Lupus and Raynauds Advice - Raynaud's Syndrome Message Board

dragh090671 · 03-14-2009, 10:29 AM

Hi
I am newbie to this whole concept.

I was diagnosed with Raynauds which no one else has in my family about two years ago. It confused the specialist when I was diagnosed as it started just at the age of 35 and progressed to rapidly to extreme attacks I had to go into the hospital every five weeks for intravenous medication which lasted upto five days. The specialist wrote to my GP and advised it was not behaving normal and was not reacting to drugs as it should and they thought there was a secondary illness somewhere however the blood counts were fine.

Recently I have been very tired, and my joints are aching (sore) but not the bones, my hair is falling out in chunks and I have now got three little lumps under the skin on one of my legs (about the size of a pea). The first one appeared when my Raynauds was at its most extreme and I had it removed they advised it was fibrous however I now have two more appeared.

I have now been referred back to the hospital but I was just looking to see if anyone else had similar symptoms with lupus as this can be a secondary illness to Raynauds.

*erica* · 03-14-2009, 11:53 PM

dear dragh090671,
I have both lupus and Raynaud's, and I experience symptoms almost identical to yours. As with most people with lupus I am tired all the time, my joints always give me constant pain, and when I'm in a flare my hair falls out like crazy. When my Raynaud's is really bad I get lumps in my skin but they may not be the same as yours as mine tend to go away as soon as my flare is over. I hope this could be of some help to you and if you have any other questions feel free to ask

dragh090671 · 03-15-2009, 05:56 AM

Thanks

It is good to hear someone else has similar symptoms and I am not crazy. I have to say my local GP is great it just seems to be when I go to the hospital there answers are well that is not normal or I cannot understand that and you start to think it is yourself going a bit crazy after a while

Alexa3 · 03-15-2009, 08:20 PM

What kind of Raynauds attack lands you in the hospital with IV medication? I have Lupus and Raynauds, I have several attacks where my hands go white, then start tot urn blue if I don't get the blood flowing on my fingers. When it's that bad a hot bath makes it go away. This winter in the Puget Sound has been much colder and we are still getting snow storms, so it's a challenge to keep our hands warm enough. Nothing like a hot bath to get the blood flowing into your whole body, toes, ears and nose too!

dragh090671 · 03-16-2009, 03:53 AM

I had up to 15 - 20 random attacks a day for no apparent reasons it was not triggered by the cold. The attacks could last up to an hour, hands, feet, nose, lips, ears would go white and a really dark black colour and the pain was severe. I tried everything, eating ginger, hand warmers, hats, gloves everthing anyones suggested etc and nothing worked, I would have attacks during my sleep and the tablet medication did not stop the attacks. The hospital did tests and the attacks came and went as they pleased, they had no trigger to set them off, they just happened, I was sent for tests on my lungs and heart and because there was no apparent trigger for the attacks they diagnosed I did not have primary raynauds but could not find the secondary part for secondary raynauds. The hospital had concerns the attacks could happen anywhere there was blood supply and it was then I had to go to the hospital every five weeks for iloprost treatment which is an unlicenced drug but it did work.