Anyone else suffer/ed from Raynauld's Syndrome?

[earlgrey]

Got diagnosed with this last night. Am having a red blood cell count test done to see if there's any underlying cause. That's it really - just wondered if you could shed any light on it.

TIA

From a personal pov, that is. 'Spose it's early for a Saturday still .....

Hi, I have but don't know for sure as never been diagnosed. How did you get a diagnosis?

It runs in the female side of my family. My nan, mum and I have it. And dd.
As I had it worse when pg the midwife just said it was hormones

I get it in my hands and feet but not too badly. Doesn't cause pain there. It was worst in my breasts through both pregnancys. Caused me to faint on several occasions. Just going outside or in another room where temp was different started a reaction. Could do nothing till it passed which usually took about 15 mins. Apart from lots of rubbing the area which looked v odd in public and deep breathing. I wore loads of layers etc. My nipples used to go white. It felt like I was being stabbed or something.

First got it in breasts when I worked in waitrose as a teenager, staking oxo cubes above the freezers. Agony.

Since having dd I haven't had any bad attacks in my breasts. Just v cold hands, even indoors.

Dd had blue feet for months, ice cold and a cranial osteopath helped her. She's been ok for months now.

HTH. I found lots of info when I googled it.

My fingers & toes loose colour and sensation when there is a change in temperature or they get cold, They go white, then blue, bright red then normal again, this can take quite a while and is painful once the circulation gets going again. Never been diagnosed but think it may be raynauds, dd (12) is just starting to show signs of the same as well. I think if there is no underlying reason you just have to be aware and try not to expose yourself to sudden changes in temp , wear layers, gloves,hats etc in cold weather. Good luck with the blood test

I have it, in my case it is linked to early stages of Rheumatoid Arthristis.
I wear gloves a lot and try to keep my hands and feet warm - have a fabpair of insulated boots I wear all winter and a good deal of the rest of the year as well.
The rest of me is always warm but my hands and feet a re always freezing.

Like others here I've never been diagnosed, but think I do - hands are my problem... This has some useful info here

Wow, thanks everyone, seems it's more common than I thought - I'd vaguely heard of it before but had no idea what it was.

pm, you seem to have had it really badly. I only get it in my fingers and toes, although having said that I'm the one who pads around our house with 2 fleeces on and a hot water bottle stuffed up them, while everyone else is stifilingly hot.

GP diagnosed it, pm, just by asking a few questions. Have you never seen your GP about it? I suppose if you know what it is and it's not life threatening than there's no need for a diagnosis.

I am, however, a little worried about what the blood tests will reveal. Apart from rheumatoid arthritis, I wonder what else can bring it on. And I wonder if it ever goes away, or at least becomes not quite so severe, over the course of time.

Am off to trawl bd's link - thank you!

Oh sorry I forgot to ask - do any of your fingers/toes go numb/pins and needly with it?

Oh..someone might be able to help me with my son...some of this sounds a bit familiar.

Since toddlerhood Declan has always taken longer to return to normal colour after being outside/swimming pool. It is mainly his lips and cheeks that stay blue for about an hour after normal getting out of water/coming inside.
In the summer he gets really red and blotchy when too hot...many a time the teacher has bought him out saying is he ok? he always feels fine though.
When he played inthe snow (with gloves on) last year for about 15 mins he came in crying hysterically for about 30 mins about his hand and fingers really stinging..warmed them up gradually and he was then ok.
Then.....we had been at the beach collecting shells andwe were on our way back in the car when blisters appeared on the tops of his fingers and he was screaming hysterically 'help me'..rushed him straight round to a&e and they bathed them but didn't have a clue what had happened..the blisters went down and never peeled. They said to bring him back if it happened again...they haven't done so far..waiting for the summer!
He really seemed in a lot of pain with the snow/beach episodes.
Just wondering if any of this relates to your guys experiences??? If not i will go and be quiet..lol Just thought i'd ask on the off chance someone could help??

Declan is 9.x

me.x

Yes, completely numb when totally white, then pins/needles when colour returning. In my experience it improved slightly when I was pregnant, bit of an extreme cure though.
Twinmummyx2, I think if he was my ds I would discuss it with my GP.

I am a sufferer. Started at a young age - fingers and toes ... used to hate snow as a child and could never get into the whole excitement of when it snowed as it meant we would have to go out to play in it and I would always end up in tears of pain
But, strangely, when I went skiing for the first time (at age 24) I didn't have a problem - but then I had the right clothes. Thermal underwear, socks and gloves ... no problem.
I also used to get terrible pain in my thighs on a cold day after playing hockey outside (I played quite serious hockey as a teenager) ... I would come in and end up in screaming pain as my circulation did all sorts of odd things from getting hot and sweaty on a freezing cold day in a short hockey skirt. Seriously weird.

I find living in New Zealand helps now - haven't had an episode for 5 years. It will be interesting how a Melbourne winter will be - I have heard it is much colder than Auckland (which never ever goes below 10 degrees celsium during winter)

I think there are a fair few people on here with it- most of whom have discovered they have it in pregnancy when they started experiencing temperamental nipple issues. I'm currently 33 weeks pregnant and have to say I've been in tears with how sore my nipples can get in the cold (thank goodness the weather is changing). They go white, feel like I'm being stabbed through them and I have to stand there like a loon rubbing them to try and get the circulation going. Goodness knows what people must think. I usually only suffer with my feet and have been checked for other problems/secondary Raynaud's. I understand that is usually unlikely that it is caused by anything other than bad luck. The blood tests will tell you whether you have any auto-immune problems which are causing the Raynaud's but if you have nothing in your medical history and no other symptoms, chances are it's just one of those things. Dressing for the weather, avoiding going from hot to cold extremes and lots of exercise are the best ways to manage it.