin for clotting, so those 81mg are already working overtime elsewhere. Here’s the way my doctor explained it:

In the cold, our bodies constrict blood vessels in our extremities to keep our core (internal organs and the trunk area) warm. Usually, this constriction isn’t noticeable, and once the body warms up, the blood vessels open up again, and normal blood flow resumes - a process that should be seamless. However, in people with Raynaud’s, the blood vessels over-constrict, and blood flow is temporarily cut off from those extremities, causing fingers to go white. And if the blood vessels are over-constricted for an extended period of time, the body pulls the oxygen from the blood vessels in those extremities, causing fingers to turn blue. Once the body finally warms back up, the vessel re-open, and the blood madly rushes back to those poor, fledgling fingers – causing them to burn, tingle, and turn bright red. Nice, huh?

So – I’ve officially been inducted into the Raynaud’s gang. Interesting bit is that my sister-in-law, who has no signs of lupus whatsoever, has had Raynaud’s for quite some time. I’m in good company, it seems!

(And my doctor did mention that I could try mediction to help alleviate the issue...but I'm going to wait and see how annoying and painful this becomes first. If it's manageable without medicine, I think I'm just going to keep doing my finger exercises!)


Leslie said…
I have it, too, and I just found out recently that it can effect your ears, too. My ears turn bright red and feel hot and tingly when I go from cold to heat. So it's not just fingers and toes!
Aymie said…
Another one here too!
I'm on nefidipine for it thanks to some pretty nasty chilblains that haven't properly disappeared almost 3 years later. It does work! I still turn the crazy colours but the pain is nowhere near as bad as it used to be. I did an experiment, with my doctor's agreement of course, and stopped taking it for 6 months in spring/summer. If I'd even look at something cold I'd turn blue during that time!
The only thing is that I had to try out different dosages to find one that worked for me. Hot flushes at 22 wasn't a great look.
Unknown said…
Hey Sara,
Thanks for writing about Raynaud's! Over the years, I have found a couple of tricks to help with it....
1)wear mittens instead of gloves. gloves separate fingers and it is harder to keep fingers warm in gloves than in mittens where the fingers can help keep on another warm! also, I will often throw a hand warmer into the mitten to help me regulate temperature.
...sometimes just holding on to a cold grocery cart will cause me to lose circulation (even in summer)
2)I wear a down vest (north face)on any chilly days (even inside our house). my family calls it my uniform. :) I have found that if I can keep the core of my body warm it helps to keep Raynaud's at bay.
interesting that yours popped up after having children -- mine did too. lower body fat + aging seems to lend itself towards Raynaud's.
Merry Christmas to you and your family!
Sara Gorman said…
Wow! Such great feedback, and super advice. Thanks, guys - I'll be sure to use these tips in the coming months! Merry Christmas!
d'Artagnan said…
I agree with the keeping your core warm comment. I also find making sure that I have proper gloves and socks on and that my hands don't get wet (when scraping off my car for example) that it helps reduce symptoms.
Sara Gorman said…
Someone recently told me at a lupus event that if you keep your core warm enough so that you're almost can keep raynaud's at bay. I scoffed when i heard it, but in trying it the last few times I've been really does work! Thanks again for the comments.

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