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Reynaud's Syndrome anyone ?

(40 Posts)
NomDePlume Thu 25-May-06 09:41:04

It looks like I've developed it in my right foot, am seeing the GP about it (follow up appt today). Does it come in the form of 'attacks' or is it something permanent ?

ghosty Thu 25-May-06 09:42:27

Is that the thing where your foot goes white with cold?

NomDePlume Thu 25-May-06 09:46:15

For me it is just my first 2 toes on my right foot (can be any extremity), but yes, they go bluish/purple, cold and numb or pins and needly. Horrible and at times pretty painful.

I was put on drugs to open my blood vessels by increasing blood flow, which had the amusing side effect of turning me very red (apart from my purple toes !) and the not so amusing side effect of increasing my migraines and giving me a constant low-level headache.

Piffle Thu 25-May-06 09:51:49

I get it fingers and feet, inherited from my father, one of my brothers also gets it. I have become very savvy about what brings it on - I refused drugs due to the side effects - one drug I tried as a teen (I was a competing sportswoman) was pulled from the market for causing liver adn kidney damage so I've never gone on anything since.
It is painful but I use warmth to cure it quickly and carry gloves all the time even in summer.

NomDePlume Thu 25-May-06 09:54:09

It's bloody awful. So when you say 'what brings it on', there are triggers ? Like what ?

NomDePlume Thu 25-May-06 09:55:25

I've tried adding 'warmth' but it does little to help. I can sit in a hot bath for 20 mins and still come out with ice cold toes.

ghosty Thu 25-May-06 09:55:38

I thought that was the name ... wasn't sure if that was how it was spelled.
I have had for as long as I remember. I went to the doctor about it when I was 18 and that was diagnosed but never had any follow ups or drugs for it.
Terrible in the winter ... never had it in the summer. 2 or 3 fingers on each hand and 2 or 3 toes. Sometimes it may be one hand, sometimes both, sometimes just my feet ... Very uncomfortable and then painful when the feeling comes back. I always hated snow and icy weather and as a child couldn't bear to be out in the snow making snowmen or snowballs .... But when I got older I just got used to it. The best way to manage it is to be active and keep the blood flowing - no amount of warm layers and socks and gloves helped if I was just standing or sitting around, I needed to be running! As a result I loved skiing holidays as I got to enjoy the snow without the discomfort of dead fingers because I was moving all the time.
Since I moved to NZ I haven't had it AT ALL ... but then it never freezes in Auckland so obviously that is why.
My mother has it too so it must be hereditary or maybe genetic?

Piffle Thu 25-May-06 09:56:25

For me I've had it all my life - cold obviously, so cold tap running/hosing the garden/washing the car/ sometimes walking through the supermarket.
With my feet I am able to ignore it I have very little sensation in my feet anyway due to horses stamping on them so many time.
The worst bit is when they regain the blood flow
Oh it hurts like hell

NomDePlume Thu 25-May-06 09:57:50

Sorry Ghosty, you're right, I have spelt it wrong. It's Raynaud's.

ghosty Thu 25-May-06 09:58:32

TBH I didn't even know there were drugs for it. I just accepted it as my mother has it too. I still wouldn't take them though ..
I know what you mean re. warm bath ... I remember sitting in a boiling hot bath with my feet on the taps and my toes were still white and numb!

NomDePlume Thu 25-May-06 09:59:53

It really does. I've had this 'attack' for 3 weeks now . Walking/running seems to make it more painful for me, I guess because it's increasing/restoring the blood flow

ghosty Thu 25-May-06 10:00:37

I found that thermal socks were excellent in really cold weather ... like when I had to referee netball matches in January and so wasn't running around so much. Also leather thermal lined gloves ... woolly gloves are useless ...

ghosty Thu 25-May-06 10:01:10

Hmmm ... 3 weeks continuously?

NomDePlume Thu 25-May-06 10:02:01

I don't get it in my fingers (yet), just my toes, but it seems that it can deteriorate (sp) as you get older.

ghosty Thu 25-May-06 10:02:50

NDP ... do you mean that you have had the numbness for 3 solid weeks with no let up?

ghosty Thu 25-May-06 10:03:25

And you have never had it before until now?

NomDePlume Thu 25-May-06 10:03:49

I was given Nifedipine.

NomDePlume Thu 25-May-06 10:04:09

That's right, Ghosty

NomDePlume Thu 25-May-06 10:06:08

Given that I'm not sure how these attacks work, it may just be lots of smaller attacks happening very close together. I seem to get the numbness and coldness for a few hours and then the rush of pain, and back to numbness again. Is 1 attack numbness/coldness then pain ?

Piffle Thu 25-May-06 10:07:08

Thats a long time NDP

ghosty Thu 25-May-06 10:07:28

OK, well I say 'hmmm' because mine isn't or wasn't ever like that. I would get attacks that would last a few hours at the most. In very cold weather I would maybe have it every day for as long as the cold weather lasted depending on what I was doing but it was never ever continuous .... it may start on the way to work, wear off later in the day, come back on the way home, wear off at home later ...
But never ever continuous ... that sounds awful ... I don't know about Piffle but I think this sounds like something else maybe?

foxinsocks Thu 25-May-06 10:08:29

sounds horrible you poor thing

mum in ds's class has it and her hands are almost permanently white/blue. She said she has days when it is particularly bad but it's always noticeable so I hope you're not developing it too badly .

I think your GP should probably be running some tests though just to make sure you haven't got an underlying condition that might be causing it.

ghosty Thu 25-May-06 10:08:38

Is it very cold where you live?

NomDePlume Thu 25-May-06 10:08:57

You're telling me

It started when we moved in here on 28th April (so longer than 3 weeks, in actual fact). I assumed it was something I'd done during moving, maybe knocked my foot or something, but then the oddness and pain spread to my 2 toe too and it went blue, I figured I should prob see a GP at that point !

Piffle Thu 25-May-06 10:09:33

Yes mine were short attacks with no regularity. Get the feeling of it going numb, then the white and blue fingers, then I'd work on them with friction or heat to restore them, maybe 1 hr.
It might not come back for a day a month etc

However Raynauds may come in variety of guises maybe.

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