How often do you get flare-ups?

[KittyCat]

Hi everyone,

I'm finding out more and more about this condition (MGD) every day, with my latest discovery being that I'll have good days and bad days. When I was first diagnosed I thought every day of my life was going to be horrible! My optometrist has described it like arthritis in that it's good days and bad days, and that the aim of the game is to have more good days than bad!

Is this everyone's experience? Periods of flare-ups and then better days?

My main question is, in say a given month, what's the ratio of good days Vs bad for you?

I'm very new to this and so far, I'm not having loads of good days. I'm going for IPL in a couple of weeks, which will be my first actual treatment for this (apart from usual heat masks and drops), so hoping for an improvement!

As always, thanks in advance. Your input is so invaluable to a lot of people!

Cat

[jivgil]

I dont have direct answer for this. But I can say that in good days, or even good hours, I feel optimisitic and that it is going to improve.
On bad times, I am depressed and hopeless. My emotions are so connected to the ups and downs in feeling...

[LindaDawn]

Unfortunately I seem to have more bad days, says 3 or 4 a week and a few slightly better days.

[deep_dry_eye]

i seem to go in cycles, im usually "good", and then every few wks (2-3), i'll hit a rough patch, then i recover and then im "good" again. that's why i sometimes think there might be hormonal factor (even tho i am male).

[KittyCat]

I dont have direct answer for this. But I can say that in good days, or even good hours, I feel optimisitic and that it is going to improve.
On bad times, I am depressed and hopeless. My emotions are so connected to the ups and downs in feeling...

So I suppose when we hit a bad day, we should try to think that we'll get through it and we'll have good days again. I'm trying to mentally prepare myself for what's to come, as I'm newly diagnosed (and 33). One thing I have 100% noticed, is that when my mindset is better, the discomfort is reduced. So I think the key thing for me is going to be to mentally cope with the bad days.

Have you found any patterns that link your bad days? Or do you think it's pretty random?

[KittyCat]

Unfortunately I seem to have more bad days, says 3 or 4 a week and a few slightly better days.

Sorry to hear that Linda! How would you describe a "bad day" and a "better day" for you? And can you link the difference to anything in particular? Food? Hydration? Stress levels? Screen time? Or just random?

[KittyCat]

i seem to go in cycles, im usually "good", and then every few wks (2-3), i'll hit a rough patch, then i recover and then im "good" again. that's why i sometimes think there might be hormonal factor (even tho i am male).

That's really interesting! Have you done a home hormone test? I'm thinking about doing one! I had acne until very recently, which is pure hormone imbalance (but I don't know which hormones!). It would be interesting to find out. And can I ask you the same... What does a "good day" look like for you, and what's a "rough patch" day for you.

[deep_dry_eye]

That's really interesting! Have you done a home hormone test? I'm thinking about doing one! I had acne until very recently, which is pure hormone imbalance (but I don't know which hormones!). It would be interesting to find out. And can I ask you the same... What does a "good day" look like for you, and what's a "rough patch" day for you.

it's hard to get test, because doctors are unwilling to write tests w/o specific symptoms -- and dry eye research is still frontier.

good day ranges from almost normal w/ some occasional dryness, stingy -- a bad day would consist of lots of foreign body sensation, dryness, light sensitivity (but havent experienced that in away)

if you have acne problems, you may benefit from IPL + azithromycin.

[jivgil]

So I suppose when we hit a bad day, we should try to think that we'll get through it and we'll have good days again. I'm trying to mentally prepare myself for what's to come, as I'm newly diagnosed (and 33). One thing I have 100% noticed, is that when my mindset is better, the discomfort is reduced. So I think the key thing for me is going to be to mentally cope with the bad days.

Have you found any patterns that link your bad days? Or do you think it's pretty random?

I find it hard to sleep with this condition.
It is bothering me at night.
Also the stress about it disturbs my sleep even much more.
So lack of sleep makes it harder.
Also environment conditions, wind and air conditioning make it worse.
Wish you much luck
e.g. today I was so depressed, because I discovered I have infection again.
Can't get rid of it.
I told someone in my work about what I am going through.
Then he told be about his difficulties with his knee. It is very painful, and might need to be replaced with metal knee , and I thought actually his problem might be even worse.
Somehow it made me feel a bit better.
I also donated 5 usd to a kid with leukemia, and it also made me feel somewhat better.
It is important to manage the mental side I know...
Yesterday I talked with a friend, and we agreed that my suffering is much more mental then physical...

[KittyCat]

Do you use ointment and goggles to sleep? I use Thealoz Gel and Eyeseals 4.0 and I find that I no longer wake up in discomfort!

Yeah I was speaking to my dad about my diagnosis and how upset I was and he was telling me that he is in chronic pain every single day from a bad car accident. His back is ruined and he has problems with his nerves in his arms and legs so they spasm and send pain all over his body.

A lot of people have problems, and we all have to not let it beat us I suppose. It's very difficult I know, especially during the bad days. But they eventually pass don't they.

Donating money to those less fortunate has been proven to increase our own happiness, that's so lovely of you for doing that!

I do regular meditation using an app called Calm, and there's a meditation programme on it called 7 Days of Soothing Pain, for people who have chronic pain. It's absolutely fantastic, I really recommend it!

[jivgil]

Wow thanks for this.
That kind of you.
I do use gel, and it does help.
Anyway I wake up a few times at night, so I reapply it, so I don't feel pain in the morning.
I have tried Quartz Silicone Shield.
It was too small and uncomfortable
I know Eyeseals 4.0 is bigger, bit I doubt that it would be easy for me to sleep with this.
I will try to use my spare moisture googles and see if it helps.
Thanks for recommending this programm. I will check it out.
I personally listen and meditate daily with Vidyamala burch, and already listened to a few audio books of hers, she has also a short course about pain management on insight timer app .
She is absolutely fantastic .

[KittyCat]

I have a small face and EyeSeals are ok for me! I can even sleep on my side now with them on! I just put a normal black-out fabric mask over the top to provide some cushioning, so that the Eyeseals don't dig into my face when I'm sleeping on my side.

Meditation is wonderful isn't it. When I first started doing it, I didn't think it was doing anything for me. But I started noticing that I felt more anxious on the days that I didn't do it. And I think it takes weeks/months of consistent meditation for it to start having a permanent effect on our brains. It's totally worth it though, and I really think everyone should do it!

Have a wonderful day, we can do this!

[Guest]

I have had 35 years of this and just recently I have been having better days.My eyes feel better but are still red and THAT'S depressing.I don't know what to do about that anymore.Yes I realize there are other things to be concerned about and that there are people with more serious illnesses but looking in the mirror and seeing red eyes looking back is upsetting.I wish I could get past it.