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Hi everyone, diagnosed with Raynauds in January 2017, had it since August 2016. My blood tests came back clear for other things although Rheumatologist said I didn't have Lupus. Since January I am experiencing pain in fingers and slight swelling and pain on the tops of my feet, amongst other things. Getting worried now that I may have Scleroderma. Rheumy said that negative blood tests doesn't always mean I don't have anything else, it can just mean I have a milder form of it,

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  • You would by like us.

  • Thanks for replying zenabb, after reading quite a bit about everything connected to raynauds/scleroderma, it can get a bit scary but I suppose some things are mind over matter, do you think? How areyou coping and how long have you had it?

  • Hi Marie

    Hope you doing ok. My knowledge is pretty limited but here is what I understand. Only about 8% of people with scleroderma test negative for it. So if you are negative then very likely that you dont have scleroderma. What blood tests did you have?

    Also worth noting that primary raynauds (i.e. without any other underlying condition) is much more common than secondary raynauld's. So again chnaces are that you just have raynaud's on its own. Though I know that can be annoying in itself.

    Pain in your fingers could be lots of things I guess. Could even be the raynaud's. I dont think finger pain is one of the diagnositic criteria for scleroderma, though people with it can get pains all over the place.

    Could you say what blood tests you have? Was it the ANA test?

    I guess you could go back to rheumatologist to put your mind at rest.

    I know that symptoms appearing can be very worrying.

    best wishes

  • hi charlieab, yes, think I had all the required tests, so with what you say, I'm hopeful I haven't got scleroderma, just seems that lots of things are happening all at once, stiff, sore fingers, feet and now eczema in my ears! Was supposed to go back to rheumy this month but on jury service so nxt appt is October!!! Unless there's a cancellation. Dreading winter, cool summer nights are challenging and supermarkets!!! All new to me

  • I have Secondary Raynaud's and went out today in layers, a thermal jacket, thick gloves and a shawl. Everone else was in t shirts. I didn't get one strange look! Like you, if this is July, I'm dreading winter. I have a positive ANA and a very slight marker for scleroderma, though lupus is in question too. I can't say I've noticed anything sclerodermary. Lots of other problems, but not that.

    All these auto immune diseases are quite cruel. You can't predict one day from another, but I can generally get by.

    My Raynaud's was diagnosed instantly in early 2016. I'd had it much longer than that but thought it was normal for me. I'm afreaid it's getting much worse though. I'm going to beg for trial meds which have been refused so far because I have low BP x

  • the more I read about things, the more worrying it all sounds and as I'm nearly 63 it makes me suspect scleroderma as well as raynauds, I could be wrong but didn't think raynauds caused pain on a warm day. It's a very confusing condition, don't know what to expect really!

  • I am 88 years old and have had it all my life I think. Things come and go I cycles.

  • you seem to be taking it in your stride though, good for you, hope you have good cycles more than bad ones

  • You'll get along with it in time marie, because there is so much help and support here. It's always scary at first. By the way, I'm 61 this year! If any pain is more than a paracetamol helps, try your GP to see if any more can be done.before your next rheumy appt.

    I'm sorry if my response worried you - I have other problems too. Come the colder weather, one of the best things you can do is keep the core of your body warm. Sounds strange because the hands and feet are generally what show the problems most, but it really helps.

    Make the most of it being July and snap up on bargain thermals others aren't thinking about!

    Do take care x

  • Thanks for your post, yes, I'm sure I'll cope with what comes, some people are much worse off than me. Yes, been looking ahead for the winter bargains! Socks and gloves being the priority, my dog loves gloves!!! and definitely hats. Sorry to hear you have a few things going on and I hope it gets a but easier for you soon, keep smiling eh?

  • Thermal undies are not the height of glamour, but help a lot!

  • yes, but no-one sees them!

  • Niacin is very helpful to me. I am reading the book "Niacin, the Real Stiry". Niacin is safe to take and works better than any medication. If you decide to take Niacin, take the kind that gives a flush. Twin Labs is a really good quality brand and is available at the Vitamin Shoppe. Take care of yourself and stay in touch.

  • thanks for that, I'll look into the niacin, everything that can help will be welcome

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