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Original poster

Sjogrens diagnosis - scared. What to expect?

34 replies

Lupina12 · 08/08/2024 14:37

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?

OP posts:
Original poster
Lupina12 · 08/08/2024 15:14

Pinkprescription · 08/08/2024 15:10

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.

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)

OP posts:
Original poster
Lupina12 · 08/08/2024 15:13

StillSmallVoice · 08/08/2024 15:10

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

OP posts:
StillSmallVoice · 08/08/2024 15:10

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

Pinkprescription · 08/08/2024 15:10

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.

HighHeelsOnCobblestones · 08/08/2024 15:05

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.

Original poster
Lupina12 · 08/08/2024 14:54

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

OP posts:
spiderdave · 08/08/2024 14:48

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.

TheYearOfSmallThings · 08/08/2024 14:45

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.

Berryberries · 08/08/2024 14:41

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.