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

[Bethnalgreenbeth]

Been awake since 5am
eyes been running my life

I would push for a referral to both the rheumatologist and the ophthalmologist. The ophthalmologist can organise any scans and tests required and that will be available if you need to see the rheumatologist.

*Don’t add warmth to dry eyes.
**I think you need an eye gel as opposed to a drop. (A slimier, thicket consistency that will stick around to lubricate your eyes overnight.) Not sure your GP has a clue what this is like. (I have Sjogren’s. Much empathy.)

Here
this is what it says on moorfields website 😰😰

Does your GP know about your weight loss? Surely that on its own warrants further investigation?

Yes I’ve told her
and she didn’t even write it in the notes

Following as I have dry eyes but I'm under opthalmology as my opinion referred me. Didn't need to involve my gp

The further weight loss would indicate to me a thyroid problem. I had an over active thyroid, lost weight and then the problems went to my eyes. I don’t live near Moorfields, but I make the commute. X

What happens with really bad dry eyes is that an inflammatory response occurs. Once this happens, no amount of lubricating drops will help. By this stage you need steroids or cyclosporin or antibiotics to tackle the inflammation.

However, the other cause of pain, especially at night, is that the cornea is slightly damaged and hurts when your eyelid is touching it (ie when your eyes are closed). In this case you need to lubricate the eyes like mad and over time the cornea will heal. This can take weeks or months and if there is inflammation you may also need the drugs that an ophthalmologist can prescribe.

OP, there are treatments and you will be pain free again with the right drops/meds. Good luck

Yes definitely try the Systane in the vials. Put them in the fridge. They offered me steroids due to severe inflammation but these did the trick and I was reluctant to accept the steroid drops to be honest.

Combine the systane with the red hycosan this is what an optician told me and she herself said hers were really bad. I’ve tried all those drops on your list and systane defo superior . Basically you’re not going to get anything better over the counter. Good luck.

Make sure you go back to your GP, push for a referral and if they say no then ask for it to be documented. Make sure you say I want it on my notes I asked for a referral but it was declined.

I had horrendous dry eyes, and fatigue /pain, which was resolved for me by probiotics. Appreciate there can be many causes, but whilst your pushing for referrals it might be worth adding a high strength probiotic to your supplements to try list. I was amazed at the issues they helped me with, some like dry skin and dark circles I just viewed as ‘me’. Worth a try. It might be worth writing to the gp too if they refuse a referral.

You need to demand a referral or a second opinion, or both. This GP is useless.

Peri-menopause?

I had what I thought was dry eye syndrome since I was in my 20s. Tried all the drops and therapies under the sun. Was under the eye hospital for it.

In a moment of desperation, and after much googling, I tried an antihistamine (Fexofenadine) and, lo and behold, my eye problems disappeared! It wasn't dry eyes, it was an allergy, either cats or dust mites the eye doctor reckoned. My life has been transformed now and I only use Hylo Night ointment overnight for a corneal scar.

Also, check you haven't got any ingrown eyelashes that are scraping on your eyeball as that causes a lot of pain as well. Specsavers do an eye clinic that will check this for you.

I have to use antihistamine eye drops if I wear any facial foundation as I'm allergic to makeup and facial products. I can only use Cerave facial wash and Cerave moisturiser on my face.

Hi @Bethnalgreenbeth sorry you're going through this 😔
Could you try these supplements (pic below), i really hope they will help you x

@Bethnalgreenbeth sorry should have said you can buy them in Boots or Superdrugs x

Have you managed to find anything appointment-wise, OP?

Have you tried HYLO night? It worked wonders for me.

I started with dry sire eyes, went to the optician who sent me straight to eye casualty, I'm permanently on Carmellose drops & Xaillin gel at night, I also had to have antibiotics & steroids drops for a month. I got told that I was close to losing my eyesight.

I have Sjögren’s syndrome. Carbomer eye gel every day minimum of 3 times a day. Hot flannel on my eye as hot as I can stand on my skin at least once a day, I keep putting flannel in really hot water the put it press it right in to my eyes.
I massage it after the hot flannel treatment. The hot flannel massages really give relieve. If my eyes are bad I do this as often as I can in a day.
I don’t wear mascara or any eye makeup very often. If I do I really clean it off when I get home and expect to have a few days with eyes being really dry and sore. Usually only wear to weddings now.
Try getting the optician to get you a referral.

I had dry eyes, it felt like one eye had a few pieces of grit in it, the other one like there was a hair in it. When I closed my eyes to sleep it felt like my eyeballs were being scratched- one night I thought I'd have to go to hospital as it was so bad.

I saw the doctor and was prescribed various different creams and drops and nothing worked. If I opened my eyes suddenly in the morning, that really hurt as the surface of my eyes had dried out overnight. Hot flannels did work sometimes but not all the time.
I found some eye drops in Asda of all places, called dry eye drops, cost about £2.50 ish, though that was a while ago. I used them every night and also put a smear of ordinary vaseline along my closed eyelids. I'd read somewhere that it worked, and by that time if someone said wiping cow shit on your eyelids helped I'd have been out in the fields following cows!
It took a while but it actually worked. I don't use the drops now but I still put a smear of vaseline on my eyelids every night and I've never had any recurrence. If I remember, it started when I was peri/ menopausal so it could be that for you. Worth a try?

@Bethnalgreenbeth I was lucky that my gp ran some autoimmune tests for me after a miscarriage and because my mum has lupus. They showed positive Ana and then when the sample was tested further, anti Ro too. I went private to see a rheumatologist in the end, I think it was about £200, he tested the dryness of my eyes, felt my abdomen and looked at my feet (from memory) then ordered a few more tests. Might be worth making some enquiries privately, getting some quotes for an appointment and some tests. The waiting list on nhs would have been months and months.

I've got the same thing I have to use the most waxy stuff in them

Have you tried hycosan plus?

I also have another sort of gel I put on top of my eyes

It's impairing my vision it's unbelievable bad

I really feel for you
I have blurred vision double vision pain the lot

Hi OP, how are you today? I was coincidentally searching for threads about dry eye syndrome and yours popped up first and I saw it was only a couple of days old. I totally empathise - my periodically dry eyes have suddenly worsened since Christmas when I had an allergy which made my eyes puff up. That took ten days to subside and I was left with the dry eyes. Things were starting to improve with the treatment regime suggested by the optometrist, but a couple of weeks ago I had another allergic reaction after an insect bite and the eyes are worse then ever. I'm experiencing similar to you - it's just bloody constant.

I'm now looking into the links between allergic reactions with puffy eyes and subsequent dry eyes and it seems there is one. And that's led me to perimenopause and progesterone reduction with allergies - again it seems there's a link. So my next port of call is a sympathetic GP who has an interest in menopause symptoms, and hopefully some HRT. When I last mentioned peri to a GP, she asked if I was still having regular periods and when I said yes, she said I couldn't be perimenopausal then. Riiiiiiiiiight 🙄

(I was never a huge Davina McCall fan but I love her for the spotlight she has shone on menopause symptoms. Hopefully that particular GP might be a bit more enlightened now)