Newbie's Update!!

[tmarie0183]

I had only posted one message before and now feel the need to update.  I left off with a neuro telling me that nothing was wrong with me and it was all in my head, and that I probably didn't even have sjogren's.  I have many symptoms of sjogrens and bloodwork was positive for SSa, and so I had the red thread test done to my eyes and those results were consistent with sjogrens.  I feel better now knowing that I know what I am battling against and it's not just all in my head.  I have been on plaquenil now for probably 3months or so, and I did start taking effexor which I believe has also helped. (It sucked in the beginning because it caused my already dry mouth to become even more dry)  I am starting to slowly feel like my old self minus annoying symptoms like the dry eye/mouth, and I can't be on my feet for too long until they start hurting.  I also get a lot of ringing in my ear and feeling like my ear is clogged.  Does anyone else get this??  What about really bad pressure behind one of your eyes?  I don't know if this is related to sjogrens or to my migraines.  Any advice??   Thanks for listening!

[Wynter]

I just read both of your posts and understand how you feel. I get the bad pressure behind and under my eyes, which leads to headaches. Working in front of a computer all day doesn't help either. I asked the eye doc and neurologist about this and neither one of them had an answer. I gues since I have severe dry eyes (less that 2 on the test), but have 20/20 vision, then there is nothing wrong. Honestly, I attribute it to eye strain, which can cause headaches.

[Pooh]

tmarie,
Are you using any drops for the dry eyes?  As Wynter said, it could be just eye strain or it could be something totally different.

If you haven't seen an opthalmologist, please go. 

Pooh

[tmarie0183]

The pressure is always behind my right eye which is the eye that is drier, so that's why I was thinking it was related to the sjogrens.  I do use lubricant eye drops, but not everyday because I'm scared that I will become too dependent on them.  I wear contact lenses, and switch to my glasses when my eyes get really dry (I hate wearing glasses).  Hopefully I can continue with my contacts forever

[beverley]

Okay tmarie,

Get used to the eyedrops.  I have to use them all the time and you may hang on to your lenses if you get used to them.  I also use a gel at night (Lacrilube) which you can buy over the counter in the UK.  It is gungy, but I really know when I haven't used it.  The computer does play havoc with my eyes and I always use extra drops when I work on it.  I had a long period of my ears feeling blocked and my tinnitus varies according to how well I feel.  I also have very painful feet (osteoarthritis) and have a lot of problems finding comfortable shoes.  It is really difficult coming to terms with changes to your normal habits, but believe me that once you get used to a slightly new approach you will be able to lead a pretty normal life for a lot of the time.  I still teach and if you go to the 'What do you do for a living?' thread, you'll find that lots of people do manage to work in demanding jobs.  Others find that too challenging because they have lots of symptoms that are extremely difficult to control or function with.  We all vary greatly and you will find your niche eventually.

There is no shame in being dependent on drops or other medical aids - if they help you carry on and feel better then go for it!

Best wishes

Beverley

[ErinG]

I am also lucky in that I am still able to wear contacts.  My ophtho says my eyes have actually been retaining more moisture since starting to wear the Acuvue Oasys lenses.  I also use Restasis twice daily.  If you haven't seen an ophthalmologist yet, I think you should.  The only problem I've experienced using the lubricant drops is that they leave filmy residue on my contacts.  I usually use Optive preservative-free drops, which actually have left little residue on my lenses in comparison with others.  I also use Complete Blink-n-Clean drops when my lenses get filmy.