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.

I don't have it (I know, not much help!) but I have been tested for it when I developed some, not all of your symptoms. The one i had that you don't mention, that got the neurologists all excited, was perioral numbness, that all around my lips, tip of tongue and tip of my nose went numb. The diagnostic test is a salivary gland biopsy from your lower lip.

I ended up having a different neurological/autoimmune condition. But the tiredness, exercise intolerance, weakness, dry eyes (had to stop wearing contacts), dry mouth were all there.

I hope you get some answers to what's going on. Though I don't like my diagnosis, it was good to have an answer to a lot of questions.

Thanks for your answer. I don't have any numbness or anything like that.

Could I ask what you were diagnosed with in the end? It's okay if you don't want to share.

Don't mind at alol. My illness is called CIDP, Chronic Inflammatory Demyelinating Polyneuropathy. Numbness is my main symptom but also the dryness, fatigue, weakness etc. Luckily there's a treatment that I can get monthly to stop it getting any worse, but I'm still fairly disabled with it.

I hope you get to the bottom of your problem. I hope you've been referred to neurology or rheumatology or someone!

I have it.

I am being tested for it right now. Bloods taken today for inflammation markers. It's not a condition with a definitive diagnosis but drs look if there are enough indicators. 54

I have it. And Addison’s, lupus, asthma and all sorts of other things. The main symptoms for me was severe vaginal dryness leading to persistent thrush, dry eyes, oral and oesophageal thrush. I was diagnosed by the rheumatologist on symptoms alone.

I use corsodyl mouthwash daily (it does stain my teeth but I have this removed every 6 months by the hygienist), Daktarin oral gel every night to prevent oral thrush (I’m under an oral specialist as well as rheumatologist). Ovestin internal oestrogen cream and Replens on alternating days for vaginal issues. Fluconazole 150mg tablet once a month, canestan internal cream applicator once every 2/3 weeks. Hycosan eye drops every 2/3 hours.

Should add I am 41 and was diagnosed when I was 37, it’s not related to age, it’s often just autoimmune based. Very common to overlap with lupus.

I haven't been referred and haven't even told the GP about it. I've just kind of got used to the problems, but am struggling a lot now. I've never had any oral thrush.

Definitely sounds like you need a conversation with your GP and to have some bloods taken. I certainly wouldn’t leave it, especially with the cough and breathlessness.

I was referred to Rheumatology as my GP thought I may have Sjorgrens as my symptoms initially were chronic dry eyes, rashes and swollen finger joints. It actually turned out to be another autoimmune condition but there’s a lot of crossover with autoimmune illness and dry eyes and joint issues seem to be very common to a lot of them.

Seconding lupus. A lot of people with lupus also have sjorgens - but many of your symptoms are classic lupus

Lupus? I don't get any rashes though.

@bestcattoyintheworld

Lupus? I don't get any rashes though.

It’s a myth that you have to have the rash or any rashes with lupus. I don’t have any at all. My lupus mainly presents as back and joint pain and kidney involvement- basically lupus is an over active immune system that attacks itself.

www.lupusuk.org.uk/what-is-lupus/

Agree with Bagelsandbrie, my daughter was diagnosed with lupus when she was in her early twenties, she has never had a rash, presents with very sore swollen joints around her body extreme fatigue, thankfully her kidneys or other organs have not been affected, also has sjorgens & fibromyalgia which isn’t uncommon with autoimmune issues.
I would see your GP hopefully get some tests.

Oh, I didn't realise that about the rash, thanks.

I'm going to the dry eye clinic at the eye hospital in about three weeks, so I'm going to see what the results are of the tests they'll do then ask them if I should ask the GP for some blood tests. My eyes are very bad and are developing complications so it's perhaps an indicator that something could be causing it.

Thanks so much for these replies and information. I've been wondering and worrying quite a bit.

@bestcattoyintheworld

Oh, I didn't realise that about the rash, thanks.

I'm going to the dry eye clinic at the eye hospital in about three weeks, so I'm going to see what the results are of the tests they'll do then ask them if I should ask the GP for some blood tests. My eyes are very bad and are developing complications so it's perhaps an indicator that something could be causing it.

Thanks so much for these replies and information. I've been wondering and worrying quite a bit.

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. So if they try and fob you off saying everything is “normal” ask for a second opinion. Ideally a good rheumatologist should treat based on symptoms.

Thanks, I've heard that GPs are more inclined to resort to easier diagnoses with these symptoms, but I'll insist on a rheumatology referral.

Good luck

I have the dry eyes and joint pain. Dry eyes lead to inflammation which initially I thought was infection but recently eye doc said no it's inflammation. My eyes get worse at same time my joints flare up. Initial bloods suggested autoimmune but subsequent bloods did not. Was referred to rheumatology who said the next step would be the biopsy which he didn't recommend. My family has a long history of autoimmune so I suspect it is something autoimmune but perhaps not bad enough to get picked up on bloods? I also have osteoarthritis which is getting worse (as are my eyes) am 53. I have a LOT of stress in my life. Sorry if that is of no use but you should definitely get blood tests taken.

This group is good -

www.facebook.com/groups/454589521294750/?ref=share

I've just had a lip biopsy to test for sjogrens.
Now I only have to wait until next february to find out!

Apparently I have it, have never heard of needing a lip biopsy to confirm! I also have RA. On the other hand I might not have sjogrens as I had my details looked at for a second opinion and they said it wasn’t clear I had it. 🤷🏽‍♀️ I have dry mouth, eyes and skin. Have to sip water regularly and am on hydroxychloroquine for them both

I have it, seronegative but diagnosed by lip biopsy (which has left me with a partially numb lip...) Also on hydroxychloroquine and soon to start methotrexate for very high anti-CCPs which are suggestive of RA, but I don't have classic RA symptoms. I have dry eyes (horrible), dry mouth, skin, muscle pains and fatigue. I wish you luck with this and I wish they'd do more research into Sjogren's because it's just not acceptable that there's only stuff you can do for symptoms, nothing to stop it progressing etc. Good luck with your tests.

Bloody horrible isn't it?
The biopsy and the sjogrens (if that's what I have)
I have a numb and lumpy lip now.