Does this sound like sjogrens

[molly]

Hi there

I would be grateful for your opinion please.

I was diagnosed with mild sjogrens syndrome about five years ago.  This was based on a bone dry schirmer (?) test......I didnt even know that I had dry eyes.....and some symptoms but my bloods were normal....I didnt really take much notice at the time.

I am not seeing anybody about sjogrens and over the years my symptoms seem to have got worse.  Some of the symptoms are constant but minor....but sometimes I will feel particularly not well and things all flare up at once.  Can you actually have `flare ups` of Sjogrens.  For instance, when I am not well I find that my mouth will be particularly dry which leads me to think it might be a sjogrens flare.......but would your mouth not be dry `all` of the time.  Just a bit confused about things and need to understand what is going on....can you have periods of feeling okay and then everything get worse at once.

When particularly unwell - what I would call a flare up of whatever is wrong......I will feel ill - obviously - as though I have a virus.
Eyes, dry, red, burning and sore - lights seem bright.
Mouth bone dry - have to chew gum...night times awful and my tongue sticks to the roof of my mouth - there is usually a red patch right down it in the mornings.
Jaws very tender and sore - especially near and under the jaw area...sometimes they just ache.
Glands sometimes feel tender and swollen - especiall behind my ears, around my jaws and in my neck - ocassionally under my arm.
Dehydrated skin....(although could I recommend to people rose hip oil).
Aches and pains - joints and muscles sore and tender.....I do have a bit of wear and tear - so mechanical problems but these will get far, far worse during a not well period.
I have suffered for several years from esophagitis - I take omeprazole every day following and endoscopy - but everything gets hot inside and burns......I get an inflamed stomach and bowel problems too.
My thyroid gland sometimes gets a bit inflamed - this was found on examination by an ent doctor a few years ago.....I have blood tests for this annually - and the thyroid function is normal but it veres towards hyper but stays within normal range.....I do find that I tend to feel anxious when unwell and feel that it might be my thyroid being a bit inflamed.
pain, strain behind my eyes and pain in one of my eyes - looks puffy above the eye.
ears, nose and throat problems - lots of sinusitis (but without discharge if that makes sense) pain right down the bridge of my nose........ears often feel horrible too.....noises in my ears sometimes......
When not well - usually profound tiredness.  Sometimes urticaria.
My periods stopped completely about a year ago and symptoms seem to have got worse since then.....
I would like to ask two specific questions please......
Does the above sound like Sjogrens to you.
Can symmptoms come and go and flare....even dry mouth - can it get worse when you flare but be reasonable the rest of the time.....
Just a bit confused.
Also - if anybody is English here (sorry - not allowed to say English any more - ridiculous though it might be......so, anybody from the UK)  I need to find a really nice, helpful, good sjogrens specialist.
Anyway - sorry for such a huge message.
Many thanks......would be grateful for opinions please.
Thank you.

[molly]

Sorry - PS

Can you have sjogrens with normal blood tests please.  Thank you.

[Scottietottie]

Hi Molly 

Welcome to Sjogren's world.  I'm Scottish but live in England so UK does sound appropriate to me I must admit, as if I was still living in Scotland - I wouldn't be living in England.   It depends where about in England you are as far as finding a rheumatologist goes. There are several Brits in here - and I'm sure you'll get answers depending what region you're in.

As well as finding a rheumatologist, it may well be a good idea to ask your GP to refer you to an endocrinologist as they seem to be the thyroid specialists. Also - do you see an opthamologist? I didn't see one until I asked to be referred and the treatment they gave actually helped my eyes quite a lot.

It is possible to have Sjogren's with normal blood tests. In the UK we're lucky. We seem to be more likely to get a dx based on symptoms than they do over the pond. I think it must be due to satisfying medical insurance criteria which we don't have to do here.

What you've written certainly sounds like Sjogren's and could well have thyroiditis in the mix as well. The thyroid controls so much of our systems that it's important to have it under control as well. A lot of the symptoms overlap too.

I hope you find the site useful.

Take care - Scottie