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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.

IceCubes Sun 28-Apr-13 09:51:52

I have a family member with very severe Raynauds and they swear by proper sheep skin boots, (think Ugg boots) lots of thin layers and lots of cups of tea!

OMGG Sun 28-Apr-13 09:39:25

Yes the tiredness is awful...I'm okay if i keep going, but within 5 mins of sitting down after work I literally crash..just have to sleep sad

Earthworms Fri 26-Apr-13 12:56:10

My question is -
Has anyone else noticed a correlation between 'attacks' and energy levels.

I seem to have had debilitating tiredness all winter, all blood tests came back ok. Now my attacks of cold finger have stopped due to warmer weather, my energy levels are great again.

Earthworms Fri 26-Apr-13 12:53:02


Mine affects fingers, nose, toes, soles of feet ( never walk barefoot on hard floors) and ears.

So, no not just hands.

OMGG Fri 26-Apr-13 12:44:35

I use Nifedipine for mine...pretty good, but I've been told that during the winter months wear silk gloves and socks in bed....apparently it's the best material for circulation and keeping in the warmth without being too bulky, also light enough to wear under other gloves and socks.

TwllBach Thu 25-Apr-13 13:47:16

Does it always have to be fingers? My toes go yellow, even if I've got tights on, and if they go yellow and then I put tights or socks on,it gets even worse. I always assumed it was just bad circulation.

NigelMolesworth Thu 25-Apr-13 13:40:48

I just wanted to add a thank you to NicholasTeakozy and Snowstorm who both in the posts above convinced me to go to the GP re the white fingers. The GP took some bloods, got some odd results back and is now referring me to a consultant and for an ultrasound. So thank you - I was all for ignoring it!

Snowstorm Wed 13-Feb-13 16:38:28

Well Raynauds for me meant having blood tests which showed that I had a couple of auto-immune issues, the thyroid thing being one of them and another one (which may be lurking nastily in my future but which isn't present yet), so now I'd always recommend someone saw their GP about it.

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....!"

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 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...!

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.

OhYouBadBadKitten Wed 13-Feb-13 13:45:18

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.

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?!!

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??

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.

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 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.

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

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.

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 20:03:19

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?

spiffysquiffyspiggy Tue 12-Feb-13 19:53:35

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

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.

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