Sjogrens diagnosis - scared. What to expect?

[Lupina12]

My best friend (42F) has just been diagnosed with sjogrens syndrome

She's terrified it's going to rapidly get worse and that she'll have to give up work, won't be able to take care of her young children, etc. She's kind of acting like she's doomed forever.

She is prone to a little bit of health paranoia though, and I'd like to help her feel better about life, but equally I don't want to dismiss her fears...

Has anyone got experience of Sjogrens? How do you cope, can you still live fairly well?

Venus Williams has this diagnosis, and continued to play top class professional tennis for many years after it was diagnosed. She in no way "has a disability".

Like others have said - in the most severe cases, it can cause problems like joint pain and vision problems. But the vast majority of people don't have those problems.

Your friend has obviously looked up the condition and is catastrophising. I do get why she's worrying, because when you look up any medical condition, you immediately see things like 'Some people with this condition suffer from (a whole range of awful symptoms)' but you don't get any indication of what 'some people' actually means. Your friend needs to understand that 'some people' in this instances means a very tiny number and that she's highly unlikely to have symptoms anything like as severe as that.

I've been diagnosed with it for over twenty years. It's been mainly the dry mouth that's impacted my life the most (always carry water) and it's only the last couple of years my eyes are drier and more gritty.

Unfortunately once you get one auto immune condition you end up collecting others so whilst she mustn't be frightened of that, she must also be aware that not everything should be blamed on sjorgens in the future. It is thought my lupus (diagnosed 5 years) and fibro (diagnosed 30 years) is causing my pain, fatigue and brain fog, not that.

Tell her she will be able to look after her children. I managed with sjorgens and fibro, you cope

The Sjogren's Support group on Facebook is great for sharing hints, tips and worries.
There is also the British Sjogrens Syndrome Association which is full of support.
It affects different people different ways. It can be scary suddenly being diagnosed with something few people have heard of.
Some people get away with a few symptoms just being a bit of a nuisance. For others it is far more severe and life changing.
Hopefully she will get a knowledgable rheumatologist and will be helped to manage any symptoms that cause her issues.

I have this secondary to psoriatic arthritis.

It's not true that it isn't disabling, it absolutely CAN be but thankfully for most it is mild/moderate.

These eye drops I've attached in a photo are great, by far the very best I've found. Not cheap though at £12-16 a bottle. If it's incredibly bad then the gold eye drops by the same brand are really good for night time and last longer but are more expensive. If these are not affordable then hypromelose gel is around £3-4 a tube.

Water. She needs water on hand at all times to prevent dry mouth. Xylitol chewing gum is good. You can also get pastilles that attach inside the roof of your mouth to encourage saliva production. But I think they are gross tbh. Lack of saliva is horrible, my tongue has split and bled, my speech is impaired my vocal cords affected. My gums have recessed and cavities increased even though I've used prescription high fluoride tooth paste etc. Oral hygiene needs to be spot on.

Also vaginal moisturiser/lubricant or the hormonal cream to increase moisture as you can get terrible dryness and the change in ph can trigger a Domino effect of thrush/bv/thrush. Some days I was scared to walk to quickly in case it started a fire in my pants. Just awful. It's a horrible horrible illness.

Sorry I forgot the eye drops 🫣

Venus Williams has also talked about her experiences with Sjogrens in depth on her YouTube channel.

@IBlameTheDog whats the verdict on the sea buckthorn oil- would you recommend them? I have seen it come up a good few times on MN

@zippyswife

i took them for about 3 months and didn’t notice any difference whatsoever. Started HRT after that and that did help with some issues, but not the nasal dryness (which is what I wanted sorting!).