Another phenomenon

As if having the widely misunderstood illness of ME/CFS isn’t bad enough, add in Raynaud’s Phenomenon, and life can get trickier.

I was 19 when diagnosed with Raynaud’s. Seeing the GP about another issue, he noticed my two-toned hands (white on the backs with bright red fingers) that’s Raynaud’s disease, he announced. He made a quick assessment, gave me a printout of information, and sent me on my way. The disease itself and any harm wasn’t on my radar at that age. I was more self-conscious about bringing attention to my colourful hands. I avoided wearing nail varnish and hid my hands up my sleeves. If I’d have been told loss of blood can mean dead tissue and subsequent loss of fingers, then I may have sat up and paid more attention. Luckily, my symptoms, then, were only mild.

The condition worsened in my 30s, causing burning sensations and pain. This is when I learned more about the disease. Raynaud’s means in cold environments, blood vessels narrow, restricting blood flow to the fingers, toes, ears, and often the nose, too. The best advice given was to avoid going out in cold weather and to wear gloves inside when needed. The trouble is that regular exercise is recommended to increase blood flow, but this clashes with managing ME/CFS. So here’s how I cope when fatigued:

  • In bed, my electric blanket is on. I try to paddle my feet and move my legs and arms around, when i can, to aid blood flow.
  • Out of bed, I wear my dressing gown over comfy clothes. Tucking trousers into socks and tops into trousers.
  • Heat clothes on radiators before wearing. Sometimes my partner covers me in warm towels fresh out the dryer…ah bliss!
  • I use hand warmers.
Pop cloth warmers in the microwave for 30 seconds. These stay warm for about an hour.
Given to me as a gift. Thanks, Mam!
Gel warmers I found in an outdoors shop. Activate by bending the silver disc, then boil in water to turn back to gel. These heat for around 2 hours.
  • We try to keep the house all one temperature as going from hot to cold rooms can trigger symptoms.
  • As soon as I notice my cold hands, I warm them up, catching symptoms before they begin.
  • Nifedipine helps me through the winter months. It has reduced redness, burning, and pain when the blood flow returns to my fingers.

I’m in my 40s now, and so far, the disease has not changed too drastically.

I hope it continues and wish you well if you suffer from this disease too.

Jacqui x

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