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Raynaud's disease-just been diagnosed - any advice!!!

(33 Posts)
Joycey29 Tue 12-Feb-13 18:33:30

So as it says, saw GP today after several other spots and apparently it's Raynaud's disease.
Just want to know anything to help.
Thanks!

Teahouse Tue 12-Feb-13 18:36:13

Get really good warm lined gloves, and wear ear muffs too when you are out.
Avoid getting things from the freezer unless you are quick...hurts like he'll otherwise. Avoid having wet and damp hands outside.
Buy something really to wear indoors.
All just normal things if you get cold really..oh, wear toe nail varnish all the time as blue toe nails are awful looking ;0)

Joycey29 Tue 12-Feb-13 19:28:45

Thanks tea house - been put on Adalat to see if it helps. Embarrassed myself last week by dropping a cup of tea in public because my fingers wouldn't work! hmm

joycey, dh and I wore joking at the weekend that I could never be a conductor as I would keep accidentally flinging the baton into the orchestra. Tis one of the joys of raynauds.

Dont just keep your hands and feet warm but concentrate on ankles and wrists too. Prewarm gloves on radiators. I wear two pairs, one pair of leather gloves and then sheepskin mittens over the top. I use these between the two. At the beginning of winter they seem to be half price.

NicholasTeakozy Tue 12-Feb-13 19:41:06

Mittens are good. I recommend windproof ones used by golfers, they have pockets for those chemical hand warmers.

Woollen socks keep my feet warm in winter. I even wear socks in bed because turning over can cause my feet to cramp when they touch a cold sheet then that wakes me up.

MirandaWest Tue 12-Feb-13 19:43:37

Even when you think "oh it's not that cold today" still put your gloves on or you will get white or blue fingers and want to cry with pain <am voice of bitter experience>

Moringa Tue 12-Feb-13 19:45:23

Hello, can i just ask - how did you get a proper diagnosis? And could I ask your opinions about me? I am generally extremely cold (but am hypothyroid and I wonder if that contributes to general coldness). Right now, I'm lying typing on my bed with the central heating on plus an extra heater in my room, wearing ugg boots & lovely mohair socks, thermal leggins & velour tracky bottoms, baggy cashmere jumper over longsleeved T, and vest, and DH's massive duvet jacket AND a shawl over my legs... (I've been in this attractive combo all day as I didn't need to leave the house!)... I am almost comfortable but my feet are still freezing cold. Usually i really notice how white/blue my feet/hands are when i get into a hot bath as my toes (& patches on the soles of my feet) and sometimes my fingers (with a visible line) remain bright yellow-white next to my puce legs/arms. My nose is usually freezing too... So is that enough for a diagnosis of Raynaud's or do you have to have the feeling of not being able to move hands well? I have noticed that I can't do things that require dexterity (play piano/violin, write by pen) well if my hands are cold and that i am much more fluent when warm. But is that just what everybody feels including the non-Raynauds folk? I'd appreciate any hints. Also, are there any good reasons for getting a diagnosis - ie can they treat it much, or is it just a case of trying to keep warm? Thanks!

VerySmallSqueak Tue 12-Feb-13 19:46:42

Exactly what Miranda says - always get the gloves on before there's any hint of getting cold hands.

HazeltheMcWitch Tue 12-Feb-13 19:50:10

I pretty much wear boots between September and April, as I can wear socks with them. Shoes/tights are worthless to me i winter (unless said tights are layered under my boots and socks). I also wear 2 pairs of socks for the same duration. Well, might play it by ear in March... And I try not to stand still in the cold. This means that I look slightly odd waiting for kids in playground, as I walk in circles, but a) I avoid those school convos I always read about here, and b) my toes don't hurt too much.

I have a pair of gloves - cheap but good ski gloves from Aldi or Lidl - which live on the freezer. I really don't go into the freezer without my gloves. And I have spare gloves in the car. I basically never go anywhere without glove options.

And yes to socks in bed (again, 2 pairs), with an extra blanket over the end of my side of the bed.

Battery powered gloves and insoles grin . Can't link as on phone but dh got mine from maplins. Best pressie ever. The gloves are nice warm ones anyway but when it gets really cold you can heat them up.

I find tights under trousers good as well as multiple pairs of socks. You have to have the right combination as it is best to give your feet room to move about as the friction keeps them warm. If the socks are too tight I find my toes go white quicker

I got diagnosed when I was about 13. I had my arm in plaster and caused panic at the check up when they saw my blue fingers- until I pointed out that this was normal for megrin

mercibucket Tue 12-Feb-13 20:03:19

Moringa - is your hypothyroidism under control? Tsh under 1? T4 high in range? T3 tested? If not, that could be the cause of your raynauds. Also worth checking ferritin - that makes me feel cold when it gets low.
I seemed to have reynauds before treated for hypo, but it is a lot better now. Still feel the cold but tend not to get the blue/white finger thing etc
And op, did you have thyroid tests run before diagnosis?

mercibucket Tue 12-Feb-13 20:03:19

Moringa - is your hypothyroidism under control? Tsh under 1? T4 high in range? T3 tested? If not, that could be the cause of your raynauds. Also worth checking ferritin - that makes me feel cold when it gets low.
I seemed to have reynauds before treated for hypo, but it is a lot better now. Still feel the cold but tend not to get the blue/white finger thing etc
And op, did you have thyroid tests run before diagnosis?

Moringa Tue 12-Feb-13 20:22:52

Merci. mercibucket... Hmmm. WELL, the thyroid thing is not really under control. I reckon I've been hypo for years actually (I'm 38 now), but was only dx in November - unbelievably it was only with my prodding that they tested my thyroid after TTC for about 3 years and having had one MC at about 8 weeks in Spring 2012. So... i started on 50mg (my tsh was about 4.75 but as I was TTC they luckily put me on meds - i have heard/read of other people being told they were 'normal' at that level. My T4 was 15.4 and they didn't test t3). I felt a lot better after a few weeks - generally quite warm (and that was over xmas time so cold time of yr). Somehow, in between having all our family at our house for xmas, we managed to get preg on xmas morning!!! I'm quite sure it was due to my tsh coming down. I got it re-tested on the 7th Jan, the same time I got a +ve preg test. It was TSH=2.1 (& didn't test T4 or t3 as 'within normal range'). My doc said she'd like it below 2, ideally around 1, but DIDN'T raise my dose, about which i am now flabbergasted (that's the polite f-word for it)... Anyway, surprise surprise, it had gone back up to TSH=5.3 by week 8, but by then the baby had already stopped growing. I had a scan (which I paid for privately because they wouldn't) at 7w 2d but it showed no HB and only about 6w 4d. They repeated it a week later, and it hadn't shown any growth. So not I'm 9 weeks, but just have a 6 week dead blip in there waiting to come out. My hcg levels are still rising (slowly) and were 59,000 yesterday. I'm so unbelievably "flabbergasted"-off and probably still in some kind of denial because there's no blood yet and it seems a bit unreal. I'll be going into Exeter's early preg place for a scan tomorrow. Since all this has happened I've been reading up on thyroid & MC etc... Sorry, I have sort of hijacked this thread with a different subject. I only just joined today so I'm not 100% sure how to move this to somewhere more thyroid/MC related. But, maybe it will be useful for some other Raynaud's people - in case their thyroids are also playing up. I really think the NHS doesn't do thyroid tests unless it absolutely has to.... and I suspect a lot of women are really hypo.
Merci again. xx

mercibucket Tue 12-Feb-13 20:54:35

I'm really sorry to hear about your mc and it is just crap that they didn't raise your dose. If you start a new post in health, there are lots of us on here who can offer more advice and support. I agree, in the uk we have a terrible approach to thyroid testing, so where in the usa they would treat once tsh is over 3, here you get told you have x, y or z, but not treated for the underlying cause - thyroid failure. So for those with reynauds, it is worth double checking what level the tsh was, as you could be being fobbed off, esp if its just a GP level diagnosis.

ILoveOnionRings Tue 12-Feb-13 22:29:32

I would go for thermal layers too. I was advised a few years ago that you should start keep warm all over and wear plenty of layers. Todays example of layering is: all in one shapewear vest body thing, themal long sleeve tee, M & S Themal leggings, tights, socks, boots, dress/tunic thing, long cardigan and scarf. Then when outside coat, hat and gloves.

Agree with other posters too about not getting to the cold stage - good luck

Snowstorm Tue 12-Feb-13 22:36:54

Always put your warmed gloves on before you leave the house and try not to take them off when you out for any reason, as once your hands are cold there's no going back until you are inside again.

Those cheap hand warmers that you click the metal bit and they go solid, are lovely too.

I have padded wellies now, which are huge and ugly but lovely and warm in the snow and cold.

I go fully dressed to the supermarket as well, regardless of season, and always wear gloves there too ... I find the fridge and freezer section really cold.

HazeltheMcWitch Tue 12-Feb-13 23:59:07

Ooh, wrist warmers also good. Layer them over gloves. I wear them indoors very often sometimes. They stop the cold getting in between jumper and glove.

Snowstorm Wed 13-Feb-13 10:16:58

Plan to add an extra 5 minutes to the beginning or end of any social function so that you can peel off and store the extra layers you are wearing, while everyone else is just taking off or putting on the one coat in nanoseconds grin.

Joycey29 Wed 13-Feb-13 13:16:30

Thanks guys - loads if ideas that will help, I m sure!
I teach games outside for several hours a week and am liking the idea if wrist warmers!
Have been prescribed medication- any views on that??

NigelMolesworth Wed 13-Feb-13 13:26:59

Goodness me, I'm glad I've just stumbled across this thread.

I'm quite often cold handed and my feet are always freezing and have noticed over this winter that one or two of my fingers keep going completely white, normally when I'm driving the car (wearing gloves though as steering wheel is cold). It's normally just one or two joints of a couple of fingers, which feel very numb but come back to normal after 20mins or so.

But I have been to the shops today and by the time I got there one of my fingers was completely white and hurt like mad. It's taken at least an hour for it to come back this time. While I was in M&S, the lady on the till commented (it was really obvious) and the woman in the queue behind said to me, "I think you've got Raynauds, I think you should go to the GP". She sounded v authoritative so now I am wondering whether I should go to the GP??

Sorry for the hijack Joycey29 but am just wondering whether there's any point to trying to get in to see the GP or whether I should just take sensible precautions?!!

joycey, its worth giving the medication a go. sadly it doesnt suit me, but it may well be fine for you.

those reusable handwarmers I find are useless, they dont go very warm and they go cold again within minutes. Its why I end up with the disposable ones.

NicholasTeakozy Wed 13-Feb-13 13:45:53

Yes Nigel, it's worth getting a diagnosis. It does weird people out when they spot that your fingers are white. grin I explain what it is and what causes it and that when it happens I have to be careful handling certain objects as I've cut my fingers on inoccuous things due to having no feeling in them.

NigelMolesworth Wed 13-Feb-13 13:52:44

Thanks Nicholas. To be honest, this time it weirded me out!! It still hurts now a bit and that's 3 hours later so I think perhaps I'd better try to get an appointment. I think it was the authoritative lady who insisted I should see the GP that made me worry on the way home that perhaps it was one of those things that might indicate another underlying issue iyswim. Thinking about it though, perhaps she's actually a GP...!

Snowstorm Wed 13-Feb-13 13:54:04

It's a really odd feeling when your fingers go 'dead' like that isn't it?! I went to the GP with my occasionally white/dead fingers and subsequently discovered that my thyroid is sluggish. Am on tablets daily now, for life I think, and it's almost completely cured my Raynauds ... although I still feel the cold more than most and I do still get days when my finger bones (in particular) seem to ache with the cold.

NigelMolesworth Wed 13-Feb-13 14:12:31

Interesting that the tablets have sorted it. It must be a pain having to take the tablets every day but on the flip side, no more numb fingers...

Incidentally, this is what I love about MN - sensible advice, so thank you. Maybe I will be able to work out whether the GP is an MNer: "I've got this problem with my fingers and Mumsnet says....!"

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