Fibro and Sjogrens

[Daisy4444]

Hi everyone, has anyone been diagnosed with sjogrens as well as fibromyalgia? I am struggling at the minute and wondering if I should ask my GP to be feferred back to a rhumatologist as the only treatment is eyedrops I buy myself. Any info would be appreciated. Thanks

[desquinn Partner Volunteer FMAUK Trustee]

The conditions do have overlap within our communities

[spzgirl51]

Hello Daisy4444 ,I have sjogrens and fibromyalgia too.

I was referred to an opthalmologist who diagnosed severe dry eyes.

I had to make repeated trips to my GP who were very dismissive about giving eye drops up until the point where my eyes became so dry that I had two short periods of blindness with excruciating pain because my eyes had become so dry.

They then apologised and became very happy to prescribe me eye drops.

I was told I need to apply drops hourly through the day and have eye gel as well.

My dentist requested a lip biopsy to investigate sjogrens as I did not have the blood markers .

How were you diagnosed with sjogrens ? You should qualify for eye drops and other dry eye treatment from your GP?

Best wishes

[veggiefan70]

I'm prescribed Clinitas Carbomer 0.2% eye gel regularly, by my GP. I've been using it for several years and it does help. I put a couple of drops in each eye before bed and during the day if needed. Gel is a bit messier than drops, but it seems to be more effective for me. I've not heard of it being described as sjorgens by my GP, just as 'dry eyes syndrome'. That's a very useful thing to know, so thanks for that info.

[JayCeon in reply to veggiefan70]

Dry eyes can come stand-alone, or as part of a more generalized sicca-syndrome (in my case mainly mouth, throat, praps esophagus, stomach and skin, sometimes eyes). For it to be diagnosed as sjögren's you'd have to have certain autoimmune bloods and usually a lip biopsy. Despite a suspicion by my centre for rare diseases my lips are apparently fairly OK. And my clinic rheums said it doesn't make that much difference, except having to watch out for lymphomas.

More interesting for me was to realize the sicca syndrome, but even that doesn't get you around treating each sicca part for itself.

For my dry eyes I prefer warming them with rubbed hands, and stroking outwards above and below them with a jar lid (a gentle form of Gua Sha), to get the stagnated tear liquid going again, instead of adding anything.

[veggiefan70 in reply to JayCeon]

Really helpful information. I will try the method of using a jar lid. If I don't use my eye gel, my eyelids become swollen and almost 'stick' to my eyes. Any alternative is useful.

[JayCeon in reply to veggiefan70]

There's lots youtube tutorials, not sure while they're all so long...