Just been diagnosed with Sjogren's Syndrome BY ... - Thyroid UK

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Just been diagnosed with Sjogren's Syndrome BY LETTER!!

jlo211
jlo211

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?

4 Replies
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jlo211.

Blood tests may be indicative of sjogren's but I believe it is confirmed with a lip biopsy. There is a community for sjogren's healthunlocked.com/sjogrens...

jlo211
jlo211 in reply to Clutter

Thanks Clutter. The Rheims has said that following my next appointment and review in clinic she will do a lip biopsy.

RedApple
RedAppleAdministrator

jlo211,

If you haven't already done so, go to the Erythromelalgia Association website and download their patient booklet erythromelalgia.org/Portals...

There is also some info about Erythromelagia on the Scleroderma and Raynaud’s website sruk.co.uk/scleroderma/eryt...

Erythromelagia is classed as a 'rare' disorder. This means that the vast majority of medics have never heard of it, and on that basis alone, they don't listen to you (it's rare so of course you can't have it). And in my experience, most medics also aren't interested in something with a name they can't pronounce!

There is no test that can diagnose Erythromelalgia, so it's done by a process of elimination. I suggest printing out the page from the Scleroderma and Raynaud’s website to give to your GP and ask for a referral to a dermatologist, as they are more likely to have heard of it.

jlo211
jlo211 in reply to RedApple

Thanks red apple. Today o am not having a flare as the weather here is very autumnal and very cool! I will print that out. I spoke to my GP who agreed that the symptoms in my hands sound unlike Sjogrens and much more of a neurological problem or sympathetic/parasympathetic nerve system so we're getting warmer.

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