Saw my optician on Thursday and been told I've got Sjorgen's

[Kimi9]

I've had eye problems for the past 9 years, sore, very dry all the time, and more recently extremely light sensitive. I've been on so many different combinations of drops and gels, I'm currently on Hylo, Viscotears and Evolve.

I had the plug implants about years ago which really helped, but one fell out and they weren't able to put another one in, then the other plug became really painful after about 6 months and they had to remove it.

At that time I was diagnosed with recurrent corneal eye erosion, as some mornings it would tear off the top layer when I first opened my eyes after sleeping.

This still occurs every few months as my eyes are so drh, and the light sensitivity is really hard to live with.

My optician has now said that I need new tinted reading glasses, and now I also need distance tinted glasses too, due to Sjorgens light sensitivity and photophobia.

She says I can't drive with tinted lenses though and currently wear sunglasses everywhere I go.

How have others managed with prescription glasses/tinted/sunglasses?

Which combination works best?

[25clai]

I have recently moved to varifocal lenses and have had reactive lenses put on to allow for sun glare. I also have anti glare on my lenses. I have just made the switch as, like you I recently was told my distant sight deterioration needed Glasses for driving etc.

I am pleased to have made the move, as I was getting incredibly fed up with changing glasses all the time , trying to cope. I have Sjögrens and long term facial paralysis issues, which affects 1 eye, so have a lot of regular support. The glasses have reduced the pain building up behind my eye, due to strain etc. I have a lot of pain issues with my face, so sorting out this is really helpful.

[Kimi9 in reply to 25clai]

Thank you for your reply, sounds like you're going through a lot. I'm glad you've found a solution that seems to be helping.

It sounds brilliant. So you've just got 1 pair for reading, driving and bright lights etc.?

[25clai in reply to Kimi9]

Yes , 1 pair covers reading, driving and bright lights etc. Much easier.

I got a second pair as well, as spec savers ( Uk retail shop) were offering me a free second pair, but I had to stump up for the lenses . I wanted a different pair of really light frames, to help when pain in my face is worse, so I’ve got a titanium pair as well. The other thing is having a back up pair is handy if 1 needs fixing or gets lost. I just hope my eyesight stays the same for a long time, as it’s not a cheap venture!!

There’s a lot going on with me re health at mo, so decided to treat myself. I really haven’t regretted it though .

[roxanne67 in reply to 25clai]

I had laser punctal occlusion back in 1990, for severe dry eye. I was already in the early stages of lupus, but nobody knew for very long time, until my kidneys started failing.

Since then, I have picked up a few tricks. The 1st one is to always keep baby shampoo in the shower. Every time you bathe, make sure that you get just a little bit of baby shampoo on your fingers and rub your eyes while they are shut to clean the lid and eyelash area, then rinse. This will help unblock anything that is keeping the tear ducts from being able to freely flow. Natural oil buildup and eye mites, can make it worse. I do use a moisturiser around my eyes after I am dried off, because the area can get really dried out from cleaning it that well. I will use something natural like a product from Andalou, or Strivection cream, avoiding the lash line - just a very light coating.

I also only use Almay or Neutrogena makeup, when I do wear some, and use moisturizing makeup remover wipes to clean the eye area and lash line at night. With my eyes closed, I even gently go up into between the top and bottom lashes to get make-up off.

Sunblock from the face can also get in the eyes, on a hot day, and make them burn by early evening.

I have tried a plethora of eyedrops, but the only thing that I really have found works for me is Blink gel tears. I do not like the ointments, because I feel that they are too heavy and can aggravate the problem by clogging the tear ducts with grease. When it comes to anything I put on my body at all, if it says mineral oil, petroleum jelly, lanolin, etc, it's a hard pass, same with coconut oil. Coconut oil does not actually moisturise anything, it merely lays on top of the skin and prevents the moisture that is already there from escaping, but I prefer something that actually works with your skin better.

Recently, I have been able to greatly reduce the amount of eyedrops that I use. This happened when I changed my diet completely, due to developing inflammatory osteoarthritis. I had to go on a low-AGE diet, and I was already on a gluten free and lactose free diet, no HFCS, no artificial sweeteners, no MSG, no GMO's, etc. Now I had to go completely dairy free, and change some of the other things in my diet. It has made dramatic changes to my system in many ways that are very positive, and the arthritis reversed. I believe our diet could be poisoning us and causing things to malfunction, without us even realizing.

You can check out my page called The Truth about Lupus and Autoimmune Disease, on Facebook, if you want to learn more about that. I also have a Gut Health Matters page on Facebook, but it is still new.

[Aquamarine88 in reply to roxanne67]

Interesting post thank u.

I Just did 4 weeks Hyper- Nutrition ( Brooke Goldner ) in desperation as after 2 yrs on hydroxychoroquine I’m not improving although not worsening . So tired of itching.I’ m still in shock my inflammatory markers went from 30 to 23. In the latest bl test since an earlier bl test 3 mths ago !!🙏🏼

Rheumo dr says they should be 14 My energy improved at week 3, I slept tho the nite better ( not waking gasping for breath)

and I think there may be a bit of saliva! Friends say my moods better I say I’ve been given hope!

[ROXY6767]

So sorry to hear you are having such problems. I use a form of gel tears by Blink, they are my favourite, and I have tried many. My sister began using a special eyedrop medicine that they sell now over the counter at Costco. I find the gel tears are especially helpful if you put them in right when you go to sleep. But it sounds like in your case you need the ointment version, for when you are sleeping.

Also, pick up some baby shampoo at the dollar store or wherever you shop, and whenever you bays, or even nightly, make sure that you are taking a bit of baby shampoo, and after closing your eyes and wetting them, used the baby shampoo to rub the closed eye along the lash line and cleanse it, then rents. Keep your eyes closed. This helps a lot to not only kill off the mites and things that live in our lash area and can cause irritation, but it also helps unclog some of the ducts that are not working to deliver tears to the eye. Ever since I started doing this, my dry eyes situation improved quite a lot. I don't have to use the eyedrops as often. My aunt in Florida told me about this technique. Her eye doctor instructed her to do so. I always follow up with a natural cream by andalou, because the shampoo can really dry out the eye area. Just avoid the lashline and apply lightly.

You also may benefit from wearing an eye mask at night, because it is possible that you are also opening your eyes in your sleep, and this may be drying out your eyes. I like to get the eye mask from Amazon that is bubble shaped so that it doesn't necessarily rub against the eye, and smash up your eyelashes. I believe that mask helps me to open my eyes less in my sleep.

Lastly, see if you can get laser punctal occlusion. I had this done at the Shiley Eye Center in the La Jolla, back in 1990. Instead of plugs, the use a laser to close up you tear drains, so that you retain more tears. But they only do the tear drains right in the corner of the eye.

Avoid having fans or air conditioners/heaters blowing at your face. You could also consider using something like a cool mist humidifier in your bedroom at night, so that the air is less dry. Especially in the Winter, cold, low-humidity air can really suck the moisture out of you.

[Aquamarine88]

I’ve been told to put Hydro-Forte drops in at least 2 hourly and keeps the eyes moist -.hard to do!