New here : ) Thinking of m.c. glasses...

[achyeyes]

Hi all!

I'm just so thankful to have found your forum!

(Sorry about the long post)

My eyes have been getting increasingly wonky, but the relative wonkiness seems to have sped up over the last seven months (health has prevented me from treating as of yet.) What life's like lately: Painful. Really bad photophobia (stomach-sickening, head-piercing pain, not completely ideal for living in Phoenix, AZ, lol,)--on a good morning I just squint and stay out of sunny rooms for a few hrs, on a bad day I walk into the kitchen wearing those glasses they give you when they dialate your eyes (only, over my Rx glasses.) Sometimes I'll wear these all day when the pain is bad. My vision's getting pretty shot (not fun driving, I recently made 4 passes past my destination before finding it--writing of all sizes, even street signs seems so small.) Then (ironically) I get the worst "eye-aches" at night (it feels like someone's trying to gouge my eyes out with their thumbs and won't stop.) Sitting in a dark room, even with my eyes covered, the pain still persists. They're also always scratchy, as if there were fine, moisture-sucking sugar under my eyelids (and being monsoon season here, the winds are walls of fine dirt and sand...another reason to stay indoors.)

The only reason I haven't seen an opthamalogist yet is because I have anemia (I may find out which kind this week, I guess it's pretty bad) and have heard that fixing this first might be important to my eyes.

The rheumatologist of my Rheumatoid Arthritis and Fibro (I've nearly 7-10 co-morbid auto-immune conditions) discovered, I think in January (by blood test,) that I've Sjorgren's., too. I've heard that the r.a. could contribute to the eyes, also? I've another one or two kinds of gland-drying, tissue-destroying, painful auto-immune diseases, Lichen Planus is one...it's severe in at least 3 places, I don't know if it plays in with the eyes (on the skin I think it's described as severe errosive liquifactive degeneration of basal cells being destroyed far faster than they can ever mature.) Basically, I don't know how many processes are going on with my eyes (for ex. I've been completely surgically menopausal for 14 years now, still I'm a lady in her 30's)

All of which brings me here I thought you guys might have insights that I have no idea about. All I know is it's all getting too intense for me and I'm looking for (hopefully) non-invasive solutions (I met a lady in the rheumy's office who just had plugs put in, she seemed pretty happy, but with all the A.I. conditions, my body tends to reject things dangerously. More things by the year.) I've been trying Optive drops, they aren't really great (then again, could I live anywhere more arid, lol? To think I left a super-humid state for AZ ) Happily, I read somewhere here on the boards that there are glasses, the m.c. glasses, that can be ground to Rx and do double duty for the Sjorgren's (imp. as last year I tried having glasses made--they made glasses 5 times to no avail--they were very painful fun house views, so none of them made it home with me.) I'm guessing the dryness *really* messes with vision when it's not addressed along with the Rx? But how exciting to think of glasses that could look great and feel amazing!

Essentially, could anyone here help recommend a few things?:

• Anyone know any good specialty opthamologists here in the Phoenix area?
  
• Good drops for day, good ointments for night?
  
• Glasses ? (I wear progressives with a small punch up for readers--so I'm thinking...is there anything out there that would work both ways--as clear, indoor lenses and as eye darkening shades for the photophobia?)
  
• Anything for the headaches? : )

Actually, anyone who could tell me *any* of those things would be... : ) ... not only "smarter than the average bear" but much smarter than the average doctor (and extremely appreciated by me! : ) )

Thanks!

[calli66]

Glad you found the forum here---it has been a great help to me.

I also have Sjogren's and Hashimoto's (hypothyroid). Another forum I love is Sjogren's World http://sjogrensworld.org/ and the forum there http://www.sjogrensworld.org/forums/

My dry eye is my worst symptom, but it's much better now than when I joined this forum in 2005 (I was still wearing contacts then, and didn't know about the Sjogren's or thyroid problem). I have taken Plaquenil and thyroid meds since 2007 and those have really helped with my energy level, concentration, fatigue, etc.

See if there's a Sjogren's support group in your city. You can search at http://www.sjogrens.org/
This helps you trade ideas, self-help tips, local (good) doctors, etc.

Sjogren's leads to inflammation in and around the eyes, so for some of us, plugs aren't the answer, since they trap the inflammatory substances in the eyes and make things worse. "Eye Spa" treatment----cleaning with OcuFoam and Q-tips, keeping everything clean----can really reduce the level of inflammatory products sitting in and around the eyes.

Photophobia could be a symptom of more severe internal eye inflammation, among other things, so it's important that your doctor pay attention to that symptom right away (my opinion---I'm not a doctor or anything). In the meantime, try wearing fit-over sunglasses. I found a good brand at Walgreen's called Solar Shield---they come in various sizes and styles, are polarized, and really help shield from sun and drafts. I wear mine constantly when I'm outdoors.

Vision wonkiness: dryness can make your vision worse----yes! But it's important to rule out other things by having a thorough eye exam. I have had vitreous detachments in both eyes and have myopic degeneration, as well as the beginnings of macular degeneration. I don't know if any of it is connected to the Sjogren's inflammation, but I go to a retina specialist twice a year.

Headaches---you could try cold packs. Warm compresses are good, but cold can help too.

There aren't any "perfect" solutions for clear, indoor moisture chamber glasses. Some here are trying MEGS http://www.seefit.net/ or even GuardDogs fit-overs (which come with several lenses, including clear---but are bulky). I don't have the link---but you can search here for it.

Since I'm in New Mexico, I understand about the heat, brightness, and dry climate. Do you have air conditioning? The old-fashioned swamp cooler works better, since it adds, rather than removes, moisture from the air.

Gels work better than ointments for nighttime use (again, my opinion). You can read the threads here on that topic---there are many! And read about Gels and other products in the Dry Eye Zone encyclopedia, if you haven't done that yet. An eye mask or TranquilEyes goggle really helps---that and the gel help to heal and calm the eyes overnight.

Some of us take Omega-3 oils or flax oil, which support eye health, but they don't provide immediate relief.

Daytime drops---the over-the-counter ones help, but the relief is temporary. Use the preservative free vials, if possible. I use FreshKote and Dwelle, which you can read about here---they have worked the best for me, but they take some getting used to (they leave residue, and sometimes sting). Severe dry eye is hard to treat with the usual OTC drops.

I'm sure others here can add more of what works for them.

Sorry I can't suggest any AZ doctors. I will say, thought, that a friend of mine with Sjogren's (and many other AI conditions---she's on disability) finally gave up on dry New Mexico and moved to the coast of Oregon this summer. She says it's "like heaven" there---she feels so much relief---and it's not only her eyes, it's her throat, and lymph glands---even her mobility has improved. So a move to a cooler, more humid climate might be something you could consider.

Calli