Raynaud’s Syndrome

So, unexpectedly, I had a calm Christmas. Yes, I had nightmares. Yes, I’ve been depressed. But those symptoms are predictable, and I can mentally prepare myself ahead of time. I can keep my care team (read: wife and medical professionals) in the loop, and keep everything in context. Nothing major or disruptive, just depression and some annoying nightmares.

But there’s been another layer to my Winter complications. A moderately common disease called Raynaud’s Syndrome. It’s a chronic disorder, which can last your entire life. It affects many fewer men than women, but there are about 200,000 cases reported every year for people of all ages and sexes. But what does it do? It causes pain, irritation, and tissue damage including gangrene/frostbite.

Ouch! Here’s how it works: My fingers, toes, wrists, ankles, nose, even nipples get cold. Like, really cold. When my body senses cold, especially in the extremities, the body stops sending heat to the extremities to preserve core temperature. Blood vessels, capillaries, veins, and even lymph vessels spasm as blood flow is reduced. This hurts. Like, a lot.

After a while, the tissue grows colder and colder. There are a scary number of cases which involve people being so cold in the Summer that they get frostbite, even if it’s 100 degrees outside.

Son of a dog, folks! Thankfully, my case isn’t that severe, for now. I concentrate on staying warm, and keeping my core temperature high enough that my body wants to get rid of some heat, so it sends it to the radiators (fingers, toes, nose, top of head, etc.).

So I’ve been cold or hot for months. It sucks. But you know what? I’m glad to have the diagnosis. It means that I’m not crazy for being cold or hot when other people are comfortable. I can take control of this all on my own!

Unfortunately, the medications that work well for treating Raynaud’s are all blood pressure medications. I cannot take these because of my normal medication regimen, so it’s all manual work. That’s okay, though. I’m just glad that I have supportive friends and family who have all kinds of ideas.

I’m still depressed, and having a hard time with some of my work. I’ll talk about work another time, though. What matters is I’m okay. I hope you are all doing well. As ever, I pray for all of you, but if it would help you to have more prayer or positive energy, comment, and you will get it. Hugs, folks.

PS: You’re a bad-ass. If you have Raynaud’s, let me know. I might be able to suggest things to help!

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4 thoughts on “Raynaud’s Syndrome

  1. zooey

    I have a friend that has symptoms of blackish hands it’s the get too cold. I wonder if that it’s the same thing. Stay warm my friend.

    Reply
  2. L

    I experience this in my left nipple only? I had a breast reduction, it started after that and became unbearable in pregnancy. Scorching hot outside,, walk into the freezer section at the grocery store. It hits, I run out crying to turn the heat on in the car to ease the pain. It really sucks! The only thing that has helped me is lymph massage-I am a massage therapist) and those little hot packs you shake and they become warm. I always have some on me.

    Reply
    1. Rory Post author

      My wife surprised me recently with reusable hand warmers, including some foot-shaped ones that slide into my slippers. They are wonderful.

      Reply

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