The magic of Raynaud’s Phenomenon
August 1, 2010
Raynaud’s phenomenon, also known as Raynaud’s syndrome and Raynaud’s disease, but I reckon Raynaud’s phenomenon sounds much more mysterious.
I had heard of this symptom of MCTD but didn’t pay much attention to is as I didn’t have the signs straight away. I think it was about end of April, the first coldish day and I noticed a couple of my finger tips were cold and white. I shook them about but really was quite fascinated by them. They looked so bizarre. I showed my friend but didn’t think too much of it.
On my next visit to my rheumatologist I mentioned, honestly just in passing that I had that strange sensation in my fingertips lately and he asked if they went white. I almost shouted YES really surprised he knew that. He explained it was a common symptom of MCTD and I should wear gloves and thick socks.
It is the strangest thing. Half my fingers will go completely, ghost white, while the rest remains pink. Then the blood will slowly return and my fingers will turn purple as if i have gotten newspaper ink on them.
But it’s not just in my fingers, every morning I arrive at work after a 15 minute walk from the station and my feet are totally numb. It’s a weird part of my disease. It’s annoying, but not painful or really worth complaining about. But worth noting.
I read somewhere that to get rid of symptoms to swing your arms around in circles but as you can imagine, when in a shop, a bar or at work, that isn’t really practical.
So that is my Raynaud’s story. Not that interesting but just another part of the whole illness, so thought I’d fill you in.
Have you read my post about my visit to the rheumy with my mum?
naomijoyce83
MCTD-The truth, the challenge, the hope 
I have Raynaud’s. Never had any luck with the arm-swinging thing, but sometimes I can kind of squeeze the blood back into my fingers. Do what you can to prevent episodes of it because over time the blood vessels in your fingers can become damaged and you can also get skin ulcers, and gangrene if you allow your fingers to be deprived of blood for too long. I did not take my Raynaud’s very seriously, but I now have chronic soreness and swelling in my finger that is the most prone to attacks. My doctor said this is because of Raynaud’s.
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I have MCTD and was diagnosed after being referred to a rheumatologist for my Raynauds symptoms. I have had issues for years and have been able to manage it pretty well, but this past winter it got to the point where I couldn’t even go outside even with my ski socks and Uggs on. I also ended up with frostbite on one of my toes, and as was mentioned this condition can cause serious tissue damage if not managed. I have a friend with MCTD that has actually had fingers amputated from Rayndauds damage – SCARY!! So it is definately not something to take lightly. My rheumatologist has me on blood pressure medication during the cold months, which helped me survive last winter. It’s only September and I’m already on the medication again, so the dosage is going to have to be played with – it’s going to be a LONG winter. However, it also seems to help with my migraines, which is awesome!! I’m trying to find a good sock out there that will help keep my feet warm if anyone has any suggestions. I currently buy the heaviest ski sock that I can find, but was thinking about trying some socks from Under Armour and am not sure. So any suggestions would be helpful!!
Hi Shannon,
Thanks for sharing. That really sucks that you’re having so many issues with your Raynauds. I’m a bit lucky because I live in Sydney, Australia and it really doesn’t get that cold here so I can survive with good socks and gloves. Hopefully someone else on here can make some recommendations. You’ve definitely encouraged me to look after myself with Raynauds, I don’t think I took it that seriously but your friend story is scary! Anyway, good health to you and keep sharing. Naomi
I have had Raynauds phenomenon for over 13 years now, and I can manage fairly well. The arm swinging thing works best for me, although when people see me doing it in a store, my school, or whatever, I get strange looks. lol. The worst I have ever seen it, is that it went up my arm almost to the elbow. I get into a swimming pool or the beach and it happens! About a month before I had it come on, I had a debilitating headache for a month, and it knocked me back very badly. I was in my prime and suddenly I felt like a stroke victim, and I still don’t know what happened, and then my buddy said I have white, “zombie hands” and my doctor told me I have it.
Keep your digits warm, hands to the side to let blood flow better, and the windmill thing with your arms works well. Everybody is different I guess.