- I'm a 34-year-old mom living in Wales, and for the past five years my hands have been in pain.
- The colder the temperature is outside, the more severe my symptoms are.
For the past five years, each September has filled me with a sense of dread as I've gotten ready for the chill of fall, winter, and spring. From the moment leaves start to change color, the pain in my hands becomes a constant battle.
When the pain began, it was mild. I managed to ignore it and tough it out until warmer months came back around. But for the past two years the pain has been a disability.
My hands are always cold and painful
If you were to look at my hands in the middle of winter, you'd see red, tight, wrinkly skin. My fingers, especially the areas around my knuckles, are often swollen. Little ulcers on the tips of my fingers look like they're nearly about to burst.
They feel like ice. The colder it is outside, the more severe the symptoms.
They look horrific. I hide them away so I don't have to look at them. The first thing I see when I'm talking to someone is how beautiful their hands are.
If the problem were just how they looked, I'd learn to suck it up — but they're also incredibly painful. If something rubs up against them, they hurt. If something knocks them, I scream. If something cuts them, I briefly feel like driving to the hospital.
Wrapped in the thickest mittens I own, they're warm and protected, but I can't live in mittens. My job involves typing. When I'm not working, I'm raising three young children.
This winter they've been particularly bad. I often have to ask my kids to open jars and wash their own hair. I've dreaded park dates and turned down playing in the snow.
I finally got a diagnosis of Raynaud's disease
In March 2022, I went to a general practitioner here in the UK. They looked at my hands and said I'd need to have a blood test.
When I phoned in for the results, I was told I might have scleroderma, a rare autoimmune disease. I was terrified — having this would change my life. I was placed on a waiting list to see a rheumatologist and told to keep my hands as warm as possible.
A year later, I saw the rheumatologist. Prepared with a piece of paper with all my symptoms, I told the doctor everything. She listened, asked me questions, and examined my hands and other joints.
After 30 minutes, she made her diagnosis: Raynaud's, a condition where sensitive blood vessels overreact to cold temperatures and become narrower than usual, significantly restricting the blood flow.
My case is severe
The doctor told me I had a pretty severe case. Then she started talking about treatment.
I've first got to try medicine to reduce my blood pressure so that blood can more easily flow to my fingers. My blood pressure is already quite low, so she warned me I'd probably feel dizzy and said I should be careful about the activities I do after taking the meds.
She also sent me for more blood tests and ordered an X-ray of my hands. Apparently the condition could impact my bones.
I made it into my car and broke down crying. I'm very grateful to have a diagnosis and a treatment plan. But the condition can be linked to other autoimmune diseases. It was overwhelming to realize this could change my life forever.
A few days after getting the diagnosis, I'm just trying to focus on what I can control. I'm starting on the medicine. I've given up coffee, because caffeine can cause blood vessels to constrict. And I've looked into getting a pool membership, as I won't be able to do cold-water swimming outside through the chilly seasons.
I'll get through this, but the thought of it scares me.