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!)
Comments
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.
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!