My dry eyes are driving me nuts.

Uhura

Member
Joined
Mar 20, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
01/2007
Country
US
They burn and sting. I take a prescription eye drop. I take Systane gel drops all days and also Genteal ointment several times a day even though the ointment is meant for night. Opthalmologist said to use the Systane and Genteal as often as I need it. I take a Systane nighttime ointment at night. I use a wet cloth on my eyes daily and do a gentle eye scrub and keep the cloth on my eyes (as doctor said), I take Omega three since I am a vegetarian. Also as the doctor ordered. Omega three is like fish oil for vegetarians. I have tried Ristasis and it didn't help. I have tried another prescription one that starts with an I that I can't remember the name of. I have plugs in my eyes. I eat ok and drink plenty of water. I have had this for a couple of years and it keeps worsening. I have been told I have blepharitis but I think it is more than that. No matter what it is, I am sick of it. I have no other symptoms of Sjogren's Disease. Vision is never really clear but gets worse as the day goes on. Pain is almost constant and worsens as the day goes on.

Ideas? Anyone with similar experiences?
 

Uhura

Member
Joined
Mar 20, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
01/2007
Country
US
I don't know how to edit my above post but do want to add that I was a vegetarian (I do eat dairy.) many years before I got fibromyalgia. Maybe 20 years. And I was diagnosed with fibromyalgia about 5 years or so before I started having eye problems.
 

Rhyl

Active member
Joined
Aug 15, 2020
Messages
42
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
KY
I also have dry eyes. Work on the computer or reading makes it worse. I don't use ointment, because it burns and makes it worse. I use Systane (sometimes) and generic OTC eye drops. My eye doctor told me to use them 4x a day, but I don't always do that (and notice!).

Why do you think you have something "more" than blepharitis. I don't have it, but I hear it can be chronic, with frequent flare-ups, and very annoying and uncomfortable. Do you clean your eyelids?

Have you gone for a second opinion?
 

Charz

Member
Joined
Dec 21, 2019
Messages
15
Reason
DX FIBRO
Diagnosis
03/1980
Country
US
I would go for second opinion. Be sure your eye drops don't have preservatives. Do you wear computer glasses? Can it be migraines?
 

Peachy

Member
Joined
Jan 14, 2021
Messages
24
Reason
DX FIBRO
Diagnosis
06/2017
Country
CA
Hello. I suffered with painful burning dry eyes for a number of years. It was awful. So painful. I was diagnosed with blepharitis but in the end, it was actually ocular rosacea. The rosacea started to appear on other parts of my face and I finally got a diagnosis from a dermatologist. What fixed it for me was, and you probably won’t like this, removing all chemicals from my eyes. That meant no more make up mascara and no cleaning products. I just use a very mild boric acid solution in distilled water and a cotton pad and that keeps the ducts in my eyes unblocked and so properly lubricated. Note, boric acid is not the stuff you do your laundry in. There is a gentle powder solution you can get in the pharmacy that is pharmaceutical grade. Your pharmacist can show you if you need. It kills any bacteria. worked for me. Have to be super careful though. I don’t touch my eyes or put anything on them or strain too long. Air-conditioning and drafts trigger them too. Another great trick is a moist eye pillow that you heat in the microwave and place on your eyes for 10 minutes. Again, they are designed for dry eyes and you can buy them online or in Pharmacy. It unblocks the ducts and keeps everything healthy and properly lubricated. Not saying you’re the same but just want to give me some hope that after much pain and discomfort, I was able to figure mine out and heal them. I do miss my mascara and eyeliner but I’d much rather not have burning orbs in my eye sockets. Best of luck.
 

Jemima

Distinguished member
Joined
Jul 30, 2020
Messages
195
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I have had this for a couple of years and it keeps worsening. I have been told I have blepharitis but I think it is more than that. No matter what it is, I am sick of it. I have no other symptoms of Sjogren's Disease.
Hi Uhura,

That sounds absolutely awful, and I can only imagine how frustrated you must be feeling! It also sounds as if you've gone a long way down the path of potential treatments - I'm so sorry you haven't found something to alleviate what you're dealing with so far.

According to Wikipedia:
Dry eye syndrome (DES), also known as keratoconjunctivitis sicca (KCS), is the condition of having dry eyes.[2] Other associated symptoms include irritation, redness, discharge, and easily fatigued eyes. Blurred vision may also occur.[2] Symptoms range from mild and occasional to severe and continuous.[3] Scarring of the cornea may occur in untreated cases.[2]

Dry eye occurs when either the eye does not produce enough tears or when the tears evaporate too quickly.[2] This can result from contact lens use, meibomian gland dysfunction, pregnancy, Sjögren syndrome, vitamin A deficiency, omega-3 fatty acid deficiency, LASIK surgery, and certain medications such as antihistamines, some blood pressure medication, hormone replacement therapy, and antidepressants.[2][3][4] Chronic conjunctivitis such as from tobacco smoke exposure or infection may also lead to the condition.

I imagine your doctor has already considered it, but could you be on any other medications that might be causing issues? Another site I looked at suggested Vitamin D and Vitamin B12 as possible nutrients to supplement.

I also just stumbled onto a forum called The Dry Eye Zone where there was a discussion about food allergies/intolerances causing these kinds of eye issues. One member shared that after living "with 3 years of red, burning, itchy, tearing, light/wind sensitive eyes," his symptoms disappeared completely when he cut soy out of his diet. There are so many potential food triggers for us all - a well planned elimination diet could help you rule that out. I also imagine that rotating the cleaning/laundry products you use could help you eliminate a chemical sensitivity (chemical sensitivity can be a common companion of fibro, according to the Living Smarter With Fibromyalgia website)

I wish there was more I could suggest! I hope you find something that helps soon 🌼
 

Gardener

New member
Joined
Jul 14, 2021
Messages
1
Reason
DX FIBRO
Diagnosis
03/2012
Country
US
State
CA
They burn and sting. I take a prescription eye drop. I take Systane gel drops all days and also Genteal ointment several times a day even though the ointment is meant for night. Opthalmologist said to use the Systane and Genteal as often as I need it. I take a Systane nighttime ointment at night. I use a wet cloth on my eyes daily and do a gentle eye scrub and keep the cloth on my eyes (as doctor said), I take Omega three since I am a vegetarian. Also as the doctor ordered. Omega three is like fish oil for vegetarians. I have tried Ristasis and it didn't help. I have tried another prescription one that starts with an I that I can't remember the name of. I have plugs in my eyes. I eat ok and drink plenty of water. I have had this for a couple of years and it keeps worsening. I have been told I have blepharitis but I think it is more than that. No matter what it is, I am sick of it. I have no other symptoms of Sjogren's Disease. Vision is never really clear but gets worse as the day goes on. Pain is almost constant and worsens as the day goes on.

Ideas? Anyone with similar experiences?
Try LDN low dose naltrexone for fibromyalgia and it has completely cured me. I just read there IS NALTREXONE eye drops for dry eyes. I’m planning to ask my doctor about the eye drop because I’ve started to have pretty severe dry eyes.
 

Uhura

Member
Joined
Mar 20, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
01/2007
Country
US
Hi.
I don't wear make up so know that isn't the problem. I have tried preservative free eye drops and that doesn't make a difference. They do nothing.
As far as fibromyalgia, not all my pain is consistent like the eye pain is. I can tell when I overdo it, that causes fibromyalgia. My glands are sore and that is from it. I use a humidifier at night. When I am on the computer, it is typing with my eyes closed and only opening them for spell check at the end of what I am typing. I know where the letters are. I can ask about Naltrexone drops. I have tried all the other stuff suggested except haven't considered allergy. I will have to think abut what I eat. I don't eat soy but will think about other things. I have seen three different ophthalmologists.
Thanks.
Jemima, I will look into that forum.
 

Jemima

Distinguished member
Joined
Jul 30, 2020
Messages
195
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I have tried all the other stuff suggested except haven't considered allergy. I will have to think abut what I eat.
I did an elimination diet last year to test myself - it's kind of annoying, but not too tricky to do.

Classically, you strip most things out of your diet and then reintroduce them one by one, with 2-4 weeks in between. Alternatively, you can cut out one thing for a while, and if you don't feel a difference reintroduce it and eliminate something else. Common food triggers include wheat/gluten, sugar, dairy, nightshades (potatoes, tomatoes, eggplant, bell peppers etc), alliums (garlic, onions, leeks etc), caffeine, certain fruits and nuts, and pulses. It's worth doing some reading, because there are a lot of possibilities, but also a lot of guides you can follow! I also tried a Keto diet and a Fodmap diet. Good luck if you decide to experiment!
 

Peachy

Member
Joined
Jan 14, 2021
Messages
24
Reason
DX FIBRO
Diagnosis
06/2017
Country
CA
I did an elimination diet last year to test myself - it's kind of annoying, but not too tricky to do.

Classically, you strip most things out of your diet and then reintroduce them one by one, with 2-4 weeks in between. Alternatively, you can cut out one thing for a while, and if you don't feel a difference reintroduce it and eliminate something else. Common food triggers include wheat/gluten, sugar, dairy, nightshades (potatoes, tomatoes, eggplant, bell peppers etc), alliums (garlic, onions, leeks etc), caffeine, certain fruits and nuts, and pulses. It's worth doing some reading, because there are a lot of possibilities, but also a lot of guides you can follow! I also tried a Keto diet and a Fodmap diet. Good luck if you decide to experiment!
The diet connection is a useful point too. I’m on a nutritional keto low inflammation diet and it definitely makes a big positive difference to my skin and eyes.
 

aclarkwhitman

New member
Joined
Jul 24, 2021
Messages
4
Reason
DX FIBRO
Diagnosis
04/2014
Country
US
State
GA
It’s not much, but I’ve had some luck with a combination of Systane and new eyeglasses with the blue light filter. Like you said, it’s not my makeup, the dryness is the same with or without eye makeup.
 

Uhura

Member
Joined
Mar 20, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
01/2007
Country
US
I have glasses with a pink tint but have had them since before my eyes started doing this. Do you think one color works better than another? I find pink helpful with lights not seeming so bright. I have problems with lights that flicker from epilepsy.
 
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