Raynauds

As winter approaches, I find myself wondering what the next few months will hold.  I’ve had Raynauds for over thirty years — lots more experience with it than with RA!

Dealing with it is second-nature.  In fact, I didn’t even think to mention to my PCP until a couple years ago.  Some people might find that odd, but I never mentioned to him that I breathe, either.

It’s always been there.  I’ve dealt with it for so long that it honestly never occurred to me that it might matter.

Known variously as Raynauds Syndrome, Raynauds Phenomenon, and even Raynauds Disease, (sometimes spelled Reynauds), this is a bizarre situation in which the blood stops circulating to extremities.  Typically it affects fingers and/or toes, but sometimes the nose, too.

As a kid, I thought it was kinda cool that my fingers and toes did something that nobody else’s did, but when my dad found out, he freaked!  He had seen cadavers, and didn’t at all like the way my hands looked.  I convinced him that it happened all the time when I got cold, and that all I had to do was soak my hands in warm water to get warmed up again.

My grandmother, however, was a different story.  I spent a week visiting her one summer, and it didn’t matter one bit to her that my dad knew about it, or that we’d come to see it as peculiar, but ordinary for me.  She had me in to see her doctor immediately.  (Even though it was so long ago, I remember the blood draw, because it was the first time anyone other than my mom had drawn my blood.  And the lady did a crummy job.  She poked and jabbed and couldn’t find a vein to save her life.  I was incredibly sore, starting to feel like a pin cushion, and finally sobbed, “My mom always uses the other arm.”  So she switched arms and succeeded on the very first try.  Grandma said that the lady felt awful about it. Not that any of that matters.)

So Grandma’s doctor diagnosed my ten-year-old self with Raynauds and said there wasn’t really anything that could be done.  I should stay warm and avoid situations that caused the blood to quit circulating.  I guess we never thought about the fact that there are new discoveries in medicine all the time, and that maybe someday there would be treatment options.

Anyhow, enough rambling.  I started out to give a few tips on how I cope.

Gloves.  You can never own too many gloves.  I have gloves in the pockets of every coat that I own – some coats have two pair.  I keep a couple pair of driving gloves in the coat closet.  I keep driving gloves in the car (okay, in both cars).  I keep a pair of gloves in the kitchen with my potholders – I can put them on before removing items from the freezer (on days that I’m really cold, I even wear the warm gloves with a pair of rubber gloves over the top to wash vegetables).  There are gloves in all of my purses, too, and I use them in the grocery store if I have to reach into the freezer.

Socks.  My login is WarmSocks.  Wool, llama, alpaca, mohair.  Good quality, natural fibers make top-quality warm socks.  Avoid cotton; it is not warm and it bunches up. Also avoid angora.  I have three pair of wool/silk blend that are almost as nice as alpaca.  Electric socks are available, but it seems like the battery pack would be too heavy and cause the socks to fall down, so I’ve never tried them.  Thinsulate is on my Christmas list.

Pay Attention.  I can feel when I’m getting so cold that my fingers and toes are about to lose circulation.  Being aware allows me to drop what I’m doing and head inside to soak my hands/feet in warm water.  My daughter has discovered that she, too, can tell at the very beginning of an attack.  By treating it urgently, we’re both able to nip it in the bud.

Medication.  There are a few medications that can be prescribed to prevent the problem.  It’s good to be aware, too, that some migraine medications can make Raynauds worse.  Make sure that the pills you take to prevent migraines aren’t exacerbating Raynauds.

For more information, check the Raynauds Association‘s website.

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5 thoughts on “Raynauds

  1. I’ve experienced this for most of my life, and have recently begun experiencing it again. It really sucks for a pianist. I was talking to my rheumy about it this week because I assumed there was a nerve impingement problem and he mentioned Raynauds. We’re still doing X-rays just in case.

    • I hope that whatever the dx ultimately is, that you’re able to find relief! The first med I tried for Raynauds was procardia. While taking it, I was even able to stay warm building snowmen with my kids.

  2. The other day, a patient came in for her annual and mentioned how appalled a nurse she knew was about the spots on her feet. So she undressed, socks off, and there were those red, white, and blue toes of Raynaud’s. She had no idea that she suffered from this.

    Have you ever viewed yourself in one of those infrared displays where your digits are so cold they don’t even register on the readout? Those who don’t struggle with it have no idea how really cold cold hands can get!

    • …infrared displays where your digits are so cold they don’t even register on the readout?
      Technology is fascinating! I haven’t seen those, but that would be pretty neat to see.

      Hard to imagine someone not noticing ice-cold feet.

  3. Hey socks: I’ve got Reynaud’s as well. I’ve had it off and on as long as I can remember, but it became a permanent fixture about the same time I was diagnosed with RA. I also have high blood pressure and my PCP adjusted my blood pressure medication and that has largely solved the issue, except for really extreme heat or cold. Sounds like you’ve figured out what works for you and that’s all any of us can do. Stay warm!

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