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Original poster

Sjögren's Syndrome?

7 replies

Sickandtiredofbeingsick · 27/10/2022 14:15

My symptoms:

Tingling, pins and needles, burning in my feet and lower legs (had nerve conduction studies, all normal. Had MRI on back, normal wear and tear for my age, nothing found to be causing symptoms).

Dry eyes, caused by blepharitis and MGD. Optician says they are moderately dry, but with the prescribed treatment they don’t cause me much bother.

Mouth- I don’t have a dry mouth as such (I had this with amitriptyline and it was awful! 😣) but I do get a weird, sometimes persistent ‘feeling’ with my tongue. It’s really hard to describe, but it almost feels dry and sore? This feeling goes into the top/back of my mouth, where it sometimes feels sore for a day or night and then goes again. The feeling also goes down into my lungs, where they feel almost ‘tickly’ if that makes sense? I can take a full breath but it just feels ‘weird’ (had chest X-Ray and came back ‘normal’). Since last night I also have a weird feeling in my throat, it almost feels dry and I have to keep swallowing (scary! 😣). I do have dry lips, too (I also, although very rarely, develop cuts in the corner of my mouth). If I want to create more saliva in my mouth, then I am able to though?

Skin- I have psoriasis, so my skin is already very dry, but I have more recently developed an itchy feeling, that doesn’t appear related to my psoriasis.

Abdomen/Digestion - I developed a pain under both ribs last summer, I was diagnosed with gastritis (just from a nurse pushing underneath my sternum) and given omeprazole. I’m still taking it a year later but I still get these pains on and off. GP thought it could be IBD (calprotectin slightly raised), but I’ve just this week had a colonoscopy and there is no sign of any inflammation? I also get other abdominal pain, especially around my belly button.

I’ve had lots of blood tests, ultrasounds, examinations etc. and everything always comes back ‘normal’ so they’ve ruled out diabetes, thyroid disease, vitamin/mineral deficiencies etc. GP said to me when I saw her recently after my latest round of tests that she thinks it is a connective tissue disorder and has referred me onto the rheumatology department (that will no doubt be a very long wait).

If you’ve got Sjögren's, did your initial symptoms sound similar? I’m sick of constantly battling these symptoms, never knowing from one day to the next how I am going to feel.

OP posts:
Kayjay2018 · 27/10/2022 14:19

@Sickandtiredofbeingsick I don't have any of those symptoms except psoriasis. I have been diagnosed with an inactive connective tissue disorder as I have no symptoms. My issue was picked up with a positive ANA blood test result and some positive RO antibodies. I decided to go private as I was told a 4 month wait at least. I think it cost £300 ish just a few years ago.

If you can be flexible, it would be worth offering your availability for a cancellation or consider going privately. They checked my abdomen, eyes and feet and I had a few more blood tests. I had found I was pregnant the morning of my appointment and because of the anti bodies needed extra hospital monitoring of the baby. I was told it may or may not become symptomatic (it may be lupus or Sjögren's- my mum has lupus sle)

Pixiedust1234 · 27/10/2022 14:29

I got diagnosed with fibromyalgia from rheumatology with most of those symptoms. She did ask if I thought I had sjogrens too...like, how would i know better than her?!?

Several GPS also think I have fibromyalgia so pretty sure I have that.

Lonecatwithkitten · 27/10/2022 14:34

I have mixed connective tissue disease with all your symptoms another immune mediated arthritis. My friend has similar symptoms, but has psoriatic arthritis. My mum has a Sjorgrens which developed from mixed connective tissue.
I also have fibromyalgia, but those symptoms are different.

Swivellingbrat · 27/10/2022 14:35

My Mum was diagnosed with sjogrens many years ago. Her initial symptoms was a bad taste/dry mouth and dry eyes. 30 years or so later her main symptoms are the lack of saliva and tears.

Your symptoms don’t sound much like her experience.

I developed Adult Onset Stills disease at age 21. The doctors said that most diagnosis is labelling and a lot of autoimmune diseases don’t fit very neatly into a category.

mynameiscalypso · 27/10/2022 14:37

I agree that there's a big overlap between most auto-immune diseases and it sometimes seems to be pot luck as to what you're diagnosed with.

Jakadaal · 30/10/2022 23:18

Am currently waiting to see a rheumatologist for a definitive diagnosis but symptoms are:

Chronic dry eyes (hourly eye drops) and I have punctual plugs in my tear ducts

Chronic swallowing and choking issues and the list of food I cannot swallow is ever growing. Gastroscopy showed nothing relevant.

I was diagnosed with gout/inflammatory arthritis during covid. Blood tests confirmed but now I'm wondering.

Raised rheumatoid factor and associated aches and pains .

Constant dry skin on hands / open sores on the bad days.

IBS or bile acid malabsorption increasing.

Chronic tiredness

Blood tests also showed possible pernicious anaemia.

Lots of different symptoms and lots of crossover. Trying not to pin hopes of a diagnosis but I do like answers!

Good luck OP

Tittie · 04/11/2025 10:19

Sickandtiredofbeingsick · 27/10/2022 14:15

My symptoms:

Tingling, pins and needles, burning in my feet and lower legs (had nerve conduction studies, all normal. Had MRI on back, normal wear and tear for my age, nothing found to be causing symptoms).

Dry eyes, caused by blepharitis and MGD. Optician says they are moderately dry, but with the prescribed treatment they don’t cause me much bother.

Mouth- I don’t have a dry mouth as such (I had this with amitriptyline and it was awful! 😣) but I do get a weird, sometimes persistent ‘feeling’ with my tongue. It’s really hard to describe, but it almost feels dry and sore? This feeling goes into the top/back of my mouth, where it sometimes feels sore for a day or night and then goes again. The feeling also goes down into my lungs, where they feel almost ‘tickly’ if that makes sense? I can take a full breath but it just feels ‘weird’ (had chest X-Ray and came back ‘normal’). Since last night I also have a weird feeling in my throat, it almost feels dry and I have to keep swallowing (scary! 😣). I do have dry lips, too (I also, although very rarely, develop cuts in the corner of my mouth). If I want to create more saliva in my mouth, then I am able to though?

Skin- I have psoriasis, so my skin is already very dry, but I have more recently developed an itchy feeling, that doesn’t appear related to my psoriasis.

Abdomen/Digestion - I developed a pain under both ribs last summer, I was diagnosed with gastritis (just from a nurse pushing underneath my sternum) and given omeprazole. I’m still taking it a year later but I still get these pains on and off. GP thought it could be IBD (calprotectin slightly raised), but I’ve just this week had a colonoscopy and there is no sign of any inflammation? I also get other abdominal pain, especially around my belly button.

I’ve had lots of blood tests, ultrasounds, examinations etc. and everything always comes back ‘normal’ so they’ve ruled out diabetes, thyroid disease, vitamin/mineral deficiencies etc. GP said to me when I saw her recently after my latest round of tests that she thinks it is a connective tissue disorder and has referred me onto the rheumatology department (that will no doubt be a very long wait).

If you’ve got Sjögren's, did your initial symptoms sound similar? I’m sick of constantly battling these symptoms, never knowing from one day to the next how I am going to feel.

Hi @Sickandtiredofbeingsick. I know this is an old thread but I wondered if you ever got a diagnosis? I have lots of similar symptoms.

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