Does anybody know anything about Sjogren's Syndrome?

Does anybody have it or know somebody with it? :(

official info here (http://www.sjogrens.org)

Thanks Robbie :thumbsup:

I've already Googled it, but was wondering if there was anybody who had any personal experience

Originally posted by Strix
Does anybody know anything about Sjogren's Syndrome?

Does anybody have it or know somebody with it? :(

Yes! I suffer from it and it is not funny, disabling, excruciating pain, unable to walk and according to my Doctor, there is no treatment and no cure.

My mum is being tested for it :(

Strix, My Auntie has suffered from this for about 15 years. She doesn't produce enough saliva or tears etc. She copes very well, I think she's about 65. She has eye drops etc and lives an active ordinary life. It's just having a dry mouth all the time which is most noticible. Good luck to your Mum. Emma xx

According to the doctor, there is primary and secondary conditions. It sounds like your auntie, Eclaire, has primary but Halevan has the secondary symptoms.

Does anybody know whether it develops into secondary, or whether you just get one type and it stays like that?

I know this is digging up an old thread but I was diagnosed with this last year. This year (touch wood) I'm not so bad and have learned to live with the dry eyes and mouth symptoms, occasional aches and pains etc but last year left me with time off work and often reduced to tears if I tried to walk. I know my employers don't understand and I feel they don't believe my symptoms.

Since it's little known about and can mimic other conditions/diseases patients have to be monitored in order for us to learn more - in my own case I was diagnosed with osteo-arthritis/sjogrens (firstly mistaken for mumps) and also menopausal so I guess knowing where the lines should be drawn between each for some symptoms is going to be very timely and difficult.

From what I've read primary and secondary are very different and one can't become the other; also there are different symptoms and each patient can suffer from different ones so that no two cases are necessarily alike.

So how's Auntie doing now, is she managing well with it all? I'm guessing that the first year was troublesome (hence approaching the GP) so was wondering if the next year or two was a little easier or does she get regular flare ups of some of the symptoms.

Hi Tiffy. It was somebody else's aunty. It's my mum who has it unfortunately

She has a range of symptoms which include the dry eyes and mouth, which is exacerbated by a biopsy that was done unexpectedly and (as it turns out) unnecessarily. Stiffness in her hands (to the point of complete paralysis on occasion) seems to be her biggest problem, though she is on statins, so it's difficult to know which is the root cause of that. She also suffers from fatigue, which is the biggest obstacle to holding a job down

She's a mess really, but it's really difficult to separate out her syndrome symptoms and those of the stress she's suffering from at the moment, which makes treatment really difficult too

I'm sorry I don't have anything more useful to tell you at this point :(