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Don’t think I can carry on living with dry eye syndrome anymore

98 replies

Bethnalgreenbeth · 16/02/2023 08:21

Been awake since 5am
eyes been running my life

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Bethnalgreenbeth · 16/02/2023 08:23

Seen optician a million times
taking omega 3 and used every eye drop or gel and ointment under the sun
nothing really works

my eyes stopme from sleeping and they have really ruined my life
look really old and haggered now and I’m only mid 40s
jist can’t keep going anymore

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ButterBastardBeans · 16/02/2023 08:24

Have you tried the carnivore diet?

Fraaahnces · 16/02/2023 08:25

Do you have Sjogren’s? You might need to see a rheumatologist. Do you have any other symptoms like a dry mouth? Any other autoimmune issues?

SweetSakura · 16/02/2023 08:25

I feel for you. I have had times when mine were like that.

Have they investigated the cause of the dry eyes?

stevalnamechanger · 16/02/2023 08:26

Heated eye mask?

There's a really good support group on fb . Message me and I can send you the details a lady shared with me

Bethnalgreenbeth · 16/02/2023 08:26

Really painful and achy weak arms

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Bethnalgreenbeth · 16/02/2023 08:26

And a bit of a dry mouth too

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HolibobsinApril · 16/02/2023 08:27

Oh you poor thing. I had a bout of corneal erosion from dry eyes for about 9 months and it was horrific. Turns out it was our open fire that did it. I also lived in a very dry part of the country.

I found Vitapos extremely effective. I also moved to a coastal location and it has helped.

I do feel for you, it's miserable, I hope you find a way to get back to normal.

Bethnalgreenbeth · 16/02/2023 08:27

Yes tired heated eye mask and peep eye wand
mask seems to make the inflammation
worse

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SweetSakura · 16/02/2023 08:27

That does sound like it could be sjogrens

underneaththeash · 16/02/2023 08:28

Make and appointment and ask for a referral to the dry eye clinic at the nearest large hospital. Have you tried punctal plugs? Some opticians can fit those - they help to conserve the tears you already have.

Otherwise the hospital will have access to a drug called cyclosporine, the very large eye hospitals can also make an autologous serum from your own blood to treat very severe dry eye.

Make an appointment with your optician or gp and ask to be referred.

MissWings · 16/02/2023 08:28

following. I’ll be back in a bit with some advice. Mine started a few years ago and it was HORRIBLE, it seriously affected my whole life. It’s under control now and il be back shortly to explain what helped.

Bethnalgreenbeth · 16/02/2023 08:29

its so painful at night and I just can’t sleep

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Sophoclesthefox · 16/02/2023 08:29

Oh dear, poor you, you sound miserable and no wonder. It’s a horrible disease.

have you sought a referral to a specialist ophthalmologist? I only got mine under control with punctual plugs, ciclosporin and scleral contact lenses, but a regular optician would not be able to help there, it needs to be a specialist. Also I have a routine of hot compresses and a heated eye mask put on over vitamin a ointment at night. Minimal screen time, moisture chamber glasses and sometimes a humidifier also help.

really feel for you, it’s so wearing.

Bethnalgreenbeth · 16/02/2023 08:32

I’ve ask my gp to refer me but I think she’s going to be tight and say no

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WombatsAndGumTrees · 16/02/2023 08:32

Please find an optometrist who does IPL and see if it would help you. I've had this done on my eyes when they were dry and they are fine now.

Bethnalgreenbeth · 16/02/2023 08:34

Asked to be tested for sjogrens
only thjng she could select for testing at the surgery was anti nuclear

couldn’t add on anti ro and anti la

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HelloVeritas · 16/02/2023 08:34

I have this too, it's awful Flowers

Bethnalgreenbeth · 16/02/2023 08:35

i can’t sleep, there’s a lot of things I can’t do with my kids, and I’m in pain with it all the time

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Bethnalgreenbeth · 16/02/2023 09:04

Last blood test showed up mild neutropenia

which is low white blood cell count

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MissWings · 16/02/2023 09:12

I know you said you have tried every drop under the sun, but have your tried systane drops, preservative free? They’re in a green box from boots and they are the only drop that really brings relief. They are like a gel consistency.

Believe me, I have tried every drop and ointment under the sun. You have to tweak what works for you. If you are regularly using drops which I assume you are don’t touch any drops with preservatives in as they can actually damage your tear film. They’re only really for mild dry eye and occasional use.

The ointment and heat actually make mine worse, (but cold can be good for mine) but I alternate between systane preservative free (the vial has quite a lot in and I make it last the day) and then I can top up with the red preservative free drops which I’m sure you’ve already used. Also if you keep your eye drops in the fridge they feel very soothing in the eye and the cold temp is good for inflammation.

You might have a coexisting condition like blepharitis. Again I tried all the foams and creams and they all irritated my eyes even further so now I wipe in the morning and evening with garnier miccelar water from boots. It seems to really clean my eyelids as mine get quite oily.

It is a lot of trial and error. I once seen an optician who really suffered and she said it can take the tear film a long time to heal and she had personal experience of it. Mine are 100 percent worse when I am stressed and when it initially came on I was going through an unusual amount of severe stress. So there may also be a bit of a link there.

I hope you manage to find some relief, I use drops every day but they only usually get really bad now late at night when they really dry out and obviously computer work is incredibly irritating. It’s a very frustrating thing to live with, but it can be managed. It just sounds like you are in the acute phase at the moment which can last for many months but don’t give up hope.

Mammillaria · 16/02/2023 09:14

You poor thing. I don't know how old you are, but could it be linked to menopause/peri menopause?

Paturday · 16/02/2023 09:15

This sounds v familiar to me OP, I’m really sorry you’re suffering too! You need to see a rheumatologist. I have just been diagnosed with Undifferentiated Connective Tissue Disease and along the way was tested for sjogrens, lupus etc. so it could be a number of things in your case. The rheum was so validating and kind and has helped me and continues to. You just need to get past the GP.

Bethnalgreenbeth · 16/02/2023 09:27

Should I make a formal complaint about the gp if she doesn’t refer me properly

i honestly honestly cannot cope anymore

I'm mid 40s

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Bethnalgreenbeth · 16/02/2023 09:29

Could the mild neutropenia be a hint towards anything ?

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