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Hi There. I have had Primary Raynauds for 15 to 20 years. I manage to control it most of the time by keeping my core temperature warm, i.e.. overdressing for the weather. We live in a very cold area with temperatures below freezing almost every day in Winter. We do not have central heating, so I rely on wood fires, portable electric heaters, gloves and hand warming sachets. In Winter after even one Raynauds episode, I develop tiny, very painful ulcers on my fingertips – they heal within a few weeks, but make touching anything, even typing now, extremely painful. I also get swollen painful knuckles, usually on the outside fingers of my hands. Is this normal for primary Raynauds?
About ten years ago I visited a vascular surgeon and a rheumatologist to exclude lupus, RA or scleroderma. My bloods were clear, and nail-fold capillaries were fine too. Besides the occasional Raynauds episode usually caused by swimming in Summer, my joints and the ulcers heal completely in warm weather.
I would love some input on this. I have searched online and can’t find any answers yet.
Welcome to the forum, ElasticMom.
You may be experiencing what is referred to as chilblains (perniosis) and is not uncommon to occur in people with Raynaud’s. Usually, they are caused when the area of skin is warmed too rapidly causing the capillaries to leak out underneath the skin. Blisters can form, and some can lead to small ulcerations depending on the severity, and these can be quite painful. The sites epodiatry.com and the Mayo Clinic have some good information on these.
It’s always best to have any ulcers evaluated by a physician for an accurate diagnosis.
Some people have reported having knuckle/finger pain/swelling with chilblains, depending on their severity. There could be an underlying condition, for example arthritis, that has not yet been diagnosed. Best to have your doctor take a look or take photos of them to show if you can’t get seen during a phase.
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