Hi, I am under a Rheumy for hand pain and generalized joint and muscle pain and have been for several years. I was initially diagnosed with RA but in December the Rheumy drew a line under that and took me off MTX and agreed with me that my clinical signs and symptoms are not RA. Since then she has run a multitude of bloods and sent me for liver scans and EMGs (looking for Carpel Tunnel which was negative). Then, out of the blue I receive a letter saying the blood tests I had in April show Sjogrens Syndrome and she will review me in clinic with possibility of a referall to Opthalmology and a lip biopsy. I do not dispute this diagnosis - I have been thinking I was suffering with severe fatigue in my eyes but I have done a little research and have taken artificial tears (no preservatives) for the last two days and the difference is amazing. However, my knowledge of Sjogrens is very limited and I have made an appointment with my GP as I think that telling someone by letter that they have another condition is actually quite shocking. But if his knowledge of Hashimotos is anything to go by, I think I will most likely come out fuming.
Anyway, the rheumy added that my hand pain is probably related to Sjogrens but I don't think it is. My hands get worse as the day goes on. Its not a joint pain but more a burning pain everywhere with a kind of tightness. The palms go bright red and the redness is directly related to how much pain I am in. There is no pain medication that helps. The only thing that eases the pain is the cold. Cold water, cold weather etc. I think I have something called Erythromelalgia, however, no-one is listening to me. The Rheumy sent me a script for preds 20mg a day decreasing to 5mg a day over the course of a month to see if that helps and if anything it's worse today after two days of taking them. Can anyone suggest what I can do to get a diagnosis for my hands? I do not think it is related to the Sjogrens or the Hashis as it has been getting progressively worse for three years and I am at the end of my tether now! I also don't see a UK community for Sjogrens on here?