[BBC News] 'My cold fingers were caused by a disease' - Article on Raynauds and scleroderma

InitialConditions

InitialConditions

Senior Member (Voting Rights)
https://www.bbc.co.uk/news/articles/cx2gky52p5qo

"About 15 years ago, Tim Holt-Wilson noticed a "gradual degeneration" in the warmth of his fingers.

The 66-year-old, who lives near Eye, in Suffolk, had already been diagnosed with the autoimmune condition Scleroderma - which caused stiff skin and inflammation - but he noticed how cold his fingers became.

It turned out to be secondary Raynaud's disease - a condition that affected extremities such as the hands or feet during cold temperatures.

Mr Holt-Wilson has found ways to cope with his conditions and shared his experience for February's Raynaud's Awareness Month, external.

"I hadn't heard of Scleroderma before then, but I think I had heard of Raynaud's before... but I never thought that was on the path of my life," Mr Holt-Wilson explained.

"It's like with all these illnesses you never think when you're younger, 'Oh, that is the trajectory of my existence, that's going to frame my life'.

"You just reformulate yourself." [CONT]
 
I developed Raynauds in my late teens or early 20s. I'm not sure I even have it any more as I don't go outside much, especially when it's cold. It never bothered me too much, but it seems to be indicative of some sort of underlying dysfunction that's likely auto-immune in nature.
 
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One can only hope that the people responsible for the recent breakthroughs in Raynauds will be able to have the same success with DecodeME.
 
I developed Reynaud's in my late 50s. Some people get pain with it, but I never have; it's just a slightly weird thing where you can't feel the bits that have gone white.

Pressure on my finger ends seems to trigger it as much as cold. Always get it when I tuck the bottom sheet under the mattress, or if I slide my fingers under a tight waistband to scratch my back.
 
Doctor told me I had Raynaud's. It had come on suddenly. My main symptoms was that when my nose or fingers got cold they began to hurt - a lot.

Curiously it went away again later, then came back later still.

I later learned that too much vitamin b6 can cause peripheral neuropathy.

www1.racgp.org.au

newsGP - ‘I couldn’t walk’: GP’s personal story of vitamin B6 toxicity

Found in listed medicines, energy drinks, cereals and weight loss shakes, some people are consuming more than 50x the recommended daily intake.
www1.racgp.org.au

I strongly suspect I had excess b6. I read all the labels on my many pills and found they love to add b6 to things. It must be cheap! It was in my b-complex and my iron tablet and my magnesium.

I cut out all pills with b6 and even though winter has arrived here, my fingers feel fine. When they get cold they just feel cold, not agonising.
 
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InitialConditions said:
The 66-year-old, who lives near Eye, in Suffolk, had already been diagnosed with the autoimmune condition Scleroderma - which caused stiff skin and inflammation - but he noticed how cold his fingers became.

It turned out to be secondary Raynaud's disease
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This isn't really right. His cold hands are due to the Scleroderma, which produces structural changes to the vessels - including complete loss of vessels to fingers in severe cases. There may be additional intermittent spasm (Raynaud's) but it hardly matters in the context. He seems to have been advised by a doctor who isn't that familiar with the biology!

Raynaud's outside Scleroderma is a very unpleasant but temporary problem. Scleroderma with an overlay of Raynaud's is something quite different.
 
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