Raynaud's Awareness

[squidette]

February is Raynaud's Awareness Month. I have had Raynaud's since i was about 14 and it took me nearly 15 years of pain, distress and the unknown, plus numerous specialists, xrays, creams, hydrocortisone injections, and sheer dread of the colder months (September to May) before i actually had a name for what i have.

I remember when i used to go into town with my friends as a teenager having to make numerous trips to the loo to sink my hands into hot water to try to warm them up (gloves were uncool) and during some severe attacks that seemed to be brought on by the slightest cold, such as just taking the bins out without gloves on, my fingers would numb and take several hours to 'defrost' but the next week they would suffer repeated attacks, swelling, the pain of a brushing a knuckle on a worktop which 'should' not even raise an eyebrow felt as though someone had taken a hammer to my hand.

It was such a relief to find out what it was, and to know that the cold, to me, can be really debilitating. I also know that its up to me to take preventative action as best i can - i wear gloves indoors, when ever i go out and wiggle and wriggle my hands and arms alot. I also quit smoking nearly two years ago soon after i found out about Raynauds and i hope that it will help my circulation. This winter its not been too bad so far, but i can feel it getting worse as the frosts come and its very cold in the mornings.

I used to joke that i had 'cold hands, warm heart', but for a long time, it wasnt really funny...

I'd be glad to hear of any tips from other sufferers during this veeerrrry chilly month of February! My children know they dont get to go out much to the park at this time of the year or on long winter walks, which we are all a bit sad about, and i would like to have some portable heat in my pockets!

Raynaud's Awareness Month

[itsmeNDP]

I have a funny circulatory problem, currently undiagnosed. Reynauds was suggested but was dismissed.

[katzg]

i don't know anything about this condition but have you tried the little hand held heater thingys that hikers use, its like a gell pack with a metal disc in the corner which you flick to activate and the gell changes to a solid kicking out heat, this is reversible so they are reusable. i think i've even seen gloves with pockets to house these heaters.

[CountessDracula]

Oh my mum has this but v mildly I think

[Piffle]

I have Raynauds, it has improved as I have got older, probably with central heating, using car rather than walking outside in cold weather and not horse riding anymore.

I used to also suffer horrific chilblains as a younger sort, but now am very keen slipper wearer.

My father had it as well.

I quit smoking 7 yrs ago and am sure that has helped, I rarely get attacks now where all my fingers my go really bad, but still get white numb fingers and loss of sensation in one or two even on "warm" days.

[katzg]

these hand heaters

[mythumbelinas]

itsmeNDP, i had the exact same thing as you.
My old gp told me i had Raynauds Syndrome many years ago, but last year i asked my current gp about it again. She sent me off for tests and now i don't have it, but i do have a funny circulatory condition .. no name

[cremolafoam]

dh has this , but finds that draughts are THE worst thing for him. he wears thermal gloves nearly all the time and is always yelling 'shut the door'.
i have carpal tunnel syndrome so some times the pair of us just sit there on our hands waiting for them to 'come back'

[squidette]

someone suggested i but foil wrapped baked potatoes in my pockets, which i actually think is a great idea - we could have them for lunch when we got back from wherever we had been!

Ah, NDP, the not-knowing is tough, i got so frustrated, especially when i was younger and it was passed off by doctors for a long time as me 'over-reacting and making mountains out of molehills'.

Thanks for the link - i think i do have some of these somewhere, but i think it was a bit of a faff re-energising them several times a day. Maybe i will give them another go.

Piffle, i too had chillblains, but now just lumpy knuckles... I am glad it has eased for you. Circumstances do make a difference - i love to garden and am a new allotment tenant (vvv excited) but am reluctant to spend too much time there at the moment. Its not worth it at the moment. Which is sad too as there have been some lovely and clear days at the weekend recently. Which unfortunately means colder.

I know what you mean about the warm days - i still get numbness in summer if i am outdoors in the evenings.

[mythumbelinas]

In cold weather my hands and feet go stone cold and takes ages to warm up, but if the weather is very warm, hands and feet often swell and turn red .. it's uncomfortable.

[itsmeNDP]

when the blood flow returns it is agony

[squidette]

NDP, to me it sounds like Raynauds. I diagnosed myself btw.... After all those years faffing about with different medical opinions, i did some of my own research.

One of the symptoms is when they get cold, they go white/grey and numb, then mine go purpley/blue and tingles and the pain is quite nasty. Then they return to normal colour, but they ache and are very sensitive to further attacks/slightest bump or know for a few days. Thus in this weather it seems to be a constant cycle.

mythumbelina, do yours go numb/change colour as well as getting very cold?

[mythumbelinas]

squidette, that's why i asked my gp, as they do go purple, and numb at times, but i don't get the white/grey numbeness and it's not really painful, but can be tingly.
Also, Raynauds is about the cold, but i react strongly to the warmth aswell

[princessmel]

I have this but get it in my breasts mainly.

Its really painfull and has caused me to faint a few times.

It was worse when I was pregnant both times. I couldn't even go outside without it starting and I would just have to wait for it to pass. There was nothing I could do to stop it. Rubbing helps a bit. Hairdryers help but thats not practical out and about . It feels like beeing stabbed in the breast with a knife.

Touch wood I haven't had it as bad since having my dd.

I've had it from age 15 and first noticed it when I worked in waitrose and had to stack oxo cubes above the freezers. It was so painfull and embarrasing. I got moved to a warmer isle in the end.

It runs in the female side of my family. Mum and Nan had it worse in their hands and only their breasts during pregnancy.

[Piffle]

mine go yellowy white, sometimes only half the length of one finger it looks bizarre, DP thinks I'm a freak.
I usually do resort to hot water just for speed, but crikey it kills, feeling comes back in varyign degrees or purple then red, then pink
But I always have cold hands and feet, even when I don't feel at all cold.
Which is why my electric blanket and I are close friends

[itsmeNDP]

my toes are the worst for it.

[BettySpaghetti]

I have Reynaulds (at least thats what the GP said, I didn't have tests or anything as he basically said sounds like it is that but theres no treament etc).

Anyway, I get it in my fingers, not all of them just certain ones. When they get realy cold the affected fingers go pure white, it loks really odd as the others remain "normal". They tend to be like that for 5 -20mins and then the sensation starts to come back.

All I find that helps is wearing gloves outdoors as soon as the weather is slightly cold. I have a tight fitting pair of leather gloves that seem to work well especially as I can drive in them too (woollen gloves are too slippy for driving).

[BecauseImWorthIt]

I get this too - can sometimes get it even when I get out of the shower - going from hot to cool.

I hate shopping in the chiller aisles at the supermarket because that can set it off as well, and then spend the rest of the time in the shop suffering from it.

There are supposed to be some remedies that can help, although it didn't make any difference for me - Gingko Biloba, Evening Primrose Oil are two I think.

My mum had it, but she did 'grow out' of it apparently.

[IntergalacticWalrus]

I have a suspicion that DS2 has this. (He's 5 months) He has a congential deformity of his right hand, and it seems thet his circulation in this hand in particular is really poor. Hi hands go white when it's really cold (like today)

I actually have noticed that when we get back into the warmth, he cries more than normal

Is there a lot that can be done for it?

[mythumbelinas]

Oh, your poor little boy, but afaik, there is no cure

[CMac]

I have raynaulds, though not as severely as described in the op. The way my doctor described it was that as soon as you get slightly cold the nerves overreact and shut down causing the numbness. Think this is why it's helpful to start wearing gloves before you go out rather than waiting till your hands start to feel cold. Sometimes if i've left my gloves in the car by the time I get there it's too late...

I think mine is getting better as I get older but so far the only 'cure' i've found is pregnancy - I was pregnant over 2 winters and didn't get it once either time - back to normal the next year unfortunately