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?

My dad has this and he's always worked full time. Just had eye drops and stays hydrated. He developed it in his 30s I think and he had young children to look after. Sjogrens doesn't really impact his life. I have some really nasty diseases that affect my life. Your friend sounds dramatic.

Sjogrens doesn't cause disability or prevent you working. It causes varying severity of dryness (eyes, mouth, vagina) which can be managed by a range of products. It also comes and goes, and for most is an irritant they learn to live with well.

My mum has this! She just finds it an annoyance occasionally as far as I'm aware. She worked full time until retirement and still babysits very her hyperactive grandchildren and functions normally.

Ok this is making me feel much better already - I just need to find a way to tell her!

She said she'd given up googling as she was frightening herself, but I wonder if there are any online resources I can send her to show her she's overreacting?!

Any ideas welcomed, thanks you lovely lot

My grandma had this. She worked until she wanted to retire, always busy and active with grandkids, gardening, cooking and cycling everywhere. I remember she always had a drink nearby because her mouth would get dry and she had to use eye drops. Generally it seemed to be annoying rather than limiting.

A friend has this. There is a good facebook support group which can answer questions. She has however lost most of her teeth - there is mouth inflammation and saliva issues - so she has dentures in her 40s.
The only thing is with one autoimmune disease you seem to be more prone to getting another. Some of them are quite nasty.

I have this. Apart from carrying eye drops at all times it hasn't impacted my life at all.

Thanks for this - can I ask how you were diagnosed, was it just the dry eyes?

Also may I ask how old you are?

My friend is terrified she will get severe joint pain and brain fog

Gosh, losing all her teeth does sound horrendous, poor thing.

I know a severe dry mouth was one of my friends first symptoms, she says she cant eat crusty bread for two weeks of the month (there must be a hormone connection for her, I'm guessing)

It was diagnosed during a routine eye test and I was sent to the hospital for a further look. I'm in my early sixties, had it about ten years, I guess. I also have rheumatoid arthritis and they often go together.

I have Sjogrens and I am affected by the joint pain and fatigue. I do work full time though.
I see my dentist every 4 months to maintain my teeth and use a fluoride toothpaste in the evenings and floss every night.

I've had my tear ducts cauterised to preserve what little tear production I do have and see the eye specialist once a year.

It's easily manageable and doesn't stop me living my life.

My mum has had it since her 40s. Now she is 88, so about 40 years. She uses eye drops, artificial saliva etc.

She takes it in her stride. She has had gastro stuff but the worse thing for her has been the deterioration in her teeth in the last few years. She was always rather vain.

My mum is fully mobile, she has all her marbles and was driving until a few months ago.

When she first had it she joined a society for sufferers which was full of doom and gloom and competitive suffering. Just tell your friend to get on with life, just learn to manage the symptoms.

What kind of a comment is this?

“how pathetic your friend is, all my diseases are way worse!!!”

empathy I think it’s called

I have this. Oralieve is good for keeping mouth moist and xlyomelts (sp?) are great for stimulating saliva flow. They’re little minty things that you tuck in cheek and they stick to gums, sweetened with xylitol so not harmful to teeth, I understand. they last for hours so keep mouth moist. Only found them on Amazon.

hydrocare eye drops and hydrocare eye gel at night keeps dry eye at bay, available from boots.

after shower, vitamin e oil on finger…. Sorts vaginal dryness. H& Barrett.

Generally eat healthily, strict limit on upfs, empty calories, etc, try to get good sleep and regular walks.

I don’t understand why she’s so scared - I’ve got lots and lots of complex autoimmune issues as well as Sjögren’s and yes it’s annoying (I have it quite severely; dry eyes, invasive Candida because of the dry mouth and dry vagina etc etc) but it is probably the thing that bothers me the least overall. I also have lupus which often overlaps with Sjögren’s and that gives me far more trouble. I think she needs to step away from google and deal with each day as it comes. I was diagnosed at 37 and I’m now 43. It affects people differently in terms of severity.

I can’t eat anything hard or crusty at all- no crisps, no sharp chips or anything like that. You do sort of get used to it though. I don’t find any of the mouth sprays etc useful. I’m under an oral specialist at the hospital.

I can’t link to it but there’s also a group on Facebook called “sjogrens support U.K.” which is very good.

There's some terrible misinformation on here.

I have a number of autoimmune conditions,one is Sjogrens. Sjogrens absolutely can go for every part of you and there is a group of us who have some horrific problems, including neurological. I do however feel that this group of us are in the minority of Sjogrens sufferers.

The problem with Sjogrens is that there just aren't many effective treatment options. Say unlike Inflammatory Bowel Disease where there are a variety of immune modulating treatments.

I think it's best your friend doesn't go looking too much on the internet. Maybe she has seen the actual truth online regarding how vicious this condition can be and she worries she will be in that category too. I really believe based on every group I'm on that it's a smaller percentage who are significantly impaired like myself.

The majority of people with Sjogrens just find the condition annoying, but it doesn't stop them from living their life. For most it just makes your eyes and mouth dry. Unfortunately the diseases I have do stop me from living life to the full which isn't great as I'm only in my 20s with a toddler.

@Lupina12 https://www.nhs.uk/conditions/sjogrens-syndrome/

I have Sjogren’s amongst some other conditions. It’s unpleasant and tiresome but it doesn’t stop me from doing what I want. I have dry eyes, dry mouth, joint pain, gastro issues, brain fog and fatigue.

Without a doubt it had an impact on her life and career but, as positive story, Venus Williams still won a Grand Slam singles, two Grand Slam doubles and an Olympic gold and silver after she was diagnosed with Sjogren’s. She says she was aware of symptoms of it for seven years before diagnosis but still played at the highest level and was very successful during this time.

Hopefully your friend won’t find things as difficult as she is fearing.

That's really fascinating about venus williams, thank you

I have it along with other things. I'm not exactly a high flyer and currently working FT.

I ache a lot which isn't great but it's the dry mouth I find equally, if not more difficult to deal with.

Brain fog - I was diagnosed at around the same time as the menopause and it was hard to tell what caused what.

Life goes on though.

This post isn’t about you or your diseases though is it? And for some with sjoren’s it can be absolutely life limiting.

Tell your friend to try Sea Bucktthorn oil or capsules. They're supposed to help lubricate the body's mucous membranes. It's pricey but supposedly very good. I'm only a few days in so can't say yet!

You don’t need to play disability or illness top trumps. It is absolutely normal to have empathy for someone with a less serious condition. They are entitled to their feelings without being dismissed.