been to hospital and finally been told I do have raynauds....but I also have scleroderma...bit scary at first when told what tests I have to have done....bloods and chest x-ray done today but have to go back for heart echo and lung function tests an also ct scan on chest...but feel ok as doc told me I only in early stage some good news there...haha have to go back in 3 months for all results but still feel better knowing what is wrong and can get it sorted now and learn how to cope with it....the hospital seem to have a good team to help and I was only there for 3 hrs and that was with the test I had done today...well impressed stay safe an warm all...xxxx

6 Replies

  • Welcome to the club, I found out i had both about 3 months ago, this forum is a great help.

  • It is scary thinking about all the tests we go through to get things recognised & diagnosed (feel like I've given away most of my blood at times) but it does help knowing & being able to manage the symptoms. I don't have scleroderma (at least I don't think I have) but do have secondary Raynauds & Ehlers Danlos Syndrome Hypermobility type running alongside eachother. It does help having these forums to chat with other people who know & understand the conditions we live with.

    Best wishes, onwards & upwards. xxxx

  • Hi yes it is a bit scary when ur told I had a wee cry to myself on way home got it out of my system but now iv educated myself with my diagnoses iv also got scleroderma and raynaurds iv just got my results frm my tests the lung and gullet they all came bac satisfactory ..the heart one scared me most cause that's the thing that keeps u going its just a 10 min scan doc uses jelly over ur heart area its like a scan that's done for a pregnant woman I seen mine on a screen ..this site is great for advice support at least now u know what ur up against..stress is the thing that fuels it so stay stress free and positive have a lovely day in the sun ...

  • Hi hope the diagnosis did't scare you too much and bit of a double wammy I know I went into meltdown about 3 months ago when I was diagnosed with similar. I also have had ct scan on lungs lung function and still waiting for my heart echo. I think eventually when you are being treated and learn more about the condition it helps. This forum is great and it has helped me enormously please do not feel as if you are alone. All the best.

  • Hello and welcome to the forum. I was diagnosed with CREST 12 years ago (I also have raynauds) and like you was pretty scared at the thought of all the tests I had to have. I also made the mistake of looking at the condition on the internet to find out more and thought my life was about to end (then realised I was looking at the American sites which were painting the worse case scenario!!). There is lots of helpful information about the conditions and symptoms, but I have found this forum is the most helpful. As time goes on and changes happen to your body, just ask a question on here and someone will have an answer for you. Over the years my medication has been changed many times, it's a case of trying different ones until you find one that is suitable to you. I look at my hospital check up's as a kind of MOT on my body. At least I know what is happening which helps ease the stress. I have to have another CT scan this Friday as my lung function results have deteriorated and the Consultant wants to take a better look to see why. Try not to let things stress you as that is not a good thing for the Raynauds. Best wishes to you x

  • thanks all for your replys...it all really helps....I must admit I had a good cry when I got home as it is such a shock to be told what is wrong even when you know what you have.....but it does help coming on here and having somewhere to talk with people who suffer the same as you....I received my letter today about my tests...from what the letter says I have to go in for a day case and have all he tests on the same day...which hopefully will happen...I have to go the 18th july....thanks again for being there..xxxxxxx

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