My Scleroderma journey started on a beautiful September evening in 2020 when I experienced my first Raynaud’s attack. Little did I know what was coming for me.
There are two types of Raynaud’s syndrome; primary and secondary. Primary Raynaud’s is actually fairly common, occurring in 2-5% of the general population. Secondary Raynaud’s is more dangerous as its the result of an underlying health condition. 95% of Scleroderma patients experience secondary Raynaud’s and most experience it as one of their first symptoms.
Scleroderma causes the connective tissues in the body to tighten, shorten and thicken. This includes our blood vessels. Raynaud's phenomenon is a condition where blood vessels in the extremities, primarily the fingers and toes, narrow in response to cold or stress. This narrowing, or vasospasm, restricts blood flow, leading to the characteristic color changes and sensations of coldness and numbness.
By November of 2020, my fingers were perpetually bluish/purple, constantly freezing cold and achy. My hands, along with my face, legs snd feet started to swell and I also started having tingling and “zingers” that felt like electric shocks. By December of 2020, I had developed very painful open sores called digital ulcers on the fingertips of both hands. I continued to try to work, utilizing finger cots and wrist warmers to try to keep my hands warm and comfortable, but it was becoming more and more difficult to use them for anything. My feet would go numb and felt like they were encased in blocks of ice, making it difficult to walk.
The Rheumatologist I was seeing at the time was less than helpful. And in fact, he was often downright rude. Unfortunately this is often the case in the early stages of getting diagnosed with Scleroderma. It’s so rare that doctors look for any other reason for symptoms besides it. At the time, the only advice I received was to keep my hands as warm as possible and keep them protected. Which is easier said than done when you live in Wisconsin in December.
But in actuality, the Raynaud’s attacks in Scleroderma can be triggered by more than just the cold. The body loses its ability to regulate its internal temperature and stress response. For me, I experience them with ANY change in temperature, no matter how slight. I even get them when I enter a hot shower.
Out of desperation, I decided to get a referral from my primary care physician to the Mayo Clinic in Rochester. Stay tuned for next part of my story.
