Some questions: Hi. I'm new around... - The Australian Sj...

The Australian Sjögren's Syndrome Association

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Some questions

BubbleMonkey
BubbleMonkey

Hi. I'm new around these parts, but I was hoping some people might be able to help me with some questions.

I currently have something up and I'm not terribly sure what. I originally thought Lupus, but there's a bit of a dead end there. Consultant can't guarantee I don't have it, but there isn't enough evidence to say I do and any evidence there is is pretty generic so it could pint to anything in that general area... including sjr... sjor... sjogren's. I've also been diagnosed with palindromic rheumatism, but after an evolution of symptoms Rheumy says PR wouldn't cause that.

Now I never even considered SjS (that's what I'll call it for now) before and even after taking a peek at it I immediately turned my focus away because of dry eyes and mouth being mentioned as a big part- I would obviously know if my eyes were dry!

But according to somebody who's given me a handy few things to look into it's not as simple as that and I could well not know and it could even be something that's later than the rest developing. And that made me realise that although they don't feel dry I do have some issues with my eyes which I've stated to notice (odd issue with my vision on and off, sensitivity to light and sometimes watering or getting sticky) and a lot of the other symptoms of SjS do match other conditions I've been looking into and my own symptoms.

So apparently SjS isn't worth ruling out just yet and that's where you guys come in. I was hoping you could give e a bit of insight into how SjS actually feels and how I might go about checking if I have it?

For the record my main symptoms are aches/ pains, fatigue and some bouts of odd vision and dizzy/ uneasy moments. There are also other bits and bobs (like some skin issues), but honestly I don't think I could remember all of them to write down and there are some things I wouldn't know if are a symptom, just me or a totally normal thing everybody gets.

Thanks for reading and a huge thanks to anybody who can give me a little insight. :)

12 Replies

All of your symptoms could indicate Sjögrens, before i was diagnosed I felt very ill , very dry mouth and eyes swollen parotid gland and had awful pain in muscles and joints . I was exhausted all the time and had to spend alot of time in bed . My lymph nodes were all greatly enlarged , which doesn’t always occur with Sjögrens. I saw several consultants before i was referred to a rheumatologist who made the diagnosis but in hindsight i had symptoms for years. I hope you get some answers soon so you know what you are dealing with . Best wishes and good luck 🌸🌸

Hidden
Hidden

Hi BubbleMonkey - So sorry you are having to deal with al of this. We generally don't get into the diagnosis recommendations because almost none of us are medical. But there are a couple of things your symptoms can point to.. Sjogren's (also called sicca syndrome) is one, as is Fibromyalgia and even Chronic Fatigue Syndrome. I honestly don't know if you can have SS without getting dry eyes, because that seems to be one of the first obvious symptoms. My eyes were getting dry 20 plus years before I was diagnosed.

It's good that you are doing your research, but I want to offer a gentle caution: Doctor Google can make you pretty crazy if you let it. You can imagine your self with a thousand different conditions, partly because all of the symptoms are similar.

Good luck getting an answer from your consultant..

BubbleMonkey
BubbleMonkey in reply to Hidden

Thanks. Don't worry I'm not relying on doctor google- just trying to get a sense of what things to discuss with which docs first cos they've kinda reached a dead end. I've found that if I see my doctor with no direction nothing happens so I need to go in with some sort of goal like asking about specific conditions. So now that this dead end has come about I'm trying to work out the best next step.

I guess what I was really wondering with the dry eyes is how you actually know if you have them. I kinda figured it would be super obvious, but I don't know if I would actually be able to recognise it.

I'm hoping to see an eye doctor of some description soon anyway so I guess they'll be able to tell me.

My optican used the schirmers test ( not sure of spelling) it is like blotting paper that measures moisture in eyes , very simple test.

So hopefully when I see somebody about my eyes they'll be able to clear that up for me? Cool. And it's a rheumy I'd need to see to discuss SS right?

Yes a rheumy would be the best consultant to see about getting a diagnosis. There are a number of autoimmune disorders with similar symptoms so diagnosis can take a while . Best wishes 🌸

Hidden
Hidden in reply to BubbleMonkey

Yeah - The eye doc can tell pretty quickly because you will be scratching your corneas. That was my first real clue, which I didn't understand at the time. Later it was an Ah-Ha! moment. Best luck in your search for answers. I think I was one of the only people in the world to have a doc tell me what was wrong before I started asking. Then I didn't believe for four years - Oopsie - ha ha

Hidden
Hidden

Hi there. It might well have been me who pointed you towards Sjögren’s. I know from my very specialist optician and a lead ophthamologist - that some are less aware of dry eyes than others and that some who feel their eyes are extremely dry - haven’t actually got corneal damage - whereas some who are barely aware of the dryness can find out that their corneas are significantly scratched. The test that most opticians do is the tear break up test or Rose Bengal. I barely notice my eye dryness now and yet it’s just as bad as it was when I was diagnosed. My ophthamologist and optician have confirmed that the Sjögren’s neuropathy means I barely feel it even when they are very dry. My mouth is usually fine but if I have to breathe through it or try to swallow dry food then I get panicky swallowing problems or oesophageal spasms or my mouth just becomes like a desert very quickly.

I think a lot depends on your age as I feel sure I’ve had Sjögren’s and Hypothyroidism from a young age but it was only when I was mistakenly diagnosed with RA that I started to be aware of dry eyes. It’s a Syndrome so each person has a unique presentation and you could probably find every symptom of every rheumatic and neurological disease amongst the Sjögren’s population so I really wouldn’t exclude it just because your mouth and eyes don’t feel dry. X

BubbleMonkey
BubbleMonkey in reply to Hidden

Thanks a lot. :) I'm seeing my GP on monday to get an endo referral and I'm going to mention some of the other stuff then too. I'm starting to become more and more aware of some sort of eye issue, but I can't tell what it is so current plan is to see endo and check on thyroid and vitamin levels and also see somebody to do with eyes and senses (I have a suspicion I may have some form of sensory processing disorder- not a huge stretch considering I already have an ADD diagnosis). I will check with whoever I see to do with eyes about dryness and depending on how that goes I'll look into seeing a rheumy (possibly a different one to my current one so I can get a bit of a second opinion on things).

From what I can tell my symptoms all fit in with the general idea of an AI/ connective tissue condition, but there's currently nothing specific enough for any particular diagnosis. Potentially this eye thing that I've been mostly ignoring (thinking it was my dyslexia) will be the key. And hey if not it's still more info to add to the pile and maybe eventually lead somewhere.

Hidden
Hidden in reply to BubbleMonkey

Not sure where you live but if in the UK then any high street optician can check your eyes for dryness and look at your optic nerve, stigmatised etc - you don’t need to wait.

BubbleMonkey
BubbleMonkey in reply to Hidden

Good to know. I'm hoping to get to see somebody for other stuff so I'll see if I can combine the two, but if not I'll pop over to specksavers :D

Hidden
Hidden in reply to BubbleMonkey

My son went to Specsavers last week and the young optician was brilliant he said. He made his appointment online and it was on the NHS

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