Sjögren diagnosis no sicca

[Pinkpiggy1]

I have just been diagnosed by my rheumatologist as having SS. I’ve had positive bloods over the past 2+ years and symptoms of fatigue, aching joints etc. I never considered SS before due to the fact I don’t suffer from dry eyes or mouth. Is this something anyone else has experienced?

[Tally]

Absolutely all the time and truly my body aches with Sjorensand Fibromyalgia plus the other associated. SS for 11 years but now dry mouth is woeful. Take care .

[jane1964]

Hello I wasn't really aware of a dry mouth but an ultrasound of ny salivary glands showed damage I do however have an area of my mouth which feels strange.

[weathervane in reply to jane1964]

Hi jane , ive same problem with salivary gland , one side is quite damaged. I have to massage my cheek regularly as it blocks and swells up which is unpleasant , my face feels numb when this happens. I do have a dry mouth but i try to manage it

[birdman23]

Hi, I was diagnosed with Sjogrens about 6 years ago and so far only have dry eyes and mouth, which seem to be the classic symptoms. Maybe you should get second opinion if these symptoms are totally missing from your diagnosis? Best of luck.

[Hidden in reply to birdman23]

I actually think it’s the other way around birdman23 - Sicca is the dry eyes and mouth but Sjögren’s is always a systemic disease. I’m actually very reassured that a rheumatologist hasn’t just relied on Sicca being present to diagnose Sjögren’s.

[Megansheart]

Dry eyes and dry mouth were NOT my presenting symptoms at all.

Crippling fatigue (now mostly resolved), excrutiating joint pain, balance problems, nausea, paraesthesias, muscle stiffness and fasciculations were however my initial symptoms.....but it took eight years before diagnosis because my bloods (ANA's and ENA's) were negative.

Dry mouth and dry eyes were very subtle presentations which emerged more gradually over time. Dry mouth is only moderately bad and dry eyes are now worsening.

So many doctors are unaware of the multifactorial involvement of diverse body systems in this condition and (too) many people with this condition (SjS) often initially get told they have fibromyalgia......I am of the opinion that those very symptoms of ‘fibromyalgia’ are actually intrinsically part of SjS not fibromyalgia.

[Lucyand in reply to Megansheart]

Hi just wondering what you have done for the crippling fatigue. I also have the same symptoms as you.I am not on any medication yet. ANAs very positive at the moment. Going to Rhuematologist this month to see whats next.

Thanks for your time, any ideas is good.

[Megansheart in reply to Lucyand]

For me the crippling fatigue lasted four months from Aug to December back in 2007. For those months I was mostly in bed. Gradually the fatigue started to lessen until I would get perhaps one day per week when I was flattened by the fatigue, then one day every few weeks. These days I may get one quite bad day every few months......which I can't complain about.

Initially I didn't do anything as I was too sick to source anything. Later I started to take Acetyl-L-Carnitine (I used a powdered/crystalised form) which made a huge difference within hours of taking it.

Once my ANA's and ENA's tested positive in 2015 and I was referred to a Rheumatologist, I started on Hydroxychloraquine (Plaquenil) which further improved my energy levels.

For the past six months I have been on Methotrexate and in that time I've kept up a pretty gruelling schedule getting our house ready for selling, the actual selling process, looking for another house, packing and then almost two weeks ago my mother's death. Admittedly last week I woke up one morning (three days after her death) to find I was physically glued to my bed with pretty bad fatigue coinciding with cold sores erupting all over my lips (a sure sign of stress for me). However that extreme fatigue only lasted one day and the next day I was fine. The cold sores are almost gone now.

So these days I’m very blest that the fatigue doesn't appear very often.

[Hidden]

This is really interesting for me because I’m always annoyed that most rheumatologists won’t diagnose Sjögren’s apart from when someone has a positive Schirmers and the related antibodies. I do have Sicca and have always had it - especially bad just now.

But then I’ve always had external dryness everywhere so am used to it. It’s the internal dryness that has floored me most and the related neuropathy everywhere.

I was diagnosed as hypothyroid years ago and then with RA seven years ago. It turned out that it was Sjögren’s rather than RA.

Now it does a fairly good job of mimicking MS.

So actually it’s quite positive to think that a rheum can see Sjögren’s for the systemic disease it is rather than as “just” dry eyes and mouth.

It’s high time perceptions changed amongst medical practitioners. Yours sounds good.

According to the SSF

“Q. What is Sjögren’s?

A. Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas.”