New Here :)

Ive known for a while i had raynauds but dr didnt diagnose me until earlier this year as i went into hospital for an unrelated reason and they asked if i had it so i told him what they suggested, before that he just said it was chillblains, i saw a consultant in August after a bloods and questions she thinks its secondary raynauds i have and possibly systemic sclerosis. After the initial relief of finally being diagnosed im feeling a little down, more because of the possible sclerosis, which is seeming more possible as time goes on, ive had very bad heartburn/acid for year or so, shiny dry, skin and swollen fingers and now am getting little red spots on my hands both which are symptoms, im back again to see the consultant in a couple of weeks and going to mention these new things. I was just wondering what others peoples experiences are? i feel like this is a hidden illness most people just seem to think we get colder than they are even my dr wasnt sure what tablets to prescribe and had to look it up. Anyone have a tips for keeping warm?

6 Replies

  • Good morning and welcome to the forum.

    You are right when you say this is a hidden disease and as the name suggest a real Phenomenon. Raynaud's is varied and complex and I only started learning about it when I was diagnosed in 2004. It seems I had it for many years prior to and was going to my GP complaining of all the symptoms you described and more but it wasn't picked up. I'm sure my GP thought I was a hypochondriac, I certainly started questioning myself also.

    Like you it was a relieved to get the diagnosis. You are going to see your doctor so make sure to mention all your symptoms. Make a list so you will remember the things you want to tell and the questions you need to ask. Don't be afraid to ask if you are not clear on something.

    Raynaud's can be troublesome and every patient is different but in time you will be able to manage with the help of your medical team, family and friends. Try not to stress and look after yourself. Rest is very important also.

    To keep warm, just wear extra layers, gloves, socks and a good comfortable pair of shoes or boots and take your medication as prescribed by your doctor. Having Raynaud's is not the same as just having cold hands and feet. There's much more to it as you are finding out. Remember to cover your head with a nice woolly beret, a woolly hat and a scarf when you go out .

    All the best.

  • Hi mum32008 welcome.

    I agree with graygirl1 her advice is spot on.

    Regarding your possible diagnosis of systemic sclerosis,if this is diagnosed there are different types and your consultant will tell you which type you have.If you are not told which type please ask.

    We all react differently to scleroderma,no two cases will be identical but similar.I have CREST which is the limited sub type of systemic sclerosis.I know of other people with this but our problems differ therefore treatment does.

    Whatever your diagnosis it is important to try to stay positive as this helps your immune system.Please take care.smiler2012

  • Thank you both for your replies and advice : )

  • Ask to be referred to a reumatologist.

  • Thats who i saw in August and am seeing again in 2 weeks, hopefully she is better than my dr, seems to be from how she was last time :)

  • Sorry to hear you feel alone and also about the fact that doctors misunderstand these conditions, it is a common problem. You can follow the RSA on facebook to hear about tips to keep warm, just search for "Raynaud's and scleroderma association" and please get in touch at if you ever need any advice. Thank you.

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