Reynaud's Syndrome and Infrared Cameras

[m31andy]

An interesting thing happened at the weekend, which I completely forgot to mention.

I did mention that J, A, cuvalwen and I skipped off to the Science Museum on Saturday and had fun in the Launch Pad. What I failed to mention was what happened there.

Now J, my sister, has Reynaud's Syndrome and from reading the Wikipedia article, I can pretty well confirm that it's primary and definitely genetic (Mum makes a mean pastry and I remember my sister's fingers turning dark blue when we picked sprouts one Christmas morning). And yes, it has been properly diagnosed. But, as with all 'quality of life' conditions as opposed to 'quantity of life' conditions, it remains untreated as it hasn't been researched enough yet.

It was interesting to read the article where it talked about "avoiding attacks" as if this is something that comes and goes, like migraine. It's not. And the best proof I have of this happened at the weekend.

There was one of those infra-red cameras set up so we were all poncing about rubbing each other in (mostly) publicly accessible places. J was stood there and then A noticed her hands. While we were all radiating mostly red in cooler parts (i.e. where clothing was present) our exposed skin mostly radiated white (except my cheeks which were a nice pink, thank you very much!), J's hands were purple. It was warm in the room, her hands felt fine (she was not reporting any pain) and yet, there for all to see, was absolute proof that her extremities were cold.

So no, Wikipedia, one does not suffer "attacks", it's always there. Just once your extremities get below a certain temperature it starts hurting. That's all.

Actually, I think I've got enough scientific evidence for New Scientist here. *cough*

(Disclaimer: I appreciate that Reynaud's Syndrome does encompass both extremes – sufferers can be prone to flushing as well – it's more a problem with body temperature regulation, but the article linked to doesn't mention this and it's not something my sister suffers from, so I'm not mentioning it explicitly…)

Comments

I beg to differ

[not-here.livejournal.com]

It's correct. Although it's something you always have you do experience "attacks" as in flare ups. As you poitned out she always has cold hands but they don't always bother her. Gout is another good example, you always have an inability to process uric acid but only sometimes does it crystalise and cause pain.

Migraines by contrast are transient.

I'll step down from my soap box now!

Re: I beg to differ

[m31andy.livejournal.com]

Fair enough, re-reading the article implies that the article itself is misleading, especially in talking about both the primary and secondary syndromes in conjunction - implying that J would probably not get any attacks if she didn't smoke and didn't drink coffee where in fact they are only worsening factors (ie if her hands do get cold the attack will be worse if she's been smoking and drinking caffeine)

Interestingly, while I agree that migraine is transitry, surely if we're talking avoiding certain trigger factors to avoid an attack then surely there will be some kind of permanent underlying cause - as is the same with gout (when avoiding certain foods) and Reynaud's (when avoiding the cold). Of course, it's very difficult to specify this as I'm completely convinced that migraine is an umbrella term for a number of different types of single focus or cluster headaches, all of which have different underlying causes.

Re: I beg to differ

[bob]

ive certainly had a lot less "migraines" since i gave up caffiene

[space-oddity-75.livejournal.com]

Oh, I remember the thermal cameras in the Science Museum: hubby and I had some fun with them (his hands on my boobs, mine on his bottom, etc... you know the drill). ;)

How peculiar for your sister to 'visually' realise how her condition affects her body even when she's not in pain. Hope her syndrome is bearable enough for her to forget about it, sometimes.

[m31andy.livejournal.com]

It was very perculiar, yes. I'm going to have to see if A got any photos. I know he took one or two.