Raynaud’s Phenomenon: A Painful and Unwelcome Symptom of Scleroderma
Columnist Amy Baker shares how she copes with the condition
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.
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.
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.