Raynaud’s Phenomenon: A Painful and Unwelcome Symptom of Scleroderma

Columnist Amy Baker shares how she copes with the condition

Amy Baker avatar

by Amy Baker |

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One of the first noticeable symptoms of my scleroderma was ice-cold fingers and toes. While they would morph into a lovely variety of colors, it hurt when they did their magic, color-changing routine. I admit I felt rather patriotic when they turned red, white, and blue (and sometimes purplish). But why were they rebelling against me? I did not like it one bit.

Say hello to my little friend Raynaud’s phenomenon, a condition that causes decreased blood flow to the extremities.

In primary Raynaud’s, the condition occurs on its own, and those affected are unlikely to develop a related condition. Most scleroderma patients experience the secondary form of Raynaud’s, which is connected to another illness.

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For many people with scleroderma, Raynaud’s is the first telltale sign that something is amiss. My fingers and toes will throb, sting, and, my least favorite, tingle. It only happens when I’m stressed or too hot or cold, and the sensations will last long after the attack has subsided.

Getting diagnosed

When I first started experiencing these symptoms, I felt like a car breaking down. I took myself to the shop, aka my physician, but I didn’t have any attacks while there. So I decided to take pictures of all of my visible symptoms.

I had a nagging feeling I was going overboard with the photos, but they helped my physicians see what was going on with my body and put the pieces together. A rare disease like scleroderma can be challenging to diagnose, especially when bloodwork or other tests don’t reflect how you feel.

If you are struggling to obtain a diagnosis, you might consider taking pictures to document any issues. My doctors have thanked me for doing so.

Coping with Raynaud’s

Thanks to Raynaud’s, even opening the freezer to get something cold out is painful for me. I keep a pair of gloves on top of the freezer.

My hand warmers, which I carry in my purse, are another must-have. Buy them, place them in all locations, and you will thank me.

“But Amy, it’s hot out here! It’s summertime!” True, but the air conditioning used in offices, homes, and stores to keep us nice and cool can also trigger an attack.

Even my feet and legs cramp when they get too cold. There’s nothing like shooting out of bed in the middle of the night with a foot or leg cramp so intense you start hopping around like you’re on fire. Zero out of 10 — I do not recommend.

Stress can also bring on these unpleasant events, causing me to feel chilled to the bone and to shake like a Chihuahua. Unfortunately, stress is prevalent in our daily lives. If you cannot reduce your stress levels, find some calming methods that can help you center yourself.

Because Raynaud’s restricts blood flow to the fingers and toes, it’s imperative to talk to your doctor about medications that can widen blood vessels and improve oxygen flow, resulting in fewer attacks.

To all my scleroderma brothers and sisters, keep those fingers and toes warm!


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

Patricia Rowe avatar

Patricia Rowe

My Raynauds has been very severe especially on my toes. One thing I found that has helped me tremendously over the years is red wine. Especially red wine from Australia or South America like Argentina. After only a few sips the color starts coming back.
During the winter I have a glass with dinner every night and keep a small glass on hand when I am cooking and taking things out of the freezer etc.
Grocery stores can be tough but my husband comes to help handle things when he can.
A trip to Maui mid winter always gives me a chance to heal but I cannot even enter a grocery store when I come back for at least 3 weeks.
The red wine has been such a help. I hope others find the same.

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Gaynell Harding avatar

Gaynell Harding

I feel your pain. I have been dealing with constant Raynauds for 2 years, it never goes away, was diagnosed with limited scleroderma which my rheumatologist said is the good kind. I really hate this condition as I always enjoyed cooking, but not so much anymore. I have everything around me to help warm my fingers but the best way is putting them in my armpits. I'm really getting tired of it all, venting can at least let me try and let it go!

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Diane Salling avatar

Diane Salling

Far worse than all the regular symptoms, for me, is the finger ulcers. They form on the tips of my fingers, right on the nerve endings. They burn, hurt, and sometimes errupt like a volcano. The pain is constant, 24/7. I wake up with tears streaming down my face. And they last a minimum of 6 weeks. One I have now has been present for almost a year.

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Mary P. Brown avatar

Mary P. Brown

Are there any support groups for people with Scleroderma/Raynaud's to talk with each other? Even virtual would be better than nothing. Thanks.

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Tracy Auster avatar

Tracy Auster

I feel your pain ladies! The ulcers are unbearably painful, having the tip of my finger amputated was less painful than the actual ulcer. Of course there is always a silver lining............. I do get 10% off my manicures now (Afterall, they are only working on 9 nails).
I have had severe Raynaud's for the last 35 years (and limited scleroderma) but it has only been in the past two years that I am now experiencing Raynaud's on my tongue. The tip turns bright white, it feels a bit swollen and I begin to lisp until I am warm again. Anyone else ever experience this?

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David Wise avatar

David Wise

I thought I was the only one that had Raynaud's in my tongue. It is painful and like you Tracy Auster mine feels swollen and turns white but not just the tip it goes beyond half way up my tongue. I can say i will never look at it again when it is happening cos a white tongue does not look right and upsets my stomach just from the look of it.
I was diagnosed with Scleroderma 3 months ago but my symptoms started 3 years ago. First was red hands when I would go outside in the cold then they started turning white and purple and blue. Trouble swallowing came along with it where when I swallow food half the time I half to cough it back up and re-swallow.
The finger ulcers oh my gosh, I would wake up in the morning and it felt like a wasp was continuously stinging my tips along with a hammer slamming down simultaneously. I would get ready and go to work as it did it's thing for hours.
WORK, this brings me to a important question for all of you...My job i worked for 13 years 10 of em in a different department from the last 3 years. The last 3 years is when symptoms started. How many of you worked around or was exposed to in some way the compound SYLICA????? I read somewhere that it could be the culprit to Scleroderma.
I started going down hill 6 months after working with it. I worked in a tire factory and SYLICA is a main component in making tires. I would love to know how we all came about this disease there has to be something about all of us in common. Surely it dont just pick and choose who it wants there has got to be a public enemy #1.
Love to hear what any of you might have to say about this.....

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Tracey Kenard avatar

Tracey Kenard

My 34 year old autistic son suffers from Raynaud's. I had no idea what was going on when the finger ulcers started. He never complains about anything so finding out how painful this is broke my heart. His had stay cold and are a constant purplish color. He's also lost about 95% use of his hands so I have to help him with self-care. My heart goes out to all of you. We are all in prayer.

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Lucy avatar

Lucy

I was diagnosed with Raynaud and limited Scleroderma back in 2019 .. However my RA tells me u have Scleroderma but you don’t have it till u get symptoms .. I’m so confused .. my question is “ Does everyone with Raynaud syndrome Gets Scleroderma or not really .. Also how do I know through my blood test if I really have limited Scleroderma ? What should I look for in the blood test ? Please help ! I’m so confused

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Jo avatar

Jo

I have Scleroderma with Raynaud diagnosed in 2009. I use disposable hand warmers in my pockets year round. They stay hot for about 7 hours before I have to change them. I buy them from eBay, 40 pairs in a box for the cheapest price. Just put my hands in my pockets to warm them up, or pop the warmers inside woollen gloves or mittens to keep the fingers warm for hours. I also carry a bottle of Nitro-lingual in my purse. My family doctor prescribes it. It lasts for 6 months before it must be replaced with a fresh prescription. (It's the same stuff people spray under the tongue for chest pain). If the fingers go white or start to hurt, I spray them with Nitro-lingual and let them air dry. It works almost instantly to force the blood to return. Keeping feet warm prevents toes getting cold so no fancy shoes for me - just soft closed boots or soft shoes worn with socks or lined with sheepskin or fake fur. I no longer care what others think of my fashion choices - a trip to the emergency room with ulcerated fingers years ago cured me of that vanity! I'm in Australia and use the internet to search for season sales to buy whatever I need. Best buy was a pair of Canadian snow boots bought cheaply in an end of season sale that I wore out 3 years ago. I replaced them with very soft leather boots with side zips as well as laces to accommodate my painful feet. I no longer bother with dresses (I donated those to the charity shop) as boots go so well with jeans or any long pants in all seasons.

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Penelope avatar

Penelope

I have been diagnosed with raynauds in 2017. and now limited Scleroderma plus calcinosis cutis. CC is very ugly disforming my hands with calcium deposits that ulcerate....I found the CC gets so much worse with Vit D..
I have heated battery gloves, I love. I also find stress, cold and low blood sugar bring on raynauds symptoms, I quickly put my hands in hot water! I would love to talk with people with similar symptoms also.

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