Sjogrens? Anyone with experience?

[LongTallSuzie]

So I’m 45. On depo so no periods. Could well be peri-menopause but no real clue due to contraception stopping my periods.
My symptoms are varied and weird. Google ( and TikTok!) have suggested Sjogrens but I’m unsure. I will make a doctors appointment but I need to get my head around how to bring it up. I hate visiting the GP so this is a big deal for me.

I had bloods done 2 years ago. No one ever contacted me over them. I’ve just had another look and my thyroid TSH level was 6. It’s been marked as ‘stable borderline’

I am often freezing cold. It’s currently 23.6 C in my living room. Yet I’m shivering and have popped the electric fire on. The other night it was the same kind of temp and I had my electric blanket on all night.

Annoyingly I’m also often boiling hot. I do a physical job and really struggle with the heat. I’m never just a nice comfortable temperature.
When I’m cold I’m really cold. Dramatically shivering and teeth chattering cold.

My lips are constantly dry. My mouth is a little. I’m always needing lipbalm ( I’m guessing I’m not helping myself with this)

My eyes stream with tears. Often just one eye. Sometimes both. I constantly look like I’m crying.

My vagina is dry. Itchy dry and sore 🥹.

I suffer with random aches. Often in my joints. Knuckles/elbows/ shoulders. Very weird and usually clears up after a day or two.

I’m tired. But nothing excessive. I work a busy job. Have kids and run a home so it’s usual I guess.

I suffer with low level anxiety. It’s getting worse. It’s making my life miserable at times.

I’m overweight. But dealing with it gradually. Are these thing all inevitable as I age or do I make an appointment? Sjogrens goes with the dryness. But I don’t really know much about it.
Any advice would be appreciated thank you.

I have Sjogrens and your symptoms don't really sound like it tbh, but you're the age-range and sex that it mostly seems to affect. The problem is it's notoriously difficult to get a diagnosis for it and most of the rheumatology consultants (for that's who you'd be referred to) either don't know enough about it or don't believe it exists (!) or seem to dismiss the results of just one test.

A diagnosis of Sjögren’s is based on the weighted sum of these 5 items. You have to have a total score of ≥4 for a Sjögren’s diagnosis.

The tests that are administered to determine whether you meet the criteria or not are a blood test to screen for Anti-Ro autoantibodies, a lower lip biopsy to check for inflammation, Schirmer's test to measure tear production, and/or a saliva flow test. If your GP suspects that your dry eyes or mouth or vagina and your feelings of exhaustion are outside of normal expectations, they "may" refer you for one of these tests (most likely the blood test). If that comes back on the scale for Sjogren's then they "may" refer you to rheumatology. It's often a fight to get that to happen for some reason.

Thank you. That’s my fear. I’d never heard of it. It was googling my symptoms that put the name and idea in my head.
I think it’s probably more age related and peri but again I don’t know. I just can’t decide if it warrants a GP appointment.

Apologies by the image I was trying to paste in, I forgot it wouldn't show. Here is the criteria table that your scored against and have to have a score higher than 4 to be diagnosed with Sjogrens.

Thank you. That’s helpful.

I wouldn’t necessarily leap to Sjogrens but there could be something autoimmune going on. I have psoriatic arthritis which also has some similar symptoms, including ones you wouldn’t necessarily expect like eye issues. I’m a similar age and I suspect peri is also a factor too but I think we can sometimes look for a single cause for a set of symptoms when there might be a couple of different things at play. I have a lot of potential diagnoses because it can be difficult to tell where one ends and the other starts. I’d definitely suggest some more bloods to start with though.

Thank you. I feel like there’s too many small things going on to talk about in a ten min appointment. The cold intolerance is the worst symptom. It keeps me awake at night which obviously doesn’t help the tiredness!

From what you describe it could be a multitude of different things from something autoimmune related, thyroid, perimenopause. You definitely need to up your water intake if you are dry and try some cold liver oil. I wouldn’t automatically think it’s sjogrens. I have it and my eyes mouth are extremely dry when I have a flare up, I have very stiff joints, lifting arms are a struggle and I have terrible fatigue but I wouldn’t rule out as you definitely have those symptoms more mildly. Autoimmune diseases tend to link together with others so if it’s autoimmune, it could be a variety of them and it’s very difficult to diagnose on average 10/-15 years I believe for a diagnosis. Keep researching and speaking to the gp, get more tests - perhaps request ANA antinuclear antibody test.

Unless you are being really incapacitated with exhaustion or your dry mouth is making swallowing difficult or waking you at night or your dry eyes are scratching your cornea, then your GP will likely tell you to take over-the-counter remedies like artificial tears or mouth sprays and perhaps a vaginal cream. So I'd likely chalk your symptoms up to a combination of peri and childcare. But if you do get to a point where you're crashing with exhaustion way before a normal bedtime or your optician suggests your dry eyes may be related to Sjogrens, then I'd not worry that that's what's causing it for you.

Thank you all. I appreciate your advice and experiences.

I'm waiting for a GP appointment to discuss possible Sjogrens since my dentist suggested it might be the cause of my dry mouth and (optician confirmed) dry eyes. I've already got psoriatic arthritis and have a rheumatology review coming up so I'll raise it then too. When I last raised the dry eyes/mouth with rheumatology it was attributed as a meds side effect and tbh I'm not sure a diagnosis would make much difference except perhaps getting eye drops etc on prescription instead of paying a fortune!

It is unfortunate that it mostly affects middle aged women, the population so often dismissed by doctors...

Hopefully you’ll get some answers. Sadly you’re right in saying about it being middle aged women. Easily dismissed as anxiety, period weight related (in my case). Thank you.

And you too.

I'm hoping that having optician/dentist confirmations already will help, and it's something you might want to consider as preparation for approaching your GP.

@RestingGrumpFace

All the best to you. I’ll keep searching. Seems to be a very long process. Fingers crossed we get some answers soon.