Dry eyes

Posted by maryy @maryy, Jun 10, 2019

I have dry eyes due to sjogren’s syndrome. Does anyone else deal with dry eyes?

@lioness

@marye2 I've had fibromyalgia since the late 90,s Tried ever on the market finally looked into non prescriptions was in a fibro group they suggested isometric exercises and they do also just Light stretching I take magnesium malate. I haven had a flare up in awhi,awhile, but Zim sure you know how it is ,cant do anything and nothing you try helps thank good mine only last 1 day how bout you ?

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Like you, flare ups don't last long. I know when I've goofed with food the next day, and then revert to my usual non-processed diet, low sugar. But with fibro, best to not rest through it; movement is important. I do a daily walk which helps with tight chest muscles. PT was great, and I have the yoga/isometric/pilates stretches from PT. I wish I would do them daily! My hip/sciatica act up when I do not move enough.

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Depending how bad, the dryness is, I have the Systane liquid tears, PM ointment and an RX from ophthalmologist. I just use them as needed. If your eyes are blurry, they are dry, also.

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@lacy2

Glaucoma.org (based out of San Francisco) and many other sites have some good lists of the types of Glaucoma drops, and brand name and generic name of each type of drop and show the main side effects.

I also have chronic dry eyes and floaters from laser surgery for holes in vitreous quite a few years ago, plus glaucoma and aging… have woken to double vision when look at alarm clock etc and optometrist is not concerned; but last May I noticed 2 of husband coming up stairs.
So, when have IPAD on lap and looking at it but glance into distance, i get double side by side; yet if I am, say, looking at a vase on my dresser in distance, and i see my laptop in peripheral vision its double. I asked ophthalmologist about it; she did a few tests (not including eye pressure or checking the angles she had lazered 2 months before) she said to me and i am 77;
'You have the eyes of a 25 year old' and when I said what about the double vision she said, get this… it's age-related. I am not going back and when I sent. note to my Optometrist that i had lost faith in her, he didnt answer but my next appointment was not with him but his partner,,,,What do yo think of that?

i now just try and just look at one thing at a time and keep my mouth shut while secretly being very very worried… but living in a small city and not being able to go back to the teaching hospital that is a leader in the glaucoma field, i have no other choice although my daughter said Mum can you try and make the effort and I will drive you back to Toronto to see Dr. T—- at the hospital and pay for our hotel room… and I believe that specialist will see me again… and maybe I could make the trip once… but if he needs to see me more than once I dont think I can do it..

Bless everyone with illness including eye disease, and especially those who because of circumstances beyond their control are not getting the appropriate treatment. Doctors are not magicians and able to detect and treat every single disease, illness, condition… but from my heart I really doubt the knowledge, sincerity and capability of many health professionals.. especially through lockdowns and covid, ageing patients and burn out… and I find for myself anyway I am almost scared to ask questions or speak up , politely, as it isn't appreciated and I find is sometimes held against me/us… but if you go to a clinic that is well known for its knowledge and care,(and I presume Mayor is one of those places,) you can ask all the questions you like… and in fact they encourage it! Together we're better!!

oh dear, too much typing, can see this line but when i glance back up to read its blurry so goodbye for now..my fingers just wont stop typing…..xxx… take care everyone!

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Opthalmologists are what I go to for my visits, even though Optometrists think they can treat it all. I think it was nice that your Dr traded you to another one to try. Sometimes, just get crossways with a Dr and can't be nicey nice any more! I think you are worth the cost of the trip to Toronto/hotel room. Sounds like you have a fairly complex case and so one does what they must. Take care.

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I have lots of floaters, but at this point they are not worth the procedure, which sounds like it needs more time to get better technologically. They tend to shift around, which is good. They say to look up/look down a few times to dislodge them to somewhere less noticeable. For light sensitivity, which I have, I wear sunglasses (blue blockers are great) and a hat for overhead lights. Fluorescents are the worst for me.

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@ess77

@marye2, et al. This has been a long and really difficult journey with these dry eyes of mine. I now, after many years of trying to find something to give me some relief….it seemed to only get worse and symptoms increased and worsened. After visitng my long-term opthomologist and more of the same, I saw the optomotrist at Mayo for glasses w/prisms for double vision assistance
Welll, I reminded her I have Sarcoid, autoimmune disease since I was 40, I'm 74 now, and it hits the eyes often as it does the lungs; I have sarcoid attacks periodically and am always aware it's there.
Funny thing…I had indications of residual sarcoid in my eyes. Missed by my doc and others…..several months ago I went through a couple of weeks when I actually thought I was losing my eyesight, going blind. It was weird, with wosening and long term blurry sight, dull and just off so nothing was clear. Then it cleared up, then back again and I went for several days with much worse sight, buring, dry, itching, light sensitivity was horrid….she prescribed a couple weks ago a steroid eye drop that is amazing. For the first time in years, I can see clearly, with few blurred times and all the other stuff is far less. Now, I live in Fl and we have everything in the world blooming now, so my allergy eyes are having tough time.

I'm tapering off the steroid drops. using Refresh Dry Eye and Systane Dry Eye as needed duriing day, have used PM jel drops and love them. Alwyas ck to be sure no additives, no preservatives, no thimerisol at all.

Also, this doc suggested warm eye patch compresses daily, and an eye mask at night with warm compresses. If you want to think you've gone to heaven, try it. Works wonders for relaxation of body, but also relaxation and pain removal of eyes. Highly recommend. Try Bruder, ordered on-line, got wipes for lids too. Good stuff.
Wishing you all well on this search. elixabeth

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I have the Sjogrens overlap for MCTD, and dry eyes, mouth and skin with that. Blurriness is dry eyes – I use Systane during the day; PM ointment at night as needed, and Pataday RX when I need to up the game for "crunchy" eyes. If you can find a light weight, not tight, eyemask for nighttime that will help, too.

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@lioness

@lacy2 I keep it in the ref6 use to burn some but it doesn't now Glad you had a better day May I ask about what kind of pain you have ,is it your back.? Mine is 2 back fractures started it all Now it's all lower back stenosis herniated disc nerves in groin area fill on fire especially at night Yesterday I walked to much had a bad night 1Hr,sleep ug

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Have you gone to PT – I have an osteopathic one, who does adjustments. I broke 7 ribs/2 vertebrae a few years ago, have scoliosis and degeneration. But the stretches really help. The one in groin area for me was hip flexion, which was waaay tight. When I do the stretches, I am nearly pain free, despite what is on the xrays. My pain is often due to foot/knee/hip not being aligned as I am on hypermobility Beighton scale. Orthotics and correct pronation of shoes matters – I like walking in water best as it provides resistence without being load bearing.

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@lioness

@loribmt One other thing for the eyelids A friend told me was get some baby shampoo With a q tip dip in and clean eyelids then with other end rinse then dry its was surprising how good the lids feel

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I do a gentle scrub of eyelids in the shower and it seems to activate tear ducts.

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@lacy2

@marye2, lioness Nice to wake up to such a good suggestion… I am overwhelmed with paperwork, filing cabinet full, desk drawer, boxes etc. and mostly from old and not so old medical files but as my memory is going, can't remember where I filed things when I need them quickly…. but sooo many papers in our files now.
I saw my last doctor for about 2 years and he put my file on usb stick when ended relationship… I decided to print as there was no index.. how can doctors these days find our test results etc. looking on computer when no index and they dont know the date? They cant always do a word search if its a report from another doctor or test result as it hasnt been typed into the computer… word search doesnt work on someone else's addition….. Anyway, 500 pages!! including half printed pages, duplicated info., pages with vert little on and errors…. now multiply that by other doctors, specialist visits …. driving me crazy. I do like getting coy of my patient file tho. and here is an example;

About a month ago i got my previous OPTOMETRIST patient file and only got around to browsing through it yesterday and discovered that during the ten years I saw her for eye exams and eyeglasses, the puff test they did on my eyes for pressure each time had readings mostly 20 and often above and up to 26 and they never told me!!!!! At the end of the ten years I was having terribly dry sore red eyes and they sent me to a new OPHTHALMOLOGIST in town….and I wondered why instead of asking me about my dry eyes specifically he hurriedly did the puffer test and immediately put me on Glaucoma drops, with a repeat prescription for 20 bottles; writing on his short report 'SUSPECTED GLAUCOMA.' I only saw this report last night, 2021 and that report was 2017 and I left that optometrist later 2017 and went to another. She never, ever, mentioned my high eye pressure. Not once. NOW high eye pressure does not mean Glaucoma and low eye pressure does not mean you dont have it… but should she not have investigated? Subsequent to leaving her I went to Toronto and top glaucoma specialist and the rest is history…His optimum reading for my eyes was 14 but current Optometrist says 20 max.

. So extra paperwork or not, good idea to ask for a copy of your patient file …here in Ontario they have to give it to yu and whether they charge or no is up to provider…I have never been charged whether put on usb , emailed or printed and mailed… glad I did because I trusted her with my eyes… had I stayed with her, what would my vision be like now.. but there was just 'SOMETHING" about her that soured.,,although very pleasant but so glad I left when I did. J. (Ontario)

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I have MCTD and so lots of baseline tests. But they seem to be labeled CT Head/Chest with a date. I guess Dr. knows what they want to see on the Medical tests. But, usually I just print the things with big changes. The rest resides on my computer, or I give them the DVD/CD to take what they want for their records.

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@marye2

Like you, flare ups don't last long. I know when I've goofed with food the next day, and then revert to my usual non-processed diet, low sugar. But with fibro, best to not rest through it; movement is important. I do a daily walk which helps with tight chest muscles. PT was great, and I have the yoga/isometric/pilates stretches from PT. I wish I would do them daily! My hip/sciatica act up when I do not move enough.

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@marye2 Another thing I've noticed say when I get angry next day I have a flare does your emotions work that way with fibro flares

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@marye2

Have you gone to PT – I have an osteopathic one, who does adjustments. I broke 7 ribs/2 vertebrae a few years ago, have scoliosis and degeneration. But the stretches really help. The one in groin area for me was hip flexion, which was waaay tight. When I do the stretches, I am nearly pain free, despite what is on the xrays. My pain is often due to foot/knee/hip not being aligned as I am on hypermobility Beighton scale. Orthotics and correct pronation of shoes matters – I like walking in water best as it provides resistence without being load bearing.

Jump to this post

@marye2 I'm starting therapy this week hope it helps Wow I'll can imagine the pain with the ribs ouch My Dr is a Osteopathic Dr soiled she has helped a lot Yes exercise helps and if I can get them to show me how for groin area that will be a lot of relief Maybe the hip flexion is what is causing mine Thanks

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Yes, my eye doctor recommended Systane Gel…..not drops. The gel lasts all night!

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I forgot to tell you in prior message, that I also had the eye doctors block my tear ducts. That combined with Systane gel has really helped!

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