How I Fight Raynaud’s With Medications, Gloves, and Ovens

Creative treatments are sometimes the way to handle the phenomenon

Lisa Weber avatar

by Lisa Weber |

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As I open the door, a burst of hot air covers my arm. Without hesitation, I shove both hands through the opening, allowing the heat to consume my forever-cold fingers. And for a brief moment, my body temporarily relaxes as the frosty aches in my hands dissipate. I pause for as long as possible until the radiating oven heat begins to scorch my skin like the bagel I’m toasting.

Raynaud’s phenomenon (or syndrome), which is a common disorder for those with scleroderma, causes blood vessels in my hands and feet to get confused and contract tightly, restricting blood flow. As a result, there’s little to no circulation and the limbs react as if they’re dying, becoming cold and changing colors from pink to white, then to a lifeless blue-gray.

Raynaud’s triggers

These attacks are triggered by different things, and stress is the most unpredictable of them all. While it’s important to control my emotions and not worry about life, everyday stress is sometimes unavoidable. Experiences like having to slam on the brakes to avoid a crash will undoubtedly trigger a Raynaud’s attack. Even small things like stubbing my toe will send my blood vessels into a chaotic tailspin.

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Another cause is getting cold, and this one is harder to explain. Of course, wearing a sundress inside a restaurant with its thermostat set to Arctic Freeze will chill my extremities into cadavers. But it doesn’t always have to be a noticeably cold environment to begin an episode. Simply walking down the frozen food aisle at the grocery store or moving to a shaded spot at a backyard barbecue can be enough. Every subtle drop in temperature sends an alarm to my unhinged blood vessels, and they don’t waste time overreacting!

The strangest trigger for me is exercise. After a workout, I have to bundle up until my heart rate and core body temperature return to normal. My doctors can’t explain why, considering exercise is supposed to be good for Raynaud’s. But the way I see it, some people call it Raynaud’s phenomenon. And the word phenomenon can be defined as something that can be observed, but is difficult to fully understand.

It’s unexplained for now, but any type of exertion ends with my body consumed by violent shivers and suffering through painful blue limbs.

Being proactive helps

As soon as an attack starts, I have to react quickly to warm myself. If my hands and feet become visibly affected, it becomes more difficult to recover. I’ll face hours of searing pain despite my best efforts to warm up. I’m almost certain I could sit in the middle of a bonfire and it wouldn’t speed up the recovery.

Luckily, I can feel the chaos starting before it’s visible. Little tingles begin at the very tips of my fingers and toes. If I could recreate this warning signal, I would gather 10 sewing needles and tape them together. Then I would gently tap them against the skin as fast as possible.

Ways I stay warm

When the first tingle sets in, I immediately spring into action. Putting on gloves and sweatshirts or making a cocoon with blankets is a typical treatment.

But sometimes I have to get dinner on the table so my kids can eat before their grueling soccer practices. In those instances, I do what I have to do, and a quick toasting of my hands inside the oven or over a pot of boiling water is a great fix.

I also strategically place space heaters around my house and HotHands inside my purse and car. HotHands is a nifty, disposable product that looks like a tiny beanbag. When you shake it, it gets hot and stays hot for eight to 12 hours. Holding them in my hands or stuffing them inside my shoes provides instant, warming relief.

There are also rechargeable hand warmers that look like a computer mouse. They do warm up quickly, but they’re not my favorite because I’m not good at keeping them charged. And I find them difficult to carry. They don’t fit inside my pockets or socks. Still, I do keep two at my desk in case I need a little extra hand-warming while I work.

Medication helps, too

As an added layer of protection, I also take sildenafil (known by the brand name Revatio) three times a day to help keep my blood vessels open. But even with medication, Raynaud’s phenomenon is still challenging to control. Sometimes, I have to ride out an attack. And that feels like I’m plunging my hands and feet into an ice bucket while needles are stabbing through my skin.

While there’s no cure for Raynaud’s phenomenon, I’m getting used to living with it. It’s becoming more predictable, and I’m getting better at proactively halting attacks. And besides, next to other scleroderma ailments, Raynaud’s is like an annoying hiccup.


Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

LESLIE A MORGAN avatar

LESLIE A MORGAN

Wonderfully written article. I too have Raynaud's, but not quite as challenging as yours. I do all the things you mentioned, gloves for everything, socks and shoes or slippers on at all time, keeping a sweater handy, etc. The only thing I might add to your arsenal, is a mouse house/warmer. My daughter bought me on on Amazon, that's pink. Amazon has lots more to choose from now. I find it helps when I've been sitting/mousing for a long time. Best of luck to you and your extremities.

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debra n camus avatar

debra n camus

Lisa: You perfectly describe Raynauds!!! It is still impossible for anyone to relate to it unless they have it. As I sit here at my desk in early September in Shreveport, Louisiana, where outdoor temperatures range from 85-95 degrees this time of year, I have a small floor heater at my feet and hold onto my HOT Hands between times I am typing on my computer. I too take Sildenifil and Opsumit for PAH prescribed by the best in the world, Mayo Clinic, but am hopeful that a more progressive medicine will be developed soon to give us more relief. Everyone thinks we are affected more in the winter, but not true, as HVAC blows CONSTANTLY here in the South to try to keep temperatures indoors at 72 degrees. Thank you for so accurately describing this malady. Debra Camus

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Paula Cox avatar

Paula Cox

It was comforting for me to read someone else's experience with Raynaud's! I am often asked what triggers it and why I don't move to a "warmer" climate from well-intentioned people who do not understand the triggers and how walking by air conditioning coming from an open door in a hot climate can cause the worst episodes!! It is a constant battle, and I have learned to cope with heated blankets on high (even in the summer months) to allow my body to "recharge" until I am no longer emitting cold on others or trembling from the cold when it is 90 degrees outside and 70 inside. I have burned through at least one heated blanket per year for the past 6 years! It is something I cannot explain but glad I have found a way to manage it. And glad to hear you have too!

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Leslie Dumont avatar

Leslie Dumont

I have a service dog for my Raynauds. She is always with me, she always has a warm belly and because of those two things my fingers never go into full blown black, numb, painful digits. I tried gloves, warm water, medication and none of those were effective. She is 100% effective.

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CAROLYN MOODY avatar

CAROLYN MOODY

I EXPEIENCE THE SAME THINGS WHEN I GET COLD

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Susan Sullivan avatar

Susan Sullivan

I was blown away when I started reading this. We could be twins. Everything that happens to you happens to me.I have portable hand warmers and chargeable. When you wrote about the supermark I so relate. I plane any thing need to be purchethere is down last.so many people have no clue what goes on for us,cold is our enemy. I am ready to discover or producea glove that will keep hands warm and tight. I would like to sty in touch my kindred heart
I am starting t work to find the right glove! Please stay in touch it would b nice to talk with someone who totally gets what I am going thru,!
Thank you Sue Sullivsn

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Sandra Kay Hodges avatar

Sandra Kay Hodges

Heated gloves work really well
https://toastytouch.com/products/toasty-touch-heated-gloves

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