I developed Rayauds about a year ago ... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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I developed Rayauds about a year ago but this become much much worse this year, I can't touch anything cold, it's driving me mad! HELP

wendy1066 profile image
4 Replies

I have now developed extremely cold feet [although they aren't white or painful - YET?] and hadn't really conected this with Raynauds as I thought it only effected fingers. I have quite severe arthritis but I can cope with this easier than the Raynauds. I also suffer from under active thyroid and have recenly developed Lichen Sclerosis [extremely painful!] so I seem to be always at the doctors. When I first saw my GP she said there was nothing she could do about the Raynauds but I'd love to hear what anyone else thinks? ...

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wendy1066 profile image
wendy1066
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4 Replies

To be fair the GP is right about Raynaud's - there's no cure. Prevention is the best. Keeping those areas warm. I wear two pairs of socks - as the Raynaud's is more pronounced in my feet. I wear socks 24/7 365 - the only time I don't wear socks is getting in the shower, during the shower, and I dry my feet first and immediately put socks on.

mrsqwerty11 profile image
mrsqwerty11

Your gp is right that there isn't a cure but there is preventative measures, ie, I take 30mg of nifephdine slow release tabs per day and I cannot fault these tabs, they deffo keep my raynauds under control. I would as your gp for some meds to help, although some ppl are not good on this meds, it's trial and error, hope you get sorted soon

Noddy32 profile image
Noddy32

PART 1 - meds

nifephdine is great, but it my case it causes increased blood flow resulting in an instant headache, although I have not tried the slow release ones

An alternative is natural ginger (I mix mine with breakfast cereal, after cutting into small pieces, and this way YOU can test & control the dose that works best for you)

In the past I have used ginger tablets, but I find only the best quality works (and now I am unable to obtain the brand that best worked for me, as discontinued)

An alternative is Ginkgo Biloba tablets, which also aids circulation

PART 2 - Condition name

I have many of the symptoms of Raynaulds, but my Doctor will not accept I have it

because my hands/feet do not change colour !!! but my feet are cold from Oct to Apr !

So I would not worry too much about having a doctor decided NAME for your condition

Instead just focus on each symptom, try different remedies, and figure out what works for YOU, as YOU are unique and are in ultimate control of YOUR body

PART 3 - Cold feet

Yes, 2 pairs of thin socks are better than one thick pair

Go for natural fibres

Try "in shoe insulation" the silver foil ones, but silver side down (or too hot!)

Try socks with silver thread woven into them

Try socks of "tights type material" between the 2 pairs of socks as an insulator

Warm socks on radiator, via hand blower/dryer, via hair dryer etc - where/when you are able to

Change socks/footwear often to avoid other foot problems

graygirl1 profile image
graygirl1

Raynaud's and related conditions can be very troublesome, hard to treat and to manage. I am lucky to have a gp who listens and seems to know a lot about this problem. I take nefedipine which helps a bit. There is no cure but your condition can be made a bit more comfortable with medication.

If you are under the care of a Rheumatologist let he/she know about your increasingly cold hands and feet. If you are not, maybe you could ask your gp to refer you to the arthritis clinic again to have some tests done if necessary.

Make sure to wrap up well and make yourself as warm as possible. I suffer with cold hands

and feet more than I need to because I can't bear to wear too much clothes indoors. I don't like to wear socks, stockings, long pyjamas or warm nighties. I alway wear just shorts and t-shirts indoors no matter how cold it is. I am a little unusual though. I can be both hot and cold at the same time. I suffer with excess sweating as well and often don't know what to do for the best. I have tablets to warm me up and tablets to cool me down so can you imagine my delemma? My friends think it's hilarious and to be honest I do laugh at myself. Laughter helps and I laugh a lot.

Anyway, best of luck to you for a warmer future.

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