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Have you got raynaud's?

(61 Posts)
NaturalBaby Wed 13-Nov-13 21:30:09

I had a bad year last year due to being outdoors a lot more and my hands were a painful mess by December. They're just starting to really suffer now so am wondering what other's are doing to look after their hands.

I also get chilblains all over my fingers and very dry skin that cracks. My wedding rings aren't going to see the light of day till April at this rate!

Talkinpeace Wed 13-Nov-13 23:11:21

Its a bugger isn't it!

Gloves
more gloves
baggy jumpers
more gloves

yoga
more yoga

but mainly : try to keep the circulation as stable as you can and work out the triggers

Pandsbear Thu 14-Nov-13 16:22:23

I do. It is miserable. Yes gloves gloves gloves and layers of wool jumpers to maintain your circulation. Try not to let your hands/toes/nose/ears go white & cold in the first place. (I know that is incredibly hard, as that sometimes happens to me when I am only getting things out of the fridge never mind being outdoors.) Moving around seems to be better than sitting at the laptop (ha!).

KringleCandleLover Thu 14-Nov-13 16:47:08

I use Heatbands... A bit like a Tenalady that is disposable and self sticks to your wrists. They sell them on heatbands.co.uk.

They work for me.

deepfriedsage Thu 14-Nov-13 16:47:52

The more I move my fingers the colder they get. Do you only get cold hands? My feet freeze too.

cardamomginger Thu 14-Nov-13 16:47:55

yes sad . it's crap.

Lagoonablue Thu 14-Nov-13 16:48:19

Yes just started to get it. It is horrible. I have no solution......guess I will need sheepskin mits this winter.

Artandco Thu 14-Nov-13 16:48:46

Sheepskin in boots

Ski thermals

Merino scarf and gloves and hat

eurochick Thu 14-Nov-13 16:49:24

Gloves
Hand warmers
Warm boots
Hat
Big wooly snood/scarf that you can pull up over your face
When outside keep moving (e.g. I prefer to walk for 20 mins rather than wait for the bus)

mercibucket Thu 14-Nov-13 16:54:47

lagoonablue - did you get your thyroid tested? i started with reynauds but it was caused by low thyroid

MirandaWest Thu 14-Nov-13 16:56:25

I am finding so far this year that putting gloves on before I need to and trying to go running two or three times a year is definitely helping. It's my ring fingers that sometimes just go white even when the rest are normal hmm.

UnderCoverChristmasElf Thu 14-Nov-13 17:18:44

My Dh suffers
What is the yoga that can be done?

Weegiemum Thu 14-Nov-13 17:20:20

I use silk liners, then thin wool gloves then massive gloves.

I avoid heat packs, I've had chilblains and a few burns from them.

My Raynauds is really bad with damp cold - gloves are my friends.

Talkinpeace Thu 14-Nov-13 17:53:12

Yoga helps maintain circulation in the extremities and reduces the long term damage of the capillaries emptying themselves all the time

NaturalBaby Thu 14-Nov-13 19:00:56

I started on nifedipine a few weeks ago and I almost feel like it's worse now! I have several pairs of gloves but it's really hard doing fiddly jobs out and about with kids while wearing 2 pairs of gloves. We've just moved into a very cold house and my hands are getting cold and numb in my own home now sad.

I like the sound of the heatbands.

Lagoonablue Thu 14-Nov-13 19:24:54

Thanks Merci. I haven't had thyroid tested in a while. May need a visit to GP then.......

Triplepoints Thu 14-Nov-13 19:49:13

I thought I was the only one!!! I mean I've heard of Reynaud's but never met anyone else with it.

I had to pay a cheque in the other day and my fingers had all gone white because I was wearing my all year round gloves instead of my winter gloves so I decided to queue up rather than use the self-service. Of course the annoying queue busting woman pounced on me when I said I was paying in a cheque and said she could do it for me then led me back to the self-service machines like I was too stupid to use them myself. I stormed out in a huff. It was a bit OTT but all I wanted to do was stand there long enough for the circulation to return. I have promised myself that next time I shall explain in a dignified manner.

Talkinpeace Thu 14-Nov-13 20:08:31

Triple
Make people shake hands with you ..... that cures them of thinking its nothing.

Statistically around 1/20 of women over 30 have it.
there is yellow raynauds (custard finger as my lovely children call it)
and purple : where you look bruised
and once you start to look you'll see lots and lots of people with yellow hands

I had GREAT fun once at a science event where they were playing with thermal cameras. I put my hand in front of it. I had no fingers. The poor little med student nearly fainted grin

Helspopje Thu 14-Nov-13 20:11:43

yes. it is rubbish.
but not as rubbish as raynauds of the nipples
sad

Talkinpeace Thu 14-Nov-13 20:18:46

yikes .... would deep heat or tiger balm help that as they both open capillaries?

Helspopje Thu 14-Nov-13 20:42:44

only thing that helps is keeping warm - ie flash pad back on/bra up/thick tshirt post feed, warm shower - or nifedipine.

the pain.... shudder

Triplepoints Thu 14-Nov-13 20:43:49

I really want to try that thing with the thermal cameras!
(Don't even want to think about raynauds of the nipples)

deepfriedsage Thu 14-Nov-13 20:59:18

Raynards of the nipples sounds horrific.

I have strange veins/capillaries as they over expand and over tighten. I was speaking to a Dr about it he said they dont understand the process properly yet.

Taranta Thu 14-Nov-13 21:03:30

Oh god, that's brought back the memory of having reynaud's of the nipples, vasospasm I think they called it, when I was breastfeeding DS [shudder]...

Helspopje Thu 14-Nov-13 21:07:05

I am slightly evangelical to let all know that vasospasm of nipple exists. I honestly thought I was going mental. The pain was extreme and enough to chuck BF a thousand times over. I must've been the only person in britain having super hot showers last summer.

It exists people. And is much more prevalent in those with Raynauds of the peripheries, or chilblains, rheumatologial problems or what I call 'hockey legs'.

kellymom.com/bf/concerns/mother/nipple-blanching/

PottyLotty Thu 14-Nov-13 21:16:57

I wear Silk/thermal underwear. (patra is a good website for these).
Insoles in my shoes with heat reflectors on the bottom (think they were from amazon or betterwear they look like normal insoles but have silver foil type coating).
Hand warmers in my pockets (not directly on my hands because they increase the pain).
Mittens rather than gloves generally unless im driving when leather lined winter driving gloves.
Yoga is good and swimming (in a warm pool obviously, try a health spa type place as they usually do have warm pools)

The best one suggested by my GP was to have a tipple (whiskey/sherry/port) before you go to bed, it works everytime but it makes my other conditions worse. I have to choose between warm toes or painful joints sad

Still looking for something to cover my nose though, they always look at you suspiciously if you go into a shop in a balaclava so I do need to think of something else wink

PottyLotty Thu 14-Nov-13 21:17:39

For dry skin, try crabtree and evelyn hand therapy. It works brilliantly on my hands grin

tilbatilba Thu 14-Nov-13 21:26:52

Silk glove inners are great, possum fur gloves and this year I bought heated gloves for my daughter. They charge in the wall and then stay warm for 6 hours plus. She used them mainly for skiing, hiking and being outdoors - I think as long as your hands are an ok temp when you put them in there is no risk of chilblains etc.

NaturalBaby Thu 14-Nov-13 22:43:45

It's the chilblains that are getting to me, I can't believe that's what it is but I've been getting them for years without any idea of what they are! Always on the same spot on the same finger, then they start spreading across my joints.
I've got cetraben for my dry skin which is working quite well - I just need it next to every sink!

Pandsbear Fri 15-Nov-13 12:27:59

Despite my advice yesterday I can't feel my toes today (and I am in the house with thermal tights and sheepskin slippers on). I hate it. Nose is painful too waaaaah.

OhYouBadBadKaleds Sun 17-Nov-13 22:37:22

I think the key (which can be impossible to achieve) is not to let them get cold in the first place. One they are cold all the gloves in the world won't help.
Interestingly a few weeks ago I had a shot of steroids in the bum for my arthritis. Raynauds was much better for a while. Back to normal now.

NaturalBaby Mon 18-Nov-13 13:17:13

That's half the challenge! I'm running late quite a lot so end up dashing out the house without gloves on, so am really trying to get organised so I get both pairs on before I need to leave.

Has anyone found any supplements that help? I used to take WellWoman but now just take a multivitamin and am wondering if it's worse because I'm not taking any oil supplements. I've just bought some evening primrose to see if that helps. I'm not liking the side effects of Nifedipine at all and not sure if it's making much difference.

Talkinpeace Mon 18-Nov-13 15:16:20

I try to avoid all pills
BUT
to get a load of Nectar points I bought a thermal long sleeve top in Sainsburys the other day. It looks like a normal round neck top, but the sleeves come down over the heels of my hands and its wonderful it keeps the circulation going into my hands really well.

Naturalbaby
Yup : Gloves. I have a nice pair of fleece lined lather driving gloves I got from John Lewis. I never EVER leave the house without them.
Even in August I'll drive with the roof down and a strappy top and gloves. Get v odd looks - but that may have nothing to do with the gloves wink

Talkinpeace Mon 18-Nov-13 15:16:41

d'oh Leather not lather ...

LightastheBreeze Mon 18-Nov-13 15:37:21

I used to have it in my 20s and 30s in my fingers quite badly but when I got to about my mid 40s it started getting less. I'm now in my mid 50s and don't really get it at all though obviously i still wear gloves if its cold.
Its like I have grown out of it.

beachedwhalesarecool Mon 18-Nov-13 17:20:57

I am watching with interest as my hands are in agony with awful splitting chilblains and dryness, not helped by the fact that I wash my hands -compulsively- frequently because I'm so afraid of getting Norovirus! My joints are especially tender if I knock them even slightly and the pain wakes me up in the night. I also have arthritis but this is controlled by medication at the moment.
Last year I had a hand balm called O'Keefe's Working Hands. You slather it on at night and it heals the skin. I can thoroughly recommend it (must look mine out and start using it again)

www.amazon.co.uk/OKeeffes-Working-Hands-Hand-Cream/dp/B005PA0UV4/ref=sr_1_1?ie=UTF8&qid=1384795125&sr=8-1&keywords=o%27keeffe%27s+working+hands

I find I am better if I make sure my core temperature stays warm, so I always wear vests, thermals etc, plus thermal socks.

NaturalBaby Mon 18-Nov-13 22:06:44

Ooo I got that thermal vest from sainsbury in their last clothing sale! Something that doesn't help is I'm really tall so it's difficult to get sleeves to cover my wrists or gloves to fit very long fingers without being massive.

I have Cetrabem cream now as last year as I had raw, split skin on pretty much every single joint across all my fingers and that healed it in a couple of days. I thought I had arthritis at first because of the red, swollen, stiff joints.

It was only last year that it's become such a big issue, I've got through my 20's without it being a problem but last year was unbearable because I was outdoors so much.

Talkinpeace Mon 18-Nov-13 22:19:22

Naturalbaby
Have a look see if you can find anything here
www.longtallsally.com/c/tall/sale-clearance

I was recommended Gincko (sp?) as a supplement, with the added benefit of making you more brainy apparently.

I bought a bottle but it didn't seem to make much difference (to feet, hands or brain), but maybe I didn't give it long enough. I dropped it as I couldn't really afford it.

My feet are my worst part for whiteness / chillblains etc., but my hands go an awful blue colour, I look like I'm dead!

feetheart Thu 21-Nov-13 09:36:51

NaturalBaby - the Sainsburys soft touch long-sleeved t-shirts are really long in the arm and body this year - first t-shirt for ages that doesn't finish half-way up my gibbon-length arms smile And they wash well and they are only £8 - I currently have 3 but will be getting more if I find them.

A really attractive body warmer has made a lot of difference to keeping me warm and I'm just trying out these. Ugly as sin but they fit under my thick furry gloves however I am reserving judgement as the medium feels a bit too tight.

mammywelsh1 Thu 21-Nov-13 10:47:26

Argh it's the baine if my life...gp can give u tablets (as long as ur not pregnant or nursing) but otherwise I'm afraid it's a case of hibernation during the winter xx

NaturalBaby Thu 21-Nov-13 12:30:01

I think sainsburys has a TU sale on so will go looking. I'm on the verge of wearing gloves at home but need to wash my hands a lot with a little one at home.

I did look at Ginko the other week and thought about trying it.

Those heat therapy gloves look good.

Lonecatwithkitten Thu 21-Nov-13 13:11:43

I work in health care so it is a nightmare. I only wash my hands at work when grossly contaminated and every 6 th patient. The other 5 times is gel (WHO says only works 5 times then wash). I dry meticulously getting right down between my fingers, I never ever use iodine scrub and Liz Earle handcream is my best friend. Outside I wear fingerless gloves with examination gloves over the top.
My nose is the very worst bit though since my other conditions mean I have stopped making mucus so no more runny nose giving me a chapped tip.
Physiologically alcohol is the worst thing as yes initially you get vasodilation letting blood flow, but the reflex vasoconstriction, but get after the alcohol has gone will be worse making the Reynauds worse. I rarely drink in the winter as the next days reflex vasoconstriction is so awful my fingers were barely working which when you do surgery is not goodangry. So only alcohol if no surgery the next day.

mammywelsh my GP did say there was a drug you could take to help, but she said thought the side effects would probably outweigh the benefits - wonder if it's the same thing?

Had to give up my classical guitar lessons last year sad Was a 3 mile cycle ride and in winter, by the time I got to his house, my hands couldn't do a thing!

OhYouBadBadKaleds Thu 21-Nov-13 15:02:32

unfortunately I'm not able to take nifedipine, which is a shame as it did help a little.

Talkinpeace Thu 21-Nov-13 17:46:33

I've never taken anything for it : do not like medication if its avoidable
thermal fingerless gloves are good, especially if only the tips are not there
but mainly you need to keep wrists and ankles warm from the experience of sufferers I've chatted to

NaturalBaby Fri 22-Nov-13 14:42:07

I don't like taking medication either generally so am trying nifedipine at night - I was taking it in the morning but the side effects are really bad till mid morning which doesn't help when your rushing kids to school or going out to exercise at the weekend.

It feels mad wearing fingerless gloves in my own home!

Talkinpeace Fri 22-Nov-13 16:31:53

you don't like taking medication but then name the very strong medication you are taking.
I'm confused.

gormenghast Sat 23-Nov-13 17:33:52

Do any of you also feel very tired and sick with Raynauds?

OhYouBadBadKaleds Sat 23-Nov-13 17:52:08

It's my othèr conditions that make me feel tired and sick! grin

I don't think it's a normal symptom gormen but raynauds can be associated with other conditions.

Talkinpeace Sat 23-Nov-13 21:32:58

not me, but I'm a gym bunny who swims masses

RalphGnu Sun 24-Nov-13 07:41:48

I have vasospasm too - the pain feels like someone is twisting my nipples with a pair of pliers. I've found that since I breastfed DS, I don't get it as badly.

I thought I was the only one!

LegoCaltrops Sun 24-Nov-13 07:56:16

For my hands in winter, I wear some thin gloves, eg magic gloves, them a pair of silk gloves over, then a pair of sheepskin mittens with the woolly fleecy bit still lining the inside. The silk mittens mean you can get your hands in, I tried without but knitted gloves won't go into the sheepskin mittens without the silk IYSWIM.

Feet - buy winter boots a size larger, & layer up your socks.

NaturalBaby Mon 25-Nov-13 20:20:22

I don't like taking medication but my hands were in such a state last year that I am desperate to try something to prevent the months of agony I went through talkinpeace. I can't really manage very well with fingers that are stiff and painful, covered in open wounds from dry skin which is why I'm wondering how other people with the same condition manage.

I'm feeling a bit sick and run down at the moment but think it's because of an infection I've just had, so am thinking about getting a better multivitamin/mineral supplement.

merce Tue 13-May-14 10:05:48

Cranking up an old thread here, but what does everyone do in spring/summer? I feel ridiculous wearing gloves, but if I don't my hands are white and in agony…. Can anyone recommend some lightweight/thin gloves that might do the job without looking too absurd???

fivecupsoftea Tue 13-May-14 14:12:55

I wear some gloves from a tennis shop, they are thin. I feel silly for putting the heating on today.

merce Wed 14-May-14 10:28:13

Thanks for that. I just ordered some from a Raynaud website. Sod the strange looks - rather that than icy hands!

kissmelittleass Wed 14-May-14 11:23:20

Hi I live by the beach and last weekend being nice here I did get some funny double looks with gloves on walking along a beach!!, but hey let them look! I got some lined gloves from sports direct to put inside my thermal gloves for the winter so at the moment I find the lined gloves are fine to be used on their own. The supermarkets I find really bad I feel so cold and after picking up a bag of frozen veg recently with no gloves on I did suffer chillblains and swollen fingers and omg the itch from the chillblains. Did any of you get tested to see if your raynauds was caused by primary or secondary? I asked my GP to do this and it came back primary. I was also referred to a rheumy because my fingers were so swollen she only saw me twice told me to take adalat 2 a day, I have low blood pressure so just took one a day every second day and last winter was the best in a few years although I wasn't outdoors as much I cut back on the walking as my hands were unbearablely painful up until late april last year. Anyone that ever touches my hand tells me how cold they are!

Pandsbear Wed 14-May-14 11:38:18

The thin silk glove liners (mine are from Patra I think) are helpful as they are er...thin. I have two pairs of socks and my sheepskin slippers on today (in house - it's chilly inside).

merce Wed 14-May-14 12:38:08

Thin silk glove liners a good idea. Will have a look around. Agree - so cold inside today, but DH will be v. sniffy if I put the heating on….

NaturalBaby Wed 14-May-14 12:42:25

I got some gloves without the fingertips that are really good and have a pair of thin sports gloves that I use as a layer in colder weather, so good on their own at the moment.

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