Sjogrens Syndrome

[bestcattoyintheworld]

Does anybody have this and could give some info?

My symptoms are:

Very dry eyes, to the point where I'm having damage to the corneas
Dry mouth
Joint pain and easily damaged joints
Dry cough
Tiredness
Weakness in the muscles
Lethargy
Wheezing and some breathlessness at times
Exercise intolerance
Heat intolerance - have to completely avoid sun in hot weather
Cold feet - hands usually okay
Dry skin - no rashes, but skin was very itchy up until recently when I stopped using soap
Pain in gallbladder region - itching present when this happens - LFT comes back okay though
Sinusitis

I've been putting everything down to the menopause, but the cough and breathlessness was worrying me. I've become very weak and even struggling to get lids of things. I'm 52 so not that old.

Just a heads up… you can have lupus and your blood test results can be normal. Mine usually are. It’s called sero negative lupus.

Also make sure they check the ANA antibodies which is not always done on a standard panel. My lupus only shows up there and I otherwise have completely normal blood results and inflammation markers. Some doctors assume all autoimmune disease much show raised inflammation but that was never the case with me even when I was most ill (incidentally with a lot of the same symptoms you list). I also never had the typical facial rash.

All this could be me, I’m waiting for a lip biopsy 🤢 but my bloods are all more or less fine so probably not in my case.

(Side note, this blew my mind: my reheumatogist said that if you’re hypermobile (I am), your nerves are literally loose in your body and this can mimic autoimmune syndromes, AND you’re very likely to have anxiety disorders!!!!! Thought I’d share as it honestly made so much sense to me and my issues!)

You really do need a referral to a rheumatologist asap. It is very common to have more than one autoimmune condition at a time and you will need specific blood tests. Early intervention is very important.

Just reading through more replies, sorry to jump on your thread OP. I had a glorious 4 months or so, since I got pregnant no problems at all, but now having a ‘flare up’ and realising how shit I have felt since having my second born! Docs seem to think it’s unlikely to be anything official so what else can I do other than eat well, exercise, rest? I would upload a pic of my face rash but don’t want to show my face of course.

Regarding the rash.

After a shower in particular, and in general the rest of the time, I have what looks like flushed cheeks where you'd put blusher perhaps and my nose goes red after a shower. When I'm overheated I go bright red in these areas and it's very embarrassing.

Does this sound like a lupus rash or could it just be because I'm very pale?

Yes, it's known as the butterfly rash due to the shape of it.
I have read that it is one of the most defining signs of lupus.

@CatonMat sympathies for the numb and lumpy lip. The person who did mine totally blew off the chances of any last issues - I'd read 5% - saying she'd never had or seen lasting problems. I absolutely don't believe her now. She also took 25 minutes to do it vs. the shorter periods I've read in the literature. Ugh.

How long since you had yours?

Probably it was worthwhile though since mine wouldn't have been diagnosed without it.

OP: there is a Mumsnet AutoImmune board too, and you can search on Sjogrens there. There are a few people here with it. Good luck with your diagnosis.

It's almost two weeks since I had mine, so I'm hoping for improvements, still.
Mine took ages, too, and the doc was counting each bit as he snipped it off.
It was quite traumatic!
My jaw was chattering.

@CatonMat

It's almost two weeks since I had mine, so I'm hoping for improvements, still. Mine took ages, too, and the doc was counting each bit as he snipped it off. It was quite traumatic! My jaw was chattering.

Oh cat, from everything I've read you've got a really good chance of yours sorting yourself out in the next three months. It's folks like me whose problems persist (mine's 6 months +) with less chance. Fingers crossed for you.

In can it helps, I was told to take B vitamins and massage the area in the mornings, after I've cleaned my teeth to stop the scar "settling" lumpy. (I later saw an oral surgeon privately to see if there was any hope of getting the feeling back -- he said it should have taken about 7 mins and it's that clamp that they put on your lip that can result in numbness so the goal is to get in and out quickly - surgeon couldn't do anything about my numb lip, but gave the advice above, which I hope helps you). Horrible!

If your symptoms started in the last 18 months and the other avenues come back inconclusive then it might be worth looking into long Covid.

I know this is an old thread but wondered if its even worth getting diagnosed.

I am cynical about getting diagnoses that will potentially complicate insurance (including things like holiday insurance) unless it is actually worth it. I am definitely not getting a lip biopsy! Sounds like it causes more problems than its worth. Unless it makes a difference to prognosis I am steering clear!

I am taking omega 3 and getting eye drops and salivary medication on prescription for dry eyes and mouth. I'm getting vaginal estrogen for urogenital dryness and that has sorted that. I'm getting physio and medication for my sore joints. I have an implanted heart monitor for those issues. I figure I may as well get each symptom sorted individually under the heading 'menopause'. I figure menopause won't send my insurance company crazy but an autoimmune disease just might!

I would be interested to hear from anyone who found that getting diagnosed made a real difference to their health. I mean what difference does it actually make if you can treat each symptom individually anyway?

@Eira101 I have a lot of symptoms - very dry eyes and lots of joint pain. Also have asthma. Have prolapsed discs too..

I have had blood tests that only indicate tiny raise in inflammatory markers. Consultant said can't rule out Sjogrens but would need lip biopsy which he advised against. I am not keen either.

Would a diagnosis help? I think so when dealing with work. At the moment I am having some type of flare-up with joint pain and swelling and am restricted in what I can do but difficult to say to boss - can't travel long distances because of pain - without saying what exactly is the cause.

By the way physio made my pain worse so I think people like physios would have more relevant information when treating you if you had diagnosis.

Not sure I understand the insurance point - are you in UK?