I'm a Newbie, Saying Hi and Telling my Story

[shoebox]

Uhm, let's see...
I turned 30 this year. Last year I finally was diagnosed with Fibromyalgia, after having a great deal of unexplained pain since 1999, maybe even before that. Took a friend with Sjogren's to say "rheumatologist" before I discovered where to get an answer.
I've had dry eyes for as long as I can remember...my eyes have never closed all the way when I sleep (I have big eyes!). Been checked for Thyroid issues, nothing. Seems to just be genetics.
A couple of years ago I wanted to try contact lenses (I didn't realize my eyes were so dry) and it was AWFUL! I had the doctor look, and he said typical eyes dry out in about 8 seconds. He said I had dry spots on one eye in 5 seconds, and the other eye in 3 seconds, and said to use ointments at night and drops during the day (he wasn't specific). I'm thankful he took the time to ...well, time my eyes.
I moved to the DC area and ended up with SEVERE allergy eyes -- started on Claritin and Patanol. Claritin stopped working, so now I take Zyrtec.
I'm also using CPAP therapy for Sleep Apnea and sometimes I swear my mask mut leak air into my eyes...

So for the last few weeks or so my vision has been very blurry. Went to the eye dr last week (also concerned my "tastebuds" had changed, wanted to see if it was eyes before I worried about Neurological issues). Dr says my vision hasn't changed, so my glasses are fine, but the dry eye has apparently gotten bad enough to affect my vision (but the eyes look healthy otherwise).

So today is day #4 of Restasis. Still using Systane when I remember (part of the issue) and I've ordered the tranquil eyes goggles, and the onion goggles for excessive computer work at home. Dr says the Restasis might help because of my body's tendency to be inflammed. She also says that I can wear my contacts for very special occasions, but probably shouldn't if I don't feel the need. They're horribly uncomfortable anyway My husband so *badly* wants me to have Lasik, but I'm not a candidate due to both dry eyes and pupils that dilate too large.

So anyway...sorry for the long post. I wasn't expecting to tell the whoooole story, it just came out.
Need to say -- Rebecca, THANK YOU for this site. I've been cruising around on it for more than a week now and I finally decided to sign up.
I need to get off the computer now cause I think my eyes are becoming like raisins

[Silverlady]

Wondering

Did the rheumatologist test you for Sjogren's? There are specific blood tests that sometimes will show positive or negative. In some cases people are seronegative. Meaning they have it, but it doesn't show in bloodwork. I'm one of those people. I was diagnosed at Mayo Clinic in Rochester, Minn. If you are experiencing tastebud changes, have you seen a dentist?

Billye

[shoebox]

Before I saw the Rheum, I was seeing a Neurologist (who I *requested* to refer me to a Rheumatologist). He tested me for RA (which I've been tested for loads of times, always negative). I don't have a family history of AI issues.
I actually went to see the Rheum with the intention of being checked for AI conditions, but as soon as he tested me for Fibro, he basically stopped because I "screamed" Fibro. Since then, they've done blood work every few months, but I don't know if anyone has actually looked for Sjogrens. Every visit to the Rheum I seem to be presenting a "new" inflammation issue. When I ask about most things, though, they say "Well that is probably a result of the Fibromyalgia".

So how are you holding up? Have you gotten a routine down-pat that makes a difference for you? Up till now I pretty much ignored the dry eyes but I don't want serious issues later (especially the way my body is crazy) so I've suddenly picked up trying to resolve it.

As for the tastebud thing -- seems to be back to normal now. For awhile everything tasted salty. I was just at the dentist about 6 weeks ago, but that was before the weird taste thing happened. Since it happened around the same time as fuzzy vision started, I was concerned about med side effects, neurological issues (like my migraines or something) or some "new" issue.

[Silverlady]

Everyone does

Yes,
my routine is pretty much the same now since Dec. Some days are better, some are worse. I don't know how you "ignore" your dry eyes. There is no way I can do this. My eyes are what pretty much guide the way I live my life, (that and neuropathy). No way to ignore either of them. When you see your rheumie, ask for the test for Sjogren's. It's a simple blood test if you aren't seronegative.

Billye

[shoebox]

Heehee..."ignore" as in forget to put drops in -- and seriously pay for it at night. Or I blink and it burns and I ignore it as if it's "just another place that hurts" instead of giving my eyes the care they need.

[Eli]

Hi!
Sorry to hear about your situation. Glad that you finally signed up though!
A couple of things jumped out at me while reading your story.
One: why does you husband want you to have LASIK so badly? Tell him you're not gonna! It would only bring more pain and worry into your life. Also, did you know that many antihistamines (allergy medications) can cause/exacerbate dry eye? Check with your doctor as I believe there are several that are less likely to cause dryness.

Best wishes,

Eli

[shoebox]

Thanks for the welcome

I think my husband wants me to get Lasik so I won't have to deal with glasses/contacts anymore. He wants my eyes "fixed". I've managed to convince him that I'm just not a candidate -- so he can't wait for them to "come up with an alternative"!. He's typically very supportive -- he just wants the best for me, and it took awhile to get him to realize that Lasik is NOT the best!
I do know that antihistamines can dry you out -- more than just the eyes, even -- but I don't have a choice as long as I live here. Without the allergy meds my eyes are dry as well as itchy. When I first got here, I struggled for months, rubbing my eyes -- they got so sore. Doubt we'll live here forever, so there's light at the end of the tunnel!
My tranquileyes arrived yesterday. LOVE them. Only hard part is that CPAP Mask I have to wear -- the goggles go under it, so I can't take them off without removing my mask and all. That, and I look like an alien at night I really like that they hold my lids closed, and that if they do come open, it's in a moist environment.

Anyway, Thanks for your support!!

[Maxime]

Don't do lasik

My mother had moderated dry eyes, and lasik has ruined her life. Her life is miserable, she has pain and discomfort all day long. We've been like this for 6 months now. So don't do it.
Maxime